Respite while waiting for diagnosis?

[anotherstar]

Hi everyone,
I’ve been reading the threads here for a while and it’s brought me a lot of comfort during a very challenging time; thank you all for sharing your experiences, expertise, and kindness; it really helps.
My Dad is 64 and has an almost textbook case of Dementia with Lewy Bodies. It started with REM sleep disorder a few years ago, then a slight tremor and concentration problems shortly afterwards. More symptoms have followed since then, and in the past five months he’s developed hallucinations, delusions, and paranoia. He has also lashed out a few times. The most recent symptoms are the most difficult to deal with, and in the last two weeks he has told us (my Mum and I) over and over he doesn’t trust us, we’re after his money, there are people in the house tricking him, and so on. We’re constantly on edge, frightened of making Dad upset.
Due to a mix-up and mismanagement of Dad’s referral by our GP, we are currently waiting to go to the memory clinic for formal diagnosis.
Mum and I are both experiencing mental health difficulties because of the whole situation, and we’re at breaking point. We feel a short respite would be good for all of us; it’ll allow Dad to be taken care of in an environment that’s geared towards his condition, and the break will give Mum and I a chance to breathe, rest, and get ready for the next stages of Dad’s illness.
Does anyone know if it’s possible to access respite care without a formal diagnosis, especially as my Dad is under 65? We’ll be self-funding and are keen to arrange this as soon as possible.
Thank you all in advance!

 

[Sue741215]

I think if you are paying yourself and are talking about a place in a care home it is just a case of finding one that has a vacancy for short term care. If this is the case I would just look on CQC website for places that accept those with dementia - check the rating and just approach them direct. I imagine it won't be easy due to staffing difficulties but if you are flexible about timing - eg taking a slot when it becomes available you may be lucky. I hope it works out for you and you and your mum get the respite you need. You don't seem to be worried about him accepting that he should go but it may be helpful to lie a little and say his doctor wants him to be monitored for a week or similar rather than that you need the respite.

 

[canary]

Hello @anotherstar . Yes, you can get respite without a diagnosis, but its not easy.

My OH does not have a diagnosis (long story) and I spent a long time trying to find somewhere that would accept him. Every time I phoned a home the first thing I was asked is "whats his diagnosis?" and then when I said that we did not have a diagnosis as such, the person at the other end would make this noise of sucking air through their teeth and say "we really do need a diagnosis......" and that was that.

I searched on the internet and got suggestions from friends and SS. OH is under 65 too, so I know that that reduces the choices too. We did eventually find somewhere, but they accepted him more on the physical symptoms, but I dont think this would work in your case. I think you are going to have to stress that your GP thinks that he has dementia, but you are waiting for the memory clinic to give a more detailed diagnosis. Do make sure that you tell them about all his problems. You may have to consider places that have a lower CQC rating. The place we found was rated "requires improvement", but I looked into it in more detail and the manager had been replaced since then and they were the only plce that would accept him, so I went and looked at it. It had a lovely welcoming atmosphere and there was no nasty atmosphere between staff, so I crossed my fingers and booked him in. It worked extremely well and I will use them again.

Good luck xxx

 

[ianc2002]

Hello @anotherstar . Yes, you can get respite without a diagnosis, but its not easy.

My OH does not have a diagnosis (long story) and I spent a long time trying to find somewhere that would accept him. Every time I phoned a home the first thing I was asked is "whats his diagnosis?" and then when I said that we did not have a diagnosis as such, the person at the other end would make this noise of sucking air through their teeth and say "we really do need a diagnosis......" and that was that.

I searched on the internet and got suggestions from friends and SS. OH is under 65 too, so I know that that reduces the choices too. We did eventually find somewhere, but they accepted him more on the physical symptoms, but I dont think this would work in your case. I think you are going to have to stress that your GP thinks that he has dementia, but you are waiting for the memory clinic to give a more detailed diagnosis. Do make sure that you tell them about all his problems. You may have to consider places that have a lower CQC rating. The place we found was rated "requires improvement", but I looked into it in more detail and the manager had been replaced since then and they were the only plce that would accept him, so I went and looked at it. It had a lovely welcoming atmosphere and there was no nasty atmosphere between staff, so I crossed my fingers and booked him in. It worked extremely well and I will use them again.

Good luck xxx

Canary, did you ever get a diagnosis?

My wife was finally diagnosed in 2020 at 59 after a three year battle with the NHS.

CT Scan, Spect Scan inconclusive, Addenbrooks test, inconclusive, but I still knew there was an issue, doctor and wife's family thought I was a nutter.

Six sessions with a specilist dementia psychologist lasting two to four hours at as time and the result, Mixed Dementia, Vascular and an Alzheimer's component, almost four years on and she's late stage 5, early stages 6, virtually non-verbal, unless she's angry with me, then she's as clear as a bell, but it doesn't last.

It has taken four months after a spell (25days) in hospital following three UTI's to get her out of her bed as she can no longer walk, to get a hoist, to get a specialist chair and to get a ramp. It's almost as if they wait to see if she passes away way to save them money and effort.

Oh, family have apologised, thanking me for pushing for a diagnosis.

 

[canary]

Canary, did you ever get a diagnosis?

My wife was finally diagnosed in 2020 at 59 after a three year battle with the NHS.

Im glad you managed to get a diagnosis
Im afraid we have not and we arnt going to get one either (long story). All scans have been negative and his GP thinks Im a nutter too.

We have used that nursing home several times since I posted and the manager has told me that when OH gets to the stage of needing permanent residential care, they would be very happy to have him (even without a diagnosis)

 

[Tricot]

his GP thinks Im a nutter too.

So sorry you've had to go through this. It's so wrong when our opinions aren't given due consideration. Who knows better than familu and close friends.