I didn’t post up yesterday on Lewy’s condition, because there just was not much to say. He remained asleep all day, through the Nurse’s Aide’s bath, and through the regular nurse and me changing his foot bandages with the suction pumps.
Near sundown he started getting agitated. We tried to feed him some, give him juice, but he would hardly take any of it. He became so agitated that I broke down and gave him the meds that I think are making him worse. It’s very selfish of me. I cannot handle the struggling and straining to get up and out of the bed.
This morning, I put the white beans I made last night in the blender and pulverized them into a paste. I poured up about an ounce of grapefruit juice and went over to wake up Daddy to feed him. An eye dropper is the best thing I’ve found to get something wet in his mouth. After a few droppers full of juice he was better able to open his mouth and attempt communication.
“Are you hungry?”
“uuunummnununum…no”
“You have to eat Daddy, you just have to eat.” I turned to get him some more grapefruit juice and he started coughing up mucus from his lungs. Now, anyone who knows me knows I can take blood, pee, and chili shit, but I cannot take body fluids that are slimy and stringy….I’m going to hurl just thinking about it…..deep breath…..calm…
As I approached daddy with the juice, he spat that enormous wad of slime at me, hitting my face and hair.
I was doubled over gagging and crying. “Why did you do that to me Daddy? Why?” I looked at him, I know with eyes full of rejection and disappointment. In my heart I don’t think he would do that to me on purpose but yet he is staring right at me. He started working up another glob.
I turned, went to the kitchen to wash off my face and hair, still sobbing. I looked back around at him, and he launched this loogee out over the bed rail into the middle of the living room floor. ….Oh geez, now I have that to clean up, I will puke, no way around it. I grabbed a washcloth and wet it…….Deep breath…..Deep breath….Ok, lets go….come on….get it together…..I finally got my feet to move. I approached his bed…his eyes were fixed on me.
As I turned the corner to go around his recliner to ward the bed, I looked to the floor to see where the loogey was. There were dozens of them. I can’t believe I managed to walk through them and not step in it!........Breathe Pauline….Breathe….run outside….quick…..I ran out onto the front porch. Lewy could see me through the window. I doubled over and had an uncontrollable gagging fit lasting well over a minute. Afterwards, I stood up, took several deep breaths and went back in. I was able to swab down the square yard of floor that was pelted with the phlegm.
Gagging I ran the washcloth to the washing machine and tossed it. Upon arriving back at Lewy’s bedside, he was wide eyed looking at me and trying to talk. I held a glass of water with a straw for him to drink. He took a couple of sips and spit it out.
“Daddy if you don’t drink something you will die. You have to drink.” I put the straw up to his mouth, he didn’t want to take it. “Daddy you have to drink something. This is good cold water; now come on….” He took a few sips and swallowed them. A few sips more and he had 8 ounces of water in his belly.
As I looked him over, I noticed the bed rails were covered with dried up phlegm. The bed under him was wet up to his shoulders where he had been spitting up and it was just running down his neck and shoulders to the bed…an then there was the puddle of goo.
LOOK AWAY! LOOK AWAY!!! The gag reflex was working overtime today. I got another clean cloth and shut my eyes and wiped around the shoulder. …….breathe……breathe…..
Since I’m here alone with him, and there will be no nurse by today, The best I could do at the moment was to get a disposable pee pad and wedge it under his head and shoulders. Every time I came into view, Daddy was staring at me.
“Pauline….?”
“Yes Daddy?”
“Is Momma gone?” “Yes Daddy, Mommas gone.” (It was exactly 11 years ago Sunday) Daddy burst into tears. I cried with him. I miss my momma so much, but I’m glad she is not seeing Daddy this way.
I put my hand on Daddy’s forehead and gently stroked his white hair back. He reached across himself to take my other hand that was on the bed rail. He squeezed my hand. I cried more, he cried more.
Daddy looked at me and asked “where is everybody?”
“There’s no one left but me and you Daddy. Momma’s gone. Brother is gone.” He cried out loud then.
“unmunm take….nunm …me…out…and…dump………..”
“No Daddy, I’m not going to take you out and dump you.” He has always talked about when the time comes to just go dump him in the river….
I turned to get him more water. He refused the drink. “Daddy, you have to drink. You HAVE to.”
“I don’t want to.” Plain as day…
“If we don’t get some fluids in you, it won’t take but a few days, now come on drink.” He turned his head. I stopped with the water and returned to his bed side.
Daddy looked me straight in the eyes, reached up to take my hand again, and said “I want to kiss you.” Now I’m crying again. My Dad never showed any affection towards us kids, especially me. I leaned over the rail and kissed him on the forehead, still sobbing.
When we remade eye contact he said “I want umnum kiss you.”
So I bent over and pecked the tip of his nose. He grabbed onto my shoulder to pull me down for a lip to lip kiss.
I know that in later stages of dementia, that Lewys may do inappropriate sexual things; and now that I clearly really do look like my mother, what he was wanting was a wet smooch.
I allowed our lips to touch, but recoiled as rapidly as a double barrel shotgun, with both barrels blazing. He seemed a bit shocked, looking at me puzzled. I supposed he wondered if he would ever get another chance for a last kiss with Momma.
2 comments:
pearose said...
Wow Pauline. Lewy's emotions are raging full force, it seems.
Sundowning is also a common theme for dementia patients. Based on the research I have found, I really think it goes back to our nomadic forefathers who had to set up camp by sundown. We've only had electricity for a short while in the human experience, so night time and darkness has been associated with uneasiness throughout our human history.
I met an Australian writer online, who was dying of cancer at the time, who had lived with the natives (Aboriginees) of Australia. Based on my question left on the Anthropology board on this very subject, he took it upon himself to do some research with the tribes he knew and asked about Sundowning amongst those who still live without electricity. Yes, they still experience a sense of unease at night with angst regarding unknown predators. Work (based on survival needs) have to be completed by sundown.
Agitation is a part of sundowning. Every day, right before Sundown, begin to play music to engage his senses and brain function. His brain is no longer functioning normally and again, the 'survival functions' are located in the brain stem - often one of the first areas of the brain in Alzheimer's Disease to become affected (not sure about LBD - does anyone know that?).
Because of the inability to rationalize the unease they are feeling, agitation and fear become overwhelming behaviors. Engaging the senses with music, a familiar taste or a familiar 'feel' (like Tweak) will have a calming influence on them. They are still connected with reality through those familiar sensing experiences (long term memories). Anything associated with short term memory will most likely have been damaged by the ravages associated with Dementia. So, keep the long term memory sensory experiences available in some form (and you will have to decide which is the most effective in your case), so there can be a connection with reality.
Smell is the last sense to be reduced by age, so find a smell that will engage his olfactory senses. The senses involving smell are postiively associated with memories (and long term memories are the ones that last the longest, obviously).
I am so sorry about what happened. He's in there, as you well know. The rest is the disease. Depression, as a comorbid factor with dementia, can do an overwhelming amount of damage as well. You are dealing with his depression, too. The hardest aspect of this for you is that you may want to do the fighting for him, since he may be giving up. It's a tough situation.
Take some time for yourself today. Hey - gorgeous weather out there (if you are a duck or turtle!), but this rain will bring us a green Spring.
There are many in support of you. Don't ever think that you are alone. We may not be there in person, but you have the respect of many and you probably have no clue why. Your strength and willingness to take on this huge responsibility is nothing short of extraordinary.
3rd Wife said...
Sundowning is also common in children. I experienced it with both of mine, but particularly with my oldest who was the colicky one. It is hard to deal with, no doubt. I remember the feelings of hopelessness because I knew that nothing I did was going to make a difference.
So...I say again, don't let guilt be a part of your feelings. Quite easy for me to say, I know. But you truly are going the extra 100 miles and doing all that you can do.
Your post made me cry today. Very touching and very raw.