Couple months ago, I joined an Alzheimer’s support group. I also took four two-hour classes offered by the Alzheimer’s Association. We discussed the disease itself (comfortably different for every single person it strikes; can you hear my sarcasm?). We talked about legal ramifications. We discussed finding the help you need. And we talked about communicating with someone with Alzheimer’s, how their thought processes can change, things that work, things that might work, things that’ll cause no end of unhappiness.
One of the things our instructor stressed was this: Somewhere along the Alzheimer’s journey, you’ll likely take on the role of bad-guy. YOU will always be wrong and THEY will always be right.
Logically, I understand it. Emotionally, I’m having a tough time. I have no difficulty admitting my mistakes or taking responsibility for my screwed-up actions, but I have a really hard time accepting blame for something I didn’t do. This isn’t pride talking (at least I don’t think so). I suspect it has something to do with my self-esteem, which has been raggedy at best for most of my life. Whatever the reason, it sucks.
Something else that sucks is the inability to really, truly make a difference in this disease. I know it’s a good thing that we’ve been able to keep Mom with family and not in one facility or another, but there’s precious little I can do when she’s wracked with pain except give her a pill. There’s little I can do when she’s anxious except try to divert her (nearly impossible; the woman’s memory may be fading, but she’s got jaws like a snapping turtle when it comes to hanging on to a thought that’s snagged in her mind.) There’s nothing I can do when she cries like a little girl, upset by her confusion, her brain’s inability to function the way she know it ought, her fear, or my father’s death. There’s nothing I can say when she doesn’t believe the things I tell her.
And, man, she can be hard to please! I don’t think she means to complain or be petulant, but it’s hard to take all the same. You cook a meal…and she won’t eat. You bring her what she wants…and it’s too this, that, or the other. Things “taste like sawdust” or I’ll hear “This is the worst tea I ever had,” when it’s the same thing she’s had every day for the past nine months.
I know, I know…I shouldn’t be whining. None of this is her fault. She can’t help being the way she is. I ought to be able to let it slide off my shoulders, water off a duck, but some days are worse than others because, let’s face it, I’m tired. And I’m grieving, too. I never had a close relationship with her and now I’m her full-time caretaker. (And believe me, it’s much easier to caretake someone to whom you have a positive emotional connection.) There’s no opportunity now to have any sort of relationship with the woman I knew as my mother because she’s almost gone. There’s no time to right old wrongs, no time to make peace. It’s all one-sided. I know all about accepting her where she is, letting her be, creating what relationship I can, but it’s all built on shifting sands, crudely constructed castles the sea knocks down daily, sometimes hourly.
“I wish I could just die,” she said to me yesterday. I know, Mom. I wish you could, too. Some people will think I’m a monster for admitting that, but it’s true. I want her pain to be gone and her sadness to end. There is no quality of life here, really, just an endless repetition of hours with nothing to contrast one from another. She is existing now, not living. Some days, I wish she were an old dog. I’d know what to do, then.