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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

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Your mom's urgent needs are most likely not urgent and can be deferred through distraction and redirection. I've learned this with my own mom who lives next door to me and is 92 yrs old. She often calls me up or walks over with something that she wants done right away. I write it down on a list and tell her I'll be over to take care of it "shortly". It took me a while to get out of the auto-response of reacting to her requests right away. She always acts so disappointed when I put it off, but that's just how it has to be. It's not going to harm her.

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!
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NamelessVirtue Jan 2022
Yeah we try ignoring or telling her to wait but it's not good enough and she can become manipulative, playing the victim or using her failing hearing as an excuse. She argues with us a lot about her ability to do things and doesn't give directions based on our capacity for understanding. We both need direct orders but she takes so long to say what she wants we automatically feel frustrated because it's taken much longer than needed.

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
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Have you had a Carer's Assessment done by your local authority? Everything's been shaken up and stood on its head by Covid, but even so you are entitled to this and you may be entitled to support and to Carer's Allowance (which could help pay for some down-time activities, e.g.).

Do you and your father currently get any back-up or support at all?
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NamelessVirtue Jan 2022
We're currently on a waiting list for support. She gets disability allowance but I've not qualified for carers allowance because I'm salaried and earn over the threshold. The amount of times she needs to go to hospital is increasing and every time we bring up the need for assistance. We understand how stretched the medical profession is at this point in time, but for the sake of our mental health we need a break from all responsibility for a little while, so we can appreciate the time we have left rather than just feel stressed or apathetic
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