Late Stage Decline - Mom Won't Get Proper Help for Dad
This is gonna be a long one. Partially venting. Sorry.
My dad has had Alzheimers for 11 years, since he was diagnosed at the age of 62. In more recent years the decline became much faster. He is late stage now, and needs to be washed, dressed, toileted, etc. He shuffles when he walks, mostly only manages yes/no but doesn't really understand the questions, and can eat semi-independently on good days. Mom is his carer.
Last month he fell in the shower whilst mom was washing him. He had a seizure and stopped breathing. Mom gave him CPR and he was taken to hospital. They found two old brain bleeds on a scan and kept him in for a few days before discharging him. Two days ago he started slumping in his chair and flailing his arm about. Suspecting another brain bleed, he was taken to hospital again. A scan showed a slightly larger one than before. He's continued twitching and the doctors have given him Lorazepam. We're waiting for the results of another scan from yesterday and the physio is assessing because he can't stand at the moment.
Mom has resisted getting in proper care for a long time. She works two night shifts a week as a nurse (she's 70) and pays friends and neighbours to stay in the house overnight. She says social care is too inconvenient for her. My siblings and I.. just can't. And when I say that, it's partially because some of them have kids to look after, but for others (me included) because it's just too emotional, or uncomfortable, or... I know. So not can't, really. Won't. The last time I did - which was over a year ago - dad urinated on the floor and I couldn't handle it. I said that was it.
I don't like to go over to the house, or the hospital. I just cry when I'm alone with dad. I can't even interact with him without crying so I tell myself he's not there any more, because he's not, really.
Mom calls us selfish. But she also says things like, "Your dad understands me, he's just playing up/being difficult today. I know he can do things, he just chooses not too." It makes us upset. My brother and I wish it would just end. A final major brain bleed, anything. My sisters don't want that. Mom is exhausted and stressed and angry at us and worried for dad. It can't go on but it does 🙁
Hi @amaranth, I hear a lot of hurt and loss, all around in your post. As parents, we raise our children to live happy, independent lives. As children, we don't usually build those deep intuitive bonds that we build with our partners - that your mom built with your dad. We have expectations of our parents, and it is so hard, when the script flips, it's like starting all over again with someone we're unsure of. I think a lot of the key is being gentle with yourselves, and with each other, letting go of expectations, finding that common ground where you now find yourselves, expose and let go of your fears, and plot the course forward together where everyone is supported. There will be sadness, but you can walk together through it, stronger. Sending you all (((hugs))), love and light. -Warmly, Donna (team member)
