Care home have said they can’t meet dads needs - what next?

[Concernedmum12398344]

Hi, I hope someone can help. My dad is in his 70s, and has mid to late stage Alzheimer’s. Up until two weeks ago he was cared for at home by my mum, with help from me and my brother.

Two weeks ago he went to a local care home for a respite stay. They were fully aware of my dad’s needs when he went in - or at least we thought they were.

After only a couple of days we began getting phone calls from the home about various issues. Dad’s condition deteriorated significantly and he started antibiotics for a urine infection.

After the first week, my mum decided that she’d like him to stay in care, so she asked the home if they could take care of him long term. This was a agonising decision for her and us all. They fobbed her off for days saying they would see etc. then when the social services team came for a meeting one of the nurses said he couldn’t stay as the home couldn’t meet his needs. They said he’d lashed out at a carer, he paced the corridors, he’d banged the door to get out and kept wandering into peoples room. These are surely normal symptoms for someone with Alzheimer’s. He’s never ever shown any aggression at home or in any of the day groups he’s attended right up to when he went into care, so we were so shocked and upset when we heard he’d hit a carer. We’ve not had an account of what actually happened with the incident. Should we ask for one?

We are self funding and are now having to find an urgent placement for him with social services. The care home we’re going to discharge him on Monday when his respite stay was ending to come back home to mum. Social services intervened and said he couldn’t go home and they reluctantly have agreed to keep him until we find somewhere else.

Is there anything we can do to help in the meantime? My mum is crying every day and barely functioning. She can’t take dad home but we feel we don’t want to leave him somewhere that has said they can’t look after him.

It feels like a hopeless situation. My dad is lovely and has behaved with such dignity throughout this awful illness. The home has made us feel like he’s a problem and my mum has had no respite.

I'm sorry this is so hard.

I think that is totally normal behaviour, but it's also distressing for other residents.

Is there an option to move him to a different care home that is better equipped to handle these behaviours?

So you have asked social services to find an alternative home as a self funder? And he can stay at current home for time being? I think that's the best that can be done to be honest I appreciate it's really difficult for you all. Hopefully in a few weeks he will be settled at the new home and thinks will feel betterxx

Thanks, yes we’ve got to find somewhere for him and social services are helping with that. We think we will have to travel far for that.

Sorry you are going through this. When a person with dementia is moved from their known surroundings this can often trigger a change in behaviour. You need to find a specialist dementia care home for him where staff are trained to understand and manage dementia. An ordinary Care home won’t be able to provide the level of care required. Check on the CQC website to see which dementia homes are in your area and read the latest inspection to check their ratings and how good they are.

I was in a similar situation with my Mum, after 2 years the care home felt they could no longer meet her needs and that she was being disruptive to other patients.

I sourced another home that catered for more advanced dementia and they came out and did a review but decided that she was not yet at that level.

i was told by social work to keep trying other places but it was in early 2020 and then the pandemic hit so no moves were possible. My Mum remained where she was until she passed away in late 2021.

Your Dads behaviour may settle down as a urine infection can cause distress in people with mild dementia making then appear a lot worse than they actually are till the antibiotics kick in.

They won’t discharge your Dad though with nowhere to go, that was my concern, but social work assured me it wouldn’t be the case.

Sending you my best wishes and hope there’s a resolution as know exactly what you are going through X

Try not to worry, keep asking SS, the care home will be putting pressure on them too. SS has a duty to find him somewhere even if you are self funding. Keep looking but don't panic. It's quite common and his behaviour might improve. He is still safer there than at home. Some care homes can get a bit ratty in these situations which is unfair on the family. In the past as a social worker I got additional temporary funding to pay for an extra care home agency staff member in this situation, but current funding cuts makes this unlikely. Also look into CHC funding if his behaviour continues.

Thank you so much for replying. It is a specialist care home, he’s on an emi ward. We were very clear about his needs when he went in.
Im sure we will find something soon.

Social services are doing an urgent assessment early next week and the current home have agreed (reluctantly we feel) to keep him u til they do. They’re also sorting the chc funding. Since posting we’ve had a good conversation with the social worker and they’ve been so helpful and reassuring.

Dads lived in the same home as my mum for 40+ years, I just can’t comprehend that they can’t cope with him and don’t seem to have made allowances for this situation which is such a massive change for him.

They have said now that he lashed out when the carer was trying to take him out of his room for a bath - he didn’t want to go. He’d been there for just three days at this point and I have no doubt he felt scared and possibly unwell. He’s not been aggressive before or since.

Thank you so much. I’m sorry you’ve been through this too. I guess we’ve been naive and thought he’d settled quickly. We didn’t realise that my dad’s symptoms and behaviour were out of the ordinary for a person with advanced dementia.

Physically he’s fit and likes a lot of stimulation still, he’s just not getting that at the moment.

Change of environment often causes a deterioration. And if he also had UTI that would make things worse.
Nursing home is likely to be the next step. Glad you are looking into CHC. BEACON can help with legal advice on this for free ... Google beaconchc.

Thank you all for you advice.

He’s been more settled the past day or so. The care staff have said so too. No more lashing out. Thankfully it seems it was a one off. He finishes his abx tomorrow . He seems very heavily medicated with his lorazepam though and sad. Me, my mum, my husband and children all visited him today and we saw him brighten up when he saw his granddaughter especially - he even referred to her as her nickname. There’s just no company for him there. No one seems to talk to him. He likes to fidget and there are some stickle bricks he enjoys building with us.
He still can’t stay there which we feel so sad about and don’t really understand why, but have to accept it I guess.

It doesn't sound like it's the right place for him if he still enjoys activities etc and they don't have any. My Dad is in a home where there is something to do everyday,.sometimes two different things. He is not really well enough to take part in some of them but enjoys the music and church visitors.

Keep looking and hopefully the right home will come along.