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.

How old is your mum?

I know you're doing what you can and it sounds like you're doing a lot, but you're not the one living with grinding reality of it day in, day out, with the only breaks coming according to someone else's schedule. If the marriage was already strained the caring must be hell for her. So when you talk about what "we" can do to manage better at home you're really talking about what she can do.

It's a shit situation but ultimately if your mum feels it's getting beyond her, and despite the financial risks associated with it, it has to be her decision unless you're going to have your dad move in with you.

You need to go with what your mum wants, she’s the one dealing with the brunt of it.

She's the same age. Agree it's her decision. Just wondering how unusual it is to go into a home at that age and with mid stage dementia. He still knows who we all are and is quite aware.

Yr dad needs to want to go.
Even if he lacks capacity and yr mum has legal powers it will potentially mean an application to the court of protection if he doesn't.
Would respite care be a compromise?
Day service an option?

The thing about council funding is that if they don’t think he needs to be in a care home and could manage at home with carers then theoretically they could refuse funding when the time comes. If they are managing ok with just a couple of carers a week he’s probably a long way from needing residential care. How long would their £ last if paying privately at £1500 or so a week?

He won't want to go (or stay). He will probably try to leave and they have to manage that. My mum has single LPoA. Will she need to apply to the court ahead of the move. We could look at respite I suppose

They have about 4/5 years worth at £1.5k a week. That doesn't include the house they live in. But think I'm right that it can't be sold if my mum is living there

The house is not part of financial assessment. Nor are any savings or other assets in your mum's name, and only half of any in joint names.

Age isn't really relevant, but stage of dementia is.

Respite or day centres are probably the first thing to try at the moment.

My DM is in the early stages of dementia, I visit her every day. She knows who I am but it is still relentless and emotionally draining.

My DF also had it early stage but the cancer killed him before the dementia did. They lived further away then so I only saw them every few weeks, he always put a front on when I visited so I never really saw how bad he was until near the end. Now I realise what my DM had to put up with

My DM is much better with my DH than she is with me. Spending every day with a loved one with dementia can be horrendous

Has your mum got any outside support?
Admiral nurses? Age UK? Had a carers assessment? She is eligible for this even if yr dad is self funding.
If he lacks the mental capacity to make the decision to move them yr mum would still need to be acting in his best interests, and in the least restrictive way. This usually means upping care at home including assistive technology, respite might form a part of this.

Respite care also gives the person a chance to see what residential care could be like and may alter their view.

The above organizations can give more detailed, nuanced advice.

It would potentially be worth your mum speaking with the OPG if yr dad lacks capacity, re what needs to happen which could really depend on his level of resistance, for example how would he actually get to any home in the first place?

It sounds very stressful for everyone. I hope you are looking after yourself too.
I hope this makes sense, sorry if garbled, I'm quite tired but you must be worried to be posting this late at night

Showtime for 'strangers' is a very real phenomenon (and 'stranger' can include even the closest family members if they don't actually live in the same house).

My stepdad had dementia and I used to visit for a week at a time because I live at quite a distance. His daughters who lived closer would pop in much more frequently but only for an hour or 2 at a time. For them he could keep up a front for the duration of the visit, so they very rarely saw the reality. For me, the first time I visited after it really took hold he kept showtime going for the first 4 days; the next time about a month later it lasted less than 2 days; and at each subsequent visit it got shorter until it was down to just an hour or so after arrival.

I'd up the carers if possible and wait a bit longer but, ultimately, the decision is your mum's, she is the one who lives with him all the time.

It's very sad. I am 76 and have made plans to barricade myself in at the first hint of care home. I need a toy armoury all of which looks realistic and scary and will deter visitors, any suggestions?

Are they are day centres that could give your mum a break?

Where in the country are you? 76 isn't that unusual in a lot of Northern post-industrial areas, ie high levels of industrial disease and poor life expectancy etc.

Give social care a call for some advice, they can explain your options and what a financial assessment will consist of should you have worries your Dad might not be able to sustain the costs himself.

I think it’s fine for you to say no to a care home if you’re happy for him to move in with you and become your responsibility. Other wise you don’t get say. Your Mum is older so will have less energy and physical strength and is doing this all the time.

what option is there for day centres? even self funding.

that could give your mum a break all day and then she only had to look after him at night. hopefully woth carers to change him and give him a sleeping pill.

granted i dont know costs but if care homes are £200 a day and you’re prepared to pay that then maybe even a £100 a day day centre would make the budget stretch 50% more?

or maybe it’s not an option or too confusing.

I was going to say this. Support for your Mum is really important.

76 isn’t too young if it’d the right thing for that person, but have they (both) been assessed by a social worker? They’re not having much support atm. Have more carers been considered, what about day centres, continence team etc?

Does your dad have capacity to make decisions about his care needs and where these should be met? Not just in your opinion, a formal capacity assessment? If he retains capacity, he cannot be forced into a care home against his wishes.

i would suggest an urgent referral to adult social services highlighting the high degree of carer stress and go from there.

A financial assessment will look at your DFs income and all savings. It will deem each person to ‘own’ half of the savings so if they have £50k, he will be considered to have £25k. As your DM is over 60, the house will not be considered at all.
I’d suggest your DM looks at separating their finances - all her income to go into an account in her name and half the savings too. This will make it so much easier if he does need full time residential care. Also, she needs to either have his income in an account with both their names on, plus his share of the savings, so she can pay his care home fees in the future. Make sure any carers they currently pay for comes out of his account, not a joint account.

What does he want? Getting dementia doesn’t automatically mean he can’t make decisions and doesn’t have mental capacity. You can’t force someone with capacity into a care home. LPA for health means nothing while the person can decide for themselves.

I’d approach social services and ask for a care act assessment which he is entitled to regardless of how much money he has. They can consider his capacity alongside and go from there.

In the meantime look at days services and make sure you split any joint assets/funds (except the house) now so your mums half isn’t eaten away. As long as you can show you did this to protect her half it won’t be seen as deprivation.

Good luck.

My aunt died last month aged 71 from
Alzheimer’s disease and she had been in a care home for 8 years so I wouldn’t say too young.

Agree with others it sounds like carers could be stepped up especially to support your Mum.

He is not too young for a care home and that would be the best thing both for him and for your mum. She shouldn't be having to do this much work at her age.

"Continence issues" are no light thing to deal with for the sufferer or carer. It was one of the most distressing parts of ageing for my parents, especially after mum got deeper into dementia. Dad found it very hard to help her keep even basically clean, and carer visits four times a day left a lot of hours in between when she was essentially waiting for help with a nappy change. The house smelt awful, and they had to put up with it all day, and they'd always been a scrupulously neat, houseproud couple.

It sounds like a move to a home will eventually be needed. It might be better earlier while he has the ability to get used to it.

My mum is in a nursing home aged 75. Dementia diagnosed last year. She had a very sudden decline and ended up sectioned. Now in a home we haven’t chosen.
I would say look at homes now before a crisis. They have waiting lists if they’re good.
trying to move my Mum to a better home is proving difficult as no spaces for the care she needs. Things can decline very suddenly in my experience and I wish I’d been more prepared.

I can empathise with how difficult this is for you all. Firstly, I’m sorry about your dad. It’s a terrible diagnosis. Your mum is in a terrible position and the support she’s getting isn’t enough. She’s barely getting a break- carers twice a week isn’t that helpful at all with dementia and incontinence. If she says a care home is needed, a care home is needed unless you’re able to move him in with you. It may look like they could make it work from the outside but it’s her who has to do the care. Even if carers came in every day there’s still 23 hours of the day it’s on your mum.