Hospice

My husband says I should keep writing. Past the point where I think I should. Or past the point where I worry that the state we are in is too much, too heavy or too ugly to be written about.

Wouldn’t it just be easier if I wrote about the shoes I want? (It’s these, above.) Hey, Nike, it’s cool if you send these.

But this is the danger of any mental illness, right? That we won’t/don’t/can’t talk about the truth of how terrible it really gets. When people ask me how Mom is now I say she “really sick” or sometimes I say “well, she’s on hospice”. And then I feel the need to cover this ugliness up. So my next sentence is often “it’s okay” or “she has dementia”. As if somehow, this makes losing her life to this disease okay, or that it hurts less. When I say Alzheimer’s or dementia, it is often followed by someone telling me about their 80 or 90 year old grandparent having the disease. While I know this is to create some sort of solidarity to make me feel less alone, it serves the purpose of three things: 1. It makes me jealous that your grandparent is still alive when the last grandparent I had died 22 years ago. 2. It makes me double sad this is my mom. And she got the disease in her mid 60’s and she is dying from it 3. It makes me sad to hear about so many other people losing their life to dementia too.

During a recent visit, hoping for a “sort of peaceful” moment.

A friend of mine recently lost his mom to dementia. I was shocked as he had said many times “it feels like she is going to live forever”. Doesn’t that sound nice, that he thought his mom would live forever? But it’s not and we looked at each other in a way that only two kids who have survived losing a parent to this can. And his kind, amazing wife said “it’s really so lonely”. And there is was. The absolute truth of how you feel when your parent is dying of dementia.

It is so lonely to sit with the person you used to talk to for hours and try to remember the last time they understood or responded to what you are talking about. It is so lonely to have people say “enjoy the time you have with her” and all you can think of is the fear of how much worse this will get. Friends, “enjoying the time” is not where we are. Sometimes it’s sort of peaceful if I can get Mom away from the yelling and screaming of other dementia patients and take her outside to where she can sleep and I can cry outside. But the best I can do right now is “sort of peaceful”. It is so lonely to sit in a care meeting where they are discussing your mom’s care plan with words like “comfort medication only, standing hospice orders and pureed foods” and then come home and feel like I have the patience to do homework with my six year old. It is lonely to feel like I’m not the same as everyone around me. Like I carry this weight that I have to make it to the finish line with but it is so so heavy. And that I want two of me- one to just do self care things 100% of the time to maintain the other version of me that is a parent to two awesome kids, a wife, and a daughter to a parent that is dying.

A perfect example: the trunk of my car last week. Running stroller that I need to run with a kid, squished by Mom’s laundry basket, which is all squishing my work bag all shoved into my practical Prius.

It is so so lonely to miss someone that is still alive and right in front of me. But I don’t want to add to the loneliness that we feel when we take care of someone with mental illness by not writing because I know what it’s like to feel isolated in this. So get ready for some real uplifting stuff. (I’ve heard that sarcasm doesn’t work well in writing, but I think you got it.)

Late night scooter riding. Because homework can wait for another time.