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When to move to a care home?

ashtreex

Registered User
Dec 16, 2018
21
London
I would love some advice on my husband moving to a care home. This will not be possible for a good few weeks yet I know but I could plan.

He has advancing Alzheimer's. At present he doesn't need "personal care" beyond reminders. He still recognises me and he'll recognise our children. However, he is becoming more and more confused - struggles to make sense of (and hear!) the simplest sentence, eg I have to say, "I'm going upstairs to make the bed" 3 times for instance and probably explain which bed a few times as well. He used to settle down quite a lot of the time with books and papers (he was a top academic) but much less lately, more apt to roam around the house. He obsesses endlessly about minor matters which drives me mad, can't work the dishwasher or washing machine or lock the doors at night, but he locked me out of the house the other day. (A neighbour was able to phone him and eventually he followed instructions to let me in.) Today for the first time he wandered out of the house while I was out. He did return but without his keys, a neighbour had to let him in, so I feel more trapped now, if I go out will he wander off? .

It's quite lonely - living with no companionship and yet not on my own. I'm not good company for him, I can't do much of the meaningless chat he likes. He says to others and sometimes to me that I'm the enemy, the source of the problems. I know this refers to his disease but it really hurts all the same.

As an interim measure I'm thinking live in care. views on that also welcome but I think the real answer for both of us is a care home.

I think that he'd really appreciate the company in a care home, having people to chat to, a more structured day and activities organised, I'm not so good at that. On the other hand would he be lost without the familiar house and all his books and papers? It would be easy if he needed "personal care", my red line, but not there yet although maybe he doesn't shower very often.

What experiences do people have of this quite momentous and difficult step? Is it better while the person still has some cognitive ability? Are Alzheimer's sufferers actually happier being in a care home, I have read that? I'd really appreciate advice.
 

lemonbalm

Registered User
May 21, 2018
269
If you are thinking of a care home, try looking at some on https://www.carehome.co.uk/ to get a feel of what's nearby of you haven't already. Many care homes offer a day care service, so you could see how your husband got on with that first. It's a big change, so perhaps try it in small steps first. You might find that a day or so of day care works....
 

White Rose

Registered User
Nov 4, 2018
618
It's a tricky one @ashtreex , my partner is further along than your husband, I am completely stressed with looking after him, he understands nothing and has mood swings and angry outbursts and swearing. I was hoping for a couple of weeks respite but that's not happening at the moment. But however hard it is I would miss having him around! He did have a weeks respite in a lovely care home just before lock down and really enjoyed it, he liked having people around and activities. So my plan had been to put him in respite more often (I tell him he's having a holiday) and then decide about a permanent care home place or live in care. I think a care home would be more stimulating but it's not like being at home and having one to one care. So no help to you at all, sorry, it's an extremely difficult decision.
 

canary

Registered User
Feb 25, 2014
12,548
South coast
What about trying day care? It would mean that he would get stimulation and company, but would still come home at the end of the day to familiar surroundings. It would also be a good introduction to full time care once it is needed. And, of course, it would give you a break. You are likely to find full-time care at home eye-wateringly expensive and Social Serves will not fund it.

That is the stage OH is at, really, and he was going to be referred to day care, but the lock down has put that on hold. He has been in respite a couple of times and enjoyed it, so Im hoping that he will be happy at day care too.
 

ashtreex

Registered User
Dec 16, 2018
21
London
What about trying day care? It would mean that he would get stimulation and company, but would still come home at the end of the day to familiar surroundings. It would also be a good introduction to full time care once it is needed. And, of course, it would give you a break. You are likely to find full-time care at home eye-wateringly expensive and Social Serves will not fund it.

That is the stage OH is at, really, and he was going to be referred to day care, but the lock down has put that on hold. He has been in respite a couple of times and enjoyed it, so Im hoping that he will be happy at day care too.
Thanks Camary, I will have a look, not sure day care would be taking people at the moment but I will find out. I'm always doubtful because my OH was such a clever academic, but it would be nice to try.
 

Violetrose

Registered User
Jul 18, 2017
61
Didsbury Manchester
Hi Ashtreex,
my situation is pretty much the same as yours and I am tired and worn down by caring. I have tried to look at home care, but cannot get information on costs without getting marketing phone calls, which I dont want, as I cant talk about it on the phone when my husband is around.

After a very challenging evening yesterday, I took courage and contacted a local care home. The home manager took me on a video tour of the home via facetime and a care manager will do a needs assessment tomorrow via facetime.

At this stage I want respite care. However, I feel so conflicted and concerned about wether this is the right thing to do, especially at this time. I think it will be a process that has to be worked through. Part of me thinks my husband will enjoy the company and activity in the care home as he is very sociable. I also think he might be happier there as I am getting more and more grumpy and short tempered. My main 2 worries are Covid -19 risks and how on earth do I get him to agree to go into the home. Sorry this is not very helpful to you, but I will let you know how things pan out. Look after yourself.
 

None the Wiser

Registered User
Feb 3, 2020
46
Thank you for this thread. It’s helpful to know that others have similar thoughts. My husband had a day on Monday when I thought I really needed to start to look at how I might afford a care home placement.i do believe that he’d enjoy the stimulation of people other than myself and I’m really struggling with the broken nights and anxious and challenging behaviour. He has been attending day care, though not during lockdown of course, and to my surprise, despite being ‘academic’, he has enjoyed it ( even the singing)!
People have said to me that I will know when the moment is right for a care home place, but he really seems to swing from being reasonably OK to being a complete mess and a nightmare to manage.
 

Baker17

Registered User
Mar 9, 2016
517
Thank you for this thread. It’s helpful to know that others have similar thoughts. My husband had a day on Monday when I thought I really needed to start to look at how I might afford a care home placement.i do believe that he’d enjoy the stimulation of people other than myself and I’m really struggling with the broken nights and anxious and challenging behaviour. He has been attending day care, though not during lockdown of course, and to my surprise, despite being ‘academic’, he has enjoyed it ( even the singing)!
People have said to me that I will know when the moment is right for a care home place, but he really seems to swing from being reasonably OK to being a complete mess and a nightmare to manage.
The first time my husband went to day care I was very worried about how he would react. Much to my surprise he enjoyed it so it was lovely to have some me time.
As you say people say you will know the time, actually I had that moment while my husband was in his third time in respite. I was having an early morning walk along a deserted beach in Majorca when it came to me. When I got back I spoke to the manager of the home and she agreed to take him. You don’t stop caring but the role is different as we spend happy times together now.
 

Just me

Registered User
Nov 17, 2013
226
I’m at the stage of many of the above posters and I think the time has come for mum to go into full time care for her sake and mine but I am so conflicted.

She often says she doesn’t want to loose me, doesn’t want to be taken away - possibly as a result of recently being taken to A&E on her own by ambulance, two weeks ago, but I’m exhausted. I get little sleep and she is very needy/demanding throughout the day and her moods change in a blink.

If things come to a head soon, I worry about Covid 19 and not being able to see her. I’m also worried about the funding and not being able to visit homes to get a feel.

I can’t see any relief while we have this pandemic and that’s scary. She was attending day care but I’m not sure she would be able to go again as her condition has deteriorated so much since March.

While I’m pleased the new guidance allows people to visit others I’m dreading seeing neighbours in the gardens with friends and family while I’m still in lockdown caring for mum.
 

ashtreex

Registered User
Dec 16, 2018
21
London
Thank you for this thread. It’s helpful to know that others have similar thoughts. My husband had a day on Monday when I thought I really needed to start to look at how I might afford a care home placement.i do believe that he’d enjoy the stimulation of people other than myself and I’m really struggling with the broken nights and anxious and challenging behaviour. He has been attending day care, though not during lockdown of course, and to my surprise, despite being ‘academic’, he has enjoyed it ( even the singing)!
People have said to me that I will know when the moment is right for a care home place, but he really seems to swing from being reasonably OK to being a complete mess and a nightmare to manage.
Oh None the Wiser, that's so helpful. I will really try and find some day care and / or respite care as a first step. It's going to take a while, anway. I think as a result of today that the time is right when we carers can't manage any more. If the cared for simply sees us as the enemy then why force ourselves on them? Of course what they say probably reflects what they feel about themselves (as someone recently suggested to me) but we are human too. My children urge me that they don't want to see two lives ruined. He also said that it can be better to move to a care home when the person is still able to comprehend what's happening. Not sure if my OH would.
 

ashtreex

Registered User
Dec 16, 2018
21
London
The first time my husband went to day care I was very worried about how he would react. Much to my surprise he enjoyed it so it was lovely to have some me time.
As you say people say you will know the time, actually I had that moment while my husband was in his third time in respite. I was having an early morning walk along a deserted beach in Majorca when it came to me. When I got back I spoke to the manager of the home and she agreed to take him. You don’t stop caring but the role is different as we spend happy times together now.
Thank you! It sounds like me. I'll try day and respite care. Hope this will be feasible soon.
 

Teragram

New member
May 28, 2020
2
Suffolk
It’s good to find this thread and good luck to all those wonderful carers edging their way to a solution which looks after their relative and offers the carer some relief too. My dad declined hugely after anytime infection about five weeks ago and is now incontinent and very much more disturbed with hallucinations and no longer recognising me much of the time. He has been living at home, now with carers 4x a day, and my own health is suffering as well as my sleep. I spent most of two weeks investigating care home options only to find many either don’t take dementia patients, are not taking in residents at all, or would want dad to move on when he deteriorated further. I was feeling very despondent and trapped. But we have now found a good home, it has a vacancy, it even has chickens and a veg garden, we’ve had a virtual tour, and the whole extended family are happy that he will have better care and the potential for a more settled life than his current situation. We will pay a hefty deposit to secure the room (refundable) and then take about 10 days to talk to dad and make arrangements, and then there will be an assessment plus COVID test followed by admission about 72 hours later. The home is close to my home, his own home (and friends) and not far from his sister, with several good pubs within striking distance. For now the home has lots of restrictions but we will look forward to a more normal regime of lunches out in due course. It costs a fortune, and social services were no help as dad will be self-funding - all they did was offer a list of care homes for me to ring. His gp wrote a letter supporting any application for residential care, which I didn’t need but helped me. I am trying to work through my inevitable guilt and anxiety and am absolutely dreading the trauma of the whole transfer process. I am trying to keep focussed on what I believe will be a better situation for him and for me in a few months’ time as I have found the situation increasingly unbearable. Fingers crossed for the assessment and COVID test. Best wishes to you all.
 

ashtreex

Registered User
Dec 16, 2018
21
London
It’s good to find this thread and good luck to all those wonderful carers edging their way to a solution which looks after their relative and offers the carer some relief too. My dad declined hugely after anytime infection about five weeks ago and is now incontinent and very much more disturbed with hallucinations and no longer recognising me much of the time. He has been living at home, now with carers 4x a day, and my own health is suffering as well as my sleep. I spent most of two weeks investigating care home options only to find many either don’t take dementia patients, are not taking in residents at all, or would want dad to move on when he deteriorated further. I was feeling very despondent and trapped. But we have now found a good home, it has a vacancy, it even has chickens and a veg garden, we’ve had a virtual tour, and the whole extended family are happy that he will have better care and the potential for a more settled life than his current situation. We will pay a hefty deposit to secure the room (refundable) and then take about 10 days to talk to dad and make arrangements, and then there will be an assessment plus COVID test followed by admission about 72 hours later. The home is close to my home, his own home (and friends) and not far from his sister, with several good pubs within striking distance. For now the home has lots of restrictions but we will look forward to a more normal regime of lunches out in due course. It costs a fortune, and social services were no help as dad will be self-funding - all they did was offer a list of care homes for me to ring. His gp wrote a letter supporting any application for residential care, which I didn’t need but helped me. I am trying to work through my inevitable guilt and anxiety and am absolutely dreading the trauma of the whole transfer process. I am trying to keep focussed on what I believe will be a better situation for him and for me in a few months’ time as I have found the situation increasingly unbearable. Fingers crossed for the assessment and COVID test. Best wishes to you all.
Hello Teragram, thanks so much for replying. from what others say, and friends have found, it sounds to me as though your dad will indeed be better in a care home. Perhaps you feel guilty about no longer being able to look after him well enough? But I'm sure you don't need to. Professionals in care homes are trained to look after people carefully, I'm sure they are better equipped than we are once it gets to that stage.
My husband is not at that stage, it's a more difficult decision, but people's replies have been very helpful and if I can find the right care home I won't feel guilty come late summer, say, when he makes the move.