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Is respite a worth while stepping stone before the CH

AnneED

Registered User
Feb 19, 2012
80
East Yorkshire UK
Mum lives home alone with long arm family support and twice a day carers. We tried a week's 'holiday' at a reputable care home and have done this several times now. The first time I said it was a week's holiday at a 'special hotel' as the home has a hotel image (deliberately for people with dementia) but when mum saw people in wheelchairs she decided she was in hospital. As she's had stays in hospital for hip replacements she was fine with that. When she got home she told some people she'd been to a hotel and some that she'd been in hospital.

I think it is best to look for whatever your relative is most likely to cope with so long as the home is reputable, and some specialist dementia care homes deliberately create a familiar feel with hotel like 'hair and beauty spas' 'restaurant' type dining rooms and pub like bars. There is no need to use the words 'care home' if that will upset your relative.

Mum was fine where she went but I found that for me it was useful to see how I felt about that particular home, whether mum seemed comfortable there and whether the home had what I felt that she would need. Had I not liked the home I'd have tried another and I think I still might. For me it wasn't respite as the effort taken up by preparing mum for the stay, doing all the paperwork with the home and getting things back in order when she came home was hard work but I don't live with mum or have to care 24 hours a day (unless something goes wrong) and so didn't need the time out that other carers might need. Whatever happens next I know that there are decent care homes out there where mum will feel at ease and I will be happy with the standards of care and that is really important as there is much guilt anyhow about 'putting a relative into a home'.
 

Hazara8

Registered User
Apr 6, 2015
416
Respite

Hi
Any advice on whether it's worth it for mum to go into respite before we make the final decision of placing her in a CH. She's really going downhill fast with this awful disease, is respite a good option first? Did anyone find it worthwhile for their own peace of mind, I'm still wrestling with the opposing voices in my head where CH's are concerned, I know she needs this but I can't take that final leap just yet, I know she's still with us enough to hate the idea of it and be really upset that we have to do this, it will break her heart and ours too.

Any advice would be brilliant.
I had no option but to send my mother (late 90's) into emergency respite, owing to an impossible 24hr care situation, coupled to a UTI infection which sent her 'off the wall'. Nevertheless, it was extremely hard and unpleasant to say the least. The person whom you had cared for these past eleven plus years, was now out of the house and entering a new and strange environment. What would be the outcome. Well, ijn my case, Mother was cared for very well. The infection sorted and after some initial 'blips' and upsets -- she would not eat nor take medication for a time - she was moved into long term care, next door and after about two months, appears to have settled. I was lucky because there was no 'where am I? When can I go home?' Instead, an ongoing confusion which eventually turned into a state of relative calm. All the stress elements at home - no proper bath, a long staircase, downstairs commode, not able to be with her 24hrs, owing to cooking, cleaning, shopping etc., have been resolved in the Care Home, where a 'Butterfly' approach has helped enormously. The Staff attend on her more or less continuously. She is checked at night every hour. All in all it has been a productive move and the earlier pangs of guilt and sheer misery, have abated. Mind you, at the moment I visit each day at the same time. The Care Home have a completely open door policy. I can assist Mother in eating if required and bring the odd treat. When I leave it is always on a high, or when she is say starting a meal.
It was the right move, the best thing FOR HER. I suppose at the end of the day you have to weigh up what is going to be the very best option for the one who is suffering this dreadful disease. Your own heart strings matter and they can be pulled to breaking point. But think of being happy when the other person is 'happy' within their own world. That is when you can sleep at night. This is probably a bit of a ramble, but I appreciate the problem greatly and until you have been there, noone can dictate to you. Good luck as and when things come to pass.
 

Aragorn

Registered User
Jul 23, 2015
18
Respite - try it.

I have used respite for my wife (advanced VD) for 3 years, 1 week every 2 months.
Was v anxious first time, but much more relaxed now. Don't keep visiting, get away if you can. I dread losing her to a care home. Combination of day centre (3 days per week) and respite, plus good paid-for care, has kept me in fairly good shape, and helped to keep her at home. Do try respite, it will probably work much better than you expect.
(This is my first contribution to Talking-point.)
Good post, jhind. How did you choose the CH? Was it difficult, and how did you introduce the idea to your wife?
 

blackwood77

Registered User
Jul 17, 2015
4
Alice through the looking glass

Hi there. We weren't anywhere needing respite as MIL was managing ok with 4 carers' visits per day and family filling in the gaps. Then we had a massive dip including a hospital visit and MIL went straight into a nursing home on the advice of the professionals. She did settle quite fast in spite of it happening so suddenly for her.
A bit off topic but thought how true was the Alice quote at the bottom of your post!!! Thanks x
 

Night-owl

Registered User
Feb 10, 2011
22
S. Lincs
Respite care-pros and cons

A bit off topic but thought how true was the Alice quote at the bottom of your post!!! Thanks x
I want to describe my mother's positive experience with respite. I arranged several periods of respite care for her in a few different homes. That helped me assess their various qualities for a permanent stay if/when it became necessary. She enjoyed it each time, and said 'I must keep this going I think'. I said that she could come back again after a little while, but afterwards wondered if she was trying to tell me she wanted to stay permanently. We were eventually told by the GP that she needed 24 hour care, and I was relieved that we had already discussed it with her; she had come out of respite and was clearly losing interest in her own home...not looking round, lying in darkness on her bed..., and I asked her if she was missing the company. She said she was, and she liked having someone around all the time if things went wrong. She settled well into residential care, in one of the homes where she'd stayed on respite. The staff welcomed her with 'Mary, you've come back to us'! and that helped us get over the 'crossing the threshold' moment. That will always be painful for us, maybe more so than for our loved one. But as a previous post said we have to remember that we have their safety as our priority.
Best wishes with all of it,
Night-owl
 
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Morninglark

Registered User
Jun 23, 2011
47
Holywood, Co Down
Respite before CH

Hi
Any advice on whether it's worth it for mum to go into respite before we make the final decision of placing her in a CH. She's really going downhill fast with this awful disease, is respite a good option first? Did anyone find it worthwhile for their own peace of mind, I'm still wrestling with the opposing voices in my head where CH's are concerned, I know she needs this but I can't take that final leap just yet, I know she's still with us enough to hate the idea of it and be really upset that we have to do this, it will break her heart and ours too.

Any advice would be brilliant.
Hi Andypandy!

Yes I think its a good idea as it gives you an idea what various places are like before committing to one. My husband tried about 3-4, some good, some awful, and we learnt what to look for. He is now very settled in a Fold care home, and has never once complained. He was very quiet at first but now after 6 months he seems to know the place and the carers there. I had been getting exhausted looking after him at home, even with carers coming in. The home is within 5 minutes drive, so I see him about 2-3 times a week.
 

irishmanc

Registered User
Jan 14, 2015
64
Manchester
Hi, I have recently wathed a video on youtube called Alive Inside and I would recomend that every Dementia carer should watch it.
Thanks so much for the recommendation - I watched it yesterday & cried all the way through. What a marvellous message - I have shared it on both Facebook and Twitter. The more people who see it the better. Thanks again.
 

jackym

Registered User
Aug 13, 2014
4
Hi, I have recently wathed a video on youtube called Alive Inside and I would recomend that every Dementia carer should watch it.
Very inspiring. It's also worth knowing about the This is Me document: I can't post the link as a new member but if you search on the Alzheimer's website, you will find the download.

It was originally intended to give hospitals information about the patient but is also useful to take to respite as you can give lots of information, such as love of music etc. to help the staff 'know' the real person.
 

nannylondon

Registered User
Apr 7, 2014
2,475
London
try respite

I cared for my husband for 7 years at home and always said no to respite as he was fairly stable he declined drastically in last few months and he went into respite for a few weeks he was quite happy there told him he was having a little holiday after further decline he was sectioned he is now in full time care where he went for respite this was very reassuring as I was familiar with staff and they knew him don't know if this is any help
 

andypandy

Registered User
Jun 28, 2015
32
It's starting tomorrow

Mum had a fall which has proved she needs 24/7 care so tomorrow morning she's moves into a local (thankfully) ch to start with as respite but with a move to permanent after that. I'm here at the moment doing my final 'night shift' but feel so guilty. So many of you have said there is nothing to feel guilty about and in my head I know it's for her needs now but it hasn't stopped me felling like cr@p (excuse the word sorry). We popped a few of her things in the room to try to make it feel more homely and we've told her it's a hotel as she needs a new boiler (she actually does) so she doesn't think it's permanent. I just feel sick, I have done all day. I still think she will think we're abandoning her, even though I was described by her to the carer as the lady that looks after her. I know both my sisters feel the same, and I am frightened about her not getting the same care as she does at home. When you're at home they get 1 on 1 don't they, they want the toilet you go straight away with them, they start to wander you're there for them etc, I know she won't get that sort of attention but I do know we can't give up our jobs to look after her, finances have dictated that.
Sorry to go on but I can't get past this at the moment I can't breath with the guilt. I really hope this will get easier.
 

Terri257

Registered User
Jan 6, 2014
50
My mum recently got taken into hospital following a UTI infection and dehydration. She was in a week. The week before her hospitalization and the beginning of her stay in hospital her behaviour was very difficult. When she came back home she was still disoriented for about a week but has now settled down again to almost her own self. If your mum is resistant to going into a CH and you are thinking of doing this in order to give her a chance to get used to it, I don't think it will work. Change is unsettling and the chances of her remembering what happened in respite even if it was a good experience, are slim. It sounds that like my mum, your mum may have an ingrained fear and opposition to ever going into a CH which I believe will make her resistant to ever accepting this. So if you are going to have to do it, then just do it once. In my opinion, respite would only be kinder if by doing it , you may significantly increase the time she will get to stay home by being able to give yourself a break.

You mention your mum has recently had a 'rapid decline'. If there is a very rapid marked decline in behaviour, cognitive ability etc over the period of a week or two, you may want to check that this is not down to a UTI infection which is extremely common in dementia patients. A blood test which is very quick these days will let you know and can be quickly cleared up with some antibiotics. Patients who experience this do not always return to exactly where they were before the infection but after a week or two you will be able to identify the level to where their recovery has left them.

These are not easy decisions and I don't believe there is any right or wrong. If you care and love someone affected by Alzheimer's only you can decide what you think is best for all concerned in the equation, including yourself and other family members. It's a sad and wrecked process of trying to do your best in providing what quality of life you can knowing recovery will not be an option.
 

Henanny

Registered User
Mar 14, 2013
2
Henanny

Hi
Any advice on whether it's worth it for mum to go into respite before we make the final decision of placing her in a CH. She's really going downhill fast with this awful disease, is respite a good option first? Did anyone find it worthwhile for their own peace of mind, I'm still wrestling with the opposing voices in my head where CH's are concerned, I know she needs this but I can't take that final leap just yet, I know she's still with us enough to hate the idea of it and be really upset that we have to do this, it will break her heart and ours too.

Any advice would be brilliant.
I have placed mum in respite on about 6 occasions now with the view that she may eventually have to be placed in that care home long term (a long process which we have started now). I felt that it may help her get used to the home and for the carers to get used to her. Obviously as mum's dementia has progressed (vascular & Alzheimer's) it doesn't make much difference where she is as she has become less and less aware of her surroundings.
My reasons for using respite were that I felt I just couldn't carry on caring; I find I can do about 4 weeks caring (full time) and I know if I don't get a break I feel completely worn down; respite has been probably every 6 weeks.
I find it very hard taking her in for respite and I have had to toughen up considerably. I usually get into my car and burst into tears although I am sure she is fine. I am looking at her surroundings as someone in sound mind, because of her dementia she sees it totally differently (I hope). She is usually surprised and happy to see me when I pick her up at the end of the week, kissing the carers and saying "see you soon, I hope" from that I have to be confident that she is settled in the care home!
Her doctor told me that you can leave it too late to settle a relative into a care home.
Next time mum goes into the care home it will be for good - I am not looking forward to that but as the manager said to me, the mother/daughter relationship will return, hopefully time spent with her will be quality time.
Its such a hard call but for your own sanity, do organise respite. I didn't want to get into an emergency situation whereby my choices for mum were taken out of my hands.
Good luck with your decision. (I don't visit during these respite visits as the break, in my mind, has to be completely away from my mum and my responsibilities of caring for her!)
 

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