Going into the care home

[Sweetsheep]

I just need some honest feed back to hear what other people on this forum have experienced.

Is it better to put your loved one straight into a care home permanently or to "trial" a 2 week respite to see how they get on?

Only asking because we are facing this tough decision and we seem to differ from what my husband's family think.

We feel as she has lived with us, that she will not want to go back in again after coming out as she is in complete denial about having Alzeimers. We know she will struggle to settle in.

But my SIL thinks a suck and see it approach is best? And apparently the care home is saying a respite test is best.....

What happens if she doesn't want to go back again? We are at our wits end at the moment.

Anyone with any sound advice?

 

[Oh Knickers]

Sweetsheep,

Oh, lordy, relatives!. These are the relatives who do not help out, I'm guessing.

May I suggest, tell 'em, very happy to go down suck it and see. However, only if they agree that they will take over care of Mum once her trial period ends as you, reluctantly, can no longer cope.

Suggest, as a word to the wise, before they commit to that decision it would be wise to try out care of mum for a week in their place before she goes into care. They may find the whole care scenario a breeze in the park as they have greater skills than you do. However, they will only know by doing a trial period.

If they do not agree - do not agree to a trial period in respite. Your home, your choice.

 

[Linbrusco]

Im not from the UK, but my Mum was booked in for 2 weeks respite as my husband was going in for major surgery. My Mum & Dad live behind us but I am/was Mums main carer. My sister was pretty reluctant to even the respite care option but she had Mum & Dad at her holiday house for 3 nights a few minths previous so did have some idea of what she was like.
It was all on my shoulders to get Mum to the CH which was a mission itself. I told Mum that her Dr had organised it aa her health had been poor and she needed some nursing care for a few days.
Then the CH asked if we had considered permanent care as they had a vacancy and a contract for funded residents. But if Mum went into Respite and went home there was no guarantee of another vacancy for quite some time. Our arm was sort of twisted in the fact that we had checked out 4 of the 5 dementia care homes in our area and this was the best. Also we knew that if she came home, it wouldnt be very long indeed before she did need permanent care.
We had a family meeting with me, my sister, & brother & Dad.
We accepted the offer, and as Mums POA I arranged all the paperwork.
My husbands surgery went fine, and then both my sister & Dad asked what day Mum was coming home out of Respite. They still thought she would be back for a while first. Couldnt beleive my ears. Total misunderstanding although my brother realised she wasnt.
All sorted, and Mum has now been in care just over a year. Its been difficult at times but still best decision made.

 

[Kevinl]

I sometimes get to sit down with the carers and have a chat, unlike many on here whilst the carers are busy they often have time for a chat, usually while we're all feeding people who need 100% assistance like my wife.
I asked if this home did respite care and the answer was "no, thank God" and several who'd in the past worked at places that did respite agreed.
The hardest time is the first few weeks after a person comes in and people who are only needing respite usually have much more capacity than the rest of the residents there, the ones that come from other homes (usually where their behaviour is too challenging so they've been asked to leave) fit in a lot quicker.
I think people can take a dip in the first few weeks but do seem to bounce back most of the time but not always. I've seen people walk in and be in a wheelchair a couple of weeks later and the more capacity they have the worse the decline seems to be.
That's just my observation from the past 18 months of daily visits in an EMI home, residential and care homes may be different a lot depends on the capacity of the person in my view but I have no personal experience of respite just the opinions of the carers I've asked about it, you'll only know when the 2 weeks is up.
K

 

[Ann Mac]

Sweetsheep,

Oh, lordy, relatives!. These are the relatives who do not help out, I'm guessing.

May I suggest, tell 'em, very happy to go down suck it and see. However, only if they agree that they will take over care of Mum once her trial period ends as you, reluctantly, can no longer cope.

Suggest, as a word to the wise, before they commit to that decision it would be wise to try out care of mum for a week in their place before she goes into care. They may find the whole care scenario a breeze in the park as they have greater skills than you do. However, they will only know by doing a trial period.

If they do not agree - do not agree to a trial period in respite. Your home, your choice.

Agree 100%. You've told them that you can no longer continue to care for your Mil in your own home, so what on earth is the point of a trial period - unless, as Oh Knickers suggests, they are happy for her to come and live with them?

You have done everything you can, and far more than they have, to care for your Mil, to try and pressure you like this is so unfair and I am sorry that they are now adding to the stress and presure.

Use the suggestion above, and if they don't agree, pass the buck to them - ask them to come up with a solution if after two weeks, they say that your Mil isn't settling/isn't happy/THEY don't think its right for her - ask what they then propses to do being as Mil cannot go to them or you? Don't let them make that your problem to solve xxx

 

[pamann]

Respite

Hello Ann Mac 2yrs ago my husband went into a CH for 2 weeks respite to give me a break, the relief from caring was so great l could not have him back home, he is still there, l have seen so many residents come in for respite, their families decide to keep them there as they realise they are in the best place, it does vary how long they take to settle anything from 3 months to 1yr, you need to get your life back, don't feel guilty, l never have l looked after my husband for 10yrs he has settled well now. I hope all goes well for you

 

[pamann]

My post was ment for sweetshop, not Ann mac

 

[jaymor]

I agree two weeks respite will give you a clearer idea of how you are managing and you may find you realise for the first time you can no longer go on.

Two weeks will not let you see how someone will take to living in a care home. It takes a while longer for them to settle and feel part of the home. Like us going on holiday and sitting down to meals with strangers. Then at the end of the holiday you are chatting away like old friends, know something about each other's lives etc. Quite quick for us but for someone confused and anxious and living with dementia it will take longer.

If you know that you can no longer care, and there is no shame there, then it is most likely time for permanent care. If someone else would like to take over and try well fine, but if it is you again at the end of two weeks then it is full time care only.

Take care.

 

[Sweetsheep]

Thank you

Thank you for the responses. To be honest we had a lovely care home which we have been waiting on for a few months now. Unfortunately we can no longer care for my MIL as both of us are living on antidepressants and in therapy and going out of our minds with worry around our lives as it is getting to a point where one of us would have to give up work, which we absolutely cannot afford either. We had everything in hand. After my husband got signed off work for a month I lost my temper and let my thoughts be known. Since then our plans have had to be cancelled as my SIL seems to want to prove she is not all the things I accused her of, and we are now at her mercy. She has decided It's best for her Mum to be in a care home closer to her. Our fears are that if she was unable to cope with seeing her Mum while she has lived with us, she is not going to cope caring for her via a care home environment. She seems to know best atm. I don't think she understands her Mums mood swings and aggressive behaviour if things don't go her way. She really doesn't know her Alzeimers mum at all. The proof is in the fact that she feels a 2 week test will be enough to see if she can cope....and then What? What are out options if she doesn't. Because my SIL won't or says she can't care for her at her home? It falls back to us..

I know my MIL is going to struggle to settle in. I saw her go through it when she moved in with us, and we were family. She has since regressed and become even more challenging As time has gone on.

I feel that putting her through a 2 week ordeal to settle in and then taking her out again with the purpose of putting her back in again in a few weeks after that, is literally the reason why I am fearful.

My SIL really believes my MIL will be able to distinguish between a 2 week "holiday" and a permanent move into a care home. Which Btw, is the reason why she doesn't want to be the one doing the physical "permanent" move ....she wants us to fetch my MIL from the trial and then take her back ourselves for the permanent move.....

Thank you for your advice. I know in my heart what the right thing is. My dear MIL needs a stable environment and if we are going to put her in a care home, that is the decision. There can be no trial period. The reality is she needs the specialised care my husband and I can no longer give her in our home. My SIL will never take her in if the trial failed.....

I am so tired of the fighting and nonsense it's unreal! I just want what's best for my MIL.

 

[lemonjuice]

This will be your best decision

This says it all

. . I just want what's best for my MIL.

Your motives show you want what is best for your MIL.
Indications in your post that you and your husband are suffering carer burnout

Unfortunately we can no longer care for my MIL as both of us are living on antidepressants and in therapy and going out of our minds with worry around our lives as it is getting to a point where one of us would have to give up work, which we absolutely cannot afford either.

SIL . . seems to know best atm. I don't think she understands her Mums mood swings and aggressive behaviour if things don't go her way. She really doesn't know her Alzeimers mum at all. The proof is in the fact that she feels a 2 week test will be enough to see if she can cope....and then What? What are out options if she doesn't. Because my SIL won't or says she can't care for her at her home? It falls back to us..

I know my MIL is going to struggle to settle in. I saw her go through it when she moved in with us, and we were family. She has since regressed and become even more challenging As time has gone on.

mean if you don't do something soon a decision could be forced upon you and MIL may end up in anywhere where a space is available.

It will be the most difficult decision you ever make and the 'caring aspect' won't stop just because someone else is responsible for the 'hands-on care. But it is so often the only decision left.

 

[cragmaid]

OK time for straight words and no I am not going to bully you but unless you and OH talk firmly to your inlaws you are going to be in anguish for a long time.

I think ( my opinion but others will understand) you must tell your SIL that if she chooses to place MiL in a care home away from her normal home area, you will NOT be able to deliver her to "Respite" nor collect her after her two weeks and then take her back into care when a room finally becomes available. Don't engage in any further discussion with her.

I know this goes against the grain, that you want to be doing what you know will be kindest for the lady, but if you continue to play a part in SIL's scheme you are increasing your stress and distress and it will transfer to MIL, she will pick up on it.

I know that you want to minimise MIL's upset, but you and OH need to think about how this has affected you up till now and how you can manage the extra time, if MIL comes back to you after Respite. You cannot do it all and you know this. You are burnt out now. Hand Mum's care over to SIL and take a step ( or several) back just now.

Time to look after you two now.x.x

 

[Oh Knickers]

I'd second what Cragmaid has said. In view of the support, YOU are now needing - that is both of you - I would consider being very honest. Tell SS (Social Services) that you and your husband are on the verge of carer breakdown as you can no longer cope.

I am assuming SiL is providing her care for her mum in your home? With all due respect, it is not for someone else to dictate how you live in your home. I appreciate you very very well feel you do not, currently, have the fight for this. Should SiL decide she wants to do the caring she can take MiL home with her. You are not at SiL's mercy. Give her a week to get organised. Should nothing be arranged let SS know you have now reached carer breakdown and urgent respite is now needed.

You appear to be torn as to what is best for MiL when you are both, metaphorically, on your knees. You are both either very good people or, hopefully, had a good relationship with MiL. Would MiL, were the latter to be the case, want both of you going through what you are going through?

Should you feel up to it give Alzheimer's a call The link is below. Scroll down the page, put your postcode in and the local contact number will come up.

https://www.alzheimers.org.uk/

I do hope you get a satisfactory outcome soon.

 

[Frank68]

Hi Sweetsheep - don't envy you as having to deal with such a situation is bad enough WITH family support!
My wife is now in a care home. I tried a week's respite at the end of 2016 and it was an absolute disaster as she was extremely disorientated and it took enormous and sustained effort to get her back to where she had been beforehand - but the care home was very poorly managed.
I eventually found a home that did not do respite (for the reason that it can be so disorientating) but offered progressive day-care leading up to full residency over a period tailored to the individual. For Sue this worked really well and she has settled very well. It might be worth asking the care home you have in mind if they do this? If not (and I think it is rare) then I would generally want to support the thought that to put MIL in for two weeks / home / back again might be more disruptive for her than straightforward entry. You can probably say "it's a holiday" or "just for a while" - as awareness of time / days may not be too sharp?
Remember too that if the care home is good then then the staff will be skilled at helping new residents settle in. You just have to trust them, and that's not so easy when you have prided yourself in delivering "the best"!
SIL: A clear choice I think - "MIL is going permanently into the care home on ..... If you wish to make alternative arrangements yourself they will cannot involve her living with us as from that date. We simply cannot carry on any longer".
Love and prayers
Frank

 

[DMac]

Just to add that family members, even if they are set on a particular course of action, can, and do, change their minds when reality hits them in the face with full force.

My SIL was absolutely adamant that her mother (my MIL) would decline in a care home setting. "IT WILL BE THE END OF HER!" was the constant - and very loud - refrain from SIL. That was until MIL started knocking on SIL's door at all times of the day and night (she used to live very close by to SIL).

Then SIL and her family went on holiday for 2 weeks. Respite care was arranged for that period. MIL went into the care home and - in short - never came out. That was over a year ago. MIL has put on weight, is thriving, entertained with numerous activities and visits, and is as well as can be expected. It certainly hasn't been THE END for her!

 

[Mike'sDaughter]

Today I took my Dad into a care home today after much family discussion and despite that fact the we knew he was no longer safe at home, I feel as if I have totally failed him. He is in a lovely small home which seems to be perfect for his needs but he just keeps asking why I won't take him home. We are telling him that he needs convalescence as he has been in hospital following a fall but I can't keep telling him that. The worst thing is that he keeps asking why none of his family want him and the fact is that none of his children are in a position to give up work and care for him full time but truthfully, even if we could, I don't think any of us could cope as full time carers. I feel so sad and hate to see him unhappy. I know people are all different but is there a possibility that he will eventually settle. (The only correct answer to this is, 'yes, just give him some time' otherwise, I'm not sue what I could do next)

 

[LadyA]

@Mike'sDaughter
It's terribly hard when we have to put our "grown up" faces on, and make decisions for our loved ones that are in their best interests and for their good, even though it's not what the person wants. It's like a child who doesn't want to go to school - you can understand and empathise, but they still need to go!

It does take time to settle in a Care Home. Sometimes, visiting less often is advised. Personally, I went about every other day, but only stayed about twenty minutes. Stick to what you've said, or it will be confusing - the doctor said, for a period of convalescence. I used to say " until you get your full strength back".

Try not to worry too much. You've made this decision for your dad's good!

 

[DollyBird16]

@Mike'sDaughter
A seriously tough and exhausting day for you.
I feel the same, I know that doesn't help, caring for my Mum full time would be too much. I'd like to think I could then reality finds me. I would not be able to do 24/7 every day for how long, who knows.
I think you've shown great strength, immense love and respect to give him the best possible care.
From reading about this wicked illness, our dear parents, partners, family members who are tormented are fearful in themselves and seek security. The people in his new home know this and know how to ease this and bring the reassurance and security needed.
I will definitely take the advice from here of doing a visit to observe from a distance.
I take comfort reading posts here like the one above from @DMac
Be kind to you, it is all for your love of your Dad.
I ask myself would I love or care for my Mum any less if she were in a home - no way, she's my Mum.
My friends Dad is in a home, he tells her he's not leaving this hotel ever and that she should come and stay, but only for a short holiday. Lol
Keep posting good and the not so great, people here will give you kindest heartfelt support.
I will be thinking of you. X

 

[Scouts girl]

My heart goes out to you Mikes Daughter and I know exactly how you are feeling at this awful time. My mum was moved into emergency care last Christmas as I could no longer care for her 24 hours a day and was reaching carers breakdown. I felt, and still do feel to some extent so guilty that the decision was not hers and I just had to do what was needed not wanted to get the best specialised care for my mum that I could no longer give her at home. I knew that she was safe and the home were giving her the best care she needed. Mum is now on end of life care and although it is so upsetting to watch her deteriorate so quickly I know that she is comfortable and pain free. I know deep down I and the doctors made the right decision to move her into care but it is still hard to accept. Please try and know that you made this decision for the love of your dad and his safety and he will continually ask to come home, my mum still does even now at times, but stick to what you are telling him. We have to tell so many 'love lies' for our sake and for our loved ones. I am sure he will settle eventually and you will probably find that he gets more anxious when you visit but is quite settled when you are not there. With regards to visiting you must do what you feel is best. I visited every day to see mum when she first moved, but had to reduce my visits as she just got so upset and agitated when I was there and the carers advised me to curb my visits to allow her to settle without me. I do now visit every day as she is confined to her room but may stay only an hour at a time. I think this is more for my peace of mind than mums as she is sleeping most of the time now. You take care of yourself now, and have some 'me' time. I found joining local carers groups gives me wonderful support and, if course, TP has also been a great voice for me to know that you are not the only one going through this awful illness. Keep posting and letting us know how you and dad are getting on. Xxx

 

[canary]

Asking to go home is completely normal @Mike'sDaughter but you are doing the right thing.

We are telling him that he needs convalescence as he has been in hospital following a fall but I can't keep telling him that.

Well, yes you can actually. I told mum exactly the same thing when she went into her care home and I continued saying it every time she asked. It took her about 6 weeks to settle and it can take some people longer, so dont worry about it. Quite often they are happy in the CH, join in the conversations and activities and dont ask about "going home", but as soon as they see family it triggers off the loop. Try sneaking in and seeing how he is when he doesnt know that you are there, but it is very,very early days for you and your dad. Keep your visits short and sweet so that he can learn to rely on the staff there.

 

[Mike'sDaughter]

Thank you so much for your comments and support. It really does help. I'll let you know how thing progress.