Continuing on with the old posts about Mom’s progression with Alzheimer’s, and what I was learning along the way.
As Time Goes By: The Alzheimer’s Progression
Life happens, and time goes by. I think I was waiting for something important to happen before I posted again, not realizing how much things were changing.
My family continues to live under the spectre of Alzheimer’s. I looked up the definition of spectre just now, afraid I’d misused the term. As it turns out, it was more “right” than I’d imagined. From the Free Dictionary site:
|spectre US, specter [ˈspɛktə] n|
|1. a ghost; phantom; apparition
2. a mental image of something unpleasant or menacing the spectre of redundancy
My mother continues to fade away. She’s become a ghost of who she was. I know it has crept up on us slowly, but it feels like I turned around one day and she was much, much further away. There is no way to describe the experience of watching someone drift out of sight in front of your eyes. My mother is a classically trained coloratura soprano, an actress capable of performing two full-length, one-woman shows, a French Horn player, a quilter, a librarian, an avid reader and crossword puzzler with an infectious laugh and a larger than life personality. At six feet tall, my mother was always in imposing figure. In my mind, she still is, and I am sometimes surprised when I first see her. She looks me in the eye now, hunched over from osteoporosis and the weight of illness. She is a completely different person altogether. I don’t see the same glimmers of my mom that I used to catch once in a while.
They call it the “Lion’s Mask.” It’s common in later stages of Alzheimer’s – a lack of emotion, a blank, expressionless face. How strange to see that from someone who used to be so filled with emotion. From her face to her voice to her wildly waving hands, my mom was the exact opposite of expressionless. Now, it has become more important to read the subtle nuances that indicate a change in mood, physical pain, frustration or worry, even enjoyment. I search for clues. I am not nearly as good at reading her as her caregiver at the Adult Foster Home where she lives. Ana is mom’s voice, her interpreter, and has become her “best person.” She knows who I am, but I am secondary to her. That’s hard, but I’m okay with it, because it means she has someone she loves with her 24×7. We are incredibly lucky to have found such an amazing place. We are incredibly lucky to be in a situation where we can afford for her to live in a place with exceptional care from such loving caregivers.
A few recommendations I on my mind today:
- Document memories. I’m creating a digital scrapbook of my mother, piecing together vocal and theatrical performances from old videotapes. It’s a healing experience, getting to spend some time with my mom, the way I remember her.
- As near as I can tell, my mom enjoys hearing stories from her past – and I enjoy telling them.
- Talk about your current life. I’m not always great at this. I get overwhelmed or uncomfortable and we sit in silence. My mom doesn’t talk much anymore, but I can see that she still wants to hear about my life. Before this last decline, telling her about my life – the good and the bad – gave her the opportunity to pat my hand or give me a hug and feel like a mother again. People with Alzheimer’s need to feel useful, and nothing’s more “useful” than being able to comfort your child.
- Adjust your expectations. A smile is a beautiful thing. I no longer expect the big laughter I’ve heard all my life. When my mom smiles at me these days, it is huge.
One more thing: a resource. The Alzheimer’s Store has a variety of products – including activities. You can find products and gifts categorized by the stages of Alz. Lots of useful items that help people in the earlier stages manage life a little bit longer. Besides buying a few products from the store, another way I’ve used it is to scope out what might be an appropriate gift for my mom. Just this past Mother’s Day, I was able to determine that the best present I could give mom (given her stage and her personality) was a stuffed bear that she could hold on to. It was a big hit.
That’s the report from here. It’s not a nice story. There is no “upside.” I’ve never wanted to soft-pedal the experience and won’t now.