Too young for a care home?

[Fizzyrosie]

My Dad is 76, diagnosis of dementia in Oct. He seems to have got worse quite quickly and my mum can't really cope. He is fine with me but I work full time. I go round at least once a week and also do overnights too. I can't really do more. They've just started getting carers in twice a week which does mean my mum gets a break.

It has been very stressful as they've moved house further away from me and my dad has gone further downhill and now seems to struggling with incontinence. My parents marriage has often been strained but the atmosphere is so tense all the time and caring takes endless patience at the best of times. My mum wants to look at care homes. I think we should give the carers more of a chance and see what we can do to manage it better at home including not getting so angry with him. When I look after him I can get him to relax more and generally find he's ok. This just makes my mum angry "he does it for you" is the refrain.

They have some money but not that much if it's got to last 10 years! He's pretty fit and well Apart from dementia.

When we look for homes should we look at ones that accept council funding too as he will probably need that when the savings run out.

Your poor mum is obviously struggling, kindly you need to go with her wishes not yours. It is a really difficult illness to manage at home.
House cant be sold to pay for fees all the time she is living there.
He is no way too young, in fact for dementia it is about average age, Ive worked with people in their 50s in care homes with early onset dementia.

Unfortunately not that young and increasingly common. Would respite care be an option to give your dm some breathing space and time to organise carers and equipment to facilitate him being at home and her coping better? Has he been checked physically for any infections which may make his difficultires worse?

It really is your mother’s decision, she is the one living with him. When the person becomes incontinent that is often the trigger for a move to a care home. Carers in twice a day is little use for continence care. ‘Knowing who you are’ is not a consideration, some people with dementia recognise their family into the late stages of dementia.

My mother moved to a care home when she was at the ‘moderate’ stage. She lived alone with carers coming in and was not safe to be on her own when they weren’t there (but she was still continent, different people lose functions at different rates). She lived there for seven years, and was self funding for the first 5 and a half. The local authority then took over her funding, in the same care home.

There is no predicting how long your dad will live so all you can do is what is best at the time.

I work in a care home. Our oldest resident is 100 youngest is 58. It dosent matter what age they are you need to do what's right for them.

You need to see a few before deciding as it's a big change for all of you. You could see if he is entitled to FNC (funded nursing care) or anything else.

Council also do a thing where they may pay to basic care fee and then you have to pay the top up.

Our home is waiting list dependent but they are lots of agency's like care home selection who work on he behalf of yourself to find placements

I'm really sorry you are all going through this. Give me love to your mum

It’s your mums decision. She’s doing the daring 24/7. You are not.

My mum thought the admiral nurses were useless as they don't actually do any helping just advice and the care assessment from the LA just told her she had to pay for it all and there was nothing they could do. Mental health assessment also came round and asked all the same questions and just left her with the same leaflets about Alzheimer's that she's already got.

I've found a day care for Mondays near where they live now and its all day but she hasn't got him there yet as she's wanted to get sorted with the house but hopefully next week. Carers come on Tuesdays and Thursdays in the day for about 4 hours. Then he sees friends on Thursday evening and then I do Fridays / and or the weekend. I also do overnights once a month either in the week or at weekends but probably need to make this weekly. My DH has also been doing an evening a week to help get them sorted in the new house but that's not really sustainable.

I can't afford to give up my job. I'm using holidays and pushing things as it is. I also have my own DD and DH to think of.

With the continence thing is that as it is a new house he gets confused and sometimes wees in the bath in the night. Not ideal I know.

He gets dressed himself and washes and shaves with a bit of prompting.

We'll up the carers in the short term and start looking for care homes I think. She's decided she wants him in a home and I agree it's her decision. We'll look at the finances too and do the splitting out and I'll just hope against hope that we can get him somewhere that is ok and try to persuade him to go. At least he won't be getting shouted at all the time.

And then when the money runs out in a few years he can continue there.

I've been visiting close relatives in care homes for over a decade. Age is irrelevant. I've seen middle-aged people with degenerative diseases living in care homes. The needs of the individual are the only criteria. I would say that finding a home that has LA contracts is a good thing as he may be able to stay when money runs out, though there are no guarantees. Move him before their relationship deteriorates further and the situation becomes unsafe.

Did they move once he had dementia?

Yes. I didn't think it was a good idea but my mum was adamant and I supported her.

It's common for people with mid level dementia to be in a nursing or care home, no matter their age.

Your mum clearly isn't coping with him being at home and he would get much more support and nursing care etc at the care home. There's also opportunities to socialise.

I'd say you should support her decision and help them find somewhere within their budget that Dad would accept and meets his needs. And is not too difficult for family to visit.

As you and your DH are already spending considerable time trying to help out, would it not be perhaps a bit easier on you if you got your DF to move in with you (assuming you had space)? You could then get the carers to come round to your house to do cover when you're not available. We did that for my MiL, with both of us working FT for about two years before her dementia got so bad that she couldn't go out to groups. We were able then to increase the carers and my DH dropped to PT work. This might not be doable for you and you would still have to consider how your DM is coping and what care she might need. But if they are not insisting on staying together, it might be a cheaper option than a care home immediately.

That sounds like a good plan OP.

Of course you can't give up your job, I doubt anyone would expect that and I am sure you are doing all you can. It has been made more difficult due to them moving house, never a good idea when someone has dementia so I am not surprised if he's confused about where the toilet is.
Getting more support for the time being and planning for a care home is a good idea.

Are they claiming Attendance Allowance? Has he had the Occupational Therapist in, they can provide a commode or other aids which might help especially at night?

This. In my experience it is very difficult to get help and it's not joined up but you have limited to no chance of getting him into a Care Home if he has capacity and he doesn't want to go.

I dont mean to be unkind, but mostly people with dementia do not live for 10 years in care. Recognising you isn't really an indicator.
My own father was physically strong and living alone, knew everyone, driving (erratically!!), but struggling with sleep, incontinence, understanding situations. He voluntarily went into care "for a short break" and lived 4 more years, he knew us up to a few months before he died. The dementia affects their body too and it starts to shut down functions. An advisor we spoke to regarding applying for state support saud the average is 3 years.
I agree with posters who say that if your mum is struggling you need to listen, and support her.

There was a man in my DF's nursing home who was 69 when he went in - early onset dementia which progressed rapidly. The man was only in his early 70s when he died - after about 3 years in the home.

I agree that this is your mother's decision to make.

Not too young at 76. Neither of my parents got that old, although neither died of dementia.

I’d be inclined to support your mum getting him into a home, you don’t know how many good years she has left herself. It’d be a tragedy if she spent five years or longer reluctantly caring for him and then got ill herself…its an awful disease.

Ensure that your DF claims attendance allowance

This can help to pay for more carers

You or your DM should request advice from GP about managing the continence issues

When you visit, can you give your DM some time to herself

Good luck

As others have said you need to support your mum.
She has a lot to do as a 76 year old and if she keeps this up she will end up physically and mentally drained and will not recover.
That's what happened my mum.
She was exhausted minding dad after his stroke.
She was going around exhausted, confused, not eating right.

Eventually she fell, hospital for 6 weeks with broken ribs.
Dad had to go to nursing home while she was in hospital.
She joined him in nursing home then.

I truly believe she had herself completely worn out.
She wasn't eating or sleeping with the stress of it all but she never told us.
She always told us he wasn't too bad

You could look into care fees annuities as a potential way to help manage the long term risk of running out of money OP.

We were heading for needing a care home when my Dad died at 69. Didn’t really consider he might be too “young “ his care needs were progressing pretty quickly.

Alzheimer’s can be really difficult to predict imo. At the least it sounds like your mum is really struggling so having daily carers and really stepping that up might be a start. But ultimately if she wants a home, I think you might need to go along with that.

My sister was 47 when she went into a care home. She had mobility issues and dementia as a result of radiotherapy for brain tumours. My brother was 65 when he had to go into a care home because of early onset Alzheimer’s. Age is irrelevant.

I can confirm the ‘showtime’ . Both of them could act quite differently for others than they did for people close to them. That’s possibly the most heartbreaking- DBro couldn’t remember his own children but instantly recognised me and could talk quite coherently about times growing up. He often thought his wife was the carer and complain to her that his wife hadn’t visited. Such a cruel disease.

When my mum was in a care home with Alzheimer's there were many people younger than her. Unfortunately there was a lady my age.. 60yrs old.

Agreed.

My father went into respite care when he was 76. By then the dementia was really exhausting my mother with disturbed nights and my father was having toileting accidents - both pee and poo.
Dementia is different for everyone but it does kill you. My father died before he was 80 having spent the last few years in care.
Expect a deterioration every time he moves. Hospital is particularly distressing if he ends up there. My father fell, broke his hip and never walked again as he lacked the cognition to do physio. I had POA along with my mother and when she was on a much needed break away I turned down hospitalisation for IV antibiotics. (She was happy with my decision) By then hospital was very distressing for him and he survived that infection with oral antibiotics but these are the sort of decisions you need to discuss as a family.
It is a horrible heart breaking disease where your relative disappears in front of your eyes. It strains family relations as everyone is trying to do the right thing but their views of what is right often differ.