Reflections on respite

Bettysue

Registered User
Mar 21, 2020
204
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.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Im sorry @Bettysue
Night time care is a killer - you cant maintain it longterm as you need sleep, but you cant ignore it either and it becomes impossible to keep them safe. I know the guilt over a care home is awful (though completely unjustified), but it really sounds like this is what you both need
 

lollyc

Registered User
Sep 9, 2020
947
0
Is he on any sleeping medications? Mum used to be up 6 or 7 times a night, but tablets have really helped with that. I had a bit of a battle with her GP, as they were worried about falls risks - but, as she was walking around in the dark, and trying to go downstairs, she was a falls risks by being awake.
I honestly don't think I could've cotiunued as were were. Lack of sleep is crippling.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,452
0
Kent
Hello @Bettysue

Deciding on respite care for my husband came after much soul searching when I realised I was nearing the stage of carer breakdown and didn`t want to risk him going to emergency care.

He was in respite care for a week, I felt 100% better and we were both glad to get him home.

Within a couple of weeks all the benefit I felt had been wiped out and we were back to square one. My husband was pleased to be home but quickly forgot where home was and who I was and so the challenges resumed.

If you were not happy with the care your husband received in respite, try to find somewhere else. If you were happy with the care he received put your practical head on and know the time for permanent care cannot be put off for much longer.

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!

Keep this in mind.
 

Bettysue

Registered User
Mar 21, 2020
204
0
Thanks for your reply. He is on 100mg of Trazadone which was prescribed when he was going through a very agitated phase.I’ve booked a phone consultation with our GP for today . He is always very helpful.
My fear,as you say, is him falling downstairs in the dark when he’s up and about in the night.
 

lollyc

Registered User
Sep 9, 2020
947
0
Mum has Mirtazapine (anti - deperessant, but some sedative effect), Quetiapine and, if required, Lorazepam. A veritable cocktail, I know, but it's the only way we (I) can cope. I did explain to the GP that the falls risk was greater by not medicating, and fortunately -if grudgingly - they did agree.
Ironically Mum fell (not an effect of drugs) and broke her leg, which has put paid to any night wandering, Unfortunately, it didn't stop her being awake all night!
 

northumbrian_k

Volunteer Host
Mar 2, 2017
4,417
0
Newcastle
Although I did not plan it that way, my wife's periods in respite care gave me the courage I needed to take the next step. When I picked her up after the first short respite it was as though nothing different had happened. For her, other than thinking that we were on holiday together, it did not seem to matter. I might have been gone 3 minutes rather than 3 days. Once the stage of needing respite has been reached it is time to give some hard and realistic thought to what happens next. For us it was more periods of respite, including a 10 day spell when I went cycling with friends. By then I had inspected a few care homes and found one that I thought would suit her. My assessment of our situation had shown me that I could no longer meet her needs at home. Moving her to residential care for a trial period that soon became permanent was the best thing I did for both of us.

Circumstances vary. I am not saying that a care home is always necessary or the best solution. That is a matter for individual choice. But going down that route is neither betrayal nor the end of life as a couple. It is about finding the best response to very difficult challenges. It is hard to do without feeling guilty but there really is no need for guilt at doing what is right.
 

Thethirdmrsc

Registered User
Apr 4, 2018
744
0
When I got my OH back after 2 weeks respite I also thought that I would cope better, but you quickly get into caring mode and it’s very tiring., and he was slightly worse, and after the railway and day centre incident, it would have been even worse for both of us if he stayed at home. Since he has been in the hospital dementia unit, it’s been awful, I seem to have replaced the rage with tears and unhappiness. But I am hanging on to the fact that it won’t be too long before we get him settled somewhere and I can get into a routine of visiting
 

Bettysue

Registered User
Mar 21, 2020
204
0
You’ve had a tough time with the more extreme behaviour. I think I’m realising that I’ve done the best I can but I’m now becoming very stressed with it all whereas before I seemed to cope. Maybe it’s the onset of winter, the fact that he’s going downhill fast and the perspective the respite has given me. Anyway … spoke to GP who has increased his nighttime medication so let’s give that a go for a couple of weeks and see if there’s any improvement. In the meantime I’m looking at care homes to try and move towards a decision.
 

Gilly1952

Registered User
Jun 19, 2017
26
0
Kent
I am at the stage where I am just starting to look for respite for my husband because I know that I need to have a break, but the feelings of guilt are already beginning to trouble me. I've visited somewhere that seems very suitable and I've got a telephone appointment for an assessment to determine the level of care needed. And then the plan is to arrange for a trial stay.
On the one hand I'm desperate for a proper break but on the other I'm worrying about whether he'll be unhappy, will it make his dementia worse, will he be really angry with me - and then there's all the practical things like what should he take with him and I will need to get some name tags to name all his clothes and so on and so on...... Until I get to the point where I begin to wonder whether the benefits of respite will be worth all the stress of organising it. I had similar worries when he began going to a day centre once a week back in June and that has worked out really well. So maybe I'm just over thinking things.
 

lollyc

Registered User
Sep 9, 2020
947
0
I am at the stage where I am just starting to look for respite for my husband because I know that I need to have a break, but the feelings of guilt are already beginning to trouble me. I've visited somewhere that seems very suitable and I've got a telephone appointment for an assessment to determine the level of care needed. And then the plan is to arrange for a trial stay.
On the one hand I'm desperate for a proper break but on the other I'm worrying about whether he'll be unhappy, will it make his dementia worse, will he be really angry with me - and then there's all the practical things like what should he take with him and I will need to get some name tags to name all his clothes and so on and so on...... Until I get to the point where I begin to wonder whether the benefits of respite will be worth all the stress of organising it. I had similar worries when he began going to a day centre once a week back in June and that has worked out really well. So maybe I'm just over thinking things.
I am lucky, in that Mum has been reasonably happy to go to respite (twice), and seems to settle well. I didn't visit, or speak to her, but called to check she was OK.
The fact that your husband is happy with the day centre suggests he will cope fine with a care home for a couple of weeks. It may all go far better than you think.
There is another post on here in a similar vein - the problem is, if you reach breakdown, your husband may well be put into a care home anyway, and not one of your choosing.

As to what he should take - not anything you would want to see again! But seriously, clothes that can easily withstand hot washing - fleeces etc., not his best lambswool jumper. Write a list of what you put in his case, and check it off when he gets back, because you won't remember what you packed, and will spend weeks looking for the shirt that never made it back home!

Be brave... and enjoy some "me" time.

Going forward, would your husband be able to have another day at the day centre? Or somewhere similar? I found having those days that I knew were mine helped me get through the bad days.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Yes, if your husband is happy to go to day care then I think your husband will be fine in respite. I would "sell" it to him as a holiday in a hotel where he will be waited on hand and foot ;)
Do label all his possessions. I used this crowd for clip-on labels. They are very easy and quick to fix on and the firm delivered them the next day.
 

Gilly1952

Registered User
Jun 19, 2017
26
0
Kent
I am lucky, in that Mum has been reasonably happy to go to respite (twice), and seems to settle well. I didn't visit, or speak to her, but called to check she was OK.
The fact that your husband is happy with the day centre suggests he will cope fine with a care home for a couple of weeks. It may all go far better than you think.
There is another post on here in a similar vein - the problem is, if you reach breakdown, your husband may well be put into a care home anyway, and not one of your choosing.

As to what he should take - not anything you would want to see again! But seriously, clothes that can easily withstand hot washing - fleeces etc., not his best lambswool jumper. Write a list of what you put in his case, and check it off when he gets back, because you won't remember what you packed, and will spend weeks looking for the shirt that never made it back home!

Be brave... and enjoy some "me" time.

Going forward, would your husband be able to have another day at the day centre? Or somewhere similar? I found having those days that I knew were mine helped me get through the bad days.
Thank you, that's really helpful. At the moment there isn't an opportunity for another day at the day centre but it's something that I'll bear in mind should the opportunity arise.
 

Gilly1952

Registered User
Jun 19, 2017
26
0
Kent
Yes, if your husband is happy to go to day care then I think your husband will be fine in respite. I would "sell" it to him as a holiday in a hotel where he will be waited on hand and foot ;)
Do label all his possessions. I used this crowd for clip-on labels. They are very easy and quick to fix on and the firm delivered them the next day.
Thank you very much. I've been working on my "story" to sell it to him. It's hard sometimes having to tell little "stories", I've always abhorred dishonesty. But I'm starting to realise that at times it's necessary.
 

lollyc

Registered User
Sep 9, 2020
947
0
Thank you very much. I've been working on my "story" to sell it to him. It's hard sometimes having to tell little "stories", I've always abhorred dishonesty. But I'm starting to realise that at times it's necessary.
By the way, we had to supply incontinence pants (obviously only if your husband requires them), which I hadn't realised. Stupidly thought they might be included for £1250/wk!
Also, if he takes medications make sure you order enough to cover his stay. Unfortunately, last time Mum had respite, the care home re-ordered some of her medication (it ran out on her last day, which I knew it would), which caused total confusion all round.
 

Pauldaah

Registered User
Jul 15, 2017
8
0
Isle of Wight
I am at the stage where I am just starting to look for respite for my husband because I know that I need to have a break, but the feelings of guilt are already beginning to trouble me. I've visited somewhere that seems very suitable and I've got a telephone appointment for an assessment to determine the level of care needed. And then the plan is to arrange for a trial stay.
On the one hand I'm desperate for a proper break but on the other I'm worrying about whether he'll be unhappy, will it make his dementia worse, will he be really angry with me - and then there's all the practical things like what should he take with him and I will need to get some name tags to name all his clothes and so on and so on...... Until I get to the point where I begin to wonder whether the benefits of respite will be worth all the stress of organising it. I had similar worries when he began going to a day centre once a week back in June and that has worked out really well. So maybe I'm just over thinking things.
I could have written this post word for word.
Then last night he said ‘Is this the last night I will be here’
I was broken

Sue
 

Gilly1952

Registered User
Jun 19, 2017
26
0
Kent
I could have written this post word for word.
Then last night he said ‘Is this the last night I will be here’
I was broken

Sue
Oh Sue, it's awful isn't it trying to keep a balance between our own sanity and looking after the person we love.
I had the assessment with the care home today and they have offered a trial respite week from 6th -13th December. I've said yes and I've ordered name labels ready to put in his clothes. I'm really looking forward to being able to visit my brother and his family for a couple of days but I'm sure I'll have a few wobbles and sleepless nights before the 6th December comes around.
 

Pauldaah

Registered User
Jul 15, 2017
8
0
Isle of Wight
Oh Sue, it's awful isn't it trying to keep a balance between our own sanity and looking after the person we love.
I had the assessment with the care home today and they have offered a trial respite week from 6th -13th December. I've said yes and I've ordered name labels ready to put in his clothes. I'm really looking forward to being able to visit my brother and his family for a couple of days but I'm sure I'll have a few wobbles and sleepless nights before the 6th December comes around.
Yes Gilly it’s getting harder each day and if he carries on, ‘tonight will be the last night he’s here’! Going to get on the case tomorrow. Went to a look at a nice home last week, £1450, a week but will see if they can take him for a couple of weeks or anywhere less expensive that has vacancies.

Sue
 

Dianej

Registered User
Mar 27, 2021
126
0
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.
 

Gilly1952

Registered User
Jun 19, 2017
26
0
Kent
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.
That's very sad, I'm sorry you didn't have a good experience of respite. I don't know how my husband will react but I figure that unless I try it I will never know. The alternative is to just give up all hope of having any life of my own and I'm not sure I'm ready to do that without at least giving respite a try. This week I've been ill myself and it's been very hard trying to look after someone else when you aren't well yourself.
 

Staff online

Forum statistics

Threads
138,152
Messages
1,993,490
Members
89,813
Latest member
Sharonmatthews1976