July 14, 2014: Mom is at my place for dinner on July 14, 2014, partly because I feel awful leaving her in an environment that causes her to become anxious, partly because her one-on-one care has been scaled back to nine hours per week from thirty-five (about a quarter of the dedicated care she’d previously had), and partly because she and I enjoy each other’s company.
Mom is happier and more engaged when she is with me or a companion who helps her get up and walk around, guides her through mealtimes, sings with her, chats with her or just sits with her in silence. Nursing home employees don’t have time to deliver that kind of care; the ratio of caregivers to residents doesn’t allow it. In fact, many aspects of dementia care are inadequate worldwide.
Furthermore, some people think it’s okay to deny people who live with dementia small pleasures because they seem not to be aware of what’s going on around them. Some people think it doesn’t matter how we treat people who live with dementia because they often forget everything the next minute. But they are aware, and it does matter, and some things are felt and remembered deeply even if they are superficially forgotten.
It’s true people who live with dementia are often confused and have difficulty articulating, but that doesn’t mean they don’t think and feel and have awareness. My Mom does, even in the advanced stage of the disease. I’m sure the same is true of many other people who live with dementia. If you think they don’t know, think again! Most of the time Mom talks in what seems like gobbledegook or she parrots what someone else says. That’s her way of engaging with others, of being in community. Sometimes it’s clear she knows exactly what she wants to say, but she struggles to find the right words or to get a complete sentence out.
Yet, despite the medication she is being given and the late stage of her disease, Mom is more aware than she is given her credit for. I hear it in what she says. I see it in how she behaves. I also observe the effects of anti-psychotic medication on her, and I know how much more alive she is when the medication wears off. She is there and she counts, even when others count her out.
Likewise, there are breaks in the clouds when she becomes lucid and articulate. Tonight, she is astonishingly present. We talk of many things, including Sally, her one remaining one-on-one caregiver. I cry tears of sadness and frustration over the tragic fact that instead of being increased, Mom’s one-on-one care has been reduced. She comforted me, we laughed, and in the end we agreed it’s better to cry together than alone:
I’m grateful to have conversations like these with my mom, and even more so that I record them so I will be able to replay them when she’s gone. I hear the wisdom she retains despite the disease, and know without a doubt that her fierce spirit will be with her until the very end.
*not her real name