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Reflections on respite

Pauldaah

Registered User
Jul 15, 2017
8
0
Isle of Wight
My OH was placed in respite by his family when I became ill and was admitted to hospital as an emergency. He spent three weeks in the care home while I was in hospital and then at home convalescing. During the two weeks I had at home on my own I felt my life returned to normal and I felt like a real person again. But almost as soon as he came home I felt as exhausted as previously. He was terribly unhappy in respite, rang and emailed everyone he knew continuously and blocked up everyone's voicemails. He was literally ringing me 50 times an hour. He lost two stone in those three weeks, became dehydrated, wouldn't leave his room, and became badly confused. It took several weeks after he returned home to get him healthy and reasonably happy again. The care assessment package allows me four weeks respite a year, (which we will have to contribute to), but currently I just don't know how I could place him in respite, except in an emergency, when the benefits were so temporary and the finial cost so great.
This is my worry when, if, he goes into respite. What will he be like when he comes home. There would be no problem with any phone calls or emails, he has no idea how to use them anymore! Still, have been planning on visiting friends and my sister if it ever happens or am I jumping the gun a bit!

Sue
 

Gilly1952

Registered User
Jun 19, 2017
26
0
Kent
This is my worry when, if, he goes into respite. What will he be like when he comes home. There would be no problem with any phone calls or emails, he has no idea how to use them anymore! Still, have been planning on visiting friends and my sister if it ever happens or am I jumping the gun a bit!

Sue
Like your husband Sue mine can no longer send emails or use the telephone. I do worry about what he'll be like when he comes back but I am desperate to visit my family. My brother moved to Southampton (from Kent) at the beginning of the year and I have a new great nephew that I haven't met yet. That is what is spurring me on. Fingers crossed that we both get to enjoy a little stress free break.
 

Gilly1952

Registered User
Jun 19, 2017
26
0
Kent
Happy New Year to you all and thank you for all the responses I had to my questions about respite care. I meant to come back earlier to say that I had gone ahead with the plan for respite and to let you know what my experience had been like.
My husband spent a week in a lovely care home with the most wonderful staff. I couldn't honestly say he was happy 100% of the time but mostly he was settled and joined in activities and ate well.
I had a lovely week visiting my brother and sister-in-law. I also managed to visit my niece and see my 6 month old great-nephew for the first time. I had meals out with friends and family and felt very refreshed by the end of the week.
When I went to collect my husband he was a bit emotional and there were tears. Several members of staff came to say goodbye to him and he gave them all a hug - which told me quite a lot about the staff and my husband's relationship with them. By the time we got home after a 45 minute drive he could not remember where he'd been. He was a bit more agitated than normal for a day or two but on the whole I felt that the experience of respite care had not been detrimental to him but it had been extraordinarily beneficial for me.
Did I feel guilty about leaving him there at the start of the week - well yes of course I did, but once I'd checked on his welfare the following morning I was happy to set off on my trip to visit my brother. How much did it cost - almost £1500. Was it worth it - yes every single penny. Would I do it again - yes, I am already planning for another break later in the year.
When you are a full-time carer it is easy to get caught up in the idea that the person with dementia is the only person that counts, you get into the habit of putting them first. But sometimes we carers have to look after our own needs in order to keep going.
 

canary

Registered User
Feb 25, 2014
18,140
0
South coast
What a lovely positive post @Gilly1952
No person with dementia is going to be happy 100% of the time, even at home, so I think being settled and joining in activities is as good as it gets!
Im so glad you managed to visit relatives and friends - feeling refreshed at the end is invaluable
xx
 

yorkie46

Registered User
Jan 28, 2014
399
0
Southampton
I am just about to get my husband into respite care for two weeks and the worry and guilt is dreadful. I reached the point last week when I just physically couldn't cope. He's a big man with increasingly poor mobility. It took ten minutes for him to shuffle to the bathroom with his frame, at one point telling me he couldn't stand much longer. This after having to physically haul him out of bed was just the final straw. I phoned the social worker in a desperate state and she came to visit. After a lot of talking and trying to get my husband to understand that I need a break he sort of agreed to respite. The social worker has requested this ASAP because I'm so exhausted. Had a call from placement team on Friday with a possible place for him. A small care home with a good rating and I'm assured the care is excellent. Telephone assessment arranged for next Monday. Told him about it though not too much, he wanted to go to see it but I've told him it's not possible. He forgets that he is not able to walk down the drive to the car and keeps saying he wants me to take him to different places. Although we have lived in our home for 53 years he regularly thinks he's somewhere else, asks where the nearest toilet is and which way to the bedroom. I'm hoping for this reason he will be ok somewhere different. I'm sure given his choice it may not be what it would have chosen but I think it will suit him. It's a small place which I think will be better than a large establishment with endless corridors. The next step if he settles is to think about permanent care. He will never agree to it but I'm hoping the respite will lead to it. The social worker is arranging for a mental capacity assessment while he's in respite because she and I both believe he does not have capacity. I don't feel he is safe at home any more and every day is a physical struggle for both of us. I've tried carers but it just doesn't work because they don't come at the times he needs them which means I end up getting him up and putting him to bed but paying for them to do nothing. They're not there every time he needs the toilet then needs changing. Nobody seems to understand that people with dementia are not willing to wait for what they want or to be flexible. I feel dreadful at the moment, I don't sleep but he sleeps well. I'm physically and mentally exhausted so I know this has to happen but that doesn't make it any easier.
 

Bunpoots

Volunteer Host
Apr 1, 2016
6,281
0
Nottinghamshire
You sound absolutely exhausted @yorkie46 . I know how it is when someone loses mobility. My dad was only the same height as me but I still struggled once he started to lose mobility and it caused me serious knee problems from helping him (thankfully better now). Please don’t feel guilty - you need to look after yourself too.

I hope your husband’s respite goes well. My dad, much to my surprise, did very well in his carehome and we made the decision for him to stay there.
 

Pots and Pans

Registered User
Jan 13, 2020
248
0
Been following this thread with interest as have guilt monster big-time right now. OH adamant he would never go to a care home - resentful if I book carers even - but I am currently arranging to visit a local care home then have manager visit us to see OH to assess needs ( bet he will do host mode!) with view for a permanent move. Self- funding and I have all the poa bits. I might have to force the issue somehow but consultant has said OH has no capacity and I feel it is time. He likes day centre ( though each week he thinks it is first time there until he walks in) so am hoping he will settle. But huge guilt already. An I doing this in his best interests or mine? Also dreading the loneliness after 48 years together... but can't see much alternative. If not now, will be next month or the one after and I will just be a lot more worn down.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
2,241
0
Newcastle
Hi @Pots and Pans It is not a question of his best interests versus yours. When the need for respite or a permanent move to a care home becomes evident, then enabling this is best for all. It may not seem like that at first. Feelings of guilt are inevitable but not deserved. What either of you would want is no longer relevant. There is no guilt in doing what is needed for both your sakes.
 

Thethirdmrsc

Registered User
Apr 4, 2018
626
0
Hi @Pots and Pans youknow that no one with dementia will ever agree to any change, so you have to in effect take control. From my point, it’s just a different pain, but more in the mind this time, and not so much the physical side of caring. But mine now has a team of people doing things for him that I could never do. It’s all just pants.
 

yorkie46

Registered User
Jan 28, 2014
399
0
Southampton
You're all right. A friend has just said to me on the phone that it now becomes a safeguarding issue because he could fall, which he has done a few times, and he could take me down with him.
 

Gilly1952

Registered User
Jun 19, 2017
26
0
Kent
I am just about to get my husband into respite care for two weeks and the worry and guilt is dreadful. I reached the point last week when I just physically couldn't cope. He's a big man with increasingly poor mobility. It took ten minutes for him to shuffle to the bathroom with his frame, at one point telling me he couldn't stand much longer. This after having to physically haul him out of bed was just the final straw. I phoned the social worker in a desperate state and she came to visit. After a lot of talking and trying to get my husband to understand that I need a break he sort of agreed to respite. The social worker has requested this ASAP because I'm so exhausted. Had a call from placement team on Friday with a possible place for him. A small care home with a good rating and I'm assured the care is excellent. Telephone assessment arranged for next Monday. Told him about it though not too much, he wanted to go to see it but I've told him it's not possible. He forgets that he is not able to walk down the drive to the car and keeps saying he wants me to take him to different places. Although we have lived in our home for 53 years he regularly thinks he's somewhere else, asks where the nearest toilet is and which way to the bedroom. I'm hoping for this reason he will be ok somewhere different. I'm sure given his choice it may not be what it would have chosen but I think it will suit him. It's a small place which I think will be better than a large establishment with endless corridors. The next step if he settles is to think about permanent care. He will never agree to it but I'm hoping the respite will lead to it. The social worker is arranging for a mental capacity assessment while he's in respite because she and I both believe he does not have capacity. I don't feel he is safe at home any more and every day is a physical struggle for both of us. I've tried carers but it just doesn't work because they don't come at the times he needs them which means I end up getting him up and putting him to bed but paying for them to do nothing. They're not there every time he needs the toilet then needs changing. Nobody seems to understand that people with dementia are not willing to wait for what they want or to be flexible. I feel dreadful at the moment, I don't sleep but he sleeps well. I'm physically and mentally exhausted so I know this has to happen but that doesn't make it any easier.
The feelings of guilt are so difficult to deal with but you are doing the right thing. Keep reminding yourself that an exhausted carer is no good to anyone. It's impossible to care for someone else when you are feeling so drained. I really hope the respite is a success and you get some much needed rest.
 

Bettysue

Registered User
Mar 21, 2020
132
0
Thanks. That is a very helpful article. I started this thread after my partner had had a week of respite.Sadly on Monday he went into full time care and as you can imagine it’s a roller coaster right now. I found the section on emotions very relevant . There is great relief that I’m no longer dealing with the demands of caring for him but there is such an emptiness now. I know in my head it was the right thing to do but I feel as if I’ve cast him adrift and taken him away from his home.
 

Kebuck2012

Registered User
Nov 28, 2012
49
0
My partner returned home on Monday after a week’s respite. This was the first time I had arranged respite as I had put it off because of the need for isolation which is now no longer mandatory as long as testing is done.
I had looked forward to some freedom and to a large degree I enjoyed the break and caught up with sleep and visited a friend for a few days. I worried that he would not settle and become agitated but the care home reported that he slept well and was quite settled. He apparently told them he was missing the dog….don’t think I got a mention!
When I collected him he seemed quite bewildered and that day and the next slept a lot which is normal anyway. I think he is slightly more confused than before but his dementia is moving on quite quickly now so maybe that would have been the case at home too. Unfortunately he has started getting up during the night every night and wandering around the house. This was happening before the respite but it has wiped out any benefit as I’m so tired again. I thought the respite would give us both a break and enable me to have him at home for longer. I almost feel that it has made me feel worse about the whole situation as I can’t see myself carrying on for too much longer. My friends tell me it’s time but having seen the reality of him in a care home the guilt is huge. So in a way it’s been a reality check and the reality is bleak.
I cared for my mum and through local authority had respite - I found it so upsetting packing a case in secret to take mum to a care home. During the week I was filled with grief and that was 2013 mum died 2015 and I still feel a bit of guilt.
 

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