Grey’s Anatomy had the episode where Meredith’s mother “woke up!” The character was a brilliant surgeon with Alzheimers who woke up one morning completely coherent and they had this big visit. Really? Does that ever actually happen? By the end of the Christmas season I had just about enough of Al. And I thought, wouldn’t that be great? If he actually “woke up” for a day – man I’d give him a blast – just how bad this is, can’t dress himself, doesn’t know the difference between a cell phone and shoes, can barely tie his shoes, how he has to be told everything 5 times. How tired I am and how I never signed on for this.
One day. Can you imagine getting him back for one whole day? To talk, and it actually make sense. To participate in conversation, get his opinion, talk with friends about the world, politics, the hockey strike, our next vacation. He was great. LOVED to talk politics and hockey. Loved to cook, to enjoy a new beer and a nice wine. Spend time with friends. Funny, relaxed, confident. One day. To have him back with me one more time.
Jan 1/13 Its a new year. Another year. And there's the big question, can I do another year? Took a weeks holiday and headed to Arizona for sun and fun in early Dec. Then home, busy getting organizaed, Christmas, time off, time together. A lot of time together. Too much. I'm not writing because I can't focus on the positive, I can't keep the"good"in the front of my mind. I'm thinking up childish things, maybe I will hide his boots. and all his runners? hikers? Mine too? Washed the floor today and it lasted about 1/2 hour before he came in from sweeping that skiff of snow off the sidewalk and walked all over the clean floor. I can't make him understand, or is it agree? Or just quit? - SLIPPERS in the house. As soon as he is bored fro more than 2 min its shoes on, boots on. Can't you just do what I ask? And he just looks at me. Sometimes I think that now he hears what the cat hears "Al, blah, blah, go, blah, blah, NO, blah, blah, AL!"
I refused an invitation over the holidays. People from work. Would have been really nice but as only a very few who know (including the host) I just saw it as one long awkward night. I mean I hardly know what he's talking about 3/4 of the time. A group who only know him to see him? And being the big visitor he is, loves people, loves to visit... "do you mean when that big guy went under and all the others were drinking, and then the cat followed and then everyone laughed and then we all went down the hill." Nope, didn't need to see those confused faces thanks.
And so now, I find the New Year to be pretty depressing. Really, what should I look forward to? Language skills deteriorating even more, finally will get really lost trying to walk home and losing that one last little piece of independence that he has. Wrecking more things around the house. Seeing more conspiracies, latest being a saint of a woman who has been nothing but very kind, supportive and giving of her time and energy to him "She's a thief!" She knows it is not really him, but I think her feelings are a bit hurt anyway. What else will the new year bring? Struggles to tie own shoes now, $1 says that is gone in 2013. Eating habits getting just a bit odd - how much longer will we be able (and welcome) to go out to restaurants with friends? Zellers has big sales - I bought 4 pairs of gloves, all the same cause I know that he just keeps losing them and I thought, well hey - replace one a time. And without a doubt - more drugs. Doc has already suggested we can keep those little delusions at bay...
I don't believe that good long term care exists. One bath a week - he often needs 2 a day. Never to go out and about walking as he likes, no cats to snuggle on the bed with. No sweeping/shoveling doing anything he believes is helpful and feels so good about. It will all be taken away. And it will have nothing to do with him and what he needs. It will be me. When I can't do it anymore.
This is Alzheimers and I am Alz wife.
"Don't yell at me." I feel like I have been yelling all weekend. And now it is 5:22 am and he has been talking, counting, tossing/turning for 2 hours. And I have to be up at 6:30 to get ready for work. I have got him a glass of water, I have tried talking to him, "what is wrong, what is bothering you" He doesn't know. But when hemutters at night it is like he is distresed and I think he is having nightmares. What does he dream? What is it he sees that makes him so anxious, so frightened? He is too hot, too cold. I talk about his day tomorrow, it is going to be nice, he can go for a really nice walk. He will go to LSCO, to yoga, he will see friends. uhha uha He stops for 5 minutes and I am just about asleep and then thump, thump, thump his leg over the edge of the bed. Now we are both mad. Twenty minutes later he has come out to apologize. "its ok honey, don't worry about it go back to bed. But he doesn't know where that is. I take him there, cover him. He is up 2 minutes later, he has to pee. He won't stop, all week end, he won't stop. Gotta get going, where are we going, when are we going out? What can I do? I put the shoes back in the hall closet 5 times on Saturday morning. I have hung his coat up 3 times. Every time I walk into the dining room he has moved this chair. I ask him why - well why does it have to be there he asks, put out that I am questioning it. Then he starts to take things out of the pantry. He is a child now, always needing to be entertained. If he is not included, then "there is nothing for me here". My friend came to help me on the w/e - she knows how to do lots of things that I don't know - things he always took care of. The barbeque has not been working and she finds the connection to the gas needs adjusting. New shower heads, helps me put up a new towel rack. Things he wants to help with but cannot. It must be awful - he knows he can't do anything, he wants to help, he wants to do . The fact is , it is just useless. He is useless. And I am useless to do anything about it.
Well that stopped me cold. Hit you? I have never hit you. We have never hit each other. Our families are not hitters. What the hell? I was telling me friend about it - I was walking out of the bedroom and flipped off the light "hit" the light would be the expression we have often used and when I turned it off he was not quite ready to leave the room....its all I can think of. I have done this a few times, trying to hurry him up so I shut off the light as I am leaving thinking (I guess) that will tell him to move.. but appaently he is quite offended by it.Actually I find that he does not like to be hurried these days, which annoys me to no end. On one hand as soon as the alarm goes off in the morning he jumps up and hits the shower (again with the hitting). Even on weekends, the minute he opens his eyes its a GO! but at his pace, not at mine. So even though he will never turn off a light again and I seem to be turning them off continually....he doesn't like them turned off when he is still in the room! What was it someone said - why do WE continue to think they will do it differently?
We're at superstore on Saturday and he wants to check out the little coffee nook, because his sister and his dad might be there. So this time we walk all around the store, find the coffee nook and I show him - they are NOT there. Your dad is GONE. Now he's mad. And takes off down to the other end of the store. So I am mad too and try to keep shopping which of course lasts for about 2 minutes then I can't help but go look for him. He has walked around the whole store once and come back to the produce section. I ask him if he wants to help me finish the groceries and he says yes and on we go.
But the issue of his folks must have come up 3 or 4 times over a couple of days. I feel like screaming THEY ARE DEAD!!!! Then he says - do you think my sister knows that? Are you kidding me? But then I think of his sister and don't doubt for a minute that when he asks her about them she says they are ok.
So what is important? I always thought that no matter what I would stick with the truth, but really - then what?