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Dementia and Alzheimer's

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How has a dementia diagnosis affected your family? How do you cope? We are struggling so much.

29 replies

HowdoIgetbacktothe80s · 20/02/2023 11:24

My lovely 80 year old dm lives with my 81 year old dd. Dm was diagnosed with Alzheimer’s around 5 years ago.
My dsis and I both live in the same village and help out as much as possible.
I go in approx 5 days a week and help with as much as I can (and when I am not at theirs I am constantly worrying about them).
Obviously, things weren’t too bad at the beginning but over time the stress of helping mum all of the time is taking its toll on my dad (he is not a naturally born caring type). He is angry and resentful which I understand, he can be quite mean spirited to my mum at times but he is so headstrong and fickle and chnages his mind over things regularly (like getting in help etc) which causes my dsis and I one hell of a lot of stress and anxiety (which he seems oblivious to).
Between us we help out a lot.
A year ago I arranged for a carer to come in to help. Initially for an hour a week to get a foot in the door so to speak and with the hope of upping it from there depending on mums needs at the time but dad won’t increase it. The carer just draws and paints with mum for that hour. In the meantime dad is moaning that every morning mum is struggling to dress and wash herself. This is true. I found her the other morning with toothpaste all over her face whilst trying to shave herself with a toothbrush 😢
He just will not increase the carers hours but instead moans that his life is over and he can not cope and that she will need to go into a home soon (mum is in the late early stages it seems a shame to put her in a home so early on when carers could help)
Money isn’t the problem as they have absolutely loads I think it’s just the idea of giving into the disease and admitting it’s defeating him.
I also had arranged for mum to visit a day centre once a week to give dad a break but after a year he cancelled it because mum obviously would get confused each week, saying she had never been before and hated it. She didn’t, she loved it. I would take her and collect her, she always had a smile on her face when I picked her up and would chat about all she had done there but obviously as with the disease, she would forget everything half an hour later.
I am just as overwhelmed by it all as my dad is. I honestly don’t know what to do to help them anymore.
Yesterday, my dsis and I said we would contact another carer company (which has been recommended to us) and ask them to come in every morning to help mum wash and dress her which would give dad an hour or so to get himself ready for the day. We said we would also take her back to the day centre to give him a break every week.
Dad has terribly high blood pressure which medication isn’t helping and I worry so much for his health too.
It is causing all sorts of anxiety and health issues for myself and dsis which dad is obviously unaware of. It’s affecting my home life as well as dh and I row a lot about how much I help my parents whilst they have a huge amount of money in the bank doing nothing to help.
Until this disease hit our family I truly did not realise what a truly wicked disease it is and how it affects so many aspects of everyone’s lives. My heart goes out to anyone fighting dementia or having to watch their LO’s battling this awful thing.

Is anyone else in a similar position to me? How do you cope with all of this stress? There never seems any light at the end of the tunnel.

OP posts:
linnet88 · 24/02/2023 11:48

To vent some more...I've personally not found a carer coming in actually all that helpful, although the person is lovely and very kind. But she has struggled to get FIL to get up, shower and go for a walk which is what we asked the carer to do. He argues and doesn't comply, is sarcastic, a bit rude or laughs at us (which really feels quite outrageous), so I've had to intervene every day, which makes the carer sort of pointless and creates more work for me, which rankles especially as he is not my father and I don't feel any special responsibility towards him. It has just ended up like this because my husband works long hours away from home and I work from home. Also I think carers maybe tend to assume that the wife will be in charge of the caring arrangements.

I also feel possibly a bit judged (although it's probably just in my mind) about various things, such as the house not being clean enough (we clean it once a week and keep things tidy in the meantime) or why I'm not doing the caring when I'm at home, or today the carer asked if I 'ever go into town' or anything although she knows I work. It's true I've answered the door in the morning in my PJs or exercise clothes every day as I WFH and two nights this week I've still been in bed because I was woken up in the middle of the night by FIL, but still, her comment made me feel lazy and I wondered if they report on us and our living arrangements.

Anyway, he is going so no point in moaning, I guess it just feels a bit better to vent...

Mischance · 24/02/2023 13:52

Don't feel bad about it linnet88 - my OH went into a home in the end. It was the right decision for all of us. A hard decision, but undoubtedly the right thing.

linnet88 · 24/02/2023 14:40

Mischance · 24/02/2023 13:52

Don't feel bad about it linnet88 - my OH went into a home in the end. It was the right decision for all of us. A hard decision, but undoubtedly the right thing.

Thanks! 😊

We just didn't think it would be necessary yet as he is otherwise easy to have around and is able to go to the loo by himself, helps with dishes, is not a danger to himself or others and is mellow, but we just can't handle any more broken nights! It's so difficult to know how to handle those situations in the middle of the night when you can't ignore it or he will just not stop walking around disturbing everyone and then when you try to reason with him it's like talking to a brick wall!

HowdoIgetbacktothe80s · 24/02/2023 17:48

linnet88 you did such a lovely thing giving up your home for your FIL, please don’t feel bad for getting him in a home. You have done the right thing. I hope it all goes well and he settles in well.
Thanks Mischance I have contacted the day centre today and they are happy to have her back which is a relief. Hopefully that will give dad some much needed time to himself and will keep mum occupied as she’s just falling asleep all the time when at home.

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