Thursday, December 22, 2005

Alzheimers SUCKS

I have an uncle - my dad's oldest brother - who lives about 30 minutes from me. I wouldn't call my dad's side of the family "close" per se. More the kind of uncle I would occasionally see at family gatherings that centered around my grandmother type of relative. I never had any problem with him - he was nice enough - but I also never really knew him. He was always just Uncle T and we'd see him from time to time. He was married to H for decades and they had two kids - my cousins R & C - both of whom are older than me. They were always a more casual family than my own. My mother would make us dress up - or at least dress nicer than normal - when we'd go to Grandma's house and see these people. They always got to come in jeans and sneakers. My mother always made us write thank you notes, but these people? Not so much. So again, nice semi-distant relatives who lived 2 hours away and we saw a couple of times a year. Get the picture?

Now I live much closer to my uncle. His kids live farther away from him than I do. His wife, my Aunt H, died 10 years ago. He lives alone on 152 acres in the same house they've had since before I was born (and in case you need reminding, that was 36 years ago yesterday). In other words, a long-ass time. Like a lot of men who push 60, his memory started slipping. Nothing major at first - just little lapses that seemed like nothing. But a few years ago those little memory lapses started becoming bigger and bigger. Until it became obvious that he was dealing with something major. More than just aging into your 60's. My cousins intervened and discovered he'd been doling out butt-loads of cash based on bank statements that were a few years old. He'd nearly run out of cash when he was once quite flush (he did quite well financially). He got angry about something and said some terrible things, only to have no recollection of any of it the next day. Things like that. They had him diagnosed and yep, Alzheimers. Shit.

He had his driver's license revoked with that diagnosis. But that didn't stop him from driving - he drove into town everyday to get his mail and to eat in his favorite restaurant (the owner of which he also helped finance, we've come to learn). So my cousin had to physically get rid of his cars. They had to arrange for a home-health nurse to come to his house once a week to make sure he was set up with his meds (which he was forgetting to take sometimes) and take him to the grocery store. Then arrangements for Meals On Wheels got set up. My cousin R (male) completely took over his finances. He told me he thought they'd be moving him into a home of some sort designed to help memory patients by the fall. But his sister, C, is resisting that idea so he's still living utterly alone and on his own.

I've had tremendous amounts of guilt over how infrequently I've been to visit him. He's really not that far away, and yet making the trip is an ordeal, especially with the kids. He's not set up for kids. He gets confused so easily and it's awfully uncomfortable to see him trying to cover for what he obviously does not know. His long term memory is intact and sharp - ask him something from his childhood or even 15 years ago and he knows. But ask him what he had for breakfast and he's incapable of telling you. It's so, so sad.

I got his Christmas letter the other day and it broke my heart. It was a thinly disguised plea for visitors and company. It told the terrible tale of loneliness and solitude. He was saying things like how the deer are his only company these days. *crack* - the sound of my heart breaking wide open. I'm an awful niece! Here I am the relative living closest to him and I only see him once a quarter, if that. So today I broke down and called my uncle and invited him to lunch. The kids and I would drive down to him and take him out. This was at 9am. I told him I'd be there in 2 hours - 11am - and we'd visit and go have a nice lunch out of the house. Nothing fancy - maybe just McDonald's since I'd have the kids and all. He readily agreed.

When I got to his house he'd already eaten, having forgotten we were coming to take him to lunch. The Meals On Wheels people had stopped by with his food for the day and he simply ate it. But he was still eager to go out so we did. But not to McDonalds - a place he's unfamiliar with (silly me - shoulda thought of that), but to his time-worn favorite restaurant where everyone knows him. We spent about an hour in that restaurant and I was told at least 5 times that the husband of the waitress likes to hunt on his property. Sometimes within 5 minutes or less of each other. He had no memory whatsoever of just having told me that fact. None. It makes me want to cry. I don't think he asked about Mr. Chick because he couldn't remember his name. I made sure to refer to the kids often by their names so he'd know them. I asked him if he knew yet what his plans were for Christmas - was he going to R or C's house? He said he didn't know all the details yet (in other words, he couldn't remember). I told him that I'd love to have him over to our house for a nice dinner on Christmas Eve if he was going to stay in town. We'd come get him and take him home and everything. He said he'd let me know (he won't - he wont' remember to). Nicholas asked him where his Christmas tree was and cannot understand why someone wouldn't have one. Uncle T didn't have an answer for him. Turns out my cousin R is coming down tonight to stay the night and take him back to Portland for Christmas. But earlier my uncle didn't know that.

When I dropped him back off at home after lunch he got out of the car and went to the side garage door to go inside. This is the door that has served as the primary entrance to the house for years vs. the actual front door. The door was locked. It was locked when I arrived and I had to go to the front door for the first time IN MY LIFE. And for some reason, that's the door we left from when we went to lunch. But one hour later my uncle could not remember this and stood at the garage door, completely befudled because it was locked and he didn't have his keys. He just sort of looked at my questioningly, as if to say, oops! I'm locked out! I've learned how to best work with his illness so as to not embarrass him and simply got out of the car and told him I would check to see if the front door was unlocked (knowing that it was). I opened the door for him, gave him another big hug, and got back in the car. Just then, a light flashed for him and he was able to connect the dots and understood that we'd left the house from the front door. I want to cry just thinking about it. I'm sure he would've eventually thought to check the front door had I left before he was inside the house, but there's no telling how long he would have stood there, in the drizzle, wondering how he was going to get inside if the door was locked and he didn't have the key.

My uncle T is 67 years old. I'm sure that the fact that he's so alone and lonely and isolated is contributing to his illness. I mean, think about it - wouldn't the days just sort of blur together if you never left your house, rarely had visitors, and had nothing to pass the time except the tv and computer? I'm sure I'd begin to lose it in those conditions. He lives out in the country a few miles from town, so it's not like he can just take a stroll into town to visit with friends he'd had for a lifetime. He's very dependent on people coming to him. Although, the exercise would do him good. He's overweight (has been for as long as I can remember) but now he's got shortness of breath, too, from simple lack of activity. He starts panting just walking from here to there.

One of my New Year's resolutions - in additon to all the old tired standard ones about losing weight, blah blah blah, is to be a better niece and visit him more often. I would bring him back to my house, but he's not nearly as chatty when he's somewhere he's unfamiliar with. It's important for him to stay in surroundings he knows well. So we'll just go to him. For as long as we're living here or until my cousins decide he needs assisted care. I'm glad I was able to brighten his day today just a little bit, but again, I feel so awful that such a little thing makes such a big difference and I've been shamefully wrapped up in my own life to just go and visit. VISIT! That's not a hard thing to do, and yet I've not done it often enough. I resolve to do better.

What makes seeing the decline of my uncle even more painful to me is the realization that my own father is starting to show signs of aging. He's not an Alheimers patient yet, but his memory does have some holes in it from time to time, and his hearing is going. He now has to wear digital hearing aids in both ears. He gets confused in crowds and chaos of having all of us plus the grandkids running around wears on him and addles him just a bit. I am simply incapable of conceiving of life without my father and have turned a blind eye to his various "ailments" but seeing my uncle today has made me face the fact that they're all aging and THAT JUST SUCKS!!

I totally agree it is so hard to see our parents aging. My parents have always been the "young" parents. I'm a year older than you (Happy Birthday! btw!) and my mom just turned 60 and my dad is 62 and retiring next week (?!). Where does the time go? My inlaws are in thier 70's. My mil really concerns me. I work from home and have to go out on appts during the day. In October, my mil forgot to be here when Alaina got off the bus. Totally forgot her! Thankfully my neighbor was home and called me. Oy! She offered to help me wrap presents, but I was afraid that they would be tagged wrong. I know the day will come when we are faced with those hard decisions about what to do with our parents. I am not looking forward to it at all. Bill is an only child so it will all fall to us. And I am much closer to my parents than my brother is so I'm sure their care will fall on me too. I seriously commend you for putting forth the effort for your uncle. Alzheimer's is so &^%@! hard on the family. My grandmother had it and it just breaks your heart. Please don't bash yourself for not seeing him more often. You do your best. And you have two little ones to take care of. Most family members of a patient don't even put forth that much effort. So again, I commend you.

Blessings to you and yours. Merry Christmas!

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