Being around Alzheimer’s/dementia feels like being around death. My mom is void of herself—a shell of a human still trying to be polite, hospitable—yet she is gone. She is no longer the woman who raised me. I have noticed this week, being around her, that I too feel gone. As if death is contagious; like it’s rubbed off on me. I have felt more like a zombie. I am more depressed than usual. I feel less hospitable, less joyous, and more short with my wife. Yet, what is strange is that I am feeling more soft towards my kids. It’s like watching my mom die, without stopping to check in with my body, is making me a worse overall person, but a more aware dad. I don’t know how that all works, but I’d like to be both a good dad and a good human. I am a week into taking care of my mom (while giving my sister a break) and think I should have been writing about my mom daily, and that is why I sit now and write. I am not well. Her toxic presence has been trapped inside my body and has made me sick. It’s not her fault. She feels like a prisoner of her own brain, only aware of each present moment that is in front of her. What a gift, what a curse.
Her arthritis and osteoporosis have made it nearly impossible for her to walk much distance, though she is only 74 she seems more like 94. We have been stuck inside the house having the same conversations a hundred times over, hearing the same stories again and again. “You live near Wendi in Dallas, yes. We sold your house on the lake, yes. You are divorced from your abusive husband and you are now safe, yes. Yes, I know my dad lied to you and was unfaithful.”
What is wild is that as frustrating as these looped conversations are, I know I too will miss these endless loops of monologue because at least I have a part of her still with me.
I love my mom. Yet this is not really her. It seems like this disease has merely highlighted the worst of her. Defensive, insecure, snappy, headstrong. I have tried like hell to get her to take a bath (she is afraid she won’t be able to get out of the tub). I have tried to get her to shower (nope, she does not want to get her matted hair wet). So, I just settled to get her to change her clothes, which was moderately successful.
Her friends and extended family came by to see her yesterday. It was magical. This is probably the last time she will be in her beloved state of NC. It was like she came alive, telling old stories and laughing with old friends of 40 years about the old times. Most of her long-term memory is still intact. It was so good to see even a glimpse of her old self. Even though she forgot they came minutes later it was a holy moment of delight for me.
She was a go-getter, waking up each morning at 6 a.m. to read the Bible and pray, raising three kids by herself, building her own house, paying off that house, taking all of us to all of our practices, and cheering like crazy for us at each of our games. She created a safe life for us, despite my father taking nearly everything she had. Now I watch her wither, oppressed by a rotting brain, going to the bathroom every 5 minutes because she forgot she just went and her brain tells her she must go again.
My sister found a journal dated 1/16/19, with an entry from my mom when she was beginning to feel the impact of the early onset of dementia. She wrote:
As I read this I still see her and feel her. Her fear is palpable; I can touch it. I can’t think of a much crueler death. Compassion would be death to the hell she is living now.
As she returns to Dallas, we have decided to put her in a nursing home as my sister cannot meet her never-ending demand for care. This was my mother’s one wish, that she would not be put in a nursing home. Yet there are no other options. We all feel guilty, wishing that we could do more, that her weight did not drown our own lives. This new reality of her living situation makes me so mad that her ex-husband chose to be so cruel rather than care for her in the way he should have. The one gift is that she will not be so alone. The disease has caused her to be very reclusive and this new place seems kind to her tendency to isolate.
Pray for me as I learn how to grieve this new living death. Pray for her that God will show kindness to her great suffering.