I'm a long time carer for my disabled mum and work in a specialised teaching role that is equal parts stressful and rewarding. The only processing time I get is on the daily commute or when mum is asleep because she always needs me to do things for her the minute I walk in the door. Even if I want to take a bit of time to use the bathroom or change my clothes or get a drink it's not good enough for her. My sleep is disturbed with vivid dreams that make me wake up at random times in the night and reduce the quality of sleep I get every night. My dad is getting burnt out as well but he's not the type of person to talk through his feelings, he shows them, and his sleep is more disturbed than mine as he has to wake up every hour or so to help mum use the toilet.
I know I shouldn't feel bitter because she's my mum, but it's never really been a reciprocal relationship apart from when I was very young before she became even a fraction of the disabled she is now.
Does anyone have any advice? I don't really have a circle of friends I can rely on, and in the evenings there isn't a lot to do in my local area without having to pay every time. I don't have the luxury of leisure spending every week so any advice would be helpful
Can you and your dad give your mom "tasks" during the day, like folding a large pile of kitchen towels, matching and pairing a lot of colorful socks, sorting plastic utensils...anything that will burn her mental and physical energy so that she's occupied and has a sense of purpose? We did this for my 99-yr old aunt with mod/sev dementia and she sleeps through the nights 99% of the time, even if she naps during the days. She does the tasks at least 2 to 3 times a day. Sometimes she does it with relish and other times not so much but we tell her it's super helpful and important and she usually completes it. Occupies her for about 20 or more minutes, which is so helpful.
We also purchased a 2nd hand foot pedaler for her to work while she watches tv or looks at a magazine (does it for about 15 minutes every day). Burning her energy may help everyone to get some sleep at night. Keep trying things, as something will surely work. Dementia never stops changing our LOs and so we must continually adapt. Everything about dementia is hard. May you all receive rest and peace in your hearts!
Whenever we suggest an activity she'd rather not do it. She won't even do her physiotherapy without a doctor in front of her and only played a board game with me recently because her sister was visiting and wouldn't let her not play. If it had been me doing that I'd have been argued with and she wouldn't have played properly at all.
Energy wise maybe you're right, but like I said she won't do it without someone else basically forcing her. With us she's like a stubborn mule but with others she's more amiable, especially when she can hear them
Do you and your father currently get any back-up or support at all?