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Dementia and Alzheimer's

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Advice please

18 replies

Melabells · 02/07/2021 09:13

Dads Alzheimer's is progressing unfortunately and we are now at the stage where we need carers to come in mornings and evenings to get him up and about with breakfast and tablets and down to bed as he has issues with sun downing and thinks night isn't real and gets really upset and frustrated and can sometimes pace all night long. My question is I am hoping that the carers coming twice a day will help him have more " structure " so that he continues to manage in his sheltered housing. However when do we need to start thinking about nursing homes? He is only 65 but his nurse has said it's something to start talking about for the future. Will there be signs or things that happen that would mean a nursing home is better for him? What helped you make the decision? My sister and I both have full medical and financial poa now which hopefully will help in the process but dad is adamant he will never go into a home. Any advice greatly appreciated.

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BunnyRuddington · 02/07/2021 17:44

I'm sorry that your DF has Dementia and so young too. I'm also sorry that he's saying that he'll never go into a home, especially as that's not very realistic given his diagnosis.

If he's up and about at night, is he quite? Does he go out?

If he is going out, or there's even a possibility of him leaving his flat, I'd fill in a Herbert Protocol. My DM started wondering outside at night shortly after the sun downing started.

Has he had a Care Needs assessment? This should help to decide if carers twice a day will be enough or if 24 hour care is needed. You'll probably need to be there for the assessment.

florentina1 · 02/07/2021 20:27

In my experience the Care Home usually happens after some crisis. LAs will always ask the person what they want and only admit if there is a danger to themselves others.

This can be a fall followed by a hospital admission or if the person is found lost and wandering on more than occasion. It is a hard decision for you too.

cptartapp · 02/07/2021 20:42

If you wait for someone with dementia to agree to going into care, you will wait forever. Remember, today is the best he will ever be and there will come a point where needs outweigh wants. For his own safety.
Things usually happen quicker if you step back. Whilst propping up an unsafe situation ss will leave you to it.
Not a lot to be gained sometimes by prolonging the inevitable. Start looking now to get a feel for places and even put his name down or consider respite.
Night time wandering is often a tipping point.

Melabells · 02/07/2021 22:31

@BunnyRuddington thanks for the reply. He has his needs assessment on Monday with me and social work( been waiting 2.5 months) the pacing is only in his flat at the moment he doesn't often leave his flat as he is very scared to get lost in building/ community. Dads CPN has given us the paper work for the Herbert protocol which is good. Just been on phone to him for 45 mins tonight because he was confused about was it night and would he know when to wake up. It's just soul destroying

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Melabells · 02/07/2021 22:35

@cptartapp thanks for the response. Yes we have started looking at some local places. And some out of town aswell as they seem more affordable? Dad has a big fear of getting lost so very rarely leaves his flat unless with me or my sister , do you think he may still end up wandering? Have you had a loved one go through this ? This is all so new I don't know what to expect to happen. Meeting with his social worker on Monday finally so we will be telling them he needs a carer at least twice a day . And then see what they say 😐

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BunnyRuddington · 03/07/2021 06:42

Dad has a big fear of getting lost so very rarely leaves his flat unless with me or my sister , do you think he may still end up wandering?

Unfortunately my DMIL started wandering first in the day and then very, very quickly it progressed to wandering at night. Luckily we had a device that tracked her so we were able to find her pretty quickly.

cptartapp · 03/07/2021 08:27

No but I was a district nurse for many years and saw the toll this took on family. Be very careful of committing much of your input to ss. Many try to guilt trip you into doing more and more. If he isn't self funding they will try to keep him at home as long as possible as it's cheaper for them. This will often rely on you to pick up the pieces.
You say he's confused, doesn't know night from day, doesn't leave his flat. Kindly, maybe he already needs the 24 hour reassurance of care on tap, not to mention the company and stimulation.
People often 'manage' with carers calling although IME they're so busy they can be flying visits. It's when there's no-one there that's the problem. And even up to four carers visits a day which is usually the max ss will fund, leaves an awful lot of alone hours for a confused person.

Melabells · 03/07/2021 08:50

@cptartapp thanks. That's a great input , from what I've been reading I have seen the kind of battle we will have with SS I will be completely honest I have young three kids and work full time I don't have the mental space left to cope with the care levels dad needs now

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kookiekook · 03/07/2021 09:17

Not everything with social services will be a battle.

It depends which area he is in. Some are really quick and responsive (like the one I work in) and others less so.

They have to assess him 'carer blind' so if there are things you are doing for him they should have that as a need and then if you want to continue doing it then it becomes a met need, if you are no longer unable to, then it's an unmet need that they then need to meet.

Have you any idea of his finances as that is often one of the first things we will ask - because if someone is self-funding the options available to them change as they can go to agencies that we don't contract with to meet their needs and in the case of going into a home, can pick which one they want rather than social services finding it for them. Try to find this out before the assessment if you don't know how much money(ish) he has in the bank.

Being a self-funder doesn't mean we won't assess and support to find the care if needed.

Sometimes though, people have less than £23k savings but income high enough to be assessed as having to contribute to the care based on their income. This is often a barrier as service users will perceive that they can't afford to pay. If they have mental capacity around this then that is their right and they decline the care. Be prepared for this as it happens a lot. It can take a lot of reasoning with the person to get them to take the help.

I'm not trying to be negative - just trying to point out some barriers. Often families will not be at the assessment and contact us later ranting about us 'doing nothing' etc but the fact is their loved one declined the care/won't pay if needed and we can't just override wishes of people who have mental capacity!!

BunnyRuddington · 04/07/2021 08:51

Be very careful of committing much of your input to ss.

I think it's reasonable to have a good think about how much you're willing to do. Also bear in mind that any input will be 365 days a years, every year even if you're ill.

MereDintofPandiculation · 04/07/2021 09:41

I take it he already has a dementia clock which shows whether it’s night or day?

Melabells · 04/07/2021 13:39

@MereDintofPandiculation yes it's a dementia clock. It was working very well but now he seems to have taken a dislike to it and is convinced that is sick ( not working) and doesn't believe it's telling him the truth and making him not know what time it really is.

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BunnyRuddington · 04/07/2021 13:43

I think from what you're saying on here OP, I'm agreeing with cptartapp that is sounds as if he's already in need of 24 hour care, even if that's going to be hard to accept Thanks

wandawaves · 04/07/2021 14:13

Residents often come to us after-

  • a fall with injury
  • wandering and getting lost in the community or wandering in the night/on the road
  • paranoia and confronting neighbours with accusations
  • self neglect- not eating/losing weight, not showering/skin infections, poor housekeeping that impacts on their health, risky behaviours that cause injury for eg burns, fire etc
  • aggression
  • family stress from needing to provide more and more care.

If he's sundowning, disoriented and paranoid, sounds like he's pretty much at the point of needing residential care.

Purplecatshopaholic · 04/07/2021 14:28

My mum got like this. She then started wandering off in the night and getting lost. That was the crunch point for us and we put her in care after that. It was the only safe option by then. She quickly forgot she had always said she wouldn’t go into a Home.

MereDintofPandiculation · 04/07/2021 18:57

[quote Melabells]@MereDintofPandiculation yes it's a dementia clock. It was working very well but now he seems to have taken a dislike to it and is convinced that is sick ( not working) and doesn't believe it's telling him the truth and making him not know what time it really is.[/quote]
Oh dear! I haven't the faintest what you can do in that situation!

BunnyRuddington · 05/07/2021 15:46

Has he had the assessment yet @Melabells? Do you know what's been agreed?

Melabells · 13/07/2021 08:24

@BunnyRuddington his assessment with social work is on Monday. We have been waiting three months for it 😐 my main concern is he is able to put this front on that makes him seem capable( basically he lies through his teeth to say nothing is wrong) she said she would call me day before so I can voice my concerns. I can't wait to hear what they think.

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