Moving parent into care home

[Lisa-72]

My dad fell a year ago today after a dementia review at his doctors. He broke his hip and had to have surgery.
He was fit and well and lived with mum and was able to do simple things himself, he was officially diagnosed the week before lockdown.
He had his op on his birthday a couple of days after the fall.
He wasn’t able to do the physio required to get him mobile so on Christmas Eve he moved to a care home.
Our experience of this was heartbreaking, he was left in his room for hours on end, he would keep trying to get out of bed and would be found in the corridor by staff. In the first month he had over 60 falls recorded.
We would find him alone in his room with no clothes on and his meals just left on the side, one of us would try and go daily to sit and feed him.
We watched him decline rapidly in there and eventually he was admitted back to hospital at the end of April following some choking episodes.
We sadly lost him on 6 May this year 😢
I miss him so much and am so angry at the ‘care’ home, they didn’t care for him and the neglect was a factor in his death.

[ajw77]

We lost my mum to dementia just over a year ago, as others have said definitely get a social worker involved and also look at applying for CHC funding.

Mum didn't initially qualify for funding, but as she deteriorated she got the full cost of her care home fees funded. This was such a relief, as it was one less thing to worry about at what was already a very upsetting and stressful time.

Look after yourself as well, it's not easy dealing with a parent who has dementia.

[ali-s]

Originally Posted by Princess Ariel

Definitely request a social worker. They will be able to assist you with the CHC application.
Some of these stories are truly heartbreaking. The costs of nursing home care are astronomical.
1:1 care at night for 2 weeks is actually a good thing as he will likely be unsettled due to the new environment & nights can be very challenging with patients with dementia.
As someone has mentioned as it progresses increased agitation and aggression is common, this is usually coming from a place of confusion and fear though.
The kebab shop story did make me smile though, my grandad hated being in nursing home care. He was never aggressive but always escaping (usually found in a pub!) he got moved from so many care homes because they couldn't keep him safe!

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I've just phoned adult social care. The woman said 'if he's self funding I can't think why they are advising a social worker ' . I mentioned his challenging behaviour, CHC , EMI , the fact he's got to move to another home and the 2 incidents where the police were involved. She's going to talk to her supervisor and get back to me.

[DisneyYoda]

Feeling for you Ali. Most of the population don’t experience the heartbreak and financial disaster that is dementia and Alzheimer’s. Only those who have been through it really understand.

Can I suggest that you start by talking to your father’s GP if you haven’t already? They can advise particularly on meds if appropriate.

[Gill H]

Please talk to Age UK or Age Connect also. They helped us navigate the options and complete the forms. So helpful.

Mum lived a year in her nursing home and after the first 6 months the CHC said she didn’t have to pay anything. The staff were amazing.

[DisneyYoda]

Originally Posted by Gill H

Please talk to Age UK or Age Connect also. They helped us navigate the options and complete the forms. so helpful.

Mum lived a year in her nursing home and after the first 6 months the CHC said she didn’t have to pay anything. The staff were amazing.

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Sounds like you had a good experience with CHC process. I’m pretty sure that’s not what most experience. You were very fortunate to get CHC funding which is as a common as hens teeth! Our experience was that the system fought tooth and nail to deny CHC funding until the estate was drained.

My one bit of advice for those starting on the CHC process would be to lawyer up early. The CHC assessors will run rings around you and talk you into scoring lower than might actually be appropriate in the assessment care domains.

[Trouble3]

Originally Posted by DisneyYoda

Sounds like you had a good experience with CHC process. I’m pretty sure that’s not what most experience. You were very fortunate to get CHC funding which is as a common as hens teeth! Our experience was that the system fought tooth and nail to deny CHC funding until the estate was drained.

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This has been my experience too. My Dad's been in a nursing home for 7 years now and his savings are dwindling (I had to sell both the family home, in the family for 3 generations and his Lanzarote apartment).

I know I need to start the ball rolling with Adult Social Services soon and I'm not looking forward to it.

The "help" for a parent going into care is a joke; misinformation and sloping shoulders seems to be the standard, from the Hospital Stroke Unit to Adult Social Services... we have not been "lucky".

Dad does get Attendance Allowance and Funded Nursing Care, but as others have said, no chance with the fully funded CHC... he's basically got to be dying and even then, you've got to die quick, or they review the situation (yes I have seen that happen to a terminal cancer resident).

[Gill H]

We didn’t even apply for CHC. It was a complete surprise to us. We had been paying towards Mum’s care (one contribution from her via me, and one contribution from Dad). We expected that to continue.

Out of the blue we got a letter saying she had been reassessed and due to complex needs her care would be fully funded by CHC.

Mind you, she barely ate from the time she went in, and by the end she wouldn’t even drink water, so it was only a matter of time.

[DisneyYoda]

Originally Posted by Trouble3

This has been my experience too. My Dad's been in a nursing home for 7 years now and his savings are dwindling (I had to sell both the family home, in the family for 3 generations and his Lanzarote apartment).

I know I need to start the ball rolling with Adult Social Services soon and I'm not looking forward to it.

The "help" for a parent going into care is a joke; misinformation and sloping shoulders seems to be the standard, from the Hospital Stroke Unit to Adult Social Services... we have not been "lucky".

Dad does get Attendance Allowance and Funded Nursing Care, but as others have said, no chance with the fully funded CHC... he's basically got to be dying and even then, you've got to die quick, or they review the situation (yes I have seen that happen to a terminal cancer resident).

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I feel your pain. And all this is at a time when your loved one is slowly becoming a shell of what they were. It's immoral really.

We had a double act of Adult Social Services and NHS work us over. Such 'nice friendly' ladies. Talked down my mum's scores and got us to sign it off. This was all before we knew how the system worked off course and they are actually your adversaries. They played the emotional card manipulatively knowing that it's natural for people to want to say their parent is actually not as bad as they actually are.

The solicitor we spoke to later said we might have had a better case if we had not shot ourself in the foot early on.

Whatever, it's a farcical, nasty system. I noticed the last government quietly shelved the plans to make the system fairer and I can't see the current government reviving those plans.

[Gill H]

As I said, talk to Age UK or Age Connect. They know how to word things on the forms and will come to the house and help you through it. They are a charity so said they would welcome a small donation for this but that’s all.