I Hate Alzheimer’s!

I used to laugh at Denny Crane calling his obviously progressing Alzheimer’s “Mad Cow Disease.” But now, dealing with my mom’s own brand of it, it’s not so funny anymore and all I feel like doing is crying.

But then I’ve noticed a lot lately that I always seem to find myself either wanting to cry or scream after every interaction I’ve had with or about my mother lately. And then other times I just have to laugh at the absurdity of it all.

However, only dark humor can be found when dealing with a disease that starts innocently enough by robbing you of short term memory. The repetition of stories you’ve heard a thousand times, answering the same questions over and over again as if they’re new, knowing all the time it’s futile because she’ll ask you again 10 minutes later. It may start off innocently enough with losing little snippets of memory, but then it starts killing your memory of your loved ones, then adds insult to injury time and again until death seems merciful when it comes.

From research I’ve been doing, it looks like she’s at the “mild to moderate” stage – at the point where she knows her memory is going, and it makes her so frustrated and fearful of “losing her mind.”  She knows her brother died years ago of Alzheimer’s, and she’s heard the dreaded word from her own doctor, so she’s aware enough to know that it’s happening, and it scares both of us so much, it’s hard to even talk about. And what can I tell her that could possibly comfort her? One of my own greatest fears is to end up like that, and I certainly can’t share that with her, either.

For as long as I can remember, my mom said she would be ready to die when she couldn’t drive her car anymore. That represented her independence and she used to just love being able to go where she wanted to go on her own schedule, sometimes just driving around aimlessly, enjoying exploring and “getting lost and finding my way home.”

Just in the last year she’s lost not only her short term memory and her ability to drive, but she just doesn’t seem to have the incentive to do much of anything like she used to. She was always so active for a woman of her age, and I was always kidding her about never being home and just “running the streets at all hours.”

In March, after a series of hospitalizations, we were advised by doctors and physical therapists that she really should no longer live alone. Even though we had moved my oldest daughter, Angelique, into the duplex unit next door a few months previously, it just was not enough.

One of her friends had moved to a very nice assisted living facility and after several visits there, mom decided she really would be better off there and was even excited about it. And this place really is great, besides nutritious meals, her meds are given to her on schedule (she had lost the ability to do that for herself), and lots of other services and social activities are provided. The kids are always a big hit and the “talk of the town” when they go visit. Her friends tell her how lucky she is that so many people come see her so frequently. Everyone I’ve met is so friendly and the management has been extremely kind and cooperative. I’m so thankful that we found such a nice nearby place that she can afford with the help of Medicare and TriCare. Since I work for an elder law attorney, I hear all too often of people who are in much worse condition than my mother with absolutely no such alternative.

Even so, the process of sorting through everything in her house, seeing things go off with strangers at a garage sale, getting settled into a new, much smaller space, leasing her side of the duplex out – I will always think of those 2 months as the hardest in my entire life. Sometimes it was touching and a positive process, reliving old memories about things that were either funny or sad, and talking about the benefits of her new lifestyle. But sometimes I would turn and look at her, and the look in her eyes as she observed her life being torn apart as she knew it, still haunts me to this day – and I know it always will.

But she’s been settled there since May and although I am more and more impressed with Englewood, and she says that while she likes it, she still wants to be in her own home and doesn’t understand why she can’t go back there.

Whenever she comes over to Angelique’s when the twins are there, she always comments on how strange it is that she can’t go next door to her own house – that strangers live there now. And Angelique now has her old car, so that’s yet another reminder of days gone by and independence lost.

Mom’s 84th birthday was on August 10th.  Seeing her the weekend before, I asked if she wanted me to take her to lunch that day or we could wait and have dinner that night so Angelique and Keala could join us after work.  She said she’d rather celebrate over the next weekend when we could all be together, especially since Angelique would have the twins at her house that weekend.

So Angelique was the first to call her on Tuesday to sing her an early morning “Happy Birthday.”  I called her a bit later with the same wishes and again asked if she’d like to get together for lunch or anything else that day.  Again, she said she’d rather wait until the weekend and not to bother coming over there that night because she was playing bingo.

But at about 7:00 that night, she called me and said, “Where are you – I thought you were coming to get me.  I didn’t go to dinner because I thought you were taking me to eat.”  Angelique was sitting beside me and we looked at each other with pure looks of astonishment on our faces.  We went through the whole series of events and what she said and what had been decided.  She finally said, “Oh, yeah, now I remember…”  Our hearts really hurt at the thought of her sitting there for hours waiting, even though we had all talked to her several times during that day, and always thought she understood what we were doing.  We told her to put it on her calendar that we were picking her up on Sunday and she said she would.

The next day she called and told me she couldn’t believe I had forgotten her birthday yesterday.  I went through the whole scenario with her again and this time she said she didn’t remember anything about all of that.  I told her to go look at the calendar because she wrote when we were picking her up.  She went over to it and said “There’s nothing there – I didn’t write anything on the calendar – maybe I put it on another piece of paper somewhere, but I can’t find it.”

I again assured her that none of us forgot her birthday, everyone had called her, and that we were all celebrating on Sunday.  I asked her again to put it on her calendar while I was talking to her on the phone and listened while she slowly repeated each word like she was writing it down.

I won’t say how many times she called again with the same results because I don’t think anyone would believe it.  My burning question:  Why can she remember that it’s her birthday and keep “remembering” that we forgot it, but none of the other stuff???

She says sometimes she feels like she’s lived too long and is ready to go – except that she still gets so much pleasure from watching her grand, great, great-great, and great-great-great grandkids grow that she wants to see as much of that as possible. She says she hopes I understand – that she loves her kids like crazy, but with grandkids, it’s just different. There’s a whole other level of your heart that opens up to them that you’d never known before. Now this I understand as I have that same feeling when I look at Caitlin, Anna and the twins – that glowey feeling you have after giving birth to your own child, only amplified through the next generations.

But no matter what I do understand, the things I don’t understand far outweigh any real insight that could help. The pain is not abated by the understanding that it’s the disease I hate and resent, not my mother herself. So since I can’t cure her, I have to learn to live with the pain, right? I guess it’s like one of the lines of my favorite songs, “Guess I’d rather hurt than feel nothing at all…”

And it goes on…”It’s a quarter after one, I’m all alone and I need you now…”

And I recently realized that I’ve missed my mom for a long time now. Sometimes I want to call the mom I remember for some sympathy and advice, but I can’t very well call her to gripe about the mother I’m dealing with now. Makes me feel like a pretty crappy person sometimes that I can’t just deal with all this better than I do.

And I wonder what will it feel like if I ever walk into her apartment, and she looks at me and asks me who I am? So I really, really hate Alzheimer’s!

Hugs from Anna, Cadence & Cailie

 Twins helping their 3G (great-great-great grandma) walk

Above was posted on Facebook August 22, 2010