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Husband with dementia

(34 Posts)
farmgran Sat 16-Feb-19 21:22:42

My poor DH has dementia, is nearly blind and is very unsteady on his feet and won't use a walker. He needs a lot of care.
I'm really lucky having family close by who are happy to help and I'm able to go out and have short breaks. He's also got 28 days a year respite care.
But its the day to day tediousness of it all thats getting me down. I've spent a lifetime nursing the elderly and i feel as tho i never retired! He is 87 and I'm 70 and I know that this decade is the last one I can expect to live a full n active life.
The family are very much against him going into full time care, even the respite care doesn't go down well. Am I being unreasonable?

Tangerine Sat 16-Feb-19 21:27:29

No, you're not being unreasonable. If they don't like him going into respite care, let them take of him for a while. They may then change their tune.

If they don't want him to go into full-time care, are they willing to give up their employment and lives in general to help you?

BlueBelle Sat 16-Feb-19 21:35:31

What a shame you are having a difficult retirement I guess with him being 17 years older than you this was almost inevitable in some way
If the family are against even the respite then they must give you more than a little help, depending on how many of them there are can they not devote at least a whole day a week, or two or three halves just to break it all up, an hour here and there is no longer enough and I think they need to know that you cannot manage it all alone any more
Good luck

MawBroon Sat 16-Feb-19 21:36:48

My friends DH has dementia and since her own illness a few weeks ago (cellulitis) he has been going to a Day Centre between about 10 and 3. I believe it costs £30ish a day But is a life saver as she could not have coped. And what is more, he loves it! Whereas at home he just sat in his chair all day he now has company, people who talk to him and he is safe and comfortable.
Might there be anything like that near you? Even a few hours would give you a break.

Treebee Sat 16-Feb-19 21:37:04

I can sympathise. My Mum was a nurse and she cared for my Dad who had vascular dementia, Parkinson’s and a heart condition at home for as long as she could. She knew when he had to go into a care home, to save her own health. Even then she visited every day and fought his corner. If your DH is ready for full time care, think of yourself and do what you need to. It’s not easy to take that decision, but your family should support you.

PECS Sat 16-Feb-19 21:49:39

I am sorry your family are not also considering your needs equally with your DH needs. We have a friend who has dementia. His wife was not keen to consider a care home for him. Recently he needed to be admitted to hospital due to an infection. He was perfectly happy and not distressed or worried. This helped his wife to see that he could be cared for elsewhere and she could still have some life for herself..which , if he could say so, he would want for her. farmgran if Mrfarm would want you to live your life more what he would want for you flowers

Anja Sat 16-Feb-19 21:53:00

No not unreasonable. Thec’family’ are going to have to step up to the plate if you are to keep him at home. You need time off during the day and preferably at least one night a week where he is off your hands.

Can they not organise a rota to help you out?

sodapop Sat 16-Feb-19 21:53:21

No you are definitely not being unreasonable. The breaks you mention are not enough for the amount of care you are giving. I would tell your family you need a short holiday to get yourself together and they need to arrange care for your husband for that period. You deserve some regular time off where you can plan things you want to do for yourself. Sometimes we just have to say ' no' for the sake of our own health and sanity. I wish you and your husband well.

farmgran Sat 16-Feb-19 21:53:22

Thankyou so much for your speedy and helpful replies.
Maw there is daycare available but he's nevet been at all sociable and would baulk at it.
I'm afraid the very sight of him sitting in his chair fills me with a horrble hatred. I look after him well and I'm kind but this awful negative feeling is not good. Our marriage was a bit of a mistake after my first husband died anf i was young and alone with a baby. Sorry to be such a misery guts!

Anja Sat 16-Feb-19 21:55:12

farmgran he will have to bite the bullet too and never mind the baulking at it,

NanKate Sat 16-Feb-19 21:57:18

Farmgran you only have one life and you sensibly realise that you could have a good few years ahead of you to enjoy. Why don’t you research possible homes. Hopefully your family will come round to the idea. Best of luck.

Namsnanny Sat 16-Feb-19 21:59:04

Lots of really great advice above, hope you can use some of it!

Just wanted to say your not at all unreasonable, and I'm sorry things are difficult for you just now.

farmgran Sat 16-Feb-19 22:02:19

Its good to have a vent. Noe that I've written this down and read your supportive replies I know I'm going to have to have him reassessed for long term care.

Urmstongran Sat 16-Feb-19 22:06:16

It must be a hard slog farmgran I have no words of wisdom I’m afraid but I’m glad others have been helpful in their replies.
I can only send my best wishes for the future, whatever you decide is best. And ?

BlueBelle Sat 16-Feb-19 22:37:16

Can I just say although my dad was a totally lovely man he wasn’t used to being in any kind of group situation he and mum had just been a couple all through life When mum had to go into a home when it was all beyond us both, he was persuaded to go twice a week to a day centre for company ( he was still very astute) he absolutely loved it and made friends so easily he so looked forward to his two days there but he would have said no if asked before

farmgran Sat 16-Feb-19 22:41:53

I might think about it Bluebelle. It might do him good to have some company. I wish we lived closer to town!

Jomarie Sat 16-Feb-19 22:50:39

A straight answer to your question is simply NO you are not being unreasonable. Put into place arrangements for your DH that give you some space and time too - it's not abandonment it's being kind to you both, which I'm sure he would want for you both. Don't consider anyone else's views just do what is best for both of you. So sorry for you having to make these difficult choices flowers

leyla Sat 16-Feb-19 22:59:32

I don’t think you are being unreasonable at all. But would you be able to fund it?

SueDonim Sat 16-Feb-19 23:07:17

It's your family who are being unreasonable, Farmgran. A friend's husband is currently hospitalised with dementia and will be moving to a care home soon. He's young, only 70, but it had become nigh impossible to care for him at home any more because he was putting both himself and my friend in physical danger.

His dementia is worsening but conversely his overall situation is improving in that he seems very content where he is. That has in turn improved life for my friend and she can attend to her wider family as well as enjoying 'quality' time with her Dh now she hasn't got the fear of what might happen next looming over her.

farmgran Sat 16-Feb-19 23:17:54

Hi Leyla, we're in NZ and over here the funds are loaned and payed back when the patient and spouse die and the house etc is sold. Which is a bit hard on the kids as they won't have much of an inheritance!

stella1949 Sun 17-Feb-19 04:02:26

I really get mad when kids talk about "their inheritance " ! It's not "theirs", its yours to do with as you see fit.

If they are so against you accessing a care home, they might like to take their Dad for an extended period of time, caring for him 24/7 to see what they are actually asking you to do ! They might think differently if they had to do it themselves.

You're doing your best - don't ruin your life looking after your DH, I'm sure he wouldn't want you to if you could ask him. I'm sure that like most men, if he still had his faculties he'd say " good heavens, put me in a home ! I don't want to be a burden on you ! "

Take care of yourself, don't let the younger generation push you into going above and beyond your capabilities.

BlueBelle Sun 17-Feb-19 05:01:03

One of my school friends has dementia She is sweet with it and not greatly troublesome but her husband is obviously finding it more and more overwhelming as he does everything their only child doesn’t live nearby and they seem to have little to do with two children from her previous marriage
He is introducing a care home very gently, it started with half a day a week for weeks, then one day a week, now it’s two days a week, and sometimes overnight he calls it her club it seems to be working for them

kittylester Sun 17-Feb-19 06:56:17

I help run Carer's courses for people caring for people with dementia.

They, and you, all deserve medals. But everyone has their limits and it sounds as though you have reached yours. I think you know that really.

annsixty Sun 17-Feb-19 07:08:19

My H has dementia and last year ( April) he had a stroke, he had already been in hospital a year ago after a bad fall.
I can only say that last year for me was horrendous.
I was given 6 weeks respite by SS and from about September my H went to daycare 1 day a week from 9.30am to 5pm.
This was a lifeline but I was mostly too tired to do much.
About October I realised I couldn't carry on, my H is 82 and I am 81.
I was lucky to get him in the care home he had his respite and daycare, he went in permanently on November 21st.

I am relieved and happily surprised that he has settled very well and is content.
My own health and wellbeing has improved so much.
I visit 3 times a week and he is pleased to see me but quite content when I leave.

Please do it, you deserve a life, the AC must be made to see that.
Your H will settle and be fine, but do it for your sake and not his., and get your lfe back.
I assure you that you will feel better towards him than you do now, resentment is not a good feeling and that will disappear.

kittylester Sun 17-Feb-19 07:32:38

Good post, ann. I'm so glad it has worked well for you!