This is the Year that...

This is the year that my mom dies. I mean, most likely. I’m not hurrying it along but I am aware that it is, realistically, a thing that will occur.  It is early January of 2022.  She entered hospice care in November of 2021 meaning the medical community thinks that she has less than six months to live. That’s why they let you into hospice.  For me hospice means that she has a few extra pairs of eyes on her with the mandate of keeping her comfortable.  And it means that I can start thinking about her death in a very real and concrete way. 

 

I want to trust the hospice nurses when they tell me that she isn’t in pain and even though I’ve asked them to come on board for their professional opinion, I find I have a hard time believing them.  I think it is because I personally am in pain a lot of the time right now.  I’m 51. My hips hurt and my back hurts and sometimes my knees hurt and when I’m in pain, I am not always wincing.  I don’t know if my blood pressure is up or if my heart rate is up.  These are the things they look for in her to indicate pain. I can shift my weight or stretch to relieve my pain but she isn’t able to do that.  She can’t move.  I worry that she is in pain and can’t move.  Ugh.  I think about suggesting that we give her pain meds “just in case.”  It seems crazy but it also seems crazy to not be able to adjust yourself in your own chair. 

 

 

She has been in the memory unit of the facility where she lives for five years now.  Her diagnosis is vascular dementia and Alzhiemer’s.  I used to worry each time I left her that it would be the last time I saw her.  I worry about that less.  I try to say goodbye each time so that I won’t have that particular regret.  I have started making lists of the things that will need to be done when she dies.  A year after my father died, eight years ago, the funeral home called her and asked if she would like to save her loved ones the trouble of making all those decisions by coming in and planning her own funeral.  She did.  I’ve no idea what she picked out or what to expect. I imagine it is all very conservative and tasteful but I don’t know. I’ve started working on her obituary.  I have also started working on my own obituary, just for good measure.  And I’ve enrolled in a Brain Health Memory Decline Reversal program.  I’ve wanted to do it for a long time and always thought it was too expensive but then I realized I was spending the same amount per month on coffee or wine or a couple of yoga classes and this is more important.  There is doubt on my part.  It might not work but I don’t think it can hurt. Good gut health, good chemical balance.  I may have to give up sugar and alcohol but that wouldn’t be the worst thing.  My ideal situation is to give up whatever I need to tip the balance in my favor.  And still get to have red wine on occasion.  

 

I wonder what would have happened if 5 years ago, I’d put her on this reversal protocol?  There are a number of people who report that it works.  It is really complicated and there are so many facets that have to be tracked and maintained.  Sleep is a big one.  And diet.  And supplements taken to keep certain chemicals in balance.  In the case study I read today, the woman does intermittent fasting so that she stays in ketosis.  I don’t entirely understand that but not sure I am keen on it.  But I could probably do a lot of things if I knew they would keep me from developing Alzheimer’s.  

 

I asked my Buddhism teacher for advice on preparing my mom for her death and she said there wasn’t really anything to do other than keep her comfortable and at peace so she would be calm and at ease when she died.  I’ve asked the companions not to have the TV on unless they are watching it with her.  I get that it is easy and common to have it on but it also introduces so much noise and discord.  I hate a TV on in a room.  I have zero capacity NOT to watch it.  

 

We were talking about proprioception yesterday in an acting class and I think the instructor is using the wrong word. I have to look it up but I think he meant mirroring.  That is something that you lose with Alzheimer’s.  They look for it.  I recall when the speech therapist tried to test my mom for it.  He did the evaluation and he said she didn’t have that capacity anymore and it was true that she didn’t do it with him but for a long time even after that she would still do it with me and with her companions.  I smile.  You smile.  You frown.  I frown. It is one of the hardest things to lose in another person.  I grew up mirroring her.  She is my mirror.  

 

Just as I was typing this, I got a text from one of my mom’s companions.  She sent a photo of my mom smiling.  My face automatically mirrored hers. I smiled, specifically the way she is smiling without thinking about it.  Making the face made me feel joy and delight and just a little bit of surprise. I think I have done this all along with other gestures. Early in her disease, she used to push down on tables or against the frames of doors.  I tried to figure out what she was doing intellectually and it didn’t make sense but then I realized when I replicated the gesture with my own body, that it seemed to be an attempt to check on reality in the midst of things starting to disappear and lose shape or meaning.  She was trying to keep everything in order, in place.  

 

 

 

 

 

 

 

 

I have a revolving door in my mind that continually checks the state of my mother’s well-being.  I don’t always act on it by texting the companion that is with her but often I do. If I don’t reach out, I sometimes just sit with the guilt and awareness of not being there.  I mean, I know at this point, she is where she should be.  I could in no way take care of her on my own.  It takes a big team with medical skills at this point.  Could I move to Arkansas and live there? Perhaps.  Would she want me to do that? I don’t actually know.  I don’t think so, but I can’t ask her.  

 

 

Tonight my index finger and my thumb on my left hand are twitching and it feels like someone is sending Morse code messages through my body into the world.  

 

 

This is not the end of this essay but this is as far as I’ve gotten.  

 

 

 

 

 

Other ESSAY ideas

 

Getting the chair fixed. 

Speaking of chairs.  I’m trying to get my mom’s recliner fixed and it is nuts.  I could have bought a new one and had it delivered by now. Maybe I still should.  I can sell the “old” one when it gets fixed.  My job for the last 5 years, my mandate has been to keep her comfortable.  

 

Today I spent the day alternating between enrolling in the cognitive decline reversal protocol for myself and fielding calls about my mom’s broken tooth and memorizing lines for a TV audition.