Grandma with Alzheimer’s - help

[LaTristesseDureraToujours]

Posting here rather than the Dementia/Alzheimer's forum as it’s kind of a general care question.

My grandma is declining quickly (diagnosed with Alzheimer’s for many years now). My mom visits twice a week, my grandparents live at home and my grandpa is her carer. He is, however, 87. He can’t keep doing it.

In past years my mom has arranged for the social to come and assess, respite for a couple of weeks and looking at getting carers in - however, whenever the day came for these appointments/visits, my grandpa would go back on it and insist he could cope fine and the appointments wouldn’t go ahead: my mom got quite tired of chasing help and then at the last minute him not going through with it.

My grandma used to have bad days where she would throw things, hit my grandpa, be up at all hours. But then she’d be bright, she’d recognise someone in a photo. So the good days would make him think he was being hasty in seeking out help.

Now, they’re all bad days. My grandpa calls my mom for help multiple times a week, she will try to get out of the house and has gone missing on an outing recently, as well as being unable to physically look after herself and the angry outbursts making it hard when my grandpa is so frail himself. It’s so upsetting and she’s sadly not the grandma I grew up knowing. My grandpa finally agreed that he can’t look after her any more.

The social are coming out for a meeting tomorrow. They’d discussed a couple of weeks of respite care over the phone but that isn’t really what she needs - we think she needs to be in a care home as much as my grandpa doesn’t want it. Has anyone been through this with regards to cost, how it all works? My grandparents own their home, have a little in savings but their house won’t sell for much and we don’t really know what to do with my grandpa still living there.

Would they need to sell their house and my grandpa move out and rent somewhere? Their savings as far as I know are about £30k - and from what I’ve read that won’t go far in specialised care homes for those with Alzheimer’s.

it’s just all so sad. Thank you if you’ve read this far. Has anyone been through similar? My grandparents have been married for 67 years, the thought of them having to be apart is horrible for us and for them. And if my grandma lives for many more years, and the money runs out - what happens then?

Any personal stories would be appreciated. Alzheimer’s is fucking horrible.

They won't need to sell the house, not if your grandad is living there.

FIL had a diagnosis of mixed dementia and MIL went into respite as a break from him. She had been displaying strange behaviour and outbursts of her own. She had previously had scans and was waiting for her diagnosis. In respite she was aggressive and dangerous with staff and they wanted her to leave. We said she wasn't allowed home with FIL and they got an emergency diagnosis of vascular dementia from the mental health team, put under DOLS and she went straight into a dementia care home from respite. Your grandma sounds like MIL. MIL is self funding however so that makes the move easier.

I think respite sounds like a good way of starting off the move to permanent placement.

The social worker will do a financial assessment. As I understand it, the house won't be 'counted' as part of your dgm's assets because your dgf still lives there. So they will just look at whatever finances she has of her own and her pension income. If the savings are joint, I think they may only count half of them (not sure about that). If her savings come to under about £23k, she will be funded for a place in a home by the council (there aren't really any council homes left, AFAIK they are all private or charitable now).

If your dgf currently gets carers' allowance or attendance allowance, those will stop. It can be harder to afford living alone - don't forget things like single person's council tax discount, although they may already have got the discount for dementia.

I would love to think that your dgm's respite place could just turn permanent without her having to move more than once - it's likely that she will be unsettled by the move. But I'm not sure how much choice she will get.

Financial assessment excludes the house while her husband is living in it. It then adds up any savings or other assests in her name, and half of any in joint names.

If the total is over £23k she's self funding. Under £16k and she will need to pay a proportion of her pension income towards care but nothing from savings - the LA pays the balance. Between those 2 figures the LA covers part of the difference between fees and pension income, with her savings used towards the rest.

We looked at a care uk dementia specialised home recently for a grandparent. It was absolutely beautiful. It would have cost around 80k per year. You had to evidence self funding for the first 2 years. After this they considered accepting local authority support. Due to him only owning half a house, there is no way we could guarantee that initial 2 year sum of money.

Really shop around.

I’m so sorry you’ve been through this too. 🙁 Sounds very much like my grandma. Been very worried about her getting ‘kicked out’ of a home when she goes into one as even my mum can’t settle her some days when she has to go over and help. She went missing recently on a day out and was resistant when she was found, she is so unsettled in unfamiliar places. She came over to my house for the first time to meet my newborn a couple of years ago, was happy seeing the baby but then agitated almost instantly trying to find her shoes and handbag because she needed to leave, it was heartbreaking.

Respite is a good idea, and can turn into a permanent placement.

Social Services will ask the family to complete a financial assessment. If your grandparents have joint savings of £30k, only half of that will be counted as your grandma's so with £15k she will not be self funding. The house will be disregarded while your grandad lives there.

Care home staff are very experienced at dealing with people with dementia so they may well find it easier to settle your grandma than your grandad or mum do. Some care homes only like 'easy' early stage dementia residents but there are plenty of others which are happy to deal with more advanced and difficult residents. Just be honest about her behaviours when you speak to the care homes.