An online notebook — unfinished, evolving, honest.
by Yatan
About 5 years ago I started noticing changes in my mother. She was suddenly scared she had never feared before, like going inside a mall to buy a flashlight by herself. She needed additional context that she had never needed, like not remembering who “John” was unless I said “John, your long time dermatologist”. That was the beginning, and with time it inevitably gets worse as it is with neurodegenetation.
It was hard because it’s infuriating to have somebody ask questions and become unable to do things they used to do. If you dont suspect that they have some kind of health issue its often very tempting to think they are just not paying attention or dont care enough.
If they already do have a diagnosis then its still tiring, and you need a lot of patience to not take it personal, and that’s hard if you are already stressed by something else.
Over time I realized a few things that made caring for my mom easier.
Your loved one often is stressed themselves, at some level they know they are forgetting things, they ask the same thing over again not because they want to but because their mind is not allowing them to remember. And often stress makes it worse - i know it does with my mom, if she feels stressed often her memory gets substaintally worse through that. So try to see that, she feels uncertain, thats why she asks, comfort her, ask her what worries her, hug her, give her words of affirmation, repeat many times the answer to the same question, try to always connect. You can challenge your loved one, ask him/her nicely what she thinks but generally correcting wont go anywhere and just stress you both.
At some point your loved one might start saying things that you know are not true or forget things that are true. For example my mom sometimes speaks about attending an event in the past that I know she didnt because she was giving birth to my sister. Or how many years she has been separated from my father. I used to correct her, now instead I ask her about what she liked most in that event and make fun of the mistake in her years saying that spiritually thats how long they have been separated. Know that her brain is changing and along with that her mind and her memory of things. Memories are plastic and are never actually objectively stored which is why everybody has a different version of the same event even without neurodegeneration.
As the ability for complexity fades, I have adjusted my mom’s environment physically and digitally. The idea is that she has as little decision overwhelm and can live independently as long as possible.
For example from a windows computer, I switched it to a chromebook with a touchscreen. This way she has something that is easy, fast, and most importantly simple. Her phone I decluttered it and left the most important things on the homescreen: spotify, whatsapp and the people she calls most on speed dial. Her smart tv I changed to a roku/google tv because the the remote control is much more simple and has buttons for YouTube and Netflix which are the two apps she uses, in them also having subscriptions or preselected the kind of shows she likes.
My mom’s taste and care about clothing has simplified over the years. She loves her white and striped shirts and white or black pants. So they have gone into the side of her closet she most uses. Have simplified the wardrobe so everything is in good order and most things fit with each other. Bathroom used to have a lot of things, now its just the most essential things she uses be it conditioner, shampoo, toothbrush and toothpaste, lotions. Periodically I go in and declutter also if she bought things so she doesn’t have to do a lot of work, she sees and takes what she needs.
A friend who’s mom is also ill has had an extensive spiritual path with meditation yoga and the works, once talking about the experience of taking care of your mom she said “maybe thats why I did all this practice, to be able to breathe and process when my mom insults me suddenly”. This stayed with me. When I decided to take care more of my mom all these things have come in handy, I can’t say that I am never angry or sad, I am, but I do try to see the bigger picture and have fun with my mom, make jokes, or do something we both like. My grandma had neurodegeneration as well, my cousin showed me a trick, she would play a song that she knew my grandma liked, she would ask her to dance, my grandma would enjoy it and say “thats a song from when i was young”, they would sit after dancing. A few minutes later, she could do this again, this way even if it was the same song ten times in a row, they could still share a beautiful moment.
Caregiving is exhausting, but it can still contain beautiful moments — sometimes even the same one, again and again.
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