Please, visit the Home Page of a most wonderful Usenet group - alt.support.alzheimers - and bring your questions and frustrations. I'm not really a support group type but these folks are awash in information, experience and compassion. It really helps to vent and to know you're not alone. If you want to write to me, please don't hesitate.
MY DAD, Walter, is living in the "Harmony" wing of Freedom Village, an assisted living community about ten minutes from me. We brought him with us to Florida September 2001. It was the best thing we could have done for him. The disease marches on but his emotional being is so improved in this new clime, it's almost like a reversal. He was living in the best place I could find for him up north. It can't hold a candle to Freedom Village but it was a far cry better than the other assisted living places he'd lived. They were all ok on the surface but offered little to nothing in the way of nurture or amusement. He was dying of boredom. Most of the employees didn't do much and many were real short term. I wish I'd known then what I know now but it's easy to be deceived even when you know what to look for and Things Change. I'd say one of the most important things to look out for is staff turnover. Freedom Village's caregivers are special folks. The residents are encouraged to participate, to get out of their rooms and socialize. It's so different from up north. I just can't tell ya! But still, if you are the voice of your loved one, you must be alert and be vocal. That's my job and I'm good at it.
If you're loved one is in a community you don't like and can't change, find a better place. There are options and it really is less trouble than you might think. Get surveys from the state licensing agency, talk to the families of some residents, do the best you can but DO IT. Don't settle for anything less than good. Moving to Florida from Virginia was rather a bit more trouble than the other moves dad made but that was bad timing as much as anything. Terrorist attacks and tropical storms can really mess with the best laid plans. But that's a story for another time. Suffice to say, it was worth every bit of trouble.
Assisted living is expensive but dad was a very farsighted fellow, planning for everything but meteor strikes. He had a real fondness for insurance. The reason he can afford to stay in such a nice place is because he has a long term care insurance policy. Folks may tell you it's not worth it. It's not if you don't need it but if you do...
Dad's incredibly forgetful and confused but he's doing pretty well these days. I'm amazed how pleasant he's been, all in all. I don't think he's ever been typical, though looking back there were typical clues... While my mother was ill he simply couldn't concentrate or help me care for her effectively. He became a bit paranoid then and stayed paranoid for months after she died. He came up with all sorts of bizarre fantasies and couldn't remember if he ate or that he'd just called or any number of things. Something was very wrong, something more than depression. He agreed and we went to his doctor who brushed us off like nothing. Why do the so called professionals disregard those closest to the victim? It seems to be a pattern. Dad's doctor moved out of the area then so when dad was admitted to the hospital a few months later because of a couple fainting spells the hospital assigned a doctor. The new guy determined the fainting was because of dad's blood pressure medication but there were other things -- memory lapses, confusion, paranoia -- just as I'd seen and worried about some months before. A neurologist was called in and the diagnosis was Alzheimer's.
Mom and dad had set up trusts and given me power of attorney years ago, thankfully. They'd pretty much charted the course. My name went on dad's checking account and safe boxes. He knew he ought to move into assisted living but it was still quite a battle. One morning we were finally set to sign a lease that afternoon and he backed out (oh! the hair pulling! the wailing! the gnashing of teeth!). Nearly a year went by before he made the move. But he did it and he gave up driving by his own decision. I've since realized just how fortunate I am that he did that himself. And just in time, as it turned out. The Alzheimer's progressed rapidly for a while. We went through the seemingly endless months of him calling us every minute or two. He had to move from assisted living to a memory impaired facility in just 5 months. He went along at first because he was so apathetic. He did go into a fairly mild escape mode though. After a few months of that I told him if he could get out he would. I said call a cab, call a mover, I'm not doing it. Amazingly, that worked! He plateaus for a while but then he slips again. But he still remembers me and Bruce and, best of all, he trusts us.
It seemed like it'd never get done but the old house did get cleared and sold. Most of the loose ends are tied up and dad's fairly laid back these days. Yes, he's on drugs, you bet. We changed the anti-thises and thats fairly often till we get things right and then Things Changed! Since the move we've gotten him down to a minimum dose and I wonder if he even needs it. But, he seems fine and if it ain't broke, don't fix it.
I do remind dad he's got Alzheimer's when he's overwhelmed with confusion which is pretty rare these days. But it helps him to realize there's a reason for how he feels. This isn't true for a lot of the people with Alzheimer's but dad has always been painfully honest, still is, and he's amazingly strong. He's lost so much in the last few years; his wife, his house, his freedom, his mind and, insult to injury, his son hasn't contacted us in two years or more. It's sad for him to forget things but maybe remembering is worse. When we were making our first adjustment to this nightmare, he asked me what kind of lesson could God possibly be trying to teach him. I'm not a believer but I told him maybe the lesson was for me and God knew he was strong enough to teach it to me. Maybe that's true. I don't know. What can we learn from this? Alzheimer's sucks? Hey, I know that already! But dad's always been willing to do anything for me so if he thinks somehow this is for me maybe it'll help him see it through. What choice do we have anyway?
I couldn't do what I do with my sanity intact if not for my wonderful, supportive husband. Bruce is tireless and patient with me and with my father. He makes me laugh when it seems unbearable and takes up the slack when it really is. I wish all of you at least half as good a friend.
The best advice I've ever gotten I got from Bruce -- It's better to have it and not need it than need it and not have it.
You're stronger than you think you are. You have to be.
©1999-2003 Karen Schirmer. All rights reserved.