I am 29 years old, my brother is 26 and our mom was diagnosed with glioblastoma a few months ago. The decline has been shockingly fast, she lost all movement in her left side and needs help with everything from sitting up to eating to using the bathroom. She lives with my dad who before this was the one with a ton of health problems (pre-diabetes, copd, back pain, the list goes on).
There was a period of time where she was in a rehab facility to get physical therapy for her but both places she was at refused to do any therapy because of insurance (Medicaid) and was just neglected the whole time. My dad is weak but was determined to bring her home and be a caregiver. It worked for the first 2 months but recently he’s started to take too many painkillers and has been too high and extremely aggressive. (We as a family dealt with this behavior a lot growing up and it’s a big source of the resentment my brother and I have for our dad).
It’s clear that if he’s going to act like this he’s not fit to be a caregiver but I don’t know who else can be with her 24/7. My brother and I both live about an hour/hour and a half away from them and we both have jobs that need us in the office. We both moved out of our parents house later in our 20s because we don’t have a lot of money. We had to help our parents pay for their rent and other things while working to get on our feet (my dad has made some really bad money choices that has left them with no assets, no house, no savings, nothing)
Looking online for advice it seems like the only real option is for me to quit my job and move home for a year but I don’t want to do that. I’d obviously be the sibling to do it because I’m the daughter and also I make less money. When my mom eventually passes I’ll still have to worry about my dad all the time and I’d rather never live with him again. If I move back home I’d lose all my benefits, health insurance that I need for the therapy I definitely need, and I will probably be in such a bad financial state that i won’t be able to move back to my city and live the life I was just starting to have. I don’t have a partner or anything either so there’s nobody to fall back on if things go bad.
My brother and I also go home every weekend (and then some) to take care of cleaning, cooking, laundry, medicine, and any of the administrative and financial tasks that is too much for my dad to manage himself.
As far as getting home care goes, the hourly rate is more than my own pay rate at work. I’m so young with no financial help from my parents that I don’t have much savings save maybe 3 months of rent if I need it. We can put her in a home again but I’d be getting manic 2am texts every night, where with my dad she complains but it’s less often.
My friends tell me I’m doing enough but none of them know what it’s like outside of seeing their parents help a grandparent while they die. This is a lot different. My aunt sometimes guilts me about not doing more since she was the primary caregiver for her parents but they at least had savings to pay for care and she was already retired, not just starting her career the way me and my brother are.
Am I making the right decision to take care of myself and my future or should I give it all up to take care of her until she passes? I know compared to some people a year is so short, but I dont think I can do this. I don’t want my whole life to be repairing all the damage done from my parent (dad) who has only ever been irresponsible but I also want my mom to feel loved and cared for in her last year of life. I know she wouldn’t want that for me but what we want and what’s the reality are two different things.
Consider bringing in hospice. Not Vitas. At minimum, they should be sending a nurse to monitor meds once a week, with aides bathing her twice a week. The social worker ascertains which mortuary to contact after she passes.