When is the right time for a nursing home?

[Alex54]

I have often used phrases like:

• When I can provide better care than a care home.
• If the happier times outweigh the difficult times.
• When I no longer can carry on.

Problem is I don't think I ever agreed to a nursing home for my wife no matter how hard it gets!

 

[karaokePete]

I don’t have experience of this decision, however, in the hope that it helps you I’ve put a link to a Society Factsheet below. Just click the 2nd line

https://www.alzheimers.org.uk/get-support/help-dementia-care/care-homes-who-decides-when
https://www.alzheimers.org.uk/media/1016

 

[Sirena]

I don't know if you have started the process at all. Could you start identifying a couple of care homes you think would be right, go in and talk to the manager, and ask if they will accept your PWD for a fortnight's respite? That would give you an idea of how it might work out (although of course it is likely to take longer than a fortnight for them to settle in fully). Some care homes also allow you to go in for coffee so you could go in together a few times and check it out. From initially realising my mother needed a care home it took me about four months to actually arrange it. It was a different situation because she lived alone and needed 24/7 supervision, so there wasn't really an option, but it still took me a while to get my head round the idea.

 

[canary]

TBH, if you are asking the question then I feel you should at least be looking at places.
Many care homes have waiting lists, so if you leave it until you are on your knees then there may not be any option about where she goes.

 

[Shedrech]

hi @Alex54
I agree, if you are asking the question, it's time at least to look around and see what is available so should the time come, you aren't at the beginning of the process in the middle of a crisis
I did find that visiting some care homes gave me a better idea of the questions to ask and what I was really looking for ... I looked around maybe a year before dad moved; it was too soon then, but I was glad I'd got a clearer picture in mind when the time came
and some people do remain living at home, there's no one way that has to be followed

hi @Sarahdun
I wonder whether contacting Admiral Nurses might help
https://www.dementiauk.org/get-support/admiral-nursing/
the local nurse has been very supportive to a friend

 

[Rosettastone57]

Struggling with that decision for my OH now. I have Read the fact sheet dozens of times but ideally would have a person to talk to who understands early onset Alzheimer’s . Care homes are clearly businesses. I would like a ‘third party’ to talk to. GP’s overworked and not very clued up on dementia. No SS because self-funding. ..... friends and family suggest it is time but still .... so many issues from the emotional to the financial, let alone what is in his or my best interest.

If you're thinking about care homes,then best to start looking around now. There was no "third person " to talk to when my mother-in-law went into care. My husband and I just knew the time had come. She was living on her own and could no longer remember where the rooms were in her own home. As we were thinking about homes,she had to go into hospital in an emergency so we suddenly had to sort out something quickly. In an ideal world we would have arranged it earlier. She was self funding so we just sorted it out ourselves. She needed 24/7 supervision and we just couldn't provide it

 

[Guzelle]

My husband is 85 and I have to go into hospital and I need respite for him. But he doesn’t think he needs it and says he can stay on his own or stay with my sister or daughter. My daughter has just had a baby and I told him this and he said the baby comes before him then. He can’t do much for himself. He is mobile and can walk well but can’t remember what he was doing a few hours ago. He wouldn’t take his tablets, cannot use a phone, doesn’t know what day or time it is. My sister couldn’t cope with him. He would be confused and not remember where he is.

I just hope he will be happy to go when the time comes. Has anyone else been through this.

 

[Guzelle]

It is only residential at the moment. He is getting more unstable with is walking. But he can still manage to shower with help to turn it on and off. He needs help sorting the right clothes to put on. He can’t remember what he did this morning or who relatives are.

 

[Antipat]

Struggling with that decision for my OH now. I have Read the fact sheet dozens of times but ideally would have a person to talk to who understands early onset Alzheimer’s . Care homes are clearly businesses. I would like a ‘third party’ to talk to. GP’s overworked and not very clued up on dementia. No SS because self-funding. ..... friends and family suggest it is time but still .... so many issues from the emotional to the financial, let alone what is in his or my best interest.

I am taking my husband to a care home tomorrow... I am torn up inside. I am so looking forward to a rest , but at the same time I could sit down and cry at the drop of a hat... I cooked his favorite meal tonight . planted a red flower in the planter that he loves... put up a mail box that he also loves. Just trying to make this last weekend good for him. But man it is hard

 

[Guzelle]

Hope it will go ok.

 

[Dosey]

I have been providing 24/7 support to my husband for years now because he is totally unable to look after himself - and he is still only in his 60s - my dilemma is when/whether I should stop - when does it get 'too much' for me and not 'too unkind' for him? I didn't find the decision so hard for older relatives with dementia in their 80s who I did less caring for (and care homes are mostly geared to their needs anyway). With a younger person/spouse it is a whole different kettle of fish, I am afraid.

But yes you are right - wishing for advice and getting it are two very different things. Thank you for your realism.

ALso - have just found a local charity that does have an Admiral Nurse - so there is hope.

Hi Sarahdun
It is a difficult decision when your OH is young.
My OH was diagnosed with early onset Alzheimer's at 55 , he is now recently turned 62.
I cared for him for 7 years through this horrible disease, watching him slowly deteriorate.
I eventually agreed to him moving to a care home on 2nd April this year ( 8 weeks ago today).
The 6 months prior to this he refused to take his clothes off sleeping in them, refusing to shower or shave, became frightened of the toilet urinating on the floors all over the house. Holding on to his poo for over a week despite giving him medication for this. Wandering all night up and down the stairs calling out my name despite me being in bed beside him. Constantly returning him to bed trying to get him to lie down to no avail. Among all the other symptoms of advanced dementia. He was unaware of his surroundings and didn't recognise any of our 4 sons.
Professionals had been recommending Care Home for over 2 years but I had refused.
An assessment of needs from SS, after application for guardianship, where mental health officer, GP and Dementia Clinic assessments, decision to look at suitable placement was sought, which myself and children agreed to.
There is not a lot of places for under 65 available. I did think it would take over 6 months to find a placement. I was very upset when a place was found within 3 weeks, and wasn't sure what to do.
I did take the placement. OH was oblivious to what was happening. I cried for 2 weeks all the time. OH settled well, he is happy to see me when I visit but gets upset when I leave I have to skip away.
I miss him terribly, but I know he is getting looked after well, I visit and take him out. 24/7 caring for him was to much and he wouldn't let children be with him to give me a break, so sad as my sons and husband were best friends, went to football, played football and golf every week..
Sorry this is so long, but hope it will help you with your journey.
Rose x

 

[maryjoan]

We went to visit a Nursing home this week - as my Oh has dementia and medical issues. The social worker said we needed to go, as I desperately need respite.
We went.
It was not the right place for him - and they are all the same round here.
We looked in on the sitting room, where many of the residents were slumped in their chairs asleep, or half asleep whilst a TV chatted away on the wall.

I have seen late stage dementia many times, and I know this is not the stage my OH is at, and it would be cruel to put him with people who are further on this journey than he is.

But I will keep this Nursing Home in mind, as it, and the staff were lovely.

So, I decided I have to arrange my own respite. I have booked 4 x 4 day holidays over the next 7 months. I then emailed OH's family - group email - and explained what I have done. The daughter ( whom previously has shown very little interest or concern for her Dad) immediately offered to come down in August and October.......

This may be our way forward at this stage of his illness......

 

[nestle]

My Partner too in his early 60 ' s so I feel I can relate to what you are saying. I know I too will feel very to topsy turvey when the time comes for him to move . I hope things settle for you both , I'm told it does but sometimes it's hard to imagine .

 

[Helly68]

Sarahdun - in the early stages of transferring to a care home you go through every emotion - I know I did.
There are some benefits to going in the earlier (age or function) stages of dementia in that my Mum was still a bit mobile and enjoyed the activities and trips out when she first arrived. She can't do that now, but I do think it helped her to settle in.
I think the fact that you now know he is safe, has answered the question about whether you are doing the right thing.
I wish you all the best going forward.

 

[Sirena]

I agree about the mixed emotions. A care home is such a huge change and while you are relieved there are a lot of other conflicting emotions there too.

I initially thought that everyone in the CH had more advanced dementia than my mother - they were all 'sitting around' and not much appeared to be happening because it was tea & cake time.

But within a few weeks of her being there I realised there were residents from mid-stage to end-stage, and my mother wasn't really out of place there. And there are a fair amount of activities - crafts every morning, music afternoons, outings. There are certainly some times when not much is going on but it just depends on when you visit. My mother is hardly ever just sitting, she potters around constantly but she seems content.

 

[Helly68]

Also, in addition to what you are saying, Sirena, my mother had got to the point even at home, that she wasn't doing very much - always off to bed at odd times, sleeping in a chair.........

 

[Sirena]

Same here @Helly68 - my mother could no longer entertain herself at all. So she was fine when the carers were there, but when she was on her own (18 hours a day) she either watched TV or put herself at risk by wandering off out of her flat - as soon as she was a few steps from the door, she was lost. At the CH she has constant company so if she wants to get up at antisocial hours and wander around there is someone there to reassure her.

Hope you had a good snooze, Sarah!

 

[Helly68]

I think it is a balance. Some PWD do lose function in care homes where there isn't much going on and the tendency is to sit in a chair. However, I think this might also happen at home (even with carers) and it is an individual choice when to make any changes, bearing in mind the sad inevitable decline whatever the setting.
It also has to be said that dementia was destroying my parents relationship with each other and I think this was a motivator for us to move to a CH but not something that gets talked about much. And we did try to make it work....
Mummy was much happier in an environment where less was expected of her and there was a comforting routine and a variety of people - rather than two people driving each other up the wall (unintentionally).