There seems to be two ways to describe what happens to the personality of a person with dementia as time passes. On the one hand, we are told – it’s not them, it’s the illness talking, they can’t help it. On the other hand, there are those who believe the essence of the person is still there. Bob deMarco, looking after his mom Dotty who has Alzheimer’s, subscribes to this other belief. It has been eye-opening to me to read about how he handles Dotty, and listening to and watching Dotty on the videos has been encouraging.
I think the truth as usual lies somewhere in between. Personalities are altered by the disease process, and different aspects surface at different times. Some characteristics are consistent – wanting to go home, not recognising faces, restlessness, a phase of anger. I say “not recognising faces”, because that is different from not remembering people. I know this because I am bad at remembering faces, but know who I am talking to once I have had a little more time to recollect or catch sight of the written name.
Thinking about my mom and what her “essence” is – I think I can distill it down to this: she means well. Whatever she did, how she lived her life, it was for us, her family. But I wasn’t always happy about what she did.
When I was quite young, during the school holiday, mom passed me a letter I got in the mail. To my dismay, I discovered the envelope had been torn, and immediately blamed my siblings, who protested their innocence. It turned out the “chief inspector” was mom. Her explanation:
Who is writing to you? You are only 12 years old. You will see your school friends soon enough when school starts. They shouldn’t be writing to you.
I guess she did feel bad about peeking into my mail, and became defensive as a result. Over the years, there were a couple more memorable incidents, and I wonder if the latter ones can be attributed to loss of judgement due to dementia.
About 15 years ago –
I really don’t like _____. She is no friend of yours. You should stop seeing her.
This was really out of the blue to me, and I like my friend very much. Her only offense was probably not to greet mom loudly enough. I had to remember not to have my friend over when mom was staying over.
About 10 years ago –
Oh I saw ____ the other day. You must give him a call. He will be leaving the country soon. I got his number right here. I told him you will definitely want to be in touch.
This, about a chap I was trying to keep a cordial distance from. Definitely did not want him to think I was talking about him with mom!
About 5 years ago –
I am going up for your cousin’s wedding this weekend. Yes, your aunty invited you a couple of months back, but I didn’t want to bother you with it. I have already told your aunty you are too busy with work to attend.
At that time, I was quite upset that she had spoken on my behalf without checking with me. Now I wonder if she had been covering up for forgetting to ask me.
Nonetheless, all these were the result of good intentions.
I hope I have the patience, wisdom and equanimity to accept and deal with what good intentions brings!