Have you ever had your relative reassessed? Is this an easy thing to get done?

[LostInLondon]

There doesn't seem to be a dedicated 'relative in a care home' forum so I am posting here (hope you don't mind).

I have posted before about what it's like to have a relative who is often lucid but my dad, who is in a care home, is very alert. He calls us every day and never forgets who we are. The only time he forgot was when he went to hospital in January due to serious confusion as the result of a very low and irregular heart rate (he did not take his heart tablets for 2 months). He keeps telling us he is sick of the food in the care home (they're unhealthy - they give him pies and bacon sandwiches and he has high cholesterol). As a result he is still underweight and doesn't eat. He was annoyed today because he said he can't talk to anyone else there (residents) as they are like zombies. I am concerned he is not able to talk to people who are as 'alert' as he is and so has to shut himself off in his room. He isn't getting nay mental stimulation from other people. I know he constantly packs his bags to leave each evening which concerns me. I know that to be a sign of dementia, though. Still, I want him reassessed.

Is there any way I can get a doctor independent of the care home to look at him? How do we go about doing this? The care home manager seems very uninterested and just keeps saying 'he has dementia'. She is also very unhelpful on most things. She never told us he has a new doctor for example. She never told us it was not okay to bring him food and got annoyed after he took some food to his room and made a mess (initially she said it was fine). Anyway that's sort of a separate matter but I want to call in an independent doctor or have my father go to a facility outside of the care home without the manager there to be monitored for a few weeks (and I will pay for that).

 

[nitram]

Do you have H&W LPA?

If so you have a right to know all about his care, you can ask in advance - email or letter- to be told of all changes,
You can also contact the GP and discuss his problems and expect to be treated as if the GP was talking to him.

 

[LostInLondon]

No I don't have any LPA as he lacks capacity. I'm applying for deputyship now.
If the care home manager is willing to tell us his GP name and address I will call the GP. Otherwise am I able to have him seen privately away from the care home?

 

[thistlejak]

Unfortunately the Deputyship will not give you 'power' over health and wellbeing only financial matters. You might want to contact Social Services if you feel that his needs are not being met. They should be able to organise a 'Best Interests' meeting with yourselves, a doctor and maybe the care home to get things back on track or look to move him somewhere more suitable.
If you get the GP details you can put your concerns to them in a letter , as they won't speak to you without POA, that should prompt a review of some sorts.
Hope this helps.

 

[nitram]

Without H&W LPA,or a consent form signed by him when he had capacity, you do not have any right to discuss his health with any clinician .
A GP should listen to your views and act accordingly as they have a duty of care to hm.

 

[Susan11]

I didn't have POA for health and welfare for either of my parents but I never found there was a problem discussing their health with their GP , the hospital drs or the Care home manager. They were happy to ring me and update me whenever it was necessary.

 

[canary]

Im not quite sure what you want the doctor to re-assess.
Do you doubt that he has dementia and want a new assessment for that? Or is t that you think he is in the wrong care home and want a new assessment about where he should be?

BTW, it is usual practise for the GP to change when someone moves into a care home. It makes it quicker and easier for the residents to see the doctor if they all have the same person who will do rounds there on a regular basis.

 

[Rosettastone57]

I'm struggling to understand why you want an independent doctor to reassess. If this is about an unsuitable care home placement then it's over to social services. You can appoint an independent social worker as well to assess the suitability of the placement. There's no automatic requirement to tell family that the care home are using another GP .

 

[LostInLondon]

There's no automatic requirement to tell family that the care home are using another GP .

I mean it's basic decency. If something changes in the life of your loved one, I don't quite understand why they wouldn't say. If it was me, I would update the family. I communicate as part of my job so I find it very difficult to deal with people not updating any interested parties.

I'm struggling to understand why you want an independent doctor to reassess.

Struggle away!

Im not quite sure what you want the doctor to re-assess.
Do you doubt that he has dementia and want a new assessment for that?

Yes I doubt he has dementia. He has improved and is improving which seems very odd to me. He never forgets who we are, he is very lucid (consistently so). He had one difficult moment when he tried to leave but that was it. He remembers everything about home - how many radios he has, how many watches he has. Everything. He wants to go back to studying psychology and he is reading the psychology books I bought him. The care home manager blindly said 'he can't use that phone he has dementia, they need phones with the buttons outside'. Well, he's using the phone pretty well. He calls us a lot. He asks how I am. He tells me to not tell the neighbours he's in there (back to being secretive). He tells me what the government is up to. He gives me nutritional advice. He's annoyed with the nutritional value of the food in the care home. He's the only person in the care home making tea for himself and he is now going to cook his own meals in the care home because he wants to. He is in a home with other people who have dementia and he says 'they're like zombies, i'm not like that'. He's annoyed he cannot have a conversation with anyone other than the carers. He said he is going to talk to his doctor to ask why he is there because he doesn't belong there. I am fine to accept that he has Alzheimer's if he does but improvement seems like an odd thing to be happening for someone who was diagnosed as being in the late stages.

 

[AwayWithTheFairies]

What do you want to happen? Him to be out? Does he want out?

 

[LostInLondon]

If he doesn't have alzheimer's then he shouldn't be in a home. It's not about what I want as we never got on. It's just about what is morally right. I want them to review whether or not he actually has alzheimer's. He definitely doesn't want to be there but then surely that's every patient?

 

[canary]

Yes I doubt he has dementia. He has improved and is improving which seems very odd to me. He never forgets who we are, he is very lucid (consistently so). He had one difficult moment when he tried to leave but that was it. He remembers everything about home - how many radios he has, how many watches he has. Everything. He wants to go back to studying psychology and he is reading the psychology books I bought him. The care home manager blindly said 'he can't use that phone he has dementia, they need phones with the buttons outside'. Well, he's using the phone pretty well. He calls us a lot. He asks how I am. He tells me to not tell the neighbours he's in there (back to being secretive). He tells me what the government is up to. He gives me nutritional advice. He's annoyed with the nutritional value of the food in the care home. He's the only person in the care home making tea for himself and he is now going to cook his own meals in the care home because he wants to. He is in a home with other people who have dementia and he says 'they're like zombies, i'm not like that'. He's annoyed he cannot have a conversation with anyone other than the carers. He said he is going to talk to his doctor to ask why he is there because he doesn't belong there. I am fine to accept that he has Alzheimer's if he does but improvement seems like an odd thing to be happening for someone who was diagnosed as being in the late stages.

How was he diagnosed? Did he have a scan?

 

[AwayWithTheFairies]

Who has put him there? If he gets out, will he be able to live independently? If you never got on, why are you contemplating helping him escape?

 

[LostInLondon]

How was he diagnosed? Did he have a scan?

Yes he had a scan. I don't doubt that's what they thought he had at the time but now i'm puzzled by his progress. I just want him to be re-examined/re-assessed as this change seems odd to me. He may well still have something but viewing him as an outsider (in terms of having no medical experience), his memory is pretty fantastic which seems a little strange for Alzheimer's. I might be wrong. I just want to know for sure.

If he gets out, will he be able to live independently?

Well that's quite clearly why I want him to be reassessed. How would I know that? The doctor would know. My concern would be if they said he seems to not have it and he is let out and is difficult to live with, keeps trying to leave etc.

If you never got on, why are you contemplating helping him escape?

I don't understand this question at all. Would you leave someone in a care home knowing they shouldn't be there because you don't get on with them? Would you want to be left? It's morally the right thing to do. Not sure how I feel about the word 'escape' either. It's not Shawshank Redemption. It would need to be officially medically approved based on a second opinion or examination.

 

[Grannie G]

Hello @LostInLondon

I can understand why you might wish for a reassessment for your dad. Many people with dementia seem to rally once in residential care and from my own experience, my mother was admitted into residential care at a much earlier stage than my husband and at times it seemed it might have been too soon.

The reason my mother went into residential care is because she was at risk living alone. Could this be true of your dad?
My husband at the same stage had me with him 24/7 so was not at risk and was able to stay in his own home for longer.

You might be able to get a reassessment privately but without a LPA it is unlikely.

 

[Jaded'n'faded]

No I don't have any LPA as he lacks capacity. I'm applying for deputyship now.
If the care home manager is willing to tell us his GP name and address I will call the GP. Otherwise am I able to have him seen privately away from the care home?

If he lacks capacity, how can he not have dementia?

I think many of us have seen a parent at some stage and wondered if we got it all wrong or if they're getting better. Unfortunately with dementia that isn't possible.

You say he packs his bags every night which is fairly common, especially in the evenings. Could it be he's sundowning then and the time you speak to him is when he's far more on the ball?

Having said that, it does sound like his current care home isn't the most suitable place for him. The care home is obliged to tell you the name of his new GP and it might help you to talk to this person, always supposing he/she has actually met your father. However, GPs tend not to be involved in assessing people - it's usually someone from SS or adult mental health/OT who decide how much he's capable of and that doesn't really depend on the diagnosis - it's more needs based.

 

[Lawson58]

I mean it's basic decency. If something changes in the life of your loved one, I don't quite understand why they wouldn't say. If it was me, I would update the family. I communicate as part of my job so I find it very difficult to deal with people not updating any interested parties.


Struggle away!



Yes I doubt he has dementia. He has improved and is improving which seems very odd to me. He never forgets who we are, he is very lucid (consistently so). He had one difficult moment when he tried to leave but that was it. He remembers everything about home - how many radios he has, how many watches he has. Everything. He wants to go back to studying psychology and he is reading the psychology books I bought him. The care home manager blindly said 'he can't use that phone he has dementia, they need phones with the buttons outside'. Well, he's using the phone pretty well. He calls us a lot. He asks how I am. He tells me to not tell the neighbours he's in there (back to being secretive). He tells me what the government is up to. He gives me nutritional advice. He's annoyed with the nutritional value of the food in the care home. He's the only person in the care home making tea for himself and he is now going to cook his own meals in the care home because he wants to. He is in a home with other people who have dementia and he says 'they're like zombies, i'm not like that'. He's annoyed he cannot have a conversation with anyone other than the carers. He said he is going to talk to his doctor to ask why he is there because he doesn't belong there. I am fine to accept that he has Alzheimer's if he does but improvement seems like an odd thing to be happening for someone who was diagnosed as being in the late stages.

Actually a lot of what you say reminds me of my husband who was diagnosed seven years ago.

Initially, he was described as having 'atypical' Alzheimer's, then it became fronto variant, then non amnesiac' and now non classical which suggests to me that the medics don't really know what it is.

My husband cannot remember much of the first thirty years of his life and until the last few months his short term memory functioned quite well. He is still playing bridge several times a week. He's vegetarian and continues to cook his own meals though sometimes what he prepares can be a but weird.

He is able to look after his personal hygiene though lately I have to remind him that some of his clothes need to go in the wash.

He has not been able to drive safely and lost his licence shortly after his diagnosis. He has not been
able to use a mobile phone for years but regularly uses an ordinary phone and still uses a computer.
He is totally incapable of anything financial and often finds it hard to follow storylines on TV and misses important bits of news programs.

We went to live in the Caribbean seventeen years ago and prior to going we spent some time using CDs learning Spanish. Even now, he still puts on his Spanish because he wants to improve, but he is listening to the same program and hearing this over and over nearly drives me crazy.

Most people meeting him would say that he is just a frail old man but that is because he is trying to concentrate. At home, his speech can be difficult to understand and he rambles a lot.

He was assessed extensively in the first instance with neuropsychological testing, scans, discussions with an OT for me and his consultant. He found the testing very hard. He had follow up assessment done three years later and said that it was so hard that he never wanted to do it ever again.

I knew three years prior to his diagnosis that something was wrong and and a year before I suspected that it was dementia of some kind. He certainly doesn't present like most people with dementia but time is proving the diagnosis correct.

I don't know how or why your dad ended up in care or why he is deemed to lack capacity but obviously something happened to create that situation. If it could be arranged for him to have another assessment, it might at leas reassure you of the exact nature of his health.

 

[canary]

If hes had a scan then I very much doubt that he has been misdiagnosed - usually its the other way around, that people with dementia are missed and told they have depression, Mild Cognitive Impairment, or some other problem instead

Lots of people with dementia appear to improve when they move into a care home as they no longer have anxiety about trying to do things that they are no longer able to. You are not the first person on here who has thought that they didnt have dementia, or asked if dementia was something that you can recover from. The thing is, though, that you are not with them 24/7 and only have a snap-shot of what they are like. There is also the phenomenon (known on here as "Host mode" and I have also heard called "showtiming") where they can suppress the symptoms of dementia for short times and can appear almost normal. Mum moved into her care home after all sorts of problems - there was no doubt that she had dementia and I was pulling my hair out with worry. My brother and his wife went to visit her in the care home and afterwards told me that mum knew who they were, was perfectly lucid, seemed completely normal and he couldnt understand why she was there. I saw her afterwards and she told me that two men had come to see her, but she didnt know why or who they were, she was a bit worried about them and she wanted to go home to her parents (mum was 90 at the time!),

My OH is also in cognitive decline. He is able to do very little now, but talks as if he is doing everything and sounds very convincing. His memory seems fine - he knows where he is and what is going on and does not seem in the slightest bit confused. You have to look beyond what he says to see the truth. He went into hospital recently and told the staff there that he had no problems with mobility and was able to wash and dress himself. The staff were utterly convinced and were then very concerned when it became obvious that he couldnt walk unaided and wasnt able to wash and dress himself. In fact, he has mobility aids and carers in to help him wash and dress. He will look at the garden and comment that he must get on and do some more gardening, but the last time he went into the garden he pointed to a dandelion and asked me what flower it was. He spends most of his time sat on the sofa scrolling through his android tablet and reading books, but I know for a fact that he retains very little of what he reads.

What I am saying is that you are likely to be getting a very distorted picture of what he can do if you are relying on what your dad is telling you. The story about him going to be cooking his own meals soon sounds particularly strange as I have never heard of residents who are allowed to do this, even if they are able. Have you talked to the manager and asked what he is like when you are not there and what help he needs? I would certainly find out what his needs are before you start thinking of moving him.