she deserved better.

having a tough time processing grief this morning. it's been haunting me, how mom really didn't get any of the treatment she needed or deserved, when she got sick. she wasn't able to advocate for herself, and dementia treatment that is managed by the state is less than the bear minimum. they never even tried to diagnose her type of dementia, which actually makes a big difference when it comes to treatment. they treated it as if there were no treatment options, only management of symptoms. which is really not true of dementia anymore. but we didn't push for it, i still don't even know if that stuff was an option or not. but looking back, there is so much more they could have done for her that they refused to do, with the convenient excuse that they couldn't do anything the patient didn't want. she didn't know what she wanted, she wasn't mentally capable enough to decide. respecting autonomy becomes not so simple with dementia patients, but they just dismiss it as "not what they want." it's such bullshit.

there are two things i need to apply for a grievance for, regarding mom's care, but i haven't done it yet. the first is of course the day she died. she was on hospice and was supposed to have immediate access to comfort care. they left her languishing all day the first day. we got there at 5pm and her nurse and meds arrived around 6:30pm if i remember right, maybe 7pm. but she had been suffering and struggling to breathe since 10am. they had the excuse that it was a holiday (MLK day) but that is not acceptable. the sick and dying do not wait for holidays. not okay.

the other thing is from years ago that looking back was really terrible and definitely changed mom's quality of life. at some point in her care at her prior facility, she lost her eye glasses. instead of going back to her previous eye doctor and getting her measurements for her previous prescription, they gave her an appointment with an optometrist and got her a new pair. but she had such severe dementia at that point that she could not understand or answer basic questions. we did not realize it at the time, but her new glasses actually made her see a lot worse, not better. she had no way of communicating this. but she suddenly couldn't walk and was afraid to go anywhere with us, and she stopped looking for or wearing her glasses unless we went and picked them up from her room for her when we went out. it was her caretaker at the time who noticed that she couldn't walk when her glasses were on, and we finally realized after a year of struggling that her eyeglasses prescription was totally wrong. she's just nearsighted (like me), it's not anything complicated. so we just stopped having her wear them and suddenly she could walk again. it's just really unfair that they did that to her without even thinking about the fact that she couldn't communicate her needs, or to even be able to understand or describe ability to focus with her eyes to an optometrist.

there are lots of other things about her care that were like this. but those two stand out to me as the most neglectful and cruel.

one of my favorite photos of mom with darwin, i realized later, is her looking up at me with her glasses far down to the end of her nose, she's looking above the glasses at the camera instead of through them. she couldn't describe verbally that they weren't working for her, but i wished i could have recognized it in her behavior. it's so sad.

it of course makes me scared for myself and my future, because i know that whatever genetic traits caused dementia for mom and grandma, i probably have. i am interested in genetic testing and also any other sort of early diagnosis i can do to start treating and preventing it now, but i don't know how to access that sort of care. i know there is a very advanced dementia research facility in california, but they are overrun with rich people looking for help and i don't have the cash to make regular trips to california for help, let alone the cash to pay for whatever treatment they might offer. (none of this stuff would ever be covered by health insurance in this country, this would all be out of pocket because it's seen as not necessary.) i need to do some research around this, but i don't even know where to start. maybe i'll talk to my doctor about it and see what she thinks. she's smart.

i torment myself a lot with all the ways i failed to get mom the treatment she needed, how maybe dietary changes could have slowed the progression of her disease, or how maybe more music would have brought her more joy, or something like that. it's really hard remembering dropping her off in tears at sylvia's, when sylvia was her caretaker, and her sitting on the couch and going blank staring sort of half at the tv, which would run things like the news, football, or the cardashians. sylvia refused to play her any movies or music because "that's not what the other residents want to watch" but none of the other residents spent time in the livingroom at all, as far as i could see, and they certainly weren't the type of little old ladies who loved football or shitty reality tv. it was awful. i think that was the worst time, for my mom, and she was there a year. also she told us she cooked their meals, and she did cook lunch or make sandwiches, but the two times i saw her serve them dinner, it was shitty fast food takeout. sylvia lied to us several times about making more time for mom to do activities and other things. which is why we finally took her to harity. that lady sucked. harity was so much better. she actually all the way until the end played mom's favorite music and movies, she let us do so in the livingroom together and saw how mom responded and cared enough to do the same. mom was one of harity's first residents. i'm so grateful for her. need to call her soon and see how they are doing. i don't want to lose touch with her or her family, we became really close over the time they had mom with them.

i also try to remember the things we did during that time that mom was with sylvia that were good. we took her out every weekend for hours, without fail. i fed her well when she was with me, i remember her devouring the beet and sweet potato soup i made once, and she kept exclaiming how wonderful it was. we went for walks. we listened to music and watched shows she loved. we had coffee and pastries at Bison. i learned how to ignore her crazy chatter when it happened. we had a lot of really good times.

i just wish so much things could have been better for her. and i'm so angry with my step-dad for giving up on her, still. even though he really wasn't up to the task. it just sucks. i wish things hadn't been like that. she deserved better.