Lewy is getting madder and grouchier every day. He wants to get up and out of bed, but with the hoses coming out of his feet and the catheter it just does not seem likely.
Therein lies the big dilemma. Do I try to heal him to get him up and about? Or do I drug him to keep him comfortable? If I drug him, he won’t eat or drink enough to thrive. If I feed and nurture – get his sores healed – and get him off the catheter, which will take several months according to the nurses; to what purpose really?
By then he will not know who he is or have any memory of his family or life. He told us back when he has thinking clearly, never to prolong, never to hook him up. It sounded so simple at that point in time. All very neat. Very logical. Clean.
But now, when I’m standing there looking at my Father, it does not seem so easy any more. Lewy drives me crazy with the fussing and hollering and demented conversations about nothing and everything all at once. But yet, he is my Dad and he’s all I have left of my immediate- blood- family. Other than him, I have only my nephew and my Crazy Aunt Tom.
So is that it? Is it pure selfishness on my part to try to prolong his life, no matter how miserable he is? I know he won’t really get any better. At best, he might sit up in the bed or stand…but walking…No.
He was barely doing that before the surgery.
Today I will drug him heavily. We must clean him and change his bandages. Scrubbing the raw meat in the foot sores until they bleed is too much to expect anyone to put up with out pain meds.
I suppose that’s the way it will go. Feed him one day….. Drug him the next.
Yesterday, for some reason Lewy asked me where my bike is. This threw me for a minute…actually long enough for him to drift off into La La Land…but it reminded me of my bike that I had when I was a kid in grade school.
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It was Christmas morning. I had gotten wise to the Santa thing the year or two prior, so I had no expectations of reindeer and sleigh bells. I also knew by this age that Daddy was kin to Scrooge and that Momma was responsible for all things Christmas.
As any normal kids we were up at the crack of dawn to run to see what was under the tree. Now that I think about it, I’m not sure why Momma persisted in the hiding the presents routine, since we both knew about Santa. But never the less the rouse was on…
We ran in and opened up all sorts of clothes (Yuk – Momma was practical. We needed clothes, why waste an opportunity like Christmas on toys). There was some candy but mostly things I could have cared less about, socks, shoes, some school supply things. Very boring.
Certainly at that age, I’m sure my acting skills were not refined to point of convincing either of the parents that I was not terribly disappointed in what “Santa” brought. I took my new things to my room, and put them up. (Or threw them down…)
I was so very disappointed. I don’t know what I expected, because I knew that “Money doesn’t grow on trees”…yes… heard it many times… We sat down to breakfast, ate, and Momma then proceeded as always, to clean up the kitchen. Daddy went to settle into his recliner for a day of rest from his otherwise 7 day a week job.
I went over and plopped down on the couch. I didn’t really have much to say about anything. I was sulking, and doing a very nice job of it, thank you very much… Daddy eyeballed me for a few minutes then told me to go out to his car and get his papers in the back seat for him.
Oh crap, I don’t want to go out there…I’m mad…I want to stay in the house, I want to pout. But as with most all kids in those days, if Daddy said do it, you did it right then, and you offered up no lip.
So I put on my coat and went out to his car, opened the back door and looked inside. There were no papers there, I didn’t see what it was that he wanted me to get. So I turned around and went back into the house, still sulking about, still mad at Santa.
“There’s nothing there.”
“WHAT!! WHAT DO YOU MEAN THERE"S NOTHING OUT THERE!?!” He bolted up from his chair. "It has to be in there….You didn’t actually go look did you?” The accusation;…always accusing me of not doing; or doing; whichever was the wrong move…
“I looked - there are no papers in the back seat of your car!!” I was mad.
He looked at me curiously…."Wasn’t there anything in the back seat?’
“Well, yes, there was a bicycle.” I stomped over to the couch, mad at him, mad at Momma, mad at the world.
I’m sure at this point Momma and Daddy must have wondered what on earth was going on in my head…Daddy asked me why I didn’t get the bike out of the car…
“Because it’s not mine;.... why should I?” I was getting madder. Not only did I get a bunch of crappy clothes for Christmas, but there was a really cool metallic blue girl’s bike with white handles and pink, blue and white streamers in his car that he was getting for someone else….
“Pauline…go get the bike. That’s your bike...”
I was stunned… “MINE!?!” I didn’t wait for an answer. I didn’t bother to close the door behind me either (Sin #1: Thou shalt always close the door behind you. - were ya being raised in a barn?) I ran to his car, flung the door open and started to pull out the bike. It had 24” wheels with white sidewalls…By now Daddy had come out to help. Momma was in the door watching.
We got the bike out and I had to get on it immediately…did not matter that I didn’t know how to ride. So Daddy held on to the rear fender and I sat on the bike while he pushed and I steered. It was wonderful!
After a bit of that we took the bike inside for Daddy to put the training wheels on. He was skilled with tools and made quick work of it. Then outside we went. Daddy was there every inch of the way until I got steadied enough for him to let go. I remember seeing Momma watching with her hand over her mouth…afraid I would break both of my legs no doubt.
Now you might be wondering how stupid can a kid be that would not realize the brand new blue metallic girl’s bike in her Dad’s car was not for her. But with Daddy, you never knew. He swapped and traded for all sorts of things and he also was big in the Masons, Rotary, and Lions Clubs. They were always getting things for kids that didn’t have much. So no, it never even occurred to me that it would be my bike. We couldn’t afford those expensive things; at least until that Christmas when Daddy, not Momma, brought me a bicycle for Christmas.
5 comments:
denise said...
I read your blog everyday (and love it) and have learned more from it than any support group on-line or off. My father died last October in his sleep from a number of things, none of which was dementia. We knew the end was near, there was nothing that could be done or say except to thank my dad for being my dad and to tell him over and over that I love him. It was very, very hard on the family when he died, peacefully in his sleep thank God. I think of him several times a day and am at peace knowing that I told him what I wanted to tell him and that he suffers no more. I know that he is in Heaven and just loving it.
First of all let me say that I admire the both of you tremendously for the care you have given your father. Caregivers always face the same dilemma that maybe we're not doing enough and are always feeling guilty when our emotions play into the situation. I'm facing the same situation with my husband as he, too, has Lewy Body with AD; his prognosis is 1-2 years. There are days when I believe he could go on much longer and other days I think it won't last out the year. What to do when the end is near? We all face this difficult decision when a serious illness strikes and early on it's easy to say what we would do. As the illness worsens, decisions become more difficult. I wish I had an answer for you. I was 11 years old when I met my husband and November will mark our 40 anniversary, God willing. Making the decision not to prolong a loved ones life is one that I can not be fathome. I pray that when my husband reaches that point that he peacefully dies in his sleep and joins my father in Heaven.
God bless you both.
kddove said...
i wouldn't have know it was mine, either....
Stella said...
We had such a horrible day with Freddie at the hospital yesterday, my heart was sad. When I sat down to read your post, the tears broke through as I wept for both Freddie and Mr Lewy. The bicycle story is a treasure. At the end of the story, my tears were tears of happiness for a younger Daddy and for you. Freddie has created a few miracles also for his three daughters and one son. Memories are golden. It helps so much.
oldfriend said...
I know through it all, you will make the right choices both you, Pauline and Hubbie. Thankfully, your Daddy spoke his wishes about prolonging his life. Every step you take now only serves to make a path for others to follow...bless your labors.
pearose said...
I really like hearing the stories of you and Lewy when you were together as Parent and Child. That brings us readers a new perspective of who Lewy is and of the bond between the two of you. Your Dad may be kin to Scrooge on one side, but he's kin to Santa on the other side - considering his joy at being able to give you a bike and his interest in helping out others less fortunate.