Unforgettable

There is so much about caregiving that makes me sad, and looking back is a big one. Mom seems to be moving into an advanced stage of her Alzheimer’s; she has recently become more confused, less willing to get out of bed in the morning, and less connected with reality. She’s having trouble going to the washroom on her own, she struggles with her fork and knife, and her appetite has decreased. Along with her increasing inability to express herself (aphasia), it’s truly heartbreaking.

It’s too easy to make comparisons…
I keep having flashbacks to just a few months ago, just a year ago, just a decade ago… seeing my mother in vivid memories, laughing and engaged with a group of friends, talking in the kitchen with me while making supper, out shopping and exclaiming with delight over anything new and gadgety, taking charge and finding a solution whenever a problem came up… I keep seeing her in the past. And I realize that this is not fair to her in the present.

If you’ve seen one person with Alzheimer’s, you’ve seen one person with Alzheimer’s.
I’ve heard other bloggers say this, and it seems to be true. My father, as one example, has remained incredibly stable throughout the past two years. In fact, I would even venture to say that he seems better since we started giving him a tablespoon of coconut oil every morning (more on that in another post). He gets up early and makes himself toast and tea, reads the paper every morning, keeps up with the news on TV (even though he forgets what he heard within a half hour), takes a daily walk and meets with his friend every Friday for lunch. The only significant change is that he has lost interest in the accounting and the yard-work (except for the leaf blower, he loves that leaf blower!). But that’s fine, because at 90 years of age, he should be doing just what he enjoys anyway, regardless of his dementia.

My mother, on the other hand, has been changing rapidly throughout the past two years. According to her doctor, she has an aggressive form of Alzheimer’s. Yet she has really good days, when you start thinking – Wow! She’s back! And then she has really bad days, when you realize that “getting better” is just a cruel illusion. As far as we know, there is probably no way she is ever going to get better, and so we have to accept each change as a sign that she is deteriorating, and will continue to do so until it’s time for her (and us) to let go.

I have to remain positive…
And I have to remind myself that she is still and always will be an awesome woman, in all the same ways she ever was, and that it is so unfair to her when I look back and feel sad. I have to see her with the eyes of today, and enjoy being with her the way she is now. When we’ve just washed her hair and styled it and she beams into the mirror, I have to hold that image close. When she laughs, I have to let that laughter open my heart to the joy of that moment, and not focus on how rare it has become. When she has a good day, I have to make the most of it. When she has a bad day, I have to open my heart to that as well, and not turn away in despair.

Healing is found in the suffering
On a recent bad day, I was tempted to jump ship as soon as Valerie, our amazing caregiver, arrived for the evening shift. I was overwhelmed and worn out, having had many excruciating and challenging moments with Mom, who was angry and frustrated over something that she couldn’t even communicate. She was upset with the whole world, it seemed, including me, Valerie, and her husband, and she desperately wanted to tell me something but couldn’t find the words (she can’t write anymore either, so not an option), and this was making her even more crazy. I felt absolutely powerless to help her, quite distraught at the level of her anger, and so, so sad.

Instead of leaving, though, I chose to stay and help with a few chores that I hadn’t had time to tackle. I went downstairs to get the laundry out of the dryer, and while Val was busy in the kitchen, I asked Mom to help me change the linens on her bed. Mom was sullen but seemed relieved to have something to do, and we worked silently and together in one of the first peaceful moments we’d had all day. When we finished, Mom looked up at me and looked right into my eyes, suddenly present and all there. Something had shifted, and we both felt it. “I’m sorry,” she said to me.

“Don’t be sorry,” I said, “none of this is your fault. There’s nothing to be sorry about.” And we hugged, tears running down our faces.

I’m crying as I write this, and it’s hard to think about. But it’s an important lesson, especially for caregivers. In life, in love, in Alzheimer’s World. Don’t resist. Go into what feels uncomfortable and stay there. There is magic there, but you won’t see it if you’re running in the opposite direction.

“Pain and suffering are the soil of strength and courage.”
– Lurlene McDaniel