Hubbie here.
Saturday after my conversations with Lewy I had a fairly productive day. I prepared a delicious ground beef quiche for dinner and then I began work on Lewy Daddy’s closet. We must be honest with ourselves, Lewy is going to have no use for Daddy’s clothes. Pauline and I are honest about such things so Saturday afternoon I began the exploration of the closet. I don’t know how else to bring it to you except as a blow by blow account……….that will make sense later.
First let me say that old men are lousy at hanging up clothes. No shirts were buttoned and there were more pants on wire hangers than there were shirts on pants hangers. But there was cool stuff as well. Very cool stuff. There was a map of southern China and one of Taiwan printed on opposite sides of a piece of linen. We (meaning Pauline) noted that the printing was to save space and the linen was to avoid the map being damaged by water. The maps were marked “RESTRICTED” but we figure they are pretty safe now. (Just to be sure let’s keep that between us. Nobody tell Dick Cheney.)
I found enemy plane identification cards from WWII. They depicted Japanese planes. There were two views of each plane…….first..OMG they are coming at me….and second…..OMG they are on top of me. The cards formed a deck of playing cards but they had been pasted in a scrap book. Most of the cards had been torn out of the scrap book and only two pages remained. Upon seeing the cards Pauline remembered them and had to confess that as a child she had played with the cards so she was the one who tore them out of the book.
I found certificates where Daddy crossed the international date-line………….twice. I found copies of his discharge papers. (Several copies in fact. He always was a savvy camper.) There was his uniform name tag from the Navy. There was his dogtag. It was a simple single thin metal plate; nothing like what you see in the movies. Very cool stuff. All of the Navy stuff plus a couple of watches and a pocket knife went to Lewy’s grandson. Grandson is a “the third” so we call him Trey. Trey served in the first Gulf War. Daddy was very proud. He was even happier when Trey returned.
I cleaned up the Yamaha keyboard. I loosened the strings a bit on the three acoustic guitars to relieve the stress on the neck. Daddy was a self taught picker and quite good. I know enough chords to play a few songs (that’s a requirement to live in Nashville) so I’ll hang on to one guitar.
So I hung up all the shirts and straightened the pants. I sorted out the thirty-seven pairs of suspenders, eight pairs of shoes (yes one pair was white) and the four cowboy string ties. That stuff will go to Goodwill. If they ship it to a Florida store it will probably sell well. Where else are you going to sell a pair of dress short pants. I swear, pressed black wool shorts with bright brass fittings. The only thing missing was they weren’t cuffed. There was a tuxedo shirt too. I’ll bet you money he wore them together.
Sorting out the boxes of photo albums and souvenirs of cruses and vacations I came across a box that puzzled me. It was not a box from the distant past. It was obviously fairly new, not more than three or four years old. It was 4” by 10” by 12”. Large letters on the outside read “Vacuum Therapy System.”
“What in the world it this?”
“It must be medical but I’ve never seen it before.”
I turned the box in my hands.
ACME medical technologies, inc.
I opened the box and found what appeared to be a traveling case. Inside the case was a large plastic cylinder and a toothpaste-like tube. The label on the tube read “Personal Lubricant”.
WHAT!?!
I opened the instruction booklet and…………..OMG.
It’s a penis pump!!!!
Seven thousand thoughts surged through my mind. Sixty-five “Oh My God”s. Two Thousand Seven Hundred “Has it been used?”s. Three Thousand Four Hundred and Thirty “ Did it get washed afterward?”s. And then another Eight Hundred and Five “Oh My God”s.
Then I started laughing.
Of course I shared the story and the contents of the box with Pauline and we both laughed.
Then I got curious.
No not that way!!!!! OMG!!!! I’d have to sterilize it first.
No. It was this way. I Googled for the product in question and I found it.
The “ACME External Battery Vacuum Therapy System is available for sale NOW ON SALE WITHOUT A PRESCRIPTION!”
No Prescription Required!............You mean I don’t have to have my Doctor say that it is OK to have a machine su….uhhhmmmmmmmm………..perform oral sex on me!???!!...............A MACHINE!!!!.....................a battery operated vacuum cleaner!!!…………a nutbuster!!
Thank God………….I thought maybe Bush had finally gone too far.
I learned on the website that the contents of the box included the pump, the lubricant, and an instructional video. Hmm! There was no video in the box in the closet. Hmmm.. I never saw Daddy use ours or any other VCR. Someone else had to have done it for him. A girlfriend? No doubt a close girlfriend. Maybe even a little kinky since she seems to have kept the video. Hey! Maybe after watching the instructional video they didn’t need the pump.
There was other fun info on the site.
“new combined pump and cylinder for one-hand operation”
Well, after all, that is the traditional method.
“sleek, angled shape for better, more comfortable grip”
Comfort is important. Not so sure about that angle thing though.
“new contoured cylinder with finger grooves for easy transfer of tension ring”
Tension Ring? Tension Ring!!?? Transfer of Tension Ring!!??!!!!???
Trust me when I say I that I will not be trying this machine on for size. The instructions are as follows:
Step 1
A tension ring is loaded on the vacuum cylinder. The cylinder is then placed over the penis.
Step 2
Hand pump removes air from cylinder to create a vacuum. This causes the penis to become fully engorged and erect.
Step 3
Tension ring is slid to base of penis to maintain erection, vacuum is released and the cylinder is removed.
Read step 3 again……………. Yeap that’s what it said. The penis in question is now a balloon. Do you suppose that when the balloon is released it makes that raspberry noise of a balloon flying around the room?
Hmmm………you know….that might be the best part.
Then there was this rather disturbing thing on the web site. I know they sell other products but this seemed really out of place…………………………………………………
"Save 10% on a great present for Mom on Mothers Day!" Complete with flowers and butterflies.
4 comments:
Anonymous said...
That was by far the best one. Now I got images that just won't leave my, pardon the pun, head.
Hubbie's P.C.
pearose said...
I know there is yet another Dick Cheney joke in there somewhere, but I'm backing waaayyy off!
I wonder if Goodwill will ship that to Florida, too. Perhaps as an accessory with the tux shirt and dress shorts?
Anonymous said...
Stella here. This is why I spend my time discarding. Oh! The trail we leave behind. I have been discarding things and also, as with Mr Daddy's war time cards, I have found that I did not keep the valuable and sentimental mementoes that S/SGT. Edward sent home. I was taking care of a family and if a child found a treasure to play with, I didn't stop her or him. Too bad. I am trying to get things in a semblance of order for the kids to enjoy. I hope I keep and throw away the proper things. I can only imagine the things Edward would have accumulated had I gone on before him. Our children would probably have had a field day going through his closet!
Karen said...
Hi Pauline and Hubby,
Karen here. Don't forget to keep the discharge papers to show the funeral home. Then you get a free flag to drape his casket. When my dad died, as I recall, there was also a veteran's benefit toward the funeral/casket. I think it might have been $200.00. 13 years ago, so don't remember perfectly. Dad was a tail gunner on a B-24 out of New Guinea. He also crossed the International Date Line on a ship when he came home. I always liked the certificate with the illustration of King Neptune on it. Mom contacted the VFW and 3 or 4 old veterans came to Dad's graveside service and fired off a salute after a recording played taps. It was very touching. Mom sent the VFW $100.00 donation afterward. I think dad was a member, though he never went to the lodge.
Funny essay, Hubbie, on the vacuum pump.
Hang in there. I think of the three of you each day.
Saturday Morning with Lewy
Hubbie here.
It was Saturday morning and Pauline was sleeping late. Actually I slept late too but she is sleeping later. I made coffee. While pouring the water in the pot I made eye contact with Lewy. It was Lewy because his voice was loud and clear.
“Do You have a pocket Knife?”
“Yeah. Somewhere. Why?”
“Didn’t you hear it?”
“Hear what?”
“That fart”
“The fart?”
“Yeah.”
“No. I missed that one.”
“Well it was a long one.” Raising his arm above his head Lewy got a huge grin on his face and continued. “It started way over here” pointing to his right, “and wound up down the road way over there”, his arm stretched out in a long arc moving across to point out the window. “I was in June’s driveway at the time and she umm grumple zima duble non.”
“She what?”
Still grinning Lewy replied, “I’ll tell you about it next time.”
“OK. Want some water?”
“Yeah.” I went to get the water and Lewy called me back.
“You know we had two blow outs and then there weren’t no bricks left anymore.”
“Hmm. That’s too bad. I’ll go get the water.”
In the kitchen I got Lewy’s water and poured myself some coffee. I looked up and he had raised his bed sheet high in the air. He pulled it up and laid it down over his face. With one hand he washed his face with the sheet, groaning loudly the entire time. As I got back with his water he pulled the sheet down and pointed to the ceiling near the door.
“That was the frequent sound.”
“The frequent sound?”
“Yeah. It sounds just like that. You can just imagine that coming on and running for five minutes.”
“Yeah. Here’s your water.” While Lewy drank from the turkey baster I wondered if sometimes when he moans that, to him, the sound comes from outside himself. That would at least explain why it was a frequent noise. With one cup of water done, I went back to the kitchen for another. As I got back to Lewy’s bed a large truck went by on the road below the house.
“Someone’s here”
“Nah. It’s just a car on the road.”
“Up on the mountain?”
“Well, actually a little below us but …………close enough.”
“Nobody farted then.”
“I guess not.”
“Except for the beginner.”
“Yeah? Well they do need to practice. Have some more water.”
Lewy finished the water and I wiped his face. He looked at the towel and then at me.
“Is the end of that towel about half wet?”
“No but it could be. You want me to wet it for you?”
“No, I just wanted you to know in case you ran into it.”
“Thanks. I appreciate that.”
5 comments:
kddove said...
my louie (lucy) passed on this morning. 13 days away from being 18 years old.... gone on to doggie heaven, i suppose. can i go with her?
Hubbie said...
I am so sorry to hear that kddove. Even at that age it is tough to say good-bye. You must, however, stay here and, at some point, find another puppy to save and to love. Lucy would like that.
Anonymous said...
Stella here; Kdove I, too, am sorry to learn of your loss. It hurts, doesn't it? But my, so many wonderful memories. I do hope Mr Lewy's four legged friends will stay around with him for a while longer. I know you feel the same.
pearose said...
kddove,
So sad. My vet swore to me that my lost one would be at the Rainbow Bridge and I'm holding her to that, because I want to see my baby again. Hopefully, you'll see yours again, too. It makes the separation bearable. Fortunately, I have three best friends still to care about. I hope your pain eases quickly.
Pauline said...
Geez. I'm really sorry kddove. I still occassionally tear up over critters I had 30 years ago. Lucy is no longer in pain. At least there is that much.
It was Saturday morning and Pauline was sleeping late. Actually I slept late too but she is sleeping later. I made coffee. While pouring the water in the pot I made eye contact with Lewy. It was Lewy because his voice was loud and clear.
“Do You have a pocket Knife?”
“Yeah. Somewhere. Why?”
“Didn’t you hear it?”
“Hear what?”
“That fart”
“The fart?”
“Yeah.”
“No. I missed that one.”
“Well it was a long one.” Raising his arm above his head Lewy got a huge grin on his face and continued. “It started way over here” pointing to his right, “and wound up down the road way over there”, his arm stretched out in a long arc moving across to point out the window. “I was in June’s driveway at the time and she umm grumple zima duble non.”
“She what?”
Still grinning Lewy replied, “I’ll tell you about it next time.”
“OK. Want some water?”
“Yeah.” I went to get the water and Lewy called me back.
“You know we had two blow outs and then there weren’t no bricks left anymore.”
“Hmm. That’s too bad. I’ll go get the water.”
In the kitchen I got Lewy’s water and poured myself some coffee. I looked up and he had raised his bed sheet high in the air. He pulled it up and laid it down over his face. With one hand he washed his face with the sheet, groaning loudly the entire time. As I got back with his water he pulled the sheet down and pointed to the ceiling near the door.
“That was the frequent sound.”
“The frequent sound?”
“Yeah. It sounds just like that. You can just imagine that coming on and running for five minutes.”
“Yeah. Here’s your water.” While Lewy drank from the turkey baster I wondered if sometimes when he moans that, to him, the sound comes from outside himself. That would at least explain why it was a frequent noise. With one cup of water done, I went back to the kitchen for another. As I got back to Lewy’s bed a large truck went by on the road below the house.
“Someone’s here”
“Nah. It’s just a car on the road.”
“Up on the mountain?”
“Well, actually a little below us but …………close enough.”
“Nobody farted then.”
“I guess not.”
“Except for the beginner.”
“Yeah? Well they do need to practice. Have some more water.”
Lewy finished the water and I wiped his face. He looked at the towel and then at me.
“Is the end of that towel about half wet?”
“No but it could be. You want me to wet it for you?”
“No, I just wanted you to know in case you ran into it.”
“Thanks. I appreciate that.”
5 comments:
kddove said...
my louie (lucy) passed on this morning. 13 days away from being 18 years old.... gone on to doggie heaven, i suppose. can i go with her?
Hubbie said...
I am so sorry to hear that kddove. Even at that age it is tough to say good-bye. You must, however, stay here and, at some point, find another puppy to save and to love. Lucy would like that.
Anonymous said...
Stella here; Kdove I, too, am sorry to learn of your loss. It hurts, doesn't it? But my, so many wonderful memories. I do hope Mr Lewy's four legged friends will stay around with him for a while longer. I know you feel the same.
pearose said...
kddove,
So sad. My vet swore to me that my lost one would be at the Rainbow Bridge and I'm holding her to that, because I want to see my baby again. Hopefully, you'll see yours again, too. It makes the separation bearable. Fortunately, I have three best friends still to care about. I hope your pain eases quickly.
Pauline said...
Geez. I'm really sorry kddove. I still occassionally tear up over critters I had 30 years ago. Lucy is no longer in pain. At least there is that much.
Rollin' and Tumblin'
Lewy had been sleeping all day until just a few minutes ago, when he woke up and became very alert. He started talking to me, all in mumbled up jumble. I squirted his mouth, which he welcomes. It helps him talk a bit better. “Are you hungry?”
“No.”
“Are you thirsty?”
“No.”
“Don’t you want anything?”
“No.”
“How ‘bout if I get you something to drink?”
“No.”
I got him a bottle of Ensure, chocolate flavored. After he quickly took the entire bottle from the turkey baster, he said he had to spit.
OMG! My stomach! Hubbie is asleep…Ohhhhh…Daddy starts coughing up the phlegm. Hubbie had laid out several separate folds of toilet paper for such emergencies. I went through the entire stack. The phlegm just kept coming and coming. I would shut my eyes, tell him to spit and hold the paper. I could feel the warm globs through several layers…each time it seemed like the globs were getting bigger and bigger. I’m gagging. There comes a point where I have to go stand on the porch and breathe some fresh air.
After he thought he was through with that for a while he took some water and two spoons of yogurt with his pills crushed in them. Then more water to kill the bitter taste. During the drinking of the water Lewy said “You wouldn’t know it if you saw it.”
“What’s that?”
“The big magnet; the one that holds everything up.”
“The magnet?”
“Yeah, you’d have to be an engineer to be able to see it. There are all these particles, these things and they all go to it.” Everything goes to it”
“You mean the big magnet that makes everything fall?”
“Yeah.”
“You mean gravity?”
“Yeah, you can see it. It’s everywhere. The particles are everywhere too, all going to the magnet”. The particles all glow.”
“You can see gravity?”
“Yeah.” He looked at me and grinned real big. “Yeah, I can.”
“That’s cool…but it’s time to roll you over.”
Hubbie came over and we straightened out the pull sheet and the pee pads, changed Lewy’s diaper that now is just stuffed up under him to catch drainage. There is still some, but the antibiotic must be doing the job, the stench is almost gone. Only problem is, he is not eliminating.
I got on the gloves, left hand first, and pulled the plug to insert the irrigation gun. “Water” squirted out. Ha Ha! I had on my gloves! You did not get me this time. For some reason though, I thought I could set down the open tube while I went to get the gun and the saline solution….WRONG! It was draining out all over the pee pads. I got the irrigation gun in the hole and started pushing. It was harder to push this time. When I got ¾ of the way down the tube, it sprayed back out at me. In this case, gloves did not matter…..
Again it was deemed time to roll him but his right foot and the sore was exposed, so I decided to peel off the bandage, clean the wound, and redress it. OK, Now It was time to roll him and he was saying he was hurting. Hubbie got on the side Daddy was facing and I stood on the receiving side.
Hubbie started to lift and roll. “Stop!” Catheter bag…Once I got that repositioned, then we started the roll again. “Stop.”
I noticed Daddy’s but was needing cream. So I got the zinc oxide cream that is so incredibly thick and smeared it all over Daddy’s butt.
“I need to shit.”
Hubbie responded “Well do it now.” Daddy responded with a series of farts. I responded by turning on the ceiling fan.
We waited a bit and nothing happened, so we rolled Daddy over and got the king size pillow up under him to keep him in place. I then cleaned and dressed the other foot, repositioned the catheter and Hubbie and I covered him up. He should be going to sleep soon. This episode of being awake was lasting pretty long for Lewy.
Hubbie went to bed; I was turning off lights and getting ready to go mess with the computer when Lewy announced “I got two!”
“You got to what?
“I got two!”….“I got two turds!” (in his best New Jersey accent).
“No.”
“Are you thirsty?”
“No.”
“Don’t you want anything?”
“No.”
“How ‘bout if I get you something to drink?”
“No.”
I got him a bottle of Ensure, chocolate flavored. After he quickly took the entire bottle from the turkey baster, he said he had to spit.
OMG! My stomach! Hubbie is asleep…Ohhhhh…Daddy starts coughing up the phlegm. Hubbie had laid out several separate folds of toilet paper for such emergencies. I went through the entire stack. The phlegm just kept coming and coming. I would shut my eyes, tell him to spit and hold the paper. I could feel the warm globs through several layers…each time it seemed like the globs were getting bigger and bigger. I’m gagging. There comes a point where I have to go stand on the porch and breathe some fresh air.
After he thought he was through with that for a while he took some water and two spoons of yogurt with his pills crushed in them. Then more water to kill the bitter taste. During the drinking of the water Lewy said “You wouldn’t know it if you saw it.”
“What’s that?”
“The big magnet; the one that holds everything up.”
“The magnet?”
“Yeah, you’d have to be an engineer to be able to see it. There are all these particles, these things and they all go to it.” Everything goes to it”
“You mean the big magnet that makes everything fall?”
“Yeah.”
“You mean gravity?”
“Yeah, you can see it. It’s everywhere. The particles are everywhere too, all going to the magnet”. The particles all glow.”
“You can see gravity?”
“Yeah.” He looked at me and grinned real big. “Yeah, I can.”
“That’s cool…but it’s time to roll you over.”
Hubbie came over and we straightened out the pull sheet and the pee pads, changed Lewy’s diaper that now is just stuffed up under him to catch drainage. There is still some, but the antibiotic must be doing the job, the stench is almost gone. Only problem is, he is not eliminating.
I got on the gloves, left hand first, and pulled the plug to insert the irrigation gun. “Water” squirted out. Ha Ha! I had on my gloves! You did not get me this time. For some reason though, I thought I could set down the open tube while I went to get the gun and the saline solution….WRONG! It was draining out all over the pee pads. I got the irrigation gun in the hole and started pushing. It was harder to push this time. When I got ¾ of the way down the tube, it sprayed back out at me. In this case, gloves did not matter…..
Again it was deemed time to roll him but his right foot and the sore was exposed, so I decided to peel off the bandage, clean the wound, and redress it. OK, Now It was time to roll him and he was saying he was hurting. Hubbie got on the side Daddy was facing and I stood on the receiving side.
Hubbie started to lift and roll. “Stop!” Catheter bag…Once I got that repositioned, then we started the roll again. “Stop.”
I noticed Daddy’s but was needing cream. So I got the zinc oxide cream that is so incredibly thick and smeared it all over Daddy’s butt.
“I need to shit.”
Hubbie responded “Well do it now.” Daddy responded with a series of farts. I responded by turning on the ceiling fan.
We waited a bit and nothing happened, so we rolled Daddy over and got the king size pillow up under him to keep him in place. I then cleaned and dressed the other foot, repositioned the catheter and Hubbie and I covered him up. He should be going to sleep soon. This episode of being awake was lasting pretty long for Lewy.
Hubbie went to bed; I was turning off lights and getting ready to go mess with the computer when Lewy announced “I got two!”
“You got to what?
“I got two!”….“I got two turds!” (in his best New Jersey accent).
How Slow am I?
Hubbie stayed home today, to help me out with Daddy. It turned out to be a good thing too. Summer, our nurse’s aide was back today after having been out for the funerals. She washed Daddy, shaved him and washed his hair. He was semi comatose the whole time. He couldn’t hold his eyes open.
The three of us used the Hoyer lift to lift Lewy out of the bed into the chair for a few minutes. He managed to tolerate sitting up just long enough for us to strip and remake his bed. We lifted him out of the recliner back onto the bed, and while adjusting his position Summer noticed and showed me where indeed Lewy was leaking out of his cathetered penis. Where he ripped the catheter out with the balloon still blown up he slit open the inside of his penis, no doubt the entire length and possibly back to the bladder. The pee is still very rank. Smells like a UTI to me.
So Summer called Nurse Goodbody to see what to do. There was the general clinical description over the phone. Nurse Goodbody would talk to the doctor and call me back. Summer instructed us to be sure to roll him completely over from left to right to center every two hours. His skin is breaking down again. The rolling bed was not enough to prevent him from putting pressure on all the same spots all the time. We wished Summer a better weekend, and she was on her way.
The Hospice counselor came by a bit later to sit and talk about Life, the Universe, and Everything. As we talked, the nurse called back with orders for me to irrigate Daddy’s bladder. I had watched her do it before so I kinda knew the routine. I was to go do it; and she would call back in 15 minutes to see how it went.
I went in and put a glove on my right hand. I pulled the little grey stopper out of the input tube, and pee (or something, I choose to think pee) squirted all over my left hand. Alrighty then. After washing up I put another glove on my right hand. Shows how inexperienced I am. No it didn’t squirt the second time, but I’m right handed so the hand with the irrigating gun was…duh in my right hand, and again my left is touching things that only a glove should touch.
I have managed to brush out his mouth, bathe, dress, feed him, wipe up blood, clean up shit and stinky pee, and irrigate his bladder, …but still the mucus in the throat just gags me. Today Lewy was barely awake, mostly non responsive, but coughing up the phlegm. Fortunately Hubbie can take it……I can’t. I just have to leave the room.
Lewy slept pretty solid until about 9 PM. When he woke up he said he did not want anything to eat or drink but ended up drinking a glass of grapefruit juice and eating an entire can of Bean with Bacon Soup that had been pureed and a half “cup” of butterscotch pudding. Normally I’m faster with the baster than Lewy is with swallowing, but because the soup was pretty thick, it was not coming up in the baster very fast. As I held the soup bowl close to Lewy, to minimize the drips, he raised his head ever so slightly stuck out his tongue and started to lick the outside of the bowl. I told him to hang on I was being slow.
He opened one eye, sort of gazed in my general direction and said… “You’re slower than stink off of shit.”
“Thank you very much.” – As I squirted his mouth full of soup.
He has taken to waving his hand back and forth to indicate “No”. He started this a year or more ago to the puppies to signal no to them. They never understood it. I guess our dogs speak regular English rather than sign language. Never the less Lewy uses this signal on us. Perhaps he hopes we are smarter than the dogs, but so far we too have ignored this command and continue feeding him. Perhaps it’s the mixed signals, waving no with his hand, while holding his mouth wide open - tongue extended - waiting for the next squirt from the turkey baster. That is until he drifts off into Lewy Land.
There is no eating or drinking in Lewy Land. Only sleep and hallucinations that he can not distinguish from each other.
I believe he is taking that next step down. I only wish I knew how many steps there are in this flight.
1 comments:
old friend said...
don't you just hate it when there are no words that are adequate to say all the things you want to say...that's me right now...
The three of us used the Hoyer lift to lift Lewy out of the bed into the chair for a few minutes. He managed to tolerate sitting up just long enough for us to strip and remake his bed. We lifted him out of the recliner back onto the bed, and while adjusting his position Summer noticed and showed me where indeed Lewy was leaking out of his cathetered penis. Where he ripped the catheter out with the balloon still blown up he slit open the inside of his penis, no doubt the entire length and possibly back to the bladder. The pee is still very rank. Smells like a UTI to me.
So Summer called Nurse Goodbody to see what to do. There was the general clinical description over the phone. Nurse Goodbody would talk to the doctor and call me back. Summer instructed us to be sure to roll him completely over from left to right to center every two hours. His skin is breaking down again. The rolling bed was not enough to prevent him from putting pressure on all the same spots all the time. We wished Summer a better weekend, and she was on her way.
The Hospice counselor came by a bit later to sit and talk about Life, the Universe, and Everything. As we talked, the nurse called back with orders for me to irrigate Daddy’s bladder. I had watched her do it before so I kinda knew the routine. I was to go do it; and she would call back in 15 minutes to see how it went.
I went in and put a glove on my right hand. I pulled the little grey stopper out of the input tube, and pee (or something, I choose to think pee) squirted all over my left hand. Alrighty then. After washing up I put another glove on my right hand. Shows how inexperienced I am. No it didn’t squirt the second time, but I’m right handed so the hand with the irrigating gun was…duh in my right hand, and again my left is touching things that only a glove should touch.
I have managed to brush out his mouth, bathe, dress, feed him, wipe up blood, clean up shit and stinky pee, and irrigate his bladder, …but still the mucus in the throat just gags me. Today Lewy was barely awake, mostly non responsive, but coughing up the phlegm. Fortunately Hubbie can take it……I can’t. I just have to leave the room.
Lewy slept pretty solid until about 9 PM. When he woke up he said he did not want anything to eat or drink but ended up drinking a glass of grapefruit juice and eating an entire can of Bean with Bacon Soup that had been pureed and a half “cup” of butterscotch pudding. Normally I’m faster with the baster than Lewy is with swallowing, but because the soup was pretty thick, it was not coming up in the baster very fast. As I held the soup bowl close to Lewy, to minimize the drips, he raised his head ever so slightly stuck out his tongue and started to lick the outside of the bowl. I told him to hang on I was being slow.
He opened one eye, sort of gazed in my general direction and said… “You’re slower than stink off of shit.”
“Thank you very much.” – As I squirted his mouth full of soup.
He has taken to waving his hand back and forth to indicate “No”. He started this a year or more ago to the puppies to signal no to them. They never understood it. I guess our dogs speak regular English rather than sign language. Never the less Lewy uses this signal on us. Perhaps he hopes we are smarter than the dogs, but so far we too have ignored this command and continue feeding him. Perhaps it’s the mixed signals, waving no with his hand, while holding his mouth wide open - tongue extended - waiting for the next squirt from the turkey baster. That is until he drifts off into Lewy Land.
There is no eating or drinking in Lewy Land. Only sleep and hallucinations that he can not distinguish from each other.
I believe he is taking that next step down. I only wish I knew how many steps there are in this flight.
1 comments:
old friend said...
don't you just hate it when there are no words that are adequate to say all the things you want to say...that's me right now...
No Summer Today
Today was a beautiful spring day. The redbuds, crabapples, dogwoods, and the cherry trees are all in full bloom. With the temperature in the upper 70’s, I opened all the windows to air out the house. Daddy was obviously warm, so I turned on the ceiling fan.
There was something not right. I was not sure what it was…the cat box was clean….garbage was not smelly…didn’t smell like a skunk…
The nurse’s aide came in Summer’s place today. I guess Summer is no doubt attending funerals today. As she walked up, she was admiring the large ornamental cherry out side Daddy’s window, all full of smiles…then she walked in the house…I saw her nose crinkle up….Humm...it wasn’t just me.
I knew Daddy was a bit stinky, but it had been since Friday since he was bathed and it had been a tad warm. As Audrey proceeded to bathe Daddy, we quickly discovered what the smell was. Even though he has in a catheter, he managed to pee all in is diapers. Enough so that the two pee pads under him were soaked and the sheets under him were wet.
I had noticed the catheter bag didn’t have much in it, but I could tell there was pee going down the tube…It never occurred to me that he could pee like that. Audrey called Nurse Goodbody. She will be here first thing in the morning to see what’s up with the peeing.
We did the roll him over routine to pull out all the soiled linens. OMG! The smell was awful! I turned the fan on high. I could not get to the trash pail fast enough and to the washing machine fast enough. It was truly awful.
Even with all the windows open and the fan on high, the smell lingered. There must be something else going on with his kidneys or bladder for pee to be that rank.
After his bathing and the immediate removal of the trash bag with the toxic waste in it, Audrey was gone and Lewy was semi comatose. He’s been that way all day today.
There was something not right. I was not sure what it was…the cat box was clean….garbage was not smelly…didn’t smell like a skunk…
The nurse’s aide came in Summer’s place today. I guess Summer is no doubt attending funerals today. As she walked up, she was admiring the large ornamental cherry out side Daddy’s window, all full of smiles…then she walked in the house…I saw her nose crinkle up….Humm...it wasn’t just me.
I knew Daddy was a bit stinky, but it had been since Friday since he was bathed and it had been a tad warm. As Audrey proceeded to bathe Daddy, we quickly discovered what the smell was. Even though he has in a catheter, he managed to pee all in is diapers. Enough so that the two pee pads under him were soaked and the sheets under him were wet.
I had noticed the catheter bag didn’t have much in it, but I could tell there was pee going down the tube…It never occurred to me that he could pee like that. Audrey called Nurse Goodbody. She will be here first thing in the morning to see what’s up with the peeing.
We did the roll him over routine to pull out all the soiled linens. OMG! The smell was awful! I turned the fan on high. I could not get to the trash pail fast enough and to the washing machine fast enough. It was truly awful.
Even with all the windows open and the fan on high, the smell lingered. There must be something else going on with his kidneys or bladder for pee to be that rank.
After his bathing and the immediate removal of the trash bag with the toxic waste in it, Audrey was gone and Lewy was semi comatose. He’s been that way all day today.
My Life with Bill Clinton
I don’t know why I think days like today are different, but for me, mentally anyway, they are. The only difference really is Hubbie is traveling over night. I have always enjoyed my “alone” time. Now days there is no alone time except when Lewy is sleeping.
So today, I thought I would finish up my office work early, get the trash taken out, do some house cleaning, then I could have some “me” time. All that was necessary was for Daddy to sleep. I noticed recently, that he seemed to sleep uninterrupted for about 24 hours if I gave him his Seroquel. I had even switched his dose to a half dose and was giving it to him at bedtime to assure a good nights sleep. So far it had worked every time.
But not today. This morning I feed him and gave him as much fluids as he would take; about a normal full day’s worth. Then I crushed his meds, including a full day’s dose of the Seroquel and fed them to him with some Banana Crème yogurt. Lewy has been awake all day.
Lewy has a special knack for waiting until I’ve started working on something, especially office work, to then start talking to me. Time after time I get up and go see what it is Lewy wants. Most of the time, he can’t recall why he hollered. Some times he insists that it was me that hollered for him.
This afternoon, while I was cleaning up in the kitchen, Lewy had me drop what I was doing to go stand by his bed to hear the question….”Ain’t that Bill Clinton standing there?”
I had to turn to look….
“No, Pappy, I don’t think so. The Hilldog has a tight leash on that puppy.”
“Well it sure looks like him.”
……“Yep, your right, he does look like Bill.”
Back to rule number 1. Never argue with a person with dementia. It is pointless. Hubbie takes it on a fun challenge. I get frustrated after about the second sentence.
I have fed Daddy a second time today, blended pork tenderloin and turnip greens, butterscotch pudding, and a root beer. Pretty yummy actually.
He has finally fallen asleep. Yeah! Me Time! Check y’all later.
4 comments:
Anonymous said...
I'm having to post on anonymous...can't seemt o get the pass word right for my ID?
Just wanted to say enjoy your "me" time Pauline, you deserve it.
Dee
Anonymous said...
After 40+ years of being married to someone who traveled, I did get used to Me Time also. His retirement was a challenge, but nothing compared to Lewy Time, in which 15 minutes of Me Time is about max. Yes, it is difficult to produce when interruptions come mid-sentence. Don't stress - we understand. It may help to realize that he really wants is your company, and misses the Together Time that you once had.
Di
I'm still having trouble with the password thing also.
pearose said...
Maybe you have discussed this subject, but Seroquel is a very controversial drug for dementia patients and has caused many problems for the elderly. Has your doctor talked to you about any of the side effects? It may be one of the reasons your Dad won't look to his right side to view the outdoors.
Just curious...
Sammie Jo Mitchell said...
Dee and Di;
I am sorry you are having issues with the comments. Blogger is acting up lately more than it normally does.
Have you tried clicking on the "Name/URL" button? You can then just type in any name you want. There should be no passwords on that button.
Thanks for reading and commenting.
So today, I thought I would finish up my office work early, get the trash taken out, do some house cleaning, then I could have some “me” time. All that was necessary was for Daddy to sleep. I noticed recently, that he seemed to sleep uninterrupted for about 24 hours if I gave him his Seroquel. I had even switched his dose to a half dose and was giving it to him at bedtime to assure a good nights sleep. So far it had worked every time.
But not today. This morning I feed him and gave him as much fluids as he would take; about a normal full day’s worth. Then I crushed his meds, including a full day’s dose of the Seroquel and fed them to him with some Banana Crème yogurt. Lewy has been awake all day.
Lewy has a special knack for waiting until I’ve started working on something, especially office work, to then start talking to me. Time after time I get up and go see what it is Lewy wants. Most of the time, he can’t recall why he hollered. Some times he insists that it was me that hollered for him.
This afternoon, while I was cleaning up in the kitchen, Lewy had me drop what I was doing to go stand by his bed to hear the question….”Ain’t that Bill Clinton standing there?”
I had to turn to look….
“No, Pappy, I don’t think so. The Hilldog has a tight leash on that puppy.”
“Well it sure looks like him.”
……“Yep, your right, he does look like Bill.”
Back to rule number 1. Never argue with a person with dementia. It is pointless. Hubbie takes it on a fun challenge. I get frustrated after about the second sentence.
I have fed Daddy a second time today, blended pork tenderloin and turnip greens, butterscotch pudding, and a root beer. Pretty yummy actually.
He has finally fallen asleep. Yeah! Me Time! Check y’all later.
4 comments:
Anonymous said...
I'm having to post on anonymous...can't seemt o get the pass word right for my ID?
Just wanted to say enjoy your "me" time Pauline, you deserve it.
Dee
Anonymous said...
After 40+ years of being married to someone who traveled, I did get used to Me Time also. His retirement was a challenge, but nothing compared to Lewy Time, in which 15 minutes of Me Time is about max. Yes, it is difficult to produce when interruptions come mid-sentence. Don't stress - we understand. It may help to realize that he really wants is your company, and misses the Together Time that you once had.
Di
I'm still having trouble with the password thing also.
pearose said...
Maybe you have discussed this subject, but Seroquel is a very controversial drug for dementia patients and has caused many problems for the elderly. Has your doctor talked to you about any of the side effects? It may be one of the reasons your Dad won't look to his right side to view the outdoors.
Just curious...
Sammie Jo Mitchell said...
Dee and Di;
I am sorry you are having issues with the comments. Blogger is acting up lately more than it normally does.
Have you tried clicking on the "Name/URL" button? You can then just type in any name you want. There should be no passwords on that button.
Thanks for reading and commenting.
Hard Morning
Our nurse’s aide did not appear today. Her best friend was killed in a motorcycling accident on Sunday, and she had a patient die on Sunday. I don’t know how Hospice workers deal with death all the time. It’s bad enough to have it in your professional day, but when it gets personal on top of the professional, it must be very rough going. I could never have enough intestinal fortitude to successfully function under such circumstances.
I’m not really functioning very well just having my own little set of issues. It seems so trivial to think of my situation. I’m lucky in so many ways. But my brain is doing weird things. I know I’m teetering on the edge of a bout with depression. So if you know what it is - can you stop it from happening? Or is it just going to happen if the current situation drags on?
Now I feel guilty for the “drags on” phrase. I do keep thinking of Dr. Cutie Pie, and hope for tomorrow. Then I feel guilty even more. It is a vicious spiraling whirlpool sucking me under.
Daddy announced today that he needed to take a crap. Fine. Perhaps I should try to hoist him up and let him sit on the potty chair. Lewy thought it was a good idea anyway….
I hooked up the lift pallet; unfortunately Daddy was not centered or properly positioned to have his rump positioned to where he could use the potty seat. Silly me, I lifted him pee pad, diaper and all. I tried cutting him a hole…No, that does not work. Don’t even bother trying. It just makes a mess of internal pee pad and diaper fuzz all over the place.
I lifted him back onto the bed and did the roll over routine. I got out the old diaper just in time to see my dear old Dad’s loose muscle anal opening flap like a cartoon when he let loose some… “Wind”.
I opened the window next to his bed. Thank goodness for warm days. More wind... Now all I needed was a breeze.
As I stood back waiting for Lewy to finish, I noticed that he had crapped himself a tiny bit. This was not particularly fresh either. It had clumped into tiny radiating lines of hard poo. I sprayed him with the butt cleaning fluid and wiped. Still more there. More spray, repeat wiping. As I was doing this for the 3rd time, Lewy asked…
“Did you find anything to eat?’
“EAT!?!”
“Yeah, Did you find anything you could chew on down there?”
“No.”
Lewy was still wanting to have a bowel movement, so I thought, why not now? I have the pee pad out and the diaper off. I repositioned the lift pallet so it would catch his butt in the proper position for sitting and thinking.
The only problem was, I missed the proper positioning. Imagine now, me bent over looking up under my Dad’s butt as he was sort of hanging through the business hole of the pallet, still saying he had to go... Mostly the Boys were scrunched up on one side and his cheeks were squeezed together. If he had gone, it would have been like a Venturi carborator...forcing so much through such a small opening under intense pressure... Lewy's butt kinda looked like a rotten cantaloupe that had caved in on one side…and turned blue.
Scratch that lift and sit idea. I lifted him back into bed and got him situated and comfortable. Within seconds he was asleep. It had been a hard morning.
5 comments:
pearose said...
Walk. Take Lila and Tweak out on leashes to train them for your upcoming city life routine and city walks. As you walk, feel your heart rate increase and your body respond to the challenge - it will make you feel ALIVE! Walking relieves the symptoms of depression. You live in a beautiful country setting that begs to be walked and enjoyed.
Take advantage of the time when the hospice crew is there and use home health services on the off days. Please. Do this for you.
Stella said...
You know, Pauline, I hang onto your every word and at first you made light of even the terrible things. Did I inadvertently drag you down by wanting/needing more? If that is true, then it is time for a change. The blog does not need to be about every move our Dear Mr Lewy makes, how about either writing once in a while or if the mood strikes, tell us what someone else in your life did that make you happy or another emotion. Remember how you felt? How you laughed? Or a teacher that did strange things, or something that happened on the way to church. I'm laughing now about a family who lived down the road from us. It was a family of three girls and one brother. Some of the things they did to that poor little boy... He had on a pair of white starched trousers... stiff as could be ... his mother wanted him to be pretty for the "Sword Drill". those girls told him if he sat in the car the pants would break. He walked the mile to church up and down the hills and around the curve and over the bridge. He did arrive in time with the giggling girls waiting for him. How cruel was that????!!!!
Pauline said...
Stella...How could you have possibly brought me down? It's not your butt I'm looking at ;-) I think we both are greatful for that...
I thought I had fairly successfully made light of a "dark" situation. ;-( Perhaps not.
I am fine. Some days are better than others. Thank you both for your concern, but really, I am fine. I'm mostly just stir crazy.
Stella said...
You didn't check me for pin worms with a piece of scotch tape and a flashlight, but if I ever need that done, I know who to send for. You're the Pro!
Pauline said...
LOL. I never knew that was how that was done! Good information to know. You just never know when that will come in handy.
Perhaps I should get me some tape and a flashlight and go seek out people who are scratchers...
Stella, U R 2 Funny...
I’m not really functioning very well just having my own little set of issues. It seems so trivial to think of my situation. I’m lucky in so many ways. But my brain is doing weird things. I know I’m teetering on the edge of a bout with depression. So if you know what it is - can you stop it from happening? Or is it just going to happen if the current situation drags on?
Now I feel guilty for the “drags on” phrase. I do keep thinking of Dr. Cutie Pie, and hope for tomorrow. Then I feel guilty even more. It is a vicious spiraling whirlpool sucking me under.
Daddy announced today that he needed to take a crap. Fine. Perhaps I should try to hoist him up and let him sit on the potty chair. Lewy thought it was a good idea anyway….
I hooked up the lift pallet; unfortunately Daddy was not centered or properly positioned to have his rump positioned to where he could use the potty seat. Silly me, I lifted him pee pad, diaper and all. I tried cutting him a hole…No, that does not work. Don’t even bother trying. It just makes a mess of internal pee pad and diaper fuzz all over the place.
I lifted him back onto the bed and did the roll over routine. I got out the old diaper just in time to see my dear old Dad’s loose muscle anal opening flap like a cartoon when he let loose some… “Wind”.
I opened the window next to his bed. Thank goodness for warm days. More wind... Now all I needed was a breeze.
As I stood back waiting for Lewy to finish, I noticed that he had crapped himself a tiny bit. This was not particularly fresh either. It had clumped into tiny radiating lines of hard poo. I sprayed him with the butt cleaning fluid and wiped. Still more there. More spray, repeat wiping. As I was doing this for the 3rd time, Lewy asked…
“Did you find anything to eat?’
“EAT!?!”
“Yeah, Did you find anything you could chew on down there?”
“No.”
Lewy was still wanting to have a bowel movement, so I thought, why not now? I have the pee pad out and the diaper off. I repositioned the lift pallet so it would catch his butt in the proper position for sitting and thinking.
The only problem was, I missed the proper positioning. Imagine now, me bent over looking up under my Dad’s butt as he was sort of hanging through the business hole of the pallet, still saying he had to go... Mostly the Boys were scrunched up on one side and his cheeks were squeezed together. If he had gone, it would have been like a Venturi carborator...forcing so much through such a small opening under intense pressure... Lewy's butt kinda looked like a rotten cantaloupe that had caved in on one side…and turned blue.
Scratch that lift and sit idea. I lifted him back into bed and got him situated and comfortable. Within seconds he was asleep. It had been a hard morning.
5 comments:
pearose said...
Walk. Take Lila and Tweak out on leashes to train them for your upcoming city life routine and city walks. As you walk, feel your heart rate increase and your body respond to the challenge - it will make you feel ALIVE! Walking relieves the symptoms of depression. You live in a beautiful country setting that begs to be walked and enjoyed.
Take advantage of the time when the hospice crew is there and use home health services on the off days. Please. Do this for you.
Stella said...
You know, Pauline, I hang onto your every word and at first you made light of even the terrible things. Did I inadvertently drag you down by wanting/needing more? If that is true, then it is time for a change. The blog does not need to be about every move our Dear Mr Lewy makes, how about either writing once in a while or if the mood strikes, tell us what someone else in your life did that make you happy or another emotion. Remember how you felt? How you laughed? Or a teacher that did strange things, or something that happened on the way to church. I'm laughing now about a family who lived down the road from us. It was a family of three girls and one brother. Some of the things they did to that poor little boy... He had on a pair of white starched trousers... stiff as could be ... his mother wanted him to be pretty for the "Sword Drill". those girls told him if he sat in the car the pants would break. He walked the mile to church up and down the hills and around the curve and over the bridge. He did arrive in time with the giggling girls waiting for him. How cruel was that????!!!!
Pauline said...
Stella...How could you have possibly brought me down? It's not your butt I'm looking at ;-) I think we both are greatful for that...
I thought I had fairly successfully made light of a "dark" situation. ;-( Perhaps not.
I am fine. Some days are better than others. Thank you both for your concern, but really, I am fine. I'm mostly just stir crazy.
Stella said...
You didn't check me for pin worms with a piece of scotch tape and a flashlight, but if I ever need that done, I know who to send for. You're the Pro!
Pauline said...
LOL. I never knew that was how that was done! Good information to know. You just never know when that will come in handy.
Perhaps I should get me some tape and a flashlight and go seek out people who are scratchers...
Stella, U R 2 Funny...
Getting it Done
I have not posted in a couple of days, it seems. Maybe it’s been only one. It’s hard for me to tell what day it is sometimes on here. You write on one day but post the next. Perhaps it’s just getting harder to find something to say.
Lewy sleeps all day and all night. At least the last couple of days when he has been awake, he has been hungry and thirsty. It seems like he is taking in so much more food and fluids until you actually add it up. It just seems like a lot compared to the nothing he takes in on “bad” days.
I’ve taken to giving him his regular pills, which includes Seroquel at night. I’ve noticed that his normal meds just knock him out….All this time…3 years or so now…perhaps; I’ve just been putting him to sleep every day by giving him what the Drs. ordered. Who the Hell knows….
It’s very frustrating on so many levels that I am (we all are) dealing with the dementia and a long slow death, but that we have no clue about these drugs. Just like that gynecologist told me, before he almost killed me with drugs…”don’t be a silly woman, take the pills…”So I know from first hand experience, drugs and Drs are not necessarily what they are cracked up to be.
But this time it’s not my body, and I can’t feel what they are doing to Lewy. Lewy did refuse food for a while on the grounds it was making him drunk. No doubt it was the meds. I quit giving him his meds with his food and he quit complaining.
Several of my girl friends have come by to see me lately. I must be exhibiting the outwards signs of social neediness. One of them, a high school classmate also has her Mother to care for. (She is in early stages of dementia.) When she came by, she stopped at Daddy’s bedside and stroked his hair and his forehead ever so gently. She leaned over looked him straight in the eyes and talked to him. I stood in awe of her ability to communicate to Daddy who she was. He was fixated on her. He watched her every move.
Then my friend leaned over Daddy kissed him on the forehead and said “I love you.”
He said “I love you” back.
It was so simple. So easy. Perhaps my friend (also named Pauline) was just showing me the way.
Perhaps she was standing in for me. Getting it done for me. At least I heard those 3 little words, even if he was looking at her.
1 comments:
Stella said...
And who's to say, in his state of mind, that he did not think it was you? Or that it was meant for you? I believe it was meant for you. A person cannot love another unless he/she feels love all around. He knows he is loved, you have made sure of that, so he loves in return. He does love you even if he, as my mother did, chokes on the words to you.
Lewy sleeps all day and all night. At least the last couple of days when he has been awake, he has been hungry and thirsty. It seems like he is taking in so much more food and fluids until you actually add it up. It just seems like a lot compared to the nothing he takes in on “bad” days.
I’ve taken to giving him his regular pills, which includes Seroquel at night. I’ve noticed that his normal meds just knock him out….All this time…3 years or so now…perhaps; I’ve just been putting him to sleep every day by giving him what the Drs. ordered. Who the Hell knows….
It’s very frustrating on so many levels that I am (we all are) dealing with the dementia and a long slow death, but that we have no clue about these drugs. Just like that gynecologist told me, before he almost killed me with drugs…”don’t be a silly woman, take the pills…”So I know from first hand experience, drugs and Drs are not necessarily what they are cracked up to be.
But this time it’s not my body, and I can’t feel what they are doing to Lewy. Lewy did refuse food for a while on the grounds it was making him drunk. No doubt it was the meds. I quit giving him his meds with his food and he quit complaining.
Several of my girl friends have come by to see me lately. I must be exhibiting the outwards signs of social neediness. One of them, a high school classmate also has her Mother to care for. (She is in early stages of dementia.) When she came by, she stopped at Daddy’s bedside and stroked his hair and his forehead ever so gently. She leaned over looked him straight in the eyes and talked to him. I stood in awe of her ability to communicate to Daddy who she was. He was fixated on her. He watched her every move.
Then my friend leaned over Daddy kissed him on the forehead and said “I love you.”
He said “I love you” back.
It was so simple. So easy. Perhaps my friend (also named Pauline) was just showing me the way.
Perhaps she was standing in for me. Getting it done for me. At least I heard those 3 little words, even if he was looking at her.
1 comments:
Stella said...
And who's to say, in his state of mind, that he did not think it was you? Or that it was meant for you? I believe it was meant for you. A person cannot love another unless he/she feels love all around. He knows he is loved, you have made sure of that, so he loves in return. He does love you even if he, as my mother did, chokes on the words to you.
Stage Seven Blues
Hubbie here.
I see by the ol’ clock on the computer that is 8:34 AM. It’s Saturday morning (Caturday for those of you who read LOLCATS) and the rest of the house is still asleep. My body stays on “get up and go to work” time most weekends and I can’t sleep really late. So it’s just me and the cardinal that likes to bang her head on the office window every morning. Is there bird dementia? Don’t know. I am glad that Lewy’s version doesn’t include throwing himself into the window every fifteen seconds. The bird is annoying enough and though Lewy has lost weight he still outweighs the bird by at least 150 pounds.
Long time readers know that I don’t post as much as I used to. (Funny. It seems like a long time but it’s been less than 4 months.) Stage seven LBD is just not funny. There are moments. This morning I made coffee and Lewy made noise. I approached and he had is eyes almost open. I asked if he wanted anything.
“Yeah I need a quart of water.”
“OK. Would you like me to check your oil too?”
I smiled. Lewy stared. When I got back with the water he was sound asleep.
The curtain falls and time passes.
Lewy called and has now had the glass of water plus a glass of diet coke and a glass of buttermilk. He was very specific about the latter.
“Not sweet milk. Buttermilk!”
“Yes, Sir.”
Sweet milk, for those of you not around here, is whole milk. Old time southerners only believe in sweet milk and butter milk. Low fat milk is does not come from a cow. And Soy milk? Well that is obviously a sign of the End Of Time. In fact, I believe that if you look closely in some of Bosch’s paintings some of the demons are drinking soy milk. I have been allergic to milk fat all my life so to me they all taste like water with mucous added. The only difference is the ratio of water to mucous.
I now pause for Pauline to get her stomach out of her throat after reading that last bit.
------------
During the pause the dogs asked to go out, so we did. Pauline is no longer in bed so she is either in the shower or she has had her own private rapture. Knowing her religious bent I’m betting heavily on the former. Now where was I? Oh yeah.
Late stage LBD just doesn’t lend itself to humor the way the middle stages do. Lewy still has a way with words .
“I need some laundry over here!”
But they tend to be just random statements
“I’m trying to get this harness off.”
Not something you can build a story around
“Why do I always get this f***ing damned ol’ dodge?”
I thought that one was a reference to a car but Pauline assures me that it is a financial deal.
I do write some serious musings and messages but they tend to be for Pauline’s eyes only. It is up to her if she wishes to share them; maybe in the book version. I wrote one piece that was basically a collection of jokes and gave that one to her. It was titled A Priest, A Rabbi and A Lewy Walk Into A Bar. You will notice that you have not read that piece thus proving that Pauline is not only a pretty good writer but a Pauline is a wise editor as well. I’ll try and conjure up an image from the past to share with you; something to provide a break from the stage seven blues. In the mean time I leave you with this. It’s not a joke. It’s a true story. So I’m told.
I rear-ended a car this morning.
So there we were alongside the road and slowly the driver gets out of the care and ……………you know how you just get soooo stressed and life seems to get funny?
Well, I could not believe it!! ……….he was a dwarf!
He Stormed over to my car, looks up at me and says. “I AM NOT HAPPY!!”.
So I looked down at him and said, “Well, which one are you then?”
That’s when the fight started.
1 comments:
pearose said...
You're too funny for words, so I'll just sit here and laugh at your wit.
I see by the ol’ clock on the computer that is 8:34 AM. It’s Saturday morning (Caturday for those of you who read LOLCATS) and the rest of the house is still asleep. My body stays on “get up and go to work” time most weekends and I can’t sleep really late. So it’s just me and the cardinal that likes to bang her head on the office window every morning. Is there bird dementia? Don’t know. I am glad that Lewy’s version doesn’t include throwing himself into the window every fifteen seconds. The bird is annoying enough and though Lewy has lost weight he still outweighs the bird by at least 150 pounds.
Long time readers know that I don’t post as much as I used to. (Funny. It seems like a long time but it’s been less than 4 months.) Stage seven LBD is just not funny. There are moments. This morning I made coffee and Lewy made noise. I approached and he had is eyes almost open. I asked if he wanted anything.
“Yeah I need a quart of water.”
“OK. Would you like me to check your oil too?”
I smiled. Lewy stared. When I got back with the water he was sound asleep.
The curtain falls and time passes.
Lewy called and has now had the glass of water plus a glass of diet coke and a glass of buttermilk. He was very specific about the latter.
“Not sweet milk. Buttermilk!”
“Yes, Sir.”
Sweet milk, for those of you not around here, is whole milk. Old time southerners only believe in sweet milk and butter milk. Low fat milk is does not come from a cow. And Soy milk? Well that is obviously a sign of the End Of Time. In fact, I believe that if you look closely in some of Bosch’s paintings some of the demons are drinking soy milk. I have been allergic to milk fat all my life so to me they all taste like water with mucous added. The only difference is the ratio of water to mucous.
I now pause for Pauline to get her stomach out of her throat after reading that last bit.
------------
During the pause the dogs asked to go out, so we did. Pauline is no longer in bed so she is either in the shower or she has had her own private rapture. Knowing her religious bent I’m betting heavily on the former. Now where was I? Oh yeah.
Late stage LBD just doesn’t lend itself to humor the way the middle stages do. Lewy still has a way with words .
“I need some laundry over here!”
But they tend to be just random statements
“I’m trying to get this harness off.”
Not something you can build a story around
“Why do I always get this f***ing damned ol’ dodge?”
I thought that one was a reference to a car but Pauline assures me that it is a financial deal.
I do write some serious musings and messages but they tend to be for Pauline’s eyes only. It is up to her if she wishes to share them; maybe in the book version. I wrote one piece that was basically a collection of jokes and gave that one to her. It was titled A Priest, A Rabbi and A Lewy Walk Into A Bar. You will notice that you have not read that piece thus proving that Pauline is not only a pretty good writer but a Pauline is a wise editor as well. I’ll try and conjure up an image from the past to share with you; something to provide a break from the stage seven blues. In the mean time I leave you with this. It’s not a joke. It’s a true story. So I’m told.
I rear-ended a car this morning.
So there we were alongside the road and slowly the driver gets out of the care and ……………you know how you just get soooo stressed and life seems to get funny?
Well, I could not believe it!! ……….he was a dwarf!
He Stormed over to my car, looks up at me and says. “I AM NOT HAPPY!!”.
So I looked down at him and said, “Well, which one are you then?”
That’s when the fight started.
1 comments:
pearose said...
You're too funny for words, so I'll just sit here and laugh at your wit.
TGIF
It was a bueatiful spring day today. Daddy’s bed sits in front of the living room windows where he has a view of the yard, the woods and the near field. Lewy might actually enjoy the view if he would ever turn his head that way and look out. Even when someone suggests to him that he should, he just won’t do it. Stubbornness? Parkinsonian issues? I sure don’t know, but it is strange he will never look over to his right.
Perhaps it’s because of the things flying over his bed. The ceiling people apparently are pretty interesting. They are always up to something. Always mischief. They like the ceiling fan.
After the slime assault, Lewy settled down somewhat and drank a good bit of water and agreed to eat. A very large meal of 1 egg and the nub end of a baked potato – mashed up with gravy was the fare along with grapefruit juice and Ensure. Yummy;…at least Lewy was eating.
And then the spewing began again. I got him to hold a roll of toilet paper to pull off some as he needed it to spit on, then set a trash can right beside where he hand naturally rests. With the roll in his hand Lewy could not find the toilet paper. When he finally give up looking for it, he would raise the entire roll up to his mouth and wipe the globules on the roll. I don’t think he ever hit the trash can, but somehow having it there made me feel better.
He is in there now coughing up mass quantities of phlegm. The sound of it gurgling in his lungs and throat makes my stomach do flips. I stuck my finger up his butt and dug out shit. But just the thought of plegmn makes me green around the gills.
My girlfriends came over as expected. It was so nice to sit down and visit with someone else. I found myself yakking away a bit too much. It shows I need a tad more outside interaction. Someone to talk to that can formulate a sentence. I’m at the point where there is an easy path into depression. But having been there done that, I recognize the signs and believe that with effort I can hang on just as long as Lewy can. But beating back depression is a long long tough row to hoe.
You spend years getting to the bottom, and some how expect to climb out over night. I’m not doing the mood altering drugs. This sucks. It’s sad. I’m sad. I’m gonna cry a lot. There’s nothing funny about stage 7 LBD. There’s nothing to joke about at all. In stages 4, 5, and 6 laughing came easy and often, because the Lewyisms were at the least quite entertaining. There was not so much misery.
I think about Dr. Cutie Pie, saying if it were his father he would hope for tomorrow. And I find I do. I hope for tomorrow…not today…but tomorrow…because
After all; tomorrow is another day. (Sorry, I couldn’t help it,…and Frankly my dears, I don’t care if you give a damn)
…TGIF…
3 comments:
pearose said...
There is no way the people who care about you are going to let you slide into a depression. I'm glad it is Spring - that will help you. Ask for help when you need it. Even having a home health service out during the off-Hospice days will help you a great deal. Do what you need to do and ask help from others.
This is the toughest part of the toughest job in the world. I am so sorry that you're having to deal with such anguish.
old friend said...
((((((hugs))))) and giggles! We always have the best laughs....talk to you soon...I've been down that grey road and it sucks...we'll take a different fork...get ready, your sides are gonna hurt from laughing
Stella said...
This is not good. What can I offer from afar? Hmmm. Hubbie at one time offered you "time out" so you could run. Nothing beats running. Run until you forget why you are running and then return. Tired but refreshed. At least that is the way it is supposed to work. One child of mine was going through a bad time and she had trouble leaving for the gym in the afternoon but she lived where she could park her car and leave a child, entertaining himself, while she ran to get a new [badly needed] lease on life. One day she was returning, with tears streaming down her cheeks when she heard her son calling to her, "C'mon, Mom you can do it". That has become a mantra in our family, when things get hard. "C'mon, Pauline, you can do it" Go for a run or go outside down the street and sit. I am sending a big "Thank You" to that fun loving husband of yours.
Perhaps it’s because of the things flying over his bed. The ceiling people apparently are pretty interesting. They are always up to something. Always mischief. They like the ceiling fan.
After the slime assault, Lewy settled down somewhat and drank a good bit of water and agreed to eat. A very large meal of 1 egg and the nub end of a baked potato – mashed up with gravy was the fare along with grapefruit juice and Ensure. Yummy;…at least Lewy was eating.
And then the spewing began again. I got him to hold a roll of toilet paper to pull off some as he needed it to spit on, then set a trash can right beside where he hand naturally rests. With the roll in his hand Lewy could not find the toilet paper. When he finally give up looking for it, he would raise the entire roll up to his mouth and wipe the globules on the roll. I don’t think he ever hit the trash can, but somehow having it there made me feel better.
He is in there now coughing up mass quantities of phlegm. The sound of it gurgling in his lungs and throat makes my stomach do flips. I stuck my finger up his butt and dug out shit. But just the thought of plegmn makes me green around the gills.
My girlfriends came over as expected. It was so nice to sit down and visit with someone else. I found myself yakking away a bit too much. It shows I need a tad more outside interaction. Someone to talk to that can formulate a sentence. I’m at the point where there is an easy path into depression. But having been there done that, I recognize the signs and believe that with effort I can hang on just as long as Lewy can. But beating back depression is a long long tough row to hoe.
You spend years getting to the bottom, and some how expect to climb out over night. I’m not doing the mood altering drugs. This sucks. It’s sad. I’m sad. I’m gonna cry a lot. There’s nothing funny about stage 7 LBD. There’s nothing to joke about at all. In stages 4, 5, and 6 laughing came easy and often, because the Lewyisms were at the least quite entertaining. There was not so much misery.
I think about Dr. Cutie Pie, saying if it were his father he would hope for tomorrow. And I find I do. I hope for tomorrow…not today…but tomorrow…because
After all; tomorrow is another day. (Sorry, I couldn’t help it,…and Frankly my dears, I don’t care if you give a damn)
…TGIF…
3 comments:
pearose said...
There is no way the people who care about you are going to let you slide into a depression. I'm glad it is Spring - that will help you. Ask for help when you need it. Even having a home health service out during the off-Hospice days will help you a great deal. Do what you need to do and ask help from others.
This is the toughest part of the toughest job in the world. I am so sorry that you're having to deal with such anguish.
old friend said...
((((((hugs))))) and giggles! We always have the best laughs....talk to you soon...I've been down that grey road and it sucks...we'll take a different fork...get ready, your sides are gonna hurt from laughing
Stella said...
This is not good. What can I offer from afar? Hmmm. Hubbie at one time offered you "time out" so you could run. Nothing beats running. Run until you forget why you are running and then return. Tired but refreshed. At least that is the way it is supposed to work. One child of mine was going through a bad time and she had trouble leaving for the gym in the afternoon but she lived where she could park her car and leave a child, entertaining himself, while she ran to get a new [badly needed] lease on life. One day she was returning, with tears streaming down her cheeks when she heard her son calling to her, "C'mon, Mom you can do it". That has become a mantra in our family, when things get hard. "C'mon, Pauline, you can do it" Go for a run or go outside down the street and sit. I am sending a big "Thank You" to that fun loving husband of yours.
Ectoplasmic Residue
It is well established in our household that I will gag at almost any bodily fluid; especially those slimy gooey types. I’m gagging as I write. Yes gagging, literally, not figuratively.
As I approached Lewy to say good morning, I found him lying in a pool of “Ectoplasmic Residue” that had been deposited through the night. It covered the entire portion of his mid face ran down over the right side of his entire head covering his ears and hair in the clear stringy goo. It was pooled at his shoulders and ponded in large glops all over his pillow.
My first swallow of my morning coffee was not going down. Oh no… not this time…My natural gag reflex went into full swing. I was bent over at the hips head hanging down almost to my knees, my stomach started cramping with the result of dry heaving. For me this wretching continues yet still, over just the re-imagining the sight of it as I type. For Hubbie, he knew that the clean up duty would fall to him. He finds it extremely gross, but at least he can breathe through it all.
I had to leave the room. That’s all there is to it. If Hubbie were not here, I would have to call Summer, the nurse tech, to drop by first thing before she starts her day. She would understand. She witnessed me almost loose my cookies over nothing more than the spit from brushing his “teeth” (insert Tennessee joke that is “tooth” –almost true – he has 4). I wasn’t even expecting to gag over that - but it happened. Summer stood there thinking she was going to have to scrape me up off the floor just from a bit of sudsy stringy spit.
Bless Hubbie. He announced that he knew it was his job, yet he asked me to tell him what he was about to encounter as he was preparing to leave for work. He should know I can’t speak the words of goo without gagging through it. But the questions…Where? How much? What? The beginning of payback is in the questions…oh my stomach! Deep breath….breathe……breathe…
That was not what I was intending to write about today. But then….I can’t recall now what it was. In my brain slimy body goo takes precedence over all other matters.
Today I expect a couple of girl friends to come visit. For those of you that marked “I have no Lewy” on our poll a few weeks back…if you know some one with a Lewy; go see them. They can’t get out to see you. Their home has become their prison. Just as my home has become my prison. Yes, for good behavior I do get out on weekends (thank you Hubbie), but still it is a 24/7 sentence to have a late stage Lewy living in your house. There are no vacations, no running to the store, no spontaneous drives in the country. Even walking out to the garage is equivalent to leaving him home alone.
As far as Lewy is concerned if I’m not in eyeball range he will start hollering for me, just to see if someone is here. He can’t remember from one minute to the next that I’m in the office working or in the bathroom showering. Every minute is brand new. Just like a toddler.
We figure other than his speech; Lewy is at about 6 months old. He can no longer feed himself, and does not understand the mechanics of feeding. He blows the food out spraying it everywhere. The food must be mush and spoon fed to him. He gets the bib, and no way does he get to hold the spoon or the plate or his own glass. It would be slung across the room within seconds….. Now there- that is a difference in Lewy and a 6 month old. Lewy can, and will, throw things across the room. Way across the room.
Lewy can no longer walk. The interest in doing it is there, but the legs are not strong enough to support his weight. And his mind is so far gone, that like a 6 month old, he does not have the mental ability to figure out logically what is going on around him. When you watch babies, their eyes move all around like they are seeing things that are not there. So does Lewy. Only I know he is seeing something. Just what is another question altogether.
1 comments:
old friend said...
so happy for you to have visitors for yoself today, Pauline! Enjoy, laugh (deeply), and giggle! I'll be thinking on ya'll.
As I approached Lewy to say good morning, I found him lying in a pool of “Ectoplasmic Residue” that had been deposited through the night. It covered the entire portion of his mid face ran down over the right side of his entire head covering his ears and hair in the clear stringy goo. It was pooled at his shoulders and ponded in large glops all over his pillow.
My first swallow of my morning coffee was not going down. Oh no… not this time…My natural gag reflex went into full swing. I was bent over at the hips head hanging down almost to my knees, my stomach started cramping with the result of dry heaving. For me this wretching continues yet still, over just the re-imagining the sight of it as I type. For Hubbie, he knew that the clean up duty would fall to him. He finds it extremely gross, but at least he can breathe through it all.
I had to leave the room. That’s all there is to it. If Hubbie were not here, I would have to call Summer, the nurse tech, to drop by first thing before she starts her day. She would understand. She witnessed me almost loose my cookies over nothing more than the spit from brushing his “teeth” (insert Tennessee joke that is “tooth” –almost true – he has 4). I wasn’t even expecting to gag over that - but it happened. Summer stood there thinking she was going to have to scrape me up off the floor just from a bit of sudsy stringy spit.
Bless Hubbie. He announced that he knew it was his job, yet he asked me to tell him what he was about to encounter as he was preparing to leave for work. He should know I can’t speak the words of goo without gagging through it. But the questions…Where? How much? What? The beginning of payback is in the questions…oh my stomach! Deep breath….breathe……breathe…
That was not what I was intending to write about today. But then….I can’t recall now what it was. In my brain slimy body goo takes precedence over all other matters.
Today I expect a couple of girl friends to come visit. For those of you that marked “I have no Lewy” on our poll a few weeks back…if you know some one with a Lewy; go see them. They can’t get out to see you. Their home has become their prison. Just as my home has become my prison. Yes, for good behavior I do get out on weekends (thank you Hubbie), but still it is a 24/7 sentence to have a late stage Lewy living in your house. There are no vacations, no running to the store, no spontaneous drives in the country. Even walking out to the garage is equivalent to leaving him home alone.
As far as Lewy is concerned if I’m not in eyeball range he will start hollering for me, just to see if someone is here. He can’t remember from one minute to the next that I’m in the office working or in the bathroom showering. Every minute is brand new. Just like a toddler.
We figure other than his speech; Lewy is at about 6 months old. He can no longer feed himself, and does not understand the mechanics of feeding. He blows the food out spraying it everywhere. The food must be mush and spoon fed to him. He gets the bib, and no way does he get to hold the spoon or the plate or his own glass. It would be slung across the room within seconds….. Now there- that is a difference in Lewy and a 6 month old. Lewy can, and will, throw things across the room. Way across the room.
Lewy can no longer walk. The interest in doing it is there, but the legs are not strong enough to support his weight. And his mind is so far gone, that like a 6 month old, he does not have the mental ability to figure out logically what is going on around him. When you watch babies, their eyes move all around like they are seeing things that are not there. So does Lewy. Only I know he is seeing something. Just what is another question altogether.
1 comments:
old friend said...
so happy for you to have visitors for yoself today, Pauline! Enjoy, laugh (deeply), and giggle! I'll be thinking on ya'll.
You are Just A....
Never have a serious conversation with a person with Dementia. Especially if you are like me and tend to want to take them seriously. I’ve been struggling with saying my goodbyes to Daddy. Do I say them to him when he is as close to being Daddy as possible, or wait and just talk to Lewy?
Every time I give him food or liquids or go to his bedside, I try looking deep into his eyes to see who’s inside and practice my speech. I have progressed to the point I can now get through the first line without crying. Maybe by tomorrow I will be able to get through the second line.
Yesterday, or the day after the hospital run, Lewy was in full force. I could not calm him down or convince him that he needed to try to rest a bit. I’m not sure why I think he needs his rest. He sleeps 23+ hours a day, most days. What I’d really like is a visit from Dr. Cutie Pie to talk to Lewy and yell me what he really thinks. It’s so rare to find someone that might actually know something. (I bet y’all were thinking I’d like a visit from Dr. Cutie Pie for myself…no…no thanks…I’ve got the best I could ever have with Hubbie. And he is already house trained. Not many other husbands would go where he has gone and deal with the dementia the way he has.)
But back to practicing my speech. Every time I walked over to him I started in the process like maybe my mouth would actually open and the words would come out. Stubborn words, they just don’t come. How do you say those things to someone who has never said them to you? I was trained well by my Dad…never open up…never say what you think…never leave yourself open to attack…or rejection. So that has been my life. I’ve always feared the rejection. Its always the rejection. I can deal with attacks, but having been told how my brother was the favorite of us two, and with actions from both parents that supported that notion, it’s hard not to recognize the Big Rejection. The one from the parents, the one you never recover from.
So now I am here trying to over come this enormous hurdle of expressing my feelings…
I had thought perhaps yesterday while we were alone, that maybe I could work up the nerve to walk over to him and say what I need to say. I took him some juice. Then I tried the yogurt. Still nothing is happening, I just cannot do it. This feels like The Great Battle, the battle between Good and Evil, the last battle of the war. This war, unlike other wars, ends with everyone winning or everyone loosing. I try to imagine everyone winning, with me saying those impossible words and Daddy responding positively and perhaps maybe saying at least three of those words back. But I know my Dad. He will go to his death before he says anything of that nature to me. So I must be prepared for the possibility that if I can get my speech out that he will reject me one last and final time.
This morning I went in to give him some juice. He said he had something to tell me.
“You….are…the only one…” Here it is I thought…my mind raced… if he says it what shall I say? “You are the only one…that has come to visit….”
Visit?
“You are the only one, except…then he mumbled through some words …”the Coloreds”… and then some other unintelligible words.
“Coloreds?” Yvonne was a black skinned lady. Ever since she started coming over (but now replaced by Summer) he has had dreams about a black lady... ...he has several times lately, brought up “Coloreds” as his generation referred to black folks when they were being polite…
I think he must have done something in his youth to the black nurse he encountered (if she is real, and not a Lewy manifestation) during WWII that he has regretted his whole life. I’ve never heard any stories, but he probably would not have told on himself anyway…Never leave your self open…just what Daddy taught me.
I do know that having been reared by a red neck Tennessee Hillbilly and a North Louisiana back woods poor white mother, that if I ever used the “N” word, my teeth would have been knocked through the back of my head.
But I digress. I was trying to get out those unspeakable words and hope that some might return from Daddy that I could cherish the rest of my life. This is beginning to sound like Christmas, all the hopes and expectations, just to be disappointed in some one or something every year.
Even so, I was trying to find my spine and get in there to talk to him.
Then he called out “DADDY…DADDY! DADDY!!!!” He’s been asking for his Dad a lot lately. I think he is 17 or 18 years old working in the ship yards again. He is always worried about different pieces of steel.
I went to see about him. No, he did not want anything…No he was not hungry…No not thirsty…No not cold…
Then he said a few mumbly words…I went over to see what he was saying. Then it came out perfectly clear…
“I ought to just smack the Hell out you.”
“What? What did I do?” Was this Lewy talking to someone else?
No, it was Daddy talking to me. He was mad at me because I would not get him out of the bed, because I always had to have what I wanted.
“You are always trying to unnumunumin…” “You never unumunummin…” You are just a umnumnumun….”
I’m not sure what he was meaning, other than it was directed at me, and it was hostile.
4 comments:
3rd Wife said...
Relationships between parents and kids are like a kaleidoscope..always changing. Sometimes beautiful, sometimes just muddled.
I have a problem with the "3 words" as well, at least in regards to my parents. Sometimes I can write them in a card so that they can be read in my absence. But I can rarely say them aloud. It is such a sharp contrast to the relationship between myself and my own kids. I tell them I love them daily, and they do the same.
I think about those 3 words alot, and wonder how much I will beat myself up for not saying them aloud when I had the chance. I suspect that there will be quite a bit of self-abuse when the time comes.
Say the words..it doesn't matter whether you are talking to daddy or to Lewy. Know that you can't control his response, that you can only control your actions. Then rest a little easier knowing that you did it.
Stella said...
Oh, you dear, dear child. I want to hold you and hug you. Of all the stories you have confided to us, this is the saddest. We don't do things for praise. We tend to our family members because it is the right thing to do. For now, that has to be enough. You have done the right thing for someone you love. Maybe you were not a "perfect child" growing up---how many of us were?---but you have grown into a person everyone should be proud to have for a daughter. If you have not shown your love and obeyed the Commandment, "Honor your Father...." then it can't be done. Stay strong and for get the "talk".
old friend said...
powerful message, Pauline! This is about you now though and the window for Daddy to come visiting may never be opened again. You just have to do what you feel is right in your soul....for you. You've loved him through the worst ...the evidence of that is all around. And then look around at all those who love you and grab ahold
That's my .02 cents!
pearose said...
Your Dad was raised without being told he was loved - no doubt. I think he has had the same struggle you are having now. He's tried to show you through actions - remember the bike, the first driving lesson and the invasion into you and your first husband's child marriage when you first stayed in their house? Love isn't words, it's actions to reinforce those feelings. He and your Mom brought you up to show those actions to others. He's told you all his life through his actions. The words aren't as powerful as the actions, but they're nice to hear.
Anger is present in dementia. Who wouldn't be angry about losing their mind in those windows of 'normalcy' that become less and less? It's not your Dad, it's Lewy doing the talking and the thinking most of the time. Your Dad feels safe with you so don't confuse Lewy with your Dad.
You will NOT be rejected by your father when you go up to him. If he balks, say it louder and stronger - he may feel a little uncomfortable, but the words will be understood. It is a basic human need to feel loved - so the rejection you fear is based on your version of life as a little girl who could not compete with her brother for her parents' love. Maybe they felt the need to treat him differently because he was needier in that way. You may have seemed more independent than your brother. You were the strongest between the two of you and your parents knew that.
For your own sake, don't project silence as rejection - it won't come easily for him, either. He may not answer you as Lewy, but your Dad is in there, somewhere.
Practice while he's sleeping.
Every time I give him food or liquids or go to his bedside, I try looking deep into his eyes to see who’s inside and practice my speech. I have progressed to the point I can now get through the first line without crying. Maybe by tomorrow I will be able to get through the second line.
Yesterday, or the day after the hospital run, Lewy was in full force. I could not calm him down or convince him that he needed to try to rest a bit. I’m not sure why I think he needs his rest. He sleeps 23+ hours a day, most days. What I’d really like is a visit from Dr. Cutie Pie to talk to Lewy and yell me what he really thinks. It’s so rare to find someone that might actually know something. (I bet y’all were thinking I’d like a visit from Dr. Cutie Pie for myself…no…no thanks…I’ve got the best I could ever have with Hubbie. And he is already house trained. Not many other husbands would go where he has gone and deal with the dementia the way he has.)
But back to practicing my speech. Every time I walked over to him I started in the process like maybe my mouth would actually open and the words would come out. Stubborn words, they just don’t come. How do you say those things to someone who has never said them to you? I was trained well by my Dad…never open up…never say what you think…never leave yourself open to attack…or rejection. So that has been my life. I’ve always feared the rejection. Its always the rejection. I can deal with attacks, but having been told how my brother was the favorite of us two, and with actions from both parents that supported that notion, it’s hard not to recognize the Big Rejection. The one from the parents, the one you never recover from.
So now I am here trying to over come this enormous hurdle of expressing my feelings…
I had thought perhaps yesterday while we were alone, that maybe I could work up the nerve to walk over to him and say what I need to say. I took him some juice. Then I tried the yogurt. Still nothing is happening, I just cannot do it. This feels like The Great Battle, the battle between Good and Evil, the last battle of the war. This war, unlike other wars, ends with everyone winning or everyone loosing. I try to imagine everyone winning, with me saying those impossible words and Daddy responding positively and perhaps maybe saying at least three of those words back. But I know my Dad. He will go to his death before he says anything of that nature to me. So I must be prepared for the possibility that if I can get my speech out that he will reject me one last and final time.
This morning I went in to give him some juice. He said he had something to tell me.
“You….are…the only one…” Here it is I thought…my mind raced… if he says it what shall I say? “You are the only one…that has come to visit….”
Visit?
“You are the only one, except…then he mumbled through some words …”the Coloreds”… and then some other unintelligible words.
“Coloreds?” Yvonne was a black skinned lady. Ever since she started coming over (but now replaced by Summer) he has had dreams about a black lady... ...he has several times lately, brought up “Coloreds” as his generation referred to black folks when they were being polite…
I think he must have done something in his youth to the black nurse he encountered (if she is real, and not a Lewy manifestation) during WWII that he has regretted his whole life. I’ve never heard any stories, but he probably would not have told on himself anyway…Never leave your self open…just what Daddy taught me.
I do know that having been reared by a red neck Tennessee Hillbilly and a North Louisiana back woods poor white mother, that if I ever used the “N” word, my teeth would have been knocked through the back of my head.
But I digress. I was trying to get out those unspeakable words and hope that some might return from Daddy that I could cherish the rest of my life. This is beginning to sound like Christmas, all the hopes and expectations, just to be disappointed in some one or something every year.
Even so, I was trying to find my spine and get in there to talk to him.
Then he called out “DADDY…DADDY! DADDY!!!!” He’s been asking for his Dad a lot lately. I think he is 17 or 18 years old working in the ship yards again. He is always worried about different pieces of steel.
I went to see about him. No, he did not want anything…No he was not hungry…No not thirsty…No not cold…
Then he said a few mumbly words…I went over to see what he was saying. Then it came out perfectly clear…
“I ought to just smack the Hell out you.”
“What? What did I do?” Was this Lewy talking to someone else?
No, it was Daddy talking to me. He was mad at me because I would not get him out of the bed, because I always had to have what I wanted.
“You are always trying to unnumunumin…” “You never unumunummin…” You are just a umnumnumun….”
I’m not sure what he was meaning, other than it was directed at me, and it was hostile.
4 comments:
3rd Wife said...
Relationships between parents and kids are like a kaleidoscope..always changing. Sometimes beautiful, sometimes just muddled.
I have a problem with the "3 words" as well, at least in regards to my parents. Sometimes I can write them in a card so that they can be read in my absence. But I can rarely say them aloud. It is such a sharp contrast to the relationship between myself and my own kids. I tell them I love them daily, and they do the same.
I think about those 3 words alot, and wonder how much I will beat myself up for not saying them aloud when I had the chance. I suspect that there will be quite a bit of self-abuse when the time comes.
Say the words..it doesn't matter whether you are talking to daddy or to Lewy. Know that you can't control his response, that you can only control your actions. Then rest a little easier knowing that you did it.
Stella said...
Oh, you dear, dear child. I want to hold you and hug you. Of all the stories you have confided to us, this is the saddest. We don't do things for praise. We tend to our family members because it is the right thing to do. For now, that has to be enough. You have done the right thing for someone you love. Maybe you were not a "perfect child" growing up---how many of us were?---but you have grown into a person everyone should be proud to have for a daughter. If you have not shown your love and obeyed the Commandment, "Honor your Father...." then it can't be done. Stay strong and for get the "talk".
old friend said...
powerful message, Pauline! This is about you now though and the window for Daddy to come visiting may never be opened again. You just have to do what you feel is right in your soul....for you. You've loved him through the worst ...the evidence of that is all around. And then look around at all those who love you and grab ahold
That's my .02 cents!
pearose said...
Your Dad was raised without being told he was loved - no doubt. I think he has had the same struggle you are having now. He's tried to show you through actions - remember the bike, the first driving lesson and the invasion into you and your first husband's child marriage when you first stayed in their house? Love isn't words, it's actions to reinforce those feelings. He and your Mom brought you up to show those actions to others. He's told you all his life through his actions. The words aren't as powerful as the actions, but they're nice to hear.
Anger is present in dementia. Who wouldn't be angry about losing their mind in those windows of 'normalcy' that become less and less? It's not your Dad, it's Lewy doing the talking and the thinking most of the time. Your Dad feels safe with you so don't confuse Lewy with your Dad.
You will NOT be rejected by your father when you go up to him. If he balks, say it louder and stronger - he may feel a little uncomfortable, but the words will be understood. It is a basic human need to feel loved - so the rejection you fear is based on your version of life as a little girl who could not compete with her brother for her parents' love. Maybe they felt the need to treat him differently because he was needier in that way. You may have seemed more independent than your brother. You were the strongest between the two of you and your parents knew that.
For your own sake, don't project silence as rejection - it won't come easily for him, either. He may not answer you as Lewy, but your Dad is in there, somewhere.
Practice while he's sleeping.
It's Just A Hard Way to Go
When I got up this morning I was in a rush. The hospice regulars were coming over plus the counselor and a social worker. They had heard about the blog and wanted to come see it. Although they were supposed to come out anyway, I was a bit excited that they were interested.
As you might expect I’m in a get up, get dressed, get the house in order frenzy. I went over to check on Daddy and saw where Lewy had ripped out the catheter sometime in the night. There was blood everywhere. No pee, just blood. OMG! My mind goes into a mild panic.
Its 7:30 and the phone is ringing. Summer, our new nurse tech that replaced Yvonne was wondering if I would prefer she come on early or wait until her last call, since she lives very near us. No brainer….EARLY! I explained to her what had happened. She is actually a nurse, but is for whatever reason doing the tech work so I figured she could take care of the catheter.
No, well not really she said. She could tell me what to do, and I could do it, but she was not allowed to do such stuff. OK. I can take it. I’m tough. Sure Come on.
Summer arrived in no time. She came in and started looking at Daddy’s penis and all the blood. The decision was made to clean him up first. Her normal cleaning takes about 45 minutes. This time it was almost 2 hours. She had me get ice to put on him, then wet rags into the freezer to pull out nicely chilled to wrap him up to prevent swelling. She sopped and sopped the blood. It just kept pouring out. After about 8 ice rags it slowed down enough to wrap Lewy’s man hood up in a pee pad cut down to size and wait for the nurse. Summer called her and prepped her for the afternoon festivities.
Nurse Goodbody arrived about an hour later. With her were her implements of catheter insertion. She cleaned Lewy’s penis a bit and the blood was still flowing. Lewy was miserable. I had started the pain meds on him before Summer got there and was squirting him every hour on the hour all morning. He was still in agony. Nurse Goodbody inserted a new catheter. Blood poured through it; enough to fill the bag almost half full. It was loaded with long stringy tissue and blood clots. So much so that it quickly became blocked, and we decided to go for a second new catheter.
This one was being difficult. It just did not want to do right. She felt it was not fully inserted but was not completely sure. She brought with her several bottles of Saline Solution to flush his bladder. One by one she emptied the bottles, 400-500-cc’s into Lewy’s bladder. You could literally see his belly rise from the extra water. But nothing was coming out.
Nurse Goodbody gave me a choice. I could continue to irrigate every other hour or we could call an ambulance.
I went to get my shoes and socks. There was no way if he is blocked from peeing that I’m letting her go without dealing with it. She called the Hospice Doctor on call, then the ambulance service, and then the receiving hospital, and had it all set up in minutes. It would have taken me forever.
The ambulance arrived about an hour later and we played chase through downtown interstate traffic. Loads of fun. These dudes go 85 in 55 zones without lights…I’m more of a 57 miler myself, but anyway here we went.
We arrived at one of the large downtown not for profit hospitals and within 5 minutes I was back in the room with Daddy. They had taken him in, plugged him into all the monitors and had 3 nurses in the room when I arrived.
The head nurse came in and took over. She explained that they were going to insert a 3way catheter and irrigate him. We needed to get the blood out of his bladder. With just a few flicks of her wrist she had the one Nurse Goodbody had inserted out and this new 3 way in. As soon as she put the 3000cc bag of saline to it, the blood poured out the discharge tube.
Then came in Dr. Cutie Pie. Small framed, angular chin, with spiked blonde hair…maybe 32 years old…I’ve come to expect ER doctors to be a pain in the ass. Perhaps we have been going to the wrong ER…Dr. Cutie Pie was attentive to Daddy and was nice enough to take the time to talk to me about what had happened.
Then he asked about Daddy’s general health. He was looking at Lewy in all his glory. Eyes shut but fluttering. Straining for no reason. Lifting his arms in the air to do whatever it is he does. I figured this is another Doc without a clue about LBD.
“He is in late stage 7 Lewy Body Dementia.”
Dr. Cutie Pie asked if he had a biopsy or had a CT scan run for the diagnosis. I’m thinking I never heard of a biopsy for LBD but why challenge? What would be the point?
“No, he was diagnosed by his reaction to the meds and his symptoms. He had a CT scan but it was negative. Are you familiar with LBD?
His answer blew me away. He had studied under some of the foremost LBD researchers. I had to ask “Where was that?”
“At Harvard”.
You could have knocked me over. I told him about having set Daddy up for Brain Donation to Harvard. Of course then I had to accept he probably knew more about it than I did, so I asked about the biopsy. Sure enough, if you want to go that route (as he put it) you can have a biopsy to see if there are bodies or tangles in the brain. But we agreed quickly, there really isn’t much point in doing it. There are other ways like the meds…and yes very often mis diagnosed.
I told him how unusual it was to run into someone that knew about it. “Oh most doctors of course know”. This time I had to disagree.
“No, not really”. So far, only the diagnosing specialist, of all the doctors we’ve seen is the only one who had much of a clue beyond of course understanding what dementia meant. Cutie Pie was amazed to hear this. Hopefully that means he is talking it up to his buds and the word will spread.
I asked if he could give me a clue on expectations of a timeline.
“Tomorrow, the next day, or two months from now…If it were my Dad, I’d hope for tomorrow.”
Yep. He knows LBD alright.
It’s just a hard way to go.
2 comments:
Stella said...
Oh, our poor Mr Lewy. How awful for him and for you. How fortunate for you to find a doctor with whom you could speak. And question.
Stella said...
I don't understand why the doctors are so against considering the possibility that it could be LBD. My dependable PCP who has been treating my LO since he examined him for the bugs which had invaded the area of his genitals. No bugs were found. The dermatologist could find none and suggested a psychiatrist. That was so long ago and everything about my LO was "normal" we were amused. [How little we knew what the future would hold]. About 12 years ago he began "seeing" things. This was before he lost his sight. He had strange reactions to medicines... even Lipitor nearly pushed him over the edge, for goodness sakes! And the nighttime acting out dreams. A big one, oft repeated, was standing guard over the prisoners on Mussolini's train. It has been a long time since he wanted to go out in public because he discovered he would be talking with someone and ask about a family member,, only to be told that the person had died. He was so embarrassed and I knew he had gone to that friends wake. I knew something was extremely wrong but some days he was so much "himself", I wondered why I worried. In November of 2007, I found the forum. Need I say, "Aha"! The Neurologist said [shouting at me], "I say its strokes!". True he has had minor strokes. My wonderful psychiatrist will not commit to a diagnosis but he is treating it "as if" and my PCP smiles and says we can't know for sure until after death. I wonder why they feel this way. They know.
As you might expect I’m in a get up, get dressed, get the house in order frenzy. I went over to check on Daddy and saw where Lewy had ripped out the catheter sometime in the night. There was blood everywhere. No pee, just blood. OMG! My mind goes into a mild panic.
Its 7:30 and the phone is ringing. Summer, our new nurse tech that replaced Yvonne was wondering if I would prefer she come on early or wait until her last call, since she lives very near us. No brainer….EARLY! I explained to her what had happened. She is actually a nurse, but is for whatever reason doing the tech work so I figured she could take care of the catheter.
No, well not really she said. She could tell me what to do, and I could do it, but she was not allowed to do such stuff. OK. I can take it. I’m tough. Sure Come on.
Summer arrived in no time. She came in and started looking at Daddy’s penis and all the blood. The decision was made to clean him up first. Her normal cleaning takes about 45 minutes. This time it was almost 2 hours. She had me get ice to put on him, then wet rags into the freezer to pull out nicely chilled to wrap him up to prevent swelling. She sopped and sopped the blood. It just kept pouring out. After about 8 ice rags it slowed down enough to wrap Lewy’s man hood up in a pee pad cut down to size and wait for the nurse. Summer called her and prepped her for the afternoon festivities.
Nurse Goodbody arrived about an hour later. With her were her implements of catheter insertion. She cleaned Lewy’s penis a bit and the blood was still flowing. Lewy was miserable. I had started the pain meds on him before Summer got there and was squirting him every hour on the hour all morning. He was still in agony. Nurse Goodbody inserted a new catheter. Blood poured through it; enough to fill the bag almost half full. It was loaded with long stringy tissue and blood clots. So much so that it quickly became blocked, and we decided to go for a second new catheter.
This one was being difficult. It just did not want to do right. She felt it was not fully inserted but was not completely sure. She brought with her several bottles of Saline Solution to flush his bladder. One by one she emptied the bottles, 400-500-cc’s into Lewy’s bladder. You could literally see his belly rise from the extra water. But nothing was coming out.
Nurse Goodbody gave me a choice. I could continue to irrigate every other hour or we could call an ambulance.
I went to get my shoes and socks. There was no way if he is blocked from peeing that I’m letting her go without dealing with it. She called the Hospice Doctor on call, then the ambulance service, and then the receiving hospital, and had it all set up in minutes. It would have taken me forever.
The ambulance arrived about an hour later and we played chase through downtown interstate traffic. Loads of fun. These dudes go 85 in 55 zones without lights…I’m more of a 57 miler myself, but anyway here we went.
We arrived at one of the large downtown not for profit hospitals and within 5 minutes I was back in the room with Daddy. They had taken him in, plugged him into all the monitors and had 3 nurses in the room when I arrived.
The head nurse came in and took over. She explained that they were going to insert a 3way catheter and irrigate him. We needed to get the blood out of his bladder. With just a few flicks of her wrist she had the one Nurse Goodbody had inserted out and this new 3 way in. As soon as she put the 3000cc bag of saline to it, the blood poured out the discharge tube.
Then came in Dr. Cutie Pie. Small framed, angular chin, with spiked blonde hair…maybe 32 years old…I’ve come to expect ER doctors to be a pain in the ass. Perhaps we have been going to the wrong ER…Dr. Cutie Pie was attentive to Daddy and was nice enough to take the time to talk to me about what had happened.
Then he asked about Daddy’s general health. He was looking at Lewy in all his glory. Eyes shut but fluttering. Straining for no reason. Lifting his arms in the air to do whatever it is he does. I figured this is another Doc without a clue about LBD.
“He is in late stage 7 Lewy Body Dementia.”
Dr. Cutie Pie asked if he had a biopsy or had a CT scan run for the diagnosis. I’m thinking I never heard of a biopsy for LBD but why challenge? What would be the point?
“No, he was diagnosed by his reaction to the meds and his symptoms. He had a CT scan but it was negative. Are you familiar with LBD?
His answer blew me away. He had studied under some of the foremost LBD researchers. I had to ask “Where was that?”
“At Harvard”.
You could have knocked me over. I told him about having set Daddy up for Brain Donation to Harvard. Of course then I had to accept he probably knew more about it than I did, so I asked about the biopsy. Sure enough, if you want to go that route (as he put it) you can have a biopsy to see if there are bodies or tangles in the brain. But we agreed quickly, there really isn’t much point in doing it. There are other ways like the meds…and yes very often mis diagnosed.
I told him how unusual it was to run into someone that knew about it. “Oh most doctors of course know”. This time I had to disagree.
“No, not really”. So far, only the diagnosing specialist, of all the doctors we’ve seen is the only one who had much of a clue beyond of course understanding what dementia meant. Cutie Pie was amazed to hear this. Hopefully that means he is talking it up to his buds and the word will spread.
I asked if he could give me a clue on expectations of a timeline.
“Tomorrow, the next day, or two months from now…If it were my Dad, I’d hope for tomorrow.”
Yep. He knows LBD alright.
It’s just a hard way to go.
2 comments:
Stella said...
Oh, our poor Mr Lewy. How awful for him and for you. How fortunate for you to find a doctor with whom you could speak. And question.
Stella said...
I don't understand why the doctors are so against considering the possibility that it could be LBD. My dependable PCP who has been treating my LO since he examined him for the bugs which had invaded the area of his genitals. No bugs were found. The dermatologist could find none and suggested a psychiatrist. That was so long ago and everything about my LO was "normal" we were amused. [How little we knew what the future would hold]. About 12 years ago he began "seeing" things. This was before he lost his sight. He had strange reactions to medicines... even Lipitor nearly pushed him over the edge, for goodness sakes! And the nighttime acting out dreams. A big one, oft repeated, was standing guard over the prisoners on Mussolini's train. It has been a long time since he wanted to go out in public because he discovered he would be talking with someone and ask about a family member,, only to be told that the person had died. He was so embarrassed and I knew he had gone to that friends wake. I knew something was extremely wrong but some days he was so much "himself", I wondered why I worried. In November of 2007, I found the forum. Need I say, "Aha"! The Neurologist said [shouting at me], "I say its strokes!". True he has had minor strokes. My wonderful psychiatrist will not commit to a diagnosis but he is treating it "as if" and my PCP smiles and says we can't know for sure until after death. I wonder why they feel this way. They know.
Kick Some Butt
Lewy was awake for several hours today. He started out by wanting Hubbie to get him several cups of ice water. We gave him more liquids to day than he has had in the last 4-5 days put together.
He had a class A #1 stinky bowel movement that would gag a maggot. Not messy. Stinky. My stomach! If you find yourself changing a Lewy in late stage LBD I highly recommend a mask. I don’t know that the LBD has anything to do with it, probably more bodily systems shutting down…but OMG!
With that taken care of Lewy decided he wanted to get out of the bed. This is the first time since we got the lift that he wanted to get up. Hubbie and I rolled him over in the half sheet tuck method the nurses use to change his sheets and got the lift pallet under him. (I also had the good sense to get it under Daddy’s satin pull sheet. ) We hooked up the chains and I pumped the hydraulic jack to lift Daddy up over his bed.
When lifted, it puts the person being carried in the sitting position. The pallet also has a handy hole in the seat of it for potty time. I’ll have to try that next time he needs to go. With my luck it will be spray instead of solid…all over the hardwood waxed floors. But still possibly worth the try.
We lifted him over to his recliner, pushed him in line properly and lowered him into the chair. It was nice to see Daddy sitting up but it was apparently not very comfortable for him. I had hoped he could sit up for a while but that was not happening so I pushed the recliner into a more prone position. Nope that won’t work either…it put the catheter uphill from his…..bladder.
Again we had him upright with the feet raised to their lowest position. Two seconds later Tweak was in his lap. Buddies together again, if only for a few minutes.
Daddy said he wanted to get back in the bed. We lifted him back up and over to the bed and put him back in with the pallet under him. Changing sheets will be so much easier on him and on me. I can do it by myself now....
And then Trey (Lewy’s grandson) and his wife Bonnie stopped by to visit. Bonnie is a quite polite person that you would never expect to be aggressive…but bless her…when she found out that my cousin and his wife had not visited Daddy in the hospital, or since we got him home, she went straight over to their house, banged on their door…went in and chewed them both a new one.
They came by the next day for a 30 minute visit.
Bonnie is still mad at them.
I’m loving it. You go girl. Kick some butt.
1 comments:
kddove said...
today i was scared to read you. i wondered after saturday if he was going downhill faster... i think the up-down back and forth is worse, sometimes. not to keep comparing my dog to your daddy (well, i guess i am)the same thing happens with her. just when i think she's done for, after a seizure or a fall... i take her out and she gallops/hops/runs and i could swear, she's smiling...
He had a class A #1 stinky bowel movement that would gag a maggot. Not messy. Stinky. My stomach! If you find yourself changing a Lewy in late stage LBD I highly recommend a mask. I don’t know that the LBD has anything to do with it, probably more bodily systems shutting down…but OMG!
With that taken care of Lewy decided he wanted to get out of the bed. This is the first time since we got the lift that he wanted to get up. Hubbie and I rolled him over in the half sheet tuck method the nurses use to change his sheets and got the lift pallet under him. (I also had the good sense to get it under Daddy’s satin pull sheet. ) We hooked up the chains and I pumped the hydraulic jack to lift Daddy up over his bed.
When lifted, it puts the person being carried in the sitting position. The pallet also has a handy hole in the seat of it for potty time. I’ll have to try that next time he needs to go. With my luck it will be spray instead of solid…all over the hardwood waxed floors. But still possibly worth the try.
We lifted him over to his recliner, pushed him in line properly and lowered him into the chair. It was nice to see Daddy sitting up but it was apparently not very comfortable for him. I had hoped he could sit up for a while but that was not happening so I pushed the recliner into a more prone position. Nope that won’t work either…it put the catheter uphill from his…..bladder.
Again we had him upright with the feet raised to their lowest position. Two seconds later Tweak was in his lap. Buddies together again, if only for a few minutes.
Daddy said he wanted to get back in the bed. We lifted him back up and over to the bed and put him back in with the pallet under him. Changing sheets will be so much easier on him and on me. I can do it by myself now....
And then Trey (Lewy’s grandson) and his wife Bonnie stopped by to visit. Bonnie is a quite polite person that you would never expect to be aggressive…but bless her…when she found out that my cousin and his wife had not visited Daddy in the hospital, or since we got him home, she went straight over to their house, banged on their door…went in and chewed them both a new one.
They came by the next day for a 30 minute visit.
Bonnie is still mad at them.
I’m loving it. You go girl. Kick some butt.
1 comments:
kddove said...
today i was scared to read you. i wondered after saturday if he was going downhill faster... i think the up-down back and forth is worse, sometimes. not to keep comparing my dog to your daddy (well, i guess i am)the same thing happens with her. just when i think she's done for, after a seizure or a fall... i take her out and she gallops/hops/runs and i could swear, she's smiling...
Hope You Approve, Momma
Lewy did not wake up today except for a few seconds when we…well when I had Hubbie roll his pull sheet under so the dried phlegm from the night before was not visible. I can’t take those kinds of body fluids, and this was crusty and brownish red rather than the clear or yellowish you might expect.
I suppose the red color means Daddy is getting some blood into his lungs.
The only thing he said today was that he wanted to tell me something. When I asked what it was, he could not remember, then he was fast asleep again. He is no longer breathing deeply and snoring with his mouth open. I had taken to spraying his mouth, but now that too seems to have drifted by the wayside.
Several times today I stood over him looking to see if he was still breathing. At one point I was in the recliner across the room from him where I could see the rise and fall of his chest as he slept. I tried to mimic Lewy’s breathing. If I was anything close, I don’t see how he is getting enough air. I had to gasp several times to get my needed quota while mimicking him.
Perhaps it is because I’ve never witnessed first hand the process of dying, but I’m not so sure that Daddy will make it the full month that Nurse Goodbody guessed it might be. Certainly he is not taking enough fluids or eating. I try to get him to eat and drink more, but we are down to less than 8 ounces of food and liquid combined per day.
Not so long ago time seemed to fly by. Days seemed like mere hours, now the days drag out so, it seems like a year between the Friday Hospice visit and the Monday visit. Maybe it’s because Lewy is fading so fast that it seems so long.
You don’t realize how fast things move until you do something like download a memory card full of photographs. 230 some odd pictures to be almost exact. For us that many pictures took us back to Christmas. Daddy was sitting up in his chair, opening his presents, (with assistance) and holding Tweak in his lap. They were such good buddies. Now she naps under his bed or in his recliner without him.
It is hard to imagine that he was walking, talking, and understanding pretty well only 3 ½ months ago and now he is this pitiful shell of a person wasting away day by day. He legs are so thin it is no longer hard to hold his feet up for Nurse Goodbody to dress his now almost healed sores. I wonder if we would have been just as well off to have not done the surgery, but I guess we had to. Amputation was thrown out on the table if we didn’t.
Still I can’t help but feel like he was doing OK after the surgery, until they drugged him for the ambulance trip home. The more I think about it, perhaps irrationally, I cannot understand why they would drug anyone up so much they would crap themselves from their shoulders to their knees for a short ride home from the hospital. When I left him in his hospital room to head home to get ready for his arrival, he was alert and responsive. Who/what could it possibly benefit to drug someone up so?
I want to go back to the hospital and find out who ordered the drugs and how much was given. Perhaps that is just SOP to keep the transport easier for the EMTs, but someone should know what the result of the drugs has been. I know in the Grand Scheme of things, it probably didn’t change the ultimate outcome, but it sure speeded it up; perhaps my months. Perhaps mercifully.
I look at Daddy and try to think through those things I need to say, but I cannot get past the first line without breaking down. I watched my mother Code in the CCU. I will never forget the last breath she took. It was so labored so deep. So final.
I’ve been thinking of her a lot lately. I’ve done the job she wanted me to do. I know that summer day in 96 when she said something was not right with Daddy, that she was passing information along so I would take care of him if the need arose. Perhaps she had some intuition about her fate. The last time I saw her, when I hugged her goodbye, I knew I would never see her alive again. I was almost right. I got to Atlanta just in time to see her pass away.
And so I have taken care of him, Momma. Not as well as you would have, no doubt, but I’ve tried very hard to do my best by him. I only hope you would approve.
2 comments:
kddove said...
I know your momma is thankful. and even if he doesn't know it, so is lewy. to be at home with his stuff and people he knows to feel safe around, and tweak and food he likes, even if he barely eats now, compared to a nursing home... you and hubbie are 2 people i am very proud to know. will you adopt me?
Stella said...
Pauline, I can only tell you the pride I feel when one of my daughters stay the night with their dad and I hear about the bathroom issues and such as they have experienced and not once have they called for me. I ask if it bothered them too much and they just smiled. I believe he waits for them. I think the next time I hear anyone low rate younger people, I will hit them over the head. Every generation has its heros. Your mother raised a hero.
I suppose the red color means Daddy is getting some blood into his lungs.
The only thing he said today was that he wanted to tell me something. When I asked what it was, he could not remember, then he was fast asleep again. He is no longer breathing deeply and snoring with his mouth open. I had taken to spraying his mouth, but now that too seems to have drifted by the wayside.
Several times today I stood over him looking to see if he was still breathing. At one point I was in the recliner across the room from him where I could see the rise and fall of his chest as he slept. I tried to mimic Lewy’s breathing. If I was anything close, I don’t see how he is getting enough air. I had to gasp several times to get my needed quota while mimicking him.
Perhaps it is because I’ve never witnessed first hand the process of dying, but I’m not so sure that Daddy will make it the full month that Nurse Goodbody guessed it might be. Certainly he is not taking enough fluids or eating. I try to get him to eat and drink more, but we are down to less than 8 ounces of food and liquid combined per day.
Not so long ago time seemed to fly by. Days seemed like mere hours, now the days drag out so, it seems like a year between the Friday Hospice visit and the Monday visit. Maybe it’s because Lewy is fading so fast that it seems so long.
You don’t realize how fast things move until you do something like download a memory card full of photographs. 230 some odd pictures to be almost exact. For us that many pictures took us back to Christmas. Daddy was sitting up in his chair, opening his presents, (with assistance) and holding Tweak in his lap. They were such good buddies. Now she naps under his bed or in his recliner without him.
It is hard to imagine that he was walking, talking, and understanding pretty well only 3 ½ months ago and now he is this pitiful shell of a person wasting away day by day. He legs are so thin it is no longer hard to hold his feet up for Nurse Goodbody to dress his now almost healed sores. I wonder if we would have been just as well off to have not done the surgery, but I guess we had to. Amputation was thrown out on the table if we didn’t.
Still I can’t help but feel like he was doing OK after the surgery, until they drugged him for the ambulance trip home. The more I think about it, perhaps irrationally, I cannot understand why they would drug anyone up so much they would crap themselves from their shoulders to their knees for a short ride home from the hospital. When I left him in his hospital room to head home to get ready for his arrival, he was alert and responsive. Who/what could it possibly benefit to drug someone up so?
I want to go back to the hospital and find out who ordered the drugs and how much was given. Perhaps that is just SOP to keep the transport easier for the EMTs, but someone should know what the result of the drugs has been. I know in the Grand Scheme of things, it probably didn’t change the ultimate outcome, but it sure speeded it up; perhaps my months. Perhaps mercifully.
I look at Daddy and try to think through those things I need to say, but I cannot get past the first line without breaking down. I watched my mother Code in the CCU. I will never forget the last breath she took. It was so labored so deep. So final.
I’ve been thinking of her a lot lately. I’ve done the job she wanted me to do. I know that summer day in 96 when she said something was not right with Daddy, that she was passing information along so I would take care of him if the need arose. Perhaps she had some intuition about her fate. The last time I saw her, when I hugged her goodbye, I knew I would never see her alive again. I was almost right. I got to Atlanta just in time to see her pass away.
And so I have taken care of him, Momma. Not as well as you would have, no doubt, but I’ve tried very hard to do my best by him. I only hope you would approve.
2 comments:
kddove said...
I know your momma is thankful. and even if he doesn't know it, so is lewy. to be at home with his stuff and people he knows to feel safe around, and tweak and food he likes, even if he barely eats now, compared to a nursing home... you and hubbie are 2 people i am very proud to know. will you adopt me?
Stella said...
Pauline, I can only tell you the pride I feel when one of my daughters stay the night with their dad and I hear about the bathroom issues and such as they have experienced and not once have they called for me. I ask if it bothered them too much and they just smiled. I believe he waits for them. I think the next time I hear anyone low rate younger people, I will hit them over the head. Every generation has its heros. Your mother raised a hero.
Lewy and The Blog
The realization that Lewy is going to take Daddy away pretty soon is beginning to sink into my brain. I’m an organizer, so I have gotten every thing in order for the brain donation, secured funeral home crematory services, gotten all the assets secured, and written the obituary. I’ve asked Hubbie to plan the music for the wake.
And then there is this. This strange web blog thing that has become part of several people’s everyday life. As we told you before, Hubbie and I are going to keep the blog going until the very last thing to say has been said.
After it is finished, I will copy it all into e-book form and post it to another URL that will be linked from this blog.
We had both hoped that some one would write their LBD stories to keep Living with Lewy Body going.
So as Lewy fades, hopefully another's star will shine brighter, and perhaps he/she will pick up Lewy’s torch and carry it for a while until another friend of Lewy’s comes along to bear the burden.
And then there is this. This strange web blog thing that has become part of several people’s everyday life. As we told you before, Hubbie and I are going to keep the blog going until the very last thing to say has been said.
After it is finished, I will copy it all into e-book form and post it to another URL that will be linked from this blog.
We had both hoped that some one would write their LBD stories to keep Living with Lewy Body going.
So as Lewy fades, hopefully another's star will shine brighter, and perhaps he/she will pick up Lewy’s torch and carry it for a while until another friend of Lewy’s comes along to bear the burden.
Timeline
Lewy slept all day today except for enough time to consume a 6 oz. cup of yogurt with his pills all crushed and stirred in….yummmm. But Lewy doesn’t seem to mind or even notice. I managed to get two 8 ounce glasses of liquid down him for the day.
We had been using an eye dropper to wet his mouth, but he was getting strangled on the drops, so today it finally occurred to me to hunt down a spray bottle. I found the perfect thing a small empty hair spray pump bottle. After a thorough scrubbing, I squirted Lewy’s mouth a few times. It did not wake him up, but his lips puckered up and the tongue came out to catch all of the mist.
Our friend, Alex, a retired Orthopedic surgeon dropped by today. He was amazed at the decline in Daddy since he saw him last, about 3 months ago. Three months ago Daddy was walking and talking. Now he sleeps.
Nurse Goodbody came by today to check on Daddy. His feet are healing up very well. It’s too bad it took so long for it to happen. Even with the Hoya lift I don’t see Daddy ever getting out of the bed again.
She reported that there was some change in the lungs, a bit more congestion.
I told her Daddy had said he saw Momma three times the other day.
She just nodded and said “That’s a sign.”
I had to ask if she could begin to predict the future. I know it was unfair because Lewy’s are so different, but she guessed maybe a month.
Maybe a month.
That’s were my doctor friend was guessing too. It seems so odd to have a time put out there. I need to find a way to say the things I need to say to Daddy, but my brain just shuts down when I try to think about it. Is what I say for me or for him? They say the hearing is the last to go. No doubt true, but if I’m talking to Lewy rather than Daddy will I know? Can the “talk” be avoided by writing it down instead? It’s a terrible thing when really the only thing that needs to be said are those three little words I can’t get to come out of my mouth.
Momma and Daddy didn’t raise any touchy feely kids, that’s for sure.
Lewy has stopped opening his eyes. He would not or could not look at Nurse Goodbody today.
There is no more flirt left in him.
4 comments:
kddove said...
i feel so attached to him with your everyday life stories, even though i have only seen him 3 or 4 times... i wonder if you would let me have a copy of the photo of him looking out the door? it's such a good picture, i like to frame it...
Stella said...
Why, oh why, are those three little words so hard to say???. i found that even with this dear heart of mine, Freddie. Edward and I have gone years without saying the actual words. I'm not sure of the importance for our generation. My younger members say it each time they say goodbye to us and it is great, but we just did not say it as younger people. I knew when he gassed up my car he loved me. Or when he bought a new replacement for my T-Bird, which I loved. I knew he loved me when I was on a lonely road one night and four or five "hoods" made a human fence across my path in an effort to stop my car. My LTD would not be stopped!!! At this stage of our lives, I enter his room each morning with a simple song, something like, "Let me Call you Sweetheart, I'm in Love with you..." or a Louisiana favorite, "You are my Sunshine, My Only Sunshine..". This morning I sang, "There are Smiles that make me Happy... " When I reached, "are the Smiles that you gave to me", I saw a smiling crinkle beside his eyes and mouth. I know you sing, you have entered songs on this story of yours.
I can't sing. I positively can't sing. But I sang to my babies and now I quietly sing to Freddie because one night several years ago, I heard his rambling voice as he was in the middle of one of his dreams, or whatever it is in night time talking. I heard him say, I guess she loves me but she never tells me. So I sing and hum and call him my ole Sweetheart. He responds. The first few times are hard, but "Try it, You'll like it". For starters just say, "I told Hubbie that I have the dearest dad in the world".
pearose said...
Pauline,
Any regrets you may have after he is gone will be more painful than saying the words that he will hear you say.
I told my grandfather (my most favorite person ever) that he was the best grandfather a grandchild could want and he cried like a baby. So, I then told him that he needed to dry up. :) He then laughed as hard as I've ever heard him laugh. He loved hearing those words and being told that he was loved. He especially loved being teased a little because he would tease right back. I couldn't say it enough to him because I truly loved him and his company.
My cousin stood with me at his casket and regretted that she had never said that to him and she lived with him most of her life up to that point. It hurt me to hear that because he needed to be told how much we appreciated him.
Let him know how you feel. He already knows you do because of what you do for him every day. I promise, the earth won't open up and swallow you. In fact, it may look a little brighter for you (as soon as these storms pass) after you say it the first time. Give him a chance to say it back to you, as well. It's never too late to learn.
Pauline said...
Y'all are Killing me Softly. kddove you certainly may have a copy of the photo.
We had been using an eye dropper to wet his mouth, but he was getting strangled on the drops, so today it finally occurred to me to hunt down a spray bottle. I found the perfect thing a small empty hair spray pump bottle. After a thorough scrubbing, I squirted Lewy’s mouth a few times. It did not wake him up, but his lips puckered up and the tongue came out to catch all of the mist.
Our friend, Alex, a retired Orthopedic surgeon dropped by today. He was amazed at the decline in Daddy since he saw him last, about 3 months ago. Three months ago Daddy was walking and talking. Now he sleeps.
Nurse Goodbody came by today to check on Daddy. His feet are healing up very well. It’s too bad it took so long for it to happen. Even with the Hoya lift I don’t see Daddy ever getting out of the bed again.
She reported that there was some change in the lungs, a bit more congestion.
I told her Daddy had said he saw Momma three times the other day.
She just nodded and said “That’s a sign.”
I had to ask if she could begin to predict the future. I know it was unfair because Lewy’s are so different, but she guessed maybe a month.
Maybe a month.
That’s were my doctor friend was guessing too. It seems so odd to have a time put out there. I need to find a way to say the things I need to say to Daddy, but my brain just shuts down when I try to think about it. Is what I say for me or for him? They say the hearing is the last to go. No doubt true, but if I’m talking to Lewy rather than Daddy will I know? Can the “talk” be avoided by writing it down instead? It’s a terrible thing when really the only thing that needs to be said are those three little words I can’t get to come out of my mouth.
Momma and Daddy didn’t raise any touchy feely kids, that’s for sure.
Lewy has stopped opening his eyes. He would not or could not look at Nurse Goodbody today.
There is no more flirt left in him.
4 comments:
kddove said...
i feel so attached to him with your everyday life stories, even though i have only seen him 3 or 4 times... i wonder if you would let me have a copy of the photo of him looking out the door? it's such a good picture, i like to frame it...
Stella said...
Why, oh why, are those three little words so hard to say???. i found that even with this dear heart of mine, Freddie. Edward and I have gone years without saying the actual words. I'm not sure of the importance for our generation. My younger members say it each time they say goodbye to us and it is great, but we just did not say it as younger people. I knew when he gassed up my car he loved me. Or when he bought a new replacement for my T-Bird, which I loved. I knew he loved me when I was on a lonely road one night and four or five "hoods" made a human fence across my path in an effort to stop my car. My LTD would not be stopped!!! At this stage of our lives, I enter his room each morning with a simple song, something like, "Let me Call you Sweetheart, I'm in Love with you..." or a Louisiana favorite, "You are my Sunshine, My Only Sunshine..". This morning I sang, "There are Smiles that make me Happy... " When I reached, "are the Smiles that you gave to me", I saw a smiling crinkle beside his eyes and mouth. I know you sing, you have entered songs on this story of yours.
I can't sing. I positively can't sing. But I sang to my babies and now I quietly sing to Freddie because one night several years ago, I heard his rambling voice as he was in the middle of one of his dreams, or whatever it is in night time talking. I heard him say, I guess she loves me but she never tells me. So I sing and hum and call him my ole Sweetheart. He responds. The first few times are hard, but "Try it, You'll like it". For starters just say, "I told Hubbie that I have the dearest dad in the world".
pearose said...
Pauline,
Any regrets you may have after he is gone will be more painful than saying the words that he will hear you say.
I told my grandfather (my most favorite person ever) that he was the best grandfather a grandchild could want and he cried like a baby. So, I then told him that he needed to dry up. :) He then laughed as hard as I've ever heard him laugh. He loved hearing those words and being told that he was loved. He especially loved being teased a little because he would tease right back. I couldn't say it enough to him because I truly loved him and his company.
My cousin stood with me at his casket and regretted that she had never said that to him and she lived with him most of her life up to that point. It hurt me to hear that because he needed to be told how much we appreciated him.
Let him know how you feel. He already knows you do because of what you do for him every day. I promise, the earth won't open up and swallow you. In fact, it may look a little brighter for you (as soon as these storms pass) after you say it the first time. Give him a chance to say it back to you, as well. It's never too late to learn.
Pauline said...
Y'all are Killing me Softly. kddove you certainly may have a copy of the photo.
A Hard Day's Night
Lewy slept all day except for waking up just enough to have some fluids squirted into his mouth and to groan once when the nurses aide substituting for our regular Yvonne, was bathing him. He hasn’t taken any of the available drugs other than his normal vitamin, zinc in mass quantities to heal the sores, and his few prescription drugs including his “Anti Crazy Pill”. There’s no need to call it that any more. Lewy doesn’t care anymore what the pills are. I crush them, he takes them in his yogurt.
He used to have names for all his pills so he could remember what they were for. “Anti Crazy Pill”; “No Pee Pill”; “Pee Better Pill”, “Walk Better Pill”. With these names Lewy could remember what he had taken, or missed, pretty well.
With Lewy sleeping all day there is not much to do. Clean up the kitchen, do laundry. Some office work. What I can’t do is get out of ear shot of Daddy; like a dog on a thirty foot retractable leash. At least I have gotten the front porch mostly cleaned up for spring.
So the day is fine; Right?
Wrong.
I don’t know why it is, but when Hubbie gets home, I flip out. I go silent on him. I get out of the house almost as soon as he walks in the door.
I want to be outside without my leash.
When it gets dark and I have to come in, I’m mad…not mad…irritated….no….maybe just crazy. I get emotional and irrational; a thing I cannot tolerate, so it pisses me off at me. Hubbie thinks I’m mad at him; (Maybe because he’s the only other conscious person in the room?)
He shouldn’t be so sensitive.
No…I shouldn’t be so sensitive.
I’m loosing my mind……Now what is it I’m mad about?........No!..... I’m not mad!.....I’m something, but I’m not mad.
Now that its time to go to bed, Lewy is waking up. He will want to talk about the business, and the ceiling fan. I’m not sure if he likes the fan or doesn’t like it; but it sure does attract his attention.
I need a nap. It’s been a hard day.
5 comments:
Anonymous said...
Dear Pauline,
Isn't it the saying that those closest to us bear the brunt of our mood? I think Hubbie can take it, as I'm positive you could also if the boot were on the other foot.
Forgive yourself, you need to vent sometimes
Kind regards
Dee
Hubbie said...
I love you girl.
How about I stay home tomorrow and you slip the leash and run for a while. Of course it is supposed to storm so I'll have to towel you off when you get home.
old friend said...
almost the weekend, Pauline. You can make it and then you'll feel the wind on your face...and a space of time for a tiny bit of freedom (thanks very much, Hubbie). And thank you, Pauline for HONEST, true writing.
kddove said...
I surely don't have all your problems, but I do definitely relate to the mad/irritated thing. But i cannot figure out why.... what am i so pissed about, and at whom? it's like i want everyone in the world OUT of my space... even my dad. i want to be able to come and go without any one to discuss it with, or feel i need to discuss it with. But i am sure hubbie gets it... just read what he writes!
Stella said...
Pauline, I detected a threat, or a veiled promise in the note from Hubbie. Isn't marriage fun?
He used to have names for all his pills so he could remember what they were for. “Anti Crazy Pill”; “No Pee Pill”; “Pee Better Pill”, “Walk Better Pill”. With these names Lewy could remember what he had taken, or missed, pretty well.
With Lewy sleeping all day there is not much to do. Clean up the kitchen, do laundry. Some office work. What I can’t do is get out of ear shot of Daddy; like a dog on a thirty foot retractable leash. At least I have gotten the front porch mostly cleaned up for spring.
So the day is fine; Right?
Wrong.
I don’t know why it is, but when Hubbie gets home, I flip out. I go silent on him. I get out of the house almost as soon as he walks in the door.
I want to be outside without my leash.
When it gets dark and I have to come in, I’m mad…not mad…irritated….no….maybe just crazy. I get emotional and irrational; a thing I cannot tolerate, so it pisses me off at me. Hubbie thinks I’m mad at him; (Maybe because he’s the only other conscious person in the room?)
He shouldn’t be so sensitive.
No…I shouldn’t be so sensitive.
I’m loosing my mind……Now what is it I’m mad about?........No!..... I’m not mad!.....I’m something, but I’m not mad.
Now that its time to go to bed, Lewy is waking up. He will want to talk about the business, and the ceiling fan. I’m not sure if he likes the fan or doesn’t like it; but it sure does attract his attention.
I need a nap. It’s been a hard day.
5 comments:
Anonymous said...
Dear Pauline,
Isn't it the saying that those closest to us bear the brunt of our mood? I think Hubbie can take it, as I'm positive you could also if the boot were on the other foot.
Forgive yourself, you need to vent sometimes
Kind regards
Dee
Hubbie said...
I love you girl.
How about I stay home tomorrow and you slip the leash and run for a while. Of course it is supposed to storm so I'll have to towel you off when you get home.
old friend said...
almost the weekend, Pauline. You can make it and then you'll feel the wind on your face...and a space of time for a tiny bit of freedom (thanks very much, Hubbie). And thank you, Pauline for HONEST, true writing.
kddove said...
I surely don't have all your problems, but I do definitely relate to the mad/irritated thing. But i cannot figure out why.... what am i so pissed about, and at whom? it's like i want everyone in the world OUT of my space... even my dad. i want to be able to come and go without any one to discuss it with, or feel i need to discuss it with. But i am sure hubbie gets it... just read what he writes!
Stella said...
Pauline, I detected a threat, or a veiled promise in the note from Hubbie. Isn't marriage fun?
Knight in Shining Armor
After a day long nap that lasted into the night…completely through the NCAA Women’s Championship Game….Hubbie and I talked about how it was sort of like being alone again, even though Daddy was in the room.
That reminded me of my friend Meredith that had her dearly departed dog stuffed and brought home. I asked her if that would not feel weird; weird to have the dead sitting there in the living room with you?
But this is not much different. We have the near dead in the living room with us. Lewy only wakes up occasionally for something to eat or drink.
Then I had to chuckle a bit. Back when I was really stupid and 16 years old, in order to get out of the house, ran off and got married to the local almost hood. We didn’t tell anyone for a couple of weeks, then were ratted on by an employee of my Dad’s girlfriend who was the nurse that drew our blood for the tests. She recognized my last name.
Well there we were. Married. Momma crying loudly about me doing that to her…Daddy was just quiet. Mad quiet. He was practical, and realized what was done was done and everybody might as well get used to it.
Of course getting married to get out of the house worked….John moved in with me and the folks. Talking about tense. Daddy didn’t help anything either by not ever saying anything.
I don’t recall for sure if it was our first night at the house together but it probably was…John and I excused ourselves to go back to my – our bedroom to watch TV, and get away from the parents. We were in the room just long enough to get into our sleepwear…for me my jammies, for John, not much; not much at all.
We had gotten in the bed and turned on the TV. There was a peck at the door.
“Yes?”
Daddy opened the door, wide open walked in with cokes and snacks, had me get out of the bed – he crawled in next to John, then invited me back in.
Yep. He sat there between us and watched TV until he could stand it no longer, and finally gave up and went to his own bed.
He protected me as long as he could.
1 comments:
Stella said...
Yes! Always was a man of few words. Gotta love him.
That reminded me of my friend Meredith that had her dearly departed dog stuffed and brought home. I asked her if that would not feel weird; weird to have the dead sitting there in the living room with you?
But this is not much different. We have the near dead in the living room with us. Lewy only wakes up occasionally for something to eat or drink.
Then I had to chuckle a bit. Back when I was really stupid and 16 years old, in order to get out of the house, ran off and got married to the local almost hood. We didn’t tell anyone for a couple of weeks, then were ratted on by an employee of my Dad’s girlfriend who was the nurse that drew our blood for the tests. She recognized my last name.
Well there we were. Married. Momma crying loudly about me doing that to her…Daddy was just quiet. Mad quiet. He was practical, and realized what was done was done and everybody might as well get used to it.
Of course getting married to get out of the house worked….John moved in with me and the folks. Talking about tense. Daddy didn’t help anything either by not ever saying anything.
I don’t recall for sure if it was our first night at the house together but it probably was…John and I excused ourselves to go back to my – our bedroom to watch TV, and get away from the parents. We were in the room just long enough to get into our sleepwear…for me my jammies, for John, not much; not much at all.
We had gotten in the bed and turned on the TV. There was a peck at the door.
“Yes?”
Daddy opened the door, wide open walked in with cokes and snacks, had me get out of the bed – he crawled in next to John, then invited me back in.
Yep. He sat there between us and watched TV until he could stand it no longer, and finally gave up and went to his own bed.
He protected me as long as he could.
1 comments:
Stella said...
Yes! Always was a man of few words. Gotta love him.
Fecal Salute
There are some things you never want to talk about, but we’re going to make you read about. I suggest you not be eating for parts of this one.
Yesterday was a typical Monday. After being a 99% vegetable on Sunday, Daddy…pardon me….Lewy was rip raring to go. I love days when Daddy is here and there are a few special moments to share. But I’ve got to be honest; I don’t like Lewy one bit. Lewy is an obnoxious, impatient, one year old. Only if he were one, I’d know to correct his bad behavior before the child turned two. How do you go about correcting the behavior of a one year old child that will be 6 months old very soon?
Lewy woke up early. “PAULINE!”……PAULINE!......PAULINE!
This is payback for going off with my girl friends over the weekend. All I wanted was to sleep late, maybe as late as 8 AM. But no. Hubbie leaves for work about 7 AM, Lewy starts hollering at 7:01 AM. This morning (for my –yes I know I’m late-post) Hubbie had not pulled the car out of the garage before the hollering started. Not being very happy in the early mornings until I SSS…I had not gotten my eyes open, much less to the first S.
Yesterday Nurse Goodbody removed the pump from Daddy’s right foot and ordered us a Hoya (sp?) lift. I love Hospice. Yesterday his meds arrived by mail, and his lift arrived just before dark, having been ordered no more the 5 hours earlier. So now we are free to lift Daddy up, but we need to practice doing it first on each other. The best part of the lift is if he falls on the floor, I can now pick him up by myself.
Or maybe the best part of the lift is the support sling with the bottom hole for going to the bathroom…..Yep OK the bottom hole wins. If I can just get Daddy back on a toilet seat!
Now this is where I wish to digress….We had moved Lewy into stage 7. I am now more convinced than ever that it was a massive drug dosage of whatever it was they gave him to put him in the ambulance to bring him home. At the time we thought that was probably a good idea. But just watching here and with the meds I’m giving….they must have given him enough too just not kill him. Now that I know what a drug induced sleep looks like…yeah, he was severely drugged. Way over drugged. Here we are thinking he might die within the month…well maybe…but now with his feet better, and once we get him in the lift and into a wheelchair…he might actually be in stage 6 again. I’m not the expert, maybe no one is, but heavy drugs to induce sleep are bad for Lewy’s. Really bad.
Not to say I have not given him my share of drugs to “settle” him down. I have to wonder are the drugs for me or for him? What does it matter if he throws off his sheets or chews his pillow?...Drugs for that….If he hollers at me incessantly to where I’m going crazy….drugs for that…If he gets a strained look on his face…drug for that. If I took the drugs we are to give him, I’d never be able to get out of bed…..
But I digress. We are going to get visual here today brothers and sisters. Visual. I want you to think about yours or perhaps some one else’s anal opening. Picture it in your mind. For those of you like me you might prefer to visualize your own as a matter of comparison.
Now I’m no anal coinsurer. I’m going on the assumption that most everyone’s is about the same.
Yesterday, being Monday meant that it was Hospice day. Dear Yvonne came early to clean Daddy. She is so good. Obviously her job has taught her many things…one being to wait to wash butt…last.
Lewy had been saying he needed to shit for about 3 hours, but so far there was nothing. I had been cheering him on, hoping for the delivery prior to Yvonne’s cleaning but it just was not happening.
Yvonne suggested we put on two diapers; one the top to catch it, the other to be overflow or if lucky the next diaper, already in place and ready to go, or so I thought. Brilliant.
So we proceeded to double diaper him. Yvonne cleaned his bottom and greased it with thick white cream loaded with zinc oxide.
Then the delivery came.
Yvonne was good… “Come on Mr. Lewy, push it on out”. I’m on the other side of the playing field rooting for the same team…Push it out, Push It out WAY OUT!” Just as we were about to drop back and punt, Mr. Lewy shoved the little brown odd shaped ball out past the goal line. There was an immediate whoosh of warm air that followed.
No big deal. I’ve seen this before. My Dad’s asshole. I’m sorry; there is no other way to get the visual. A normal butt has an aperture sort of thing going on that opens and closes when debris moves through the hatch. Not Lewy’s butt. Lewys butt has been permanently set on “open”. I don’t know camera speak, but if you could open the lens full open and let it stay there. No doubt like an observatory….
So here I am peering down the telescope straight into blockage just below the rim.
I looked at Yvonne. She looked at me…Oh…..Oh….I know that look…That’s the…This is YOUR JOB honey….look. Hubbie uses it at times just like this.
I put on the rubber glove…asked Yvonne if I had to go in. She shrugged her shoulders…”That’s what the nurses do.” Oooooooohhhh…..nnnoooooooo….
She pulls him farther over to his side. I now have a full face to butt hole up close and personal viewing experience. The actual opening that does not ever close any more is relaxed at about a half inch (1 cm) opening. There is no more pucker around the hole…it’s just kinda limp. The darker ring around the anal opening, at least as far as I know, does not extend out a full 2 inch radius from the edge of the anuson a normal butt - however with Lewy, it's pretty far out there. It too, was flattish with no muscular structure.
Yet I could also see feces sitting right there in the hole.
So with glove on and pulled as far up my arm as it would go….I did what Nurse Goodbody had done, I stuck my index finger in for a poke-see.
There were lumps, hard ones soft ones….Daddy was not appreciating the adventure at all. “Wooooo! Oooooooo!!!”
I bent my finger to make as much of a spoon shape as possible and scooped. A large finger full…well a palm sized finger full. Yvonne wiped my gloved hand. I went in again and again and again, until all I was getting was thick oatmeal consistency; or for you Southerners, lumped up - sat too long grits. Thick enough to hold together, but still easily squished by hand.
This was disgusting. I lost my cool and started my uncontrollable gagging. Poor Yvonne probably thought I would vomit right there, but I’m good with deep lower stomach heave –hos. Merely painful, not productive.
And there it was, the “Fecal Salute”……I found myself with my ¾ length sleeves, attempting to wipe my brow with my gloved hand at 90 degrees from the forehead with fecal matter on the palm an at least two fingers. It’s then that you realize there comes a point where you just have to stop. Getting a clean run is not happening. Then the gas, and the ooze, gas, ooze, gas, ooze. We wiped him up over and over. We had to remove and replace that extra pair of diapers.
Finally, he settled down to just farts. Yvonne was gone and Lewy and I were home alone. It was a beautiful spring day; I had flowers to set out and the front porch to clean. So I gladly started into my chores.
PAULINE!
Trotting back into the house….”Yes Pappy, what do you need?”
I just wanted to know where you were.”
“I’m right out side your window. If you will look outside, you can see me. I’m going to go clean the porch now, OK?”
“OK.”
I get the broom and the leaf rake and decide to start in the corner.
“PAULINE!”
I sat down the broom and went inside. “Yes Daddy?”
“I wanted to know where you were.”
I’m right outside the window. I’m cleaning up the front porch. You can see me through the window.”
I go back out and I get the two corner chairs pulled out and begin to sweep.
“PAULINE!”
This went on for four hours. He would give me just enough time to get my tools in my hands and to begin using them, when he would holler. I just got to where I hollered back rather than go back in; which made him holler more.
Now I have to think to myself. I could drug him to shut him up. That’s Lewy, it’s not Daddy. He has a short term memory of 5 minutes tops. I need to get this porch finished and it’s a big porch that is very dirty. The summer of 2007 killed almost all my permanent potted plants, so there were these huge dead plants to take out of pots and toss the dead and replace with annuals.
“PAULINE!!”
That’s it!... I’m drugging him.
The persistent hollering increased in frequency, so I gave him an anti anxiety drug. He started twisting his sheets and chewing on his blanket. Then the spasms started. I gave him an anti spasm drug. If I had all those drugs, you would have to scrape me up off the floor, but no; Lewy was getting rowdier.
It got too dark to work out side, Hubbie was home and it was time to settle in for the NCAA Championship Game that Memphis threw away.
Daddy had finally settled down after the over time, and was looking out the window toward the porch. I had to wonder if he could finally see me out there working.
Yesterday was a typical Monday. After being a 99% vegetable on Sunday, Daddy…pardon me….Lewy was rip raring to go. I love days when Daddy is here and there are a few special moments to share. But I’ve got to be honest; I don’t like Lewy one bit. Lewy is an obnoxious, impatient, one year old. Only if he were one, I’d know to correct his bad behavior before the child turned two. How do you go about correcting the behavior of a one year old child that will be 6 months old very soon?
Lewy woke up early. “PAULINE!”……PAULINE!......PAULINE!
This is payback for going off with my girl friends over the weekend. All I wanted was to sleep late, maybe as late as 8 AM. But no. Hubbie leaves for work about 7 AM, Lewy starts hollering at 7:01 AM. This morning (for my –yes I know I’m late-post) Hubbie had not pulled the car out of the garage before the hollering started. Not being very happy in the early mornings until I SSS…I had not gotten my eyes open, much less to the first S.
Yesterday Nurse Goodbody removed the pump from Daddy’s right foot and ordered us a Hoya (sp?) lift. I love Hospice. Yesterday his meds arrived by mail, and his lift arrived just before dark, having been ordered no more the 5 hours earlier. So now we are free to lift Daddy up, but we need to practice doing it first on each other. The best part of the lift is if he falls on the floor, I can now pick him up by myself.
Or maybe the best part of the lift is the support sling with the bottom hole for going to the bathroom…..Yep OK the bottom hole wins. If I can just get Daddy back on a toilet seat!
Now this is where I wish to digress….We had moved Lewy into stage 7. I am now more convinced than ever that it was a massive drug dosage of whatever it was they gave him to put him in the ambulance to bring him home. At the time we thought that was probably a good idea. But just watching here and with the meds I’m giving….they must have given him enough too just not kill him. Now that I know what a drug induced sleep looks like…yeah, he was severely drugged. Way over drugged. Here we are thinking he might die within the month…well maybe…but now with his feet better, and once we get him in the lift and into a wheelchair…he might actually be in stage 6 again. I’m not the expert, maybe no one is, but heavy drugs to induce sleep are bad for Lewy’s. Really bad.
Not to say I have not given him my share of drugs to “settle” him down. I have to wonder are the drugs for me or for him? What does it matter if he throws off his sheets or chews his pillow?...Drugs for that….If he hollers at me incessantly to where I’m going crazy….drugs for that…If he gets a strained look on his face…drug for that. If I took the drugs we are to give him, I’d never be able to get out of bed…..
But I digress. We are going to get visual here today brothers and sisters. Visual. I want you to think about yours or perhaps some one else’s anal opening. Picture it in your mind. For those of you like me you might prefer to visualize your own as a matter of comparison.
Now I’m no anal coinsurer. I’m going on the assumption that most everyone’s is about the same.
Yesterday, being Monday meant that it was Hospice day. Dear Yvonne came early to clean Daddy. She is so good. Obviously her job has taught her many things…one being to wait to wash butt…last.
Lewy had been saying he needed to shit for about 3 hours, but so far there was nothing. I had been cheering him on, hoping for the delivery prior to Yvonne’s cleaning but it just was not happening.
Yvonne suggested we put on two diapers; one the top to catch it, the other to be overflow or if lucky the next diaper, already in place and ready to go, or so I thought. Brilliant.
So we proceeded to double diaper him. Yvonne cleaned his bottom and greased it with thick white cream loaded with zinc oxide.
Then the delivery came.
Yvonne was good… “Come on Mr. Lewy, push it on out”. I’m on the other side of the playing field rooting for the same team…Push it out, Push It out WAY OUT!” Just as we were about to drop back and punt, Mr. Lewy shoved the little brown odd shaped ball out past the goal line. There was an immediate whoosh of warm air that followed.
No big deal. I’ve seen this before. My Dad’s asshole. I’m sorry; there is no other way to get the visual. A normal butt has an aperture sort of thing going on that opens and closes when debris moves through the hatch. Not Lewy’s butt. Lewys butt has been permanently set on “open”. I don’t know camera speak, but if you could open the lens full open and let it stay there. No doubt like an observatory….
So here I am peering down the telescope straight into blockage just below the rim.
I looked at Yvonne. She looked at me…Oh…..Oh….I know that look…That’s the…This is YOUR JOB honey….look. Hubbie uses it at times just like this.
I put on the rubber glove…asked Yvonne if I had to go in. She shrugged her shoulders…”That’s what the nurses do.” Oooooooohhhh…..nnnoooooooo….
She pulls him farther over to his side. I now have a full face to butt hole up close and personal viewing experience. The actual opening that does not ever close any more is relaxed at about a half inch (1 cm) opening. There is no more pucker around the hole…it’s just kinda limp. The darker ring around the anal opening, at least as far as I know, does not extend out a full 2 inch radius from the edge of the anuson a normal butt - however with Lewy, it's pretty far out there. It too, was flattish with no muscular structure.
Yet I could also see feces sitting right there in the hole.
So with glove on and pulled as far up my arm as it would go….I did what Nurse Goodbody had done, I stuck my index finger in for a poke-see.
There were lumps, hard ones soft ones….Daddy was not appreciating the adventure at all. “Wooooo! Oooooooo!!!”
I bent my finger to make as much of a spoon shape as possible and scooped. A large finger full…well a palm sized finger full. Yvonne wiped my gloved hand. I went in again and again and again, until all I was getting was thick oatmeal consistency; or for you Southerners, lumped up - sat too long grits. Thick enough to hold together, but still easily squished by hand.
This was disgusting. I lost my cool and started my uncontrollable gagging. Poor Yvonne probably thought I would vomit right there, but I’m good with deep lower stomach heave –hos. Merely painful, not productive.
And there it was, the “Fecal Salute”……I found myself with my ¾ length sleeves, attempting to wipe my brow with my gloved hand at 90 degrees from the forehead with fecal matter on the palm an at least two fingers. It’s then that you realize there comes a point where you just have to stop. Getting a clean run is not happening. Then the gas, and the ooze, gas, ooze, gas, ooze. We wiped him up over and over. We had to remove and replace that extra pair of diapers.
Finally, he settled down to just farts. Yvonne was gone and Lewy and I were home alone. It was a beautiful spring day; I had flowers to set out and the front porch to clean. So I gladly started into my chores.
PAULINE!
Trotting back into the house….”Yes Pappy, what do you need?”
I just wanted to know where you were.”
“I’m right out side your window. If you will look outside, you can see me. I’m going to go clean the porch now, OK?”
“OK.”
I get the broom and the leaf rake and decide to start in the corner.
“PAULINE!”
I sat down the broom and went inside. “Yes Daddy?”
“I wanted to know where you were.”
I’m right outside the window. I’m cleaning up the front porch. You can see me through the window.”
I go back out and I get the two corner chairs pulled out and begin to sweep.
“PAULINE!”
This went on for four hours. He would give me just enough time to get my tools in my hands and to begin using them, when he would holler. I just got to where I hollered back rather than go back in; which made him holler more.
Now I have to think to myself. I could drug him to shut him up. That’s Lewy, it’s not Daddy. He has a short term memory of 5 minutes tops. I need to get this porch finished and it’s a big porch that is very dirty. The summer of 2007 killed almost all my permanent potted plants, so there were these huge dead plants to take out of pots and toss the dead and replace with annuals.
“PAULINE!!”
That’s it!... I’m drugging him.
The persistent hollering increased in frequency, so I gave him an anti anxiety drug. He started twisting his sheets and chewing on his blanket. Then the spasms started. I gave him an anti spasm drug. If I had all those drugs, you would have to scrape me up off the floor, but no; Lewy was getting rowdier.
It got too dark to work out side, Hubbie was home and it was time to settle in for the NCAA Championship Game that Memphis threw away.
Daddy had finally settled down after the over time, and was looking out the window toward the porch. I had to wonder if he could finally see me out there working.
So Lewy and I Slept Together Again
Hubbie here.
Pauline just called to see how things are going here. She and her girl friends are sitting on the balcony of a condo in Nashville watching the river flow by. My response was “Why are you calling? Go back to your party!” I wanted her to have a real break; to get away as long as she could. Right after I said that the phone went dead and I felt like a low life scum. I called her back. It was a good thing because she thought I had hung up on her. I assured her everything was fine and they were, at least in Lewy terms.
Pauline told you of her hectic day yesterday. She seems to always have that kind of day before an event and I’m pretty sure a pajama party with 50-something year old girl friends qualifies as an event. When I got home yesterday she had loaded up the cooler and some bags full of the stuff (Booze and such) she had volunteered to supply. The girl friend with the giant van picked her up and they were on their way to PARTY!! I was glad. The girl needs a break. 24/7 Daddy Duty is a really tough job; especially when it’s your Daddy.
My evening with Lewy was pretty uneventful. I had a drink. Lewy had a drink. I watched the hockey game. He watched the fan. Both, it seems, were going fine for the observer. It’s odd that even though he thinks I keep a notebook of everything he consumes, Lewy seems to take food better from me than from Pauline. He resists her but with me he always finishes the serving. Whatever the reason he consumed a cup of Lewy food Pauline had stored in the fridge and had a full container of key lime yogurt for desert. I fed myself a hamburger and we settled in for the night.
Pauline has told you that I am a very sound sleeper. She seems to think this is a bad thing but in my mind whatever will not kill me I may as well sleep through. I decided that I had best sleep in the recliner in the room with Lewy just in case. I wanted Pauline to come home relaxed and be able to stay that way for at least a little while; not come home to me having fouled something up. (I believe most of our readers are women and wives and I can just see you nodding your heads. – Right Ms. P?)
Anyway sleeping in the recliner seemed like a good idea and it was, until about 3:30 AM when I woke up with a major crick in my neck (strained muscle for those of you not from the south). Lewy seemed to be resting soundly so I decided to get in the bed for a while. Tell me, how is it that someone who at times seems almost stone deaf and be disturbed by the sound of bare feet on a wood floor? Yes Lewy awakened and wanted to know what I had planned.
“I’m planning on going to bed for a while. You holler if you need anything,”
“OK”
3:45 AM. “Umm…GMM..NDD!”
Rising I come to Lewy’s side as ask what he needs. “These covers are sliding off.” He had pushed the blanket off to one side so I covered him, patted his head and went back to bed.
4:07 AM. “HEY HUBBIE!!” Clear as bell and loud enough to be heard outside.
“What is it Lewy?”.
“Get this cat out of my bed.”
“What cat?”
“This kitten here.” Motioning to his hip, Lewy shows me where the kitten is.
“OK Lewy the kitten is gone. I’m going back to bed. OK?”
“Yeah.”
4:30 AM. “PAULINE!.” Not so clear this time but plenty loud.
Stumbling back into the room I said, “She’s not back yet Lewy. What do you need?”
“Have you seen Mama?”
“Your Mama”
“Yeah.”
Lewy’s mother has been dead for many years but this did not seem like the time to point that out so I said I had not seen her.
“Up there.” Pointing to the ceiling fan.
“No she’s not there Lewy.”
“Well she is supposed to come by to see about some work. It umnd dayr gummel.”
“OK.”
I finally determine that he wants to know when she will be there so that he can go to work with her. I can’t bring myself to tell him she won’t be coming so I opt for a dose of anti-anxiety medicine. Just to be safe I move back from the bed to the recliner and after a few more issues with sliding covers, Lewy relaxes and I fall soundly asleep. Right in the interesting part of a really weird dream a voice from outside the dream calls. It’s
8:30 and Lewy’s feet are cold. I cover him with another blanket and go to make coffee.
A while later I am preoccupied in the tiny room of the house when the phone rings. It is the call from Pauline.
Like most houses we don’t have a phone in the tiny room so it took a moment for me to get to the phone. In the latter part of that moment Lewy announces, “Better hurry up. There ain’t no backstop on that thing.” I make a mental note to have a backstop installed on the phone in the new place and then have the afore mentioned conversation with Pauline.
I have my coffee and Lewy has a good breakfast of Ensure and left over beans and polish sausage, pureed of course. After breakfast he informs me that he must get up and get dressed for work. We have the first of a least a dozen conversations about how he can’t get up until we get the wound pump taken off of his foot. I don’t think he has ever grasped the concept of the pump on his foot. There is, however, one concept upon which Lewy still has firm grasp.
I believe it was wound pump conversation number six. Lewy had asked again if I would help get him out of bed. I again explained that he could not get up until they pump was off his foot. I noted that Nurse Goodbody would be coming by next week and she would look at it.
“You remember Nurse Goodbody don’t you Lewy?”
He is looking directly into my eyes.
“You know the one you like to hug. The one with the big………”goodbodies”?”
Lewy’s eyes focus and his cheeks began to move. In the next instant his face became involved in a great large smile and he began to chuckle.
“Yeah. I remember her. I like to hug her.”
I smiled at Lewy and pulled the covers over his shoulders. Lewy relaxed and rested for a while. If he dreamed I have an idea about who some of the characters were in the dream.
Lewy slept for a while and I came in to write this story. A little while ago he woke up and called. When I tell Lewy to “Holler if he needs something”, I mean it so I went to see what was up. He was looking over at the glass doors that lead to the back porch.
“Do you see her?”
“No Lewy I can’t see anybody.”
“She is leaning against the door.”
“What does she look like.”
“All I can see is her back.”
What does it look like?”
“It’s black.”
I figured the lady’s back was black because she was in silhouette against the glass door, but a bit later Lewy called me back into the room and now I’m not so sure.
“She’s gone.”
“Who’s gone?”
“The lady over there.”
“You mean the lady with the black behind?”
“Yeah. You don’t reckon she got offended do you?”
“No, I don’t think so Lewy.”
“Good. I know she worked hard in the war. I wanted to show her respect.”
Some day the folks at Harvard are going to study Lewy’ brain. I hope they learn a great deal from it but they will never know the wonderful things that came from it.
Since this is the Hubbie portion of the Lewy Chronicles I’d like to end on a less somber note and a good friend just helped me toward that end. Mr. W called to she; if Pauline had returned. Mr. W is one of my (our) oldest and dearest friends and as such we typically greet each other with such phrases as “How are you Mr. *@%$*%*&*#@!” I informed my friend that Pauline had not yet returned. Mr. W inquired as to how my day with Lewy was going.
“Well, if you must know, at the moment I am changing a catheter bag.”
Silence.
“Don’t have a comeback for that one do you?”
2 comments:
Ms Pearose said...
I can honestly say, Hubbie, that I've never considered you to be one of those guys that foul things up. Seriously. But, I have always given Pauline credit. Hey, I gotta stand with the girls! :)
Making people laugh is more your style, unless of course your wicked humor is directed my way - then I RUN (even though I laugh later)! You've put a smile on my face too many times to not recognize that gift of yours.
Pauline sounded like a new woman yesterday, so her short time away did wonders for her. Given your description of Lewy's face as he broke into a smile, it was a good day for all. You're a good man.
Stella said...
Hubbie, you could give diamonds. You could give her rubies. Roses. lingerie. All on a silver platter. None would be a more wonderful gift to show your love than the gift of yourself to her father.
Pauline just called to see how things are going here. She and her girl friends are sitting on the balcony of a condo in Nashville watching the river flow by. My response was “Why are you calling? Go back to your party!” I wanted her to have a real break; to get away as long as she could. Right after I said that the phone went dead and I felt like a low life scum. I called her back. It was a good thing because she thought I had hung up on her. I assured her everything was fine and they were, at least in Lewy terms.
Pauline told you of her hectic day yesterday. She seems to always have that kind of day before an event and I’m pretty sure a pajama party with 50-something year old girl friends qualifies as an event. When I got home yesterday she had loaded up the cooler and some bags full of the stuff (Booze and such) she had volunteered to supply. The girl friend with the giant van picked her up and they were on their way to PARTY!! I was glad. The girl needs a break. 24/7 Daddy Duty is a really tough job; especially when it’s your Daddy.
My evening with Lewy was pretty uneventful. I had a drink. Lewy had a drink. I watched the hockey game. He watched the fan. Both, it seems, were going fine for the observer. It’s odd that even though he thinks I keep a notebook of everything he consumes, Lewy seems to take food better from me than from Pauline. He resists her but with me he always finishes the serving. Whatever the reason he consumed a cup of Lewy food Pauline had stored in the fridge and had a full container of key lime yogurt for desert. I fed myself a hamburger and we settled in for the night.
Pauline has told you that I am a very sound sleeper. She seems to think this is a bad thing but in my mind whatever will not kill me I may as well sleep through. I decided that I had best sleep in the recliner in the room with Lewy just in case. I wanted Pauline to come home relaxed and be able to stay that way for at least a little while; not come home to me having fouled something up. (I believe most of our readers are women and wives and I can just see you nodding your heads. – Right Ms. P?)
Anyway sleeping in the recliner seemed like a good idea and it was, until about 3:30 AM when I woke up with a major crick in my neck (strained muscle for those of you not from the south). Lewy seemed to be resting soundly so I decided to get in the bed for a while. Tell me, how is it that someone who at times seems almost stone deaf and be disturbed by the sound of bare feet on a wood floor? Yes Lewy awakened and wanted to know what I had planned.
“I’m planning on going to bed for a while. You holler if you need anything,”
“OK”
3:45 AM. “Umm…GMM..NDD!”
Rising I come to Lewy’s side as ask what he needs. “These covers are sliding off.” He had pushed the blanket off to one side so I covered him, patted his head and went back to bed.
4:07 AM. “HEY HUBBIE!!” Clear as bell and loud enough to be heard outside.
“What is it Lewy?”.
“Get this cat out of my bed.”
“What cat?”
“This kitten here.” Motioning to his hip, Lewy shows me where the kitten is.
“OK Lewy the kitten is gone. I’m going back to bed. OK?”
“Yeah.”
4:30 AM. “PAULINE!.” Not so clear this time but plenty loud.
Stumbling back into the room I said, “She’s not back yet Lewy. What do you need?”
“Have you seen Mama?”
“Your Mama”
“Yeah.”
Lewy’s mother has been dead for many years but this did not seem like the time to point that out so I said I had not seen her.
“Up there.” Pointing to the ceiling fan.
“No she’s not there Lewy.”
“Well she is supposed to come by to see about some work. It umnd dayr gummel.”
“OK.”
I finally determine that he wants to know when she will be there so that he can go to work with her. I can’t bring myself to tell him she won’t be coming so I opt for a dose of anti-anxiety medicine. Just to be safe I move back from the bed to the recliner and after a few more issues with sliding covers, Lewy relaxes and I fall soundly asleep. Right in the interesting part of a really weird dream a voice from outside the dream calls. It’s
8:30 and Lewy’s feet are cold. I cover him with another blanket and go to make coffee.
A while later I am preoccupied in the tiny room of the house when the phone rings. It is the call from Pauline.
Like most houses we don’t have a phone in the tiny room so it took a moment for me to get to the phone. In the latter part of that moment Lewy announces, “Better hurry up. There ain’t no backstop on that thing.” I make a mental note to have a backstop installed on the phone in the new place and then have the afore mentioned conversation with Pauline.
I have my coffee and Lewy has a good breakfast of Ensure and left over beans and polish sausage, pureed of course. After breakfast he informs me that he must get up and get dressed for work. We have the first of a least a dozen conversations about how he can’t get up until we get the wound pump taken off of his foot. I don’t think he has ever grasped the concept of the pump on his foot. There is, however, one concept upon which Lewy still has firm grasp.
I believe it was wound pump conversation number six. Lewy had asked again if I would help get him out of bed. I again explained that he could not get up until they pump was off his foot. I noted that Nurse Goodbody would be coming by next week and she would look at it.
“You remember Nurse Goodbody don’t you Lewy?”
He is looking directly into my eyes.
“You know the one you like to hug. The one with the big………”goodbodies”?”
Lewy’s eyes focus and his cheeks began to move. In the next instant his face became involved in a great large smile and he began to chuckle.
“Yeah. I remember her. I like to hug her.”
I smiled at Lewy and pulled the covers over his shoulders. Lewy relaxed and rested for a while. If he dreamed I have an idea about who some of the characters were in the dream.
Lewy slept for a while and I came in to write this story. A little while ago he woke up and called. When I tell Lewy to “Holler if he needs something”, I mean it so I went to see what was up. He was looking over at the glass doors that lead to the back porch.
“Do you see her?”
“No Lewy I can’t see anybody.”
“She is leaning against the door.”
“What does she look like.”
“All I can see is her back.”
What does it look like?”
“It’s black.”
I figured the lady’s back was black because she was in silhouette against the glass door, but a bit later Lewy called me back into the room and now I’m not so sure.
“She’s gone.”
“Who’s gone?”
“The lady over there.”
“You mean the lady with the black behind?”
“Yeah. You don’t reckon she got offended do you?”
“No, I don’t think so Lewy.”
“Good. I know she worked hard in the war. I wanted to show her respect.”
Some day the folks at Harvard are going to study Lewy’ brain. I hope they learn a great deal from it but they will never know the wonderful things that came from it.
Since this is the Hubbie portion of the Lewy Chronicles I’d like to end on a less somber note and a good friend just helped me toward that end. Mr. W called to she; if Pauline had returned. Mr. W is one of my (our) oldest and dearest friends and as such we typically greet each other with such phrases as “How are you Mr. *@%$*%*&*#@!” I informed my friend that Pauline had not yet returned. Mr. W inquired as to how my day with Lewy was going.
“Well, if you must know, at the moment I am changing a catheter bag.”
Silence.
“Don’t have a comeback for that one do you?”
2 comments:
Ms Pearose said...
I can honestly say, Hubbie, that I've never considered you to be one of those guys that foul things up. Seriously. But, I have always given Pauline credit. Hey, I gotta stand with the girls! :)
Making people laugh is more your style, unless of course your wicked humor is directed my way - then I RUN (even though I laugh later)! You've put a smile on my face too many times to not recognize that gift of yours.
Pauline sounded like a new woman yesterday, so her short time away did wonders for her. Given your description of Lewy's face as he broke into a smile, it was a good day for all. You're a good man.
Stella said...
Hubbie, you could give diamonds. You could give her rubies. Roses. lingerie. All on a silver platter. None would be a more wonderful gift to show your love than the gift of yourself to her father.
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