Looking for advice on father's care home

[ladybird1986]

My father has Wernickes Korsokoff's encepathology. Essentially, he appears coherent and is able to maintain conversation rather well, however his short term memory is affected and he is unable to create new memories. He will often make up (confabulate) memories to fill the gaps that he has missing.

I haven't been overly impressed with the care home that dad is in but I was rather limited as to who would have him as he in only 55 and apparently his age has made him difficult to 'place'

Dad is happy where he is and is more settled than i have seen him in a long time so i don't really want to move him but a few issues have arisen in past months.

1) Dad appears unkempt when i visit. He isn't washing regularly and is often wearing the same clothes as previous visits

2) The staff have told me he is not eating meals regularly and will often complain to me that his meals are cold or not enough- whether this is true or not I don't know because they appear hot when i visit at meal times?? There is also an issue with tuck shop which probably doesn't help- mentioned below...


3) He is spending a lot of his personal allowance on their tuck shop (£80 this month and £60 last month).

4) His clothes are hidden under the chair in his room and he refuses to wear new clothes i have taken in and insists they are not his- even when i sew the names in.

I have spoken to the care home about these issues and they have said at the moment he still has capacity (at times) so they cannot help any further. They have said that they can't force him to wash or eat but can encourage him- which they say they have tried to no avail.

They have said the next step is a DOLS statement which will take away his liberties but they don't feel this will make any difference at this stage.

I don't really know what the care home are supposed to do in this situation but i do not feel his quality of life is as good as it should be. Dad's condition doesn't help.

I would appreciate any guidance. Sorry for the essay but i felt it important you all had the facts.

Regards

A Worried Daughter

 

[ladybird1986]

Is this normal?

Hi me again,

Worried that my essay has put people off!

Is this usual care in a home? I would be grateful if someone could advise xx

 

[Beate]

Sorry that no one has replied yet. I think we might need a bit more info.

You say they told you your Dad still has capacity. Who has assessed this and do you agree with it? Because if he does, indeed no one can force him to wash or change clothes if he doesn't want to, and he's free to spend as much of his own money as he wants, however unwise this might be.

A good care home should have strategies to get people to cooperate, on the other hand some people with dementia are extremely stubborn. Have you ever seen them in action when they try to convince him of something? Do you think the care home is otherwise a good place? You say your Dad is happy and settled, which counts for a lot. Obviously, not eating isn't great but I would say how often he washes or changes clothes are, in the scheme of things, not that important anymore, unless he is incontinent, where it's important to wash someone to prevent skin conditions.

A DOLS only comes into play when someone is deemed not to have capacity anymore. An assessment of that is part of the authorisation. I am at a loss to understand why the care home is not applying for it though. Most care homes do it automatically to be on the safe side, and if better care for your father in terms of washing and eating etc would mean depriving his liberty of choice, then they really ought to apply for it.
http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1327

 

[Shedrech]

Hi ladybird1986 and welcome to TP
I've held off answering as I know nothing about Wernickes Korsokoff's encepathology and how it affects a person.
But dad is in a care home and on the dementia floor. Somehow the carers make sure that the residents are clean and tidy - I've even commented with other relatives how smart everyone looks. I am often there at meal times so know that they monitor what is eaten and drunk and encourage each individual to eat as much as s/he is able.
That isn't to say that dad has a shower every day and that he doesn't manage to put on the clothes from yesterday once in a while when he dresses himself or has said he doesn't need help. And on occasion a resident hasn't eaten a meal - there can be lots of acceptable reasons for a one-off - but then I know the missed meal is noted and the staff don't let it continue. They have their ways of helping and encouraging - no need to 'force' him (how could they anyway?).
So I would be concerned as you are if he were unkempt and not eating the main meals and the staff weren't able to coax him around.
There is no tuck shop in dad's home, and it seems odd to me that they have so much stock that he can spend so much BUT at least he is eating something - maybe they could offer him those types of snacks at mealtimes just to get him to eat in the dining room and offer the main meal too to 'wean him off' the snacks- or does he need to have his meal in his room away from distractions?
If he is happy and more settled than he had been maybe you need to go with the flow for a while and see how the staff help him into the routines of the home. Keep chatting with them to build up relationships which will help support your father. It's a learning time for everyone.

 

[teahound]

Hi me again,

Worried that my essay has put people off!

Is this usual care in a home? I would be grateful if someone could advise xx

Hi Ladybird,

I'm not sure if I can help but wanted to say that sounds hard.

My mum who has Alzheimer's / mixed dementia had issues with personal care in her carehome and initially the staff said she says no to a shower and we can't force her. She was smelly and unkempt.

I called the Alzheimer's Society helpline and the person I spoke to was very helpful.

I ended up meeting with the manager, my husband also came along for support. I said this behaviour is not unusual for someone with dementia. I asked about the training they gave staff as they had a dementia speciality on their listing and this should be something they could cope with. Unfortunately I think until I reminded them of their duty of care and showed I would take it further if I had to they didn't encourage as much as they needed to.

They mentioned DOLS I said I'd be fine with this and thought it would be a good idea if that's what they needed to do, but they ended up sorting things out without this.

I also wrote a follow up letter sumarising the meeting and what had been agreed on how things would move forward. I followed up for a while with weekly checks of her care plan until I felt that things were going well enough not too.

I washed mum the first time while they watched. I sang to mum as I washed her as that relaxes her and she sings along and engages with that. Then it worked when they tried coaxing at different times of the day, every day until she was washed. They also tried with staff mum felt more relaxed around.

I haven't had experience of the other issues you mention but wanted to wish you luck and hopefully things will change for your dad.

Best wishes,

Teahound xx

 

[99purdy]

Hi Ladybird, I have had exactly the same problem. Dad, who has beautiful clothes, refuses to change, sometimes won't shower or shave. The NH have to tread very carefully as he can be very violent. This has been an eye opener as I have never seen him behaving, or anybody for that matter, in such an appalling manner. There have been many very upsetting scenes. I have been devastated by his illness and felt as though I have done nothing but apologise to the NH staff and hospital staff on his behalf. Dad has no capacity but how do you get a physically strong man, who through this awful illness, can be so violent and unmanageable, to shave, shower, dress accordingly and have basic social skills? This imposter, namely Mr Lewy Body, has changed Dad beyond recognition. The NH are very experienced dealing with challenging behaviour. I have had to really take a step back with regards to some hygiene issues. It upset me so much and made me ill. I now have to accept that when I visit if Dad is happy then I am happy. I am also realistic as to what the NH can actually do. If Dad was more compliant then I would see it as more neglectful on behalf of the NH. However this is not the case at all the NH carers are doing a fantastic job in very trying circumstances. I know every case is different and should be treated as such. I just wanted you to know that I do understand how you feel, for my own sanity, I had to let certain things go. Dad is happy, eats well, the staff care for him and he is safe. X

 

[Babymare01]

Hello there. My mother was a very clean tidy loving lady before this evil illness took her. Now the CH struggle to get her showered or to change her clothes. The CH mum is in is lovely and very caring. They are very open with the "problems" they have with mum and she can get quite nasty ( I have experienced this to) when they try to shower her but they encourage her every day and always tell me with joy when they have managed it( I can always tell to lol). This is the same with her eating to. Yes showering and personal care is important but more important to me is that her carers respect her dignity and genuinely care and love my mum. The fact they are quite open and discuss if they have managed to shower her, what she has eaten, how she has been every day when I go in is great.
It is so hard to see my mum in same clothes and knowing she hasn't showered etc but I also take comfort in my mum is not being "forced". I also understand that she can be violent and her carers have to deal with this. And they genuinely love her and that's worth everything Its such an evil disease

 

[ladybird1986]

A big thank you

As the title says, a big thank you to all of you who took the time to respond. I was able to visit him with a renewed sense of what was important and he is happy there which is the main thing. As for his food, i am going to monitor it to make sure it doesn't become a bigger problem. After talking to the staff rather than the manager (who initially spoke to me about it) it seems he is generally eating but there are times when his stubborness can get in the way.

It is really heard to see a once well groomed and compliant man ve so different but I suppose that is just the illness and the way things will go.

Thank you again