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Respite care

Vitesse

Registered User
Oct 26, 2016
260
0
I have resisted the idea of Respite Care for my husband, but I am gradually getting to the stage where I may have to contemplate it. Am I correct that anyone in England who is self funding has to pay the full cost of any respite care and also must find a suitable home themselves. I thought I’d read that some local authorities fund one or two weeks of respite, but I may have misunderstood that.
 

lollyc

Registered User
Sep 9, 2020
593
0
I have resisted the idea of Respite Care for my husband, but I am gradually getting to the stage where I may have to contemplate it. Am I correct that anyone in England who is self funding has to pay the full cost of any respite care and also must find a suitable home themselves. I thought I’d read that some local authorities fund one or two weeks of respite, but I may have misunderstood that.
Certainly the case in our area. If you're self funding SS really don't want to know! They may be able to act as "broker" for you, to find a care home, but, as you're paying you may as well make the choice yourself.
Care homes in our area were only offering a minimum of 2 weeks respite @ £1250 / wk.
 

Gilly1952

Registered User
Jun 19, 2017
24
0
Kent
I have resisted the idea of Respite Care for my husband, but I am gradually getting to the stage where I may have to contemplate it. Am I correct that anyone in England who is self funding has to pay the full cost of any respite care and also must find a suitable home themselves. I thought I’d read that some local authorities fund one or two weeks of respite, but I may have misunderstood that.
I'm at the same stage - regular respite would be so helpful in being able to keep my husband at home for as long as possible. When I had a Carers Assessment I was told my mental health was at risk and I needed to have regular respite but was then told that because I'd be self-funding the only help they could offer was a list of web sites that support mental health issues and a local authority directory of care homes. I have so far visited two care homes that said they offer respite. The first one seemed nice but they were very vague about when they might be able to offer a trial week - I've since discovered that they failed a CQC inspection and that was why they were so vague. So I've crossed them off my list. I visited another home last week. Again it all seemed very nice and I've said I'd like to go ahead and book a trial week but so far I've not been contacted for the promised "assessment" that will determine the level of care required.
When you are already stressed and trying to juggle a million and one things on nights of broken sleep, it seems you have to be very determined and patient to actually find the respite that you need.
 

Libbybookworm

New member
Apr 6, 2018
6
0
My OH was diagnosed with Alzheimers eight years ago. I am his sole carer and was offered three hours a week respite care earlier this year. This hasn't yet started, although I finally had a visit to assess the situation last week. However, I think it will do more harm than good now as OH has reached the stage of following me around all the time needing constant hugs, kisses and reassurance. When I break off from a hug he accuses me of not liking him. If I sit down he paces about, coming over for a slobbering kiss every few minutes. He wanders around at night too. I'm getting more and more worn out and wonder how much longer I can keep going.
 

canary

Registered User
Feb 25, 2014
16,138
0
South coast
Hello @Libbybookworm and welcome to Talking Point

Your OH has reached the velcro/shadowing stage because he now needs constant reassurance that he is not alone. Medication to reduce his anxiety might help a lot. If hes already on something then perhaps a tweak will help.

Please do take the respite, you cant go on like this without sleep. As for it doing him more harm - if you crack up (which you will do soon at this rate), he will have to move into care anyway.
 

Libbybookworm

New member
Apr 6, 2018
6
0
Hello @Libbybookworm and welcome to Talking Point

Your OH has reached the velcro/shadowing stage because he now needs constant reassurance that he is not alone. Medication to reduce his anxiety might help a lot. If hes already on something then perhaps a tweak will help.

Please do take the respite, you cant go on like this without sleep. As for it doing him more harm - if you crack up (which you will do soon at this rate), he will have to move into care anyway.
Hi @canary. Thanks for your advice. I'm hoping to speak with our GP soon for a review of his meds. Only on Donepezil at the moment but I agree he needs something for anxiety. He is also behaving in a sexually inappropriate way which is causing me anxiety so that needs addressing too.
 

Vitesse

Registered User
Oct 26, 2016
260
0
For the time being, I have given up the idea of respite in a care home. Trying to find a good one was making me too stressed. MH is also at the stage of needing constant attention and wanting me there all the time. i couldn’t get past the feeling that he would think I’d abandoned him if he was in a care home. He can’t understand what im saying to him, so I couldn’t explain to him it was temporary. he had a couple of falls over 3 days and the paramedic referred him to the crisis team who came in each morning to wash and dress him to give me a break. It all went well until he punched one of the carers!! (Not a hard punch, not damage done). Then they withdrew and left me to it.
I‘ve now found an additional PA to come in at the weekend to wash and dress him. Started last weekend and seemed to go OK. I didn’t realise how helpful it would be to have one less job to worry about.
Now I need some way of getting him to sleep at night. It’s 4.30 and I’m up for the 3rd time tonight!!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
74,665
0
Kent
Hello @Vitesse

It sounds as if you have got yourself into a Catch 22 situation. Avoid respite care and exhaust yourself physically, agree to residential care which may not be up to your standards and exhaust yourself emotionally.

I resisted respite care for my husband and ignored warnings of carer breakdown until I asked our consultant what would happen if I became ill. The answer was `A placement will be found for him. It meant if I became ill my husband would be placed anywhere where there was a bed.

You can imagine how this frightened me and made me put in more effort to find somewhere, acceptable at least, where my husband could go for respite care.

The plan was to see how he was after a week in respite.

He was fine. I was a wreck.

The home turned out to be far better than it looked and was my choice a few weeks later for necessary permanent care.

I`d found somewhere just in time.
 

lollyc

Registered User
Sep 9, 2020
593
0
It seems to me that we carers are our own worst enemies. In an effort to do the best for our PWD, we fail to see that if it results in us breaking down, the situation ends up worse than the one we have been trying to avoid. We are also guilty of projecting our feelings onto the PWD - we wouldn't want to feel "abandoned" in a care home, so we won't do it to our loved one. But, very often, the PWD does not view the situation that way, and settles well. Let's be honest, part of us wants to feel that we are indispensible. No-one wants to feel that they can be replaced by a group of strangers in a care home, or, God forbid, that they can do a better job than us!
 

Vitesse

Registered User
Oct 26, 2016
260
0
Thank you Grannie G for your thoughts. Deep down, I know it would be a sensible path to go down, but somehow can’t bring myself to take it. The weekend PA seems to have been helpful and I may think about more in home help. Like everyone, I always think I am strong enough to withstand this stress, and feel I should carry on. I have now viewed some care homes, so have a short list to call on if needed.
lollyc, you're probably right that carers project our feelings onto our loved ones. It’s too big a step for me to test that theory. So I’ll battle on for the time being and try to keep him comfortable and contented.
 

northumbrian_k

Volunteer Host
Mar 2, 2017
1,625
0
Newcastle
I understand your trepidation @Vitesse but from my experience a spell of respite care can be good for both parties. We were lucky to have a dedicated respite centre (no permanent residents) that allowed both short and longer stays. Care homes may insist on a minimum period.

My wife's first stay was for just 3 nights but what a relief it was for me to get some time to myself. She enjoyed the stay and soon got over any additional confusion it caused. I was encouraged to try again for longer periods. Not only that, it opened my mind to the possibility that she might benefit in many ways from having full time support and company beyond what one person could possibly provide.

By the time of her longest 10 night respite stay I had already viewed several care homes. It wasn't that long afterwards that she went for a trial stay at the one I thought she would like. She has now been there 2.5 years. Placing her there was the single best decision I made for her well-being and my own.
 
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lollyc

Registered User
Sep 9, 2020
593
0
@northumbrian_k, I hadn't heard of anything like that, but it sounds such a good idea. In our area respite seems to be minimum of 2weeks. If you just need a couple of days off - hospital, family wedding etc., or just a break - that seems excessive, especially if you 're self-funding.

@AbbyGee - easy to point out to others, less easy to practise what you preach! Still, I think acknowledging / accepting we have these feelings is a step in the right direction.
 

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