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No respite care and I can't stop crying - Carers UK Forum

No respite care and I can't stop crying

For issues specific to caring for someone with dementia.
OK, so forgive any typos as I am writing this with tears in my eyes and can't see the screen very well. My husband and I look after my my mum at home and although she is not ready for a care home just yet she does have difficult moments that we have to deal with and bad incontinence. Our daughter is getting married next year and unfortunately we are unable to take my mum with us but it would mean us being away from the house for a couple of days. I phoned Social Services to ask about respite care and was told 'Sorry, there is no funding for respite care until further notice' I said we were looking after her 24 hours a day and were we expected to do so without EVER having a break. The reply was 'sorry' again and that we would have to do our own private respite care. This was bad enough, but this is not the only issue, as I was prepared to have to pay. The real shock is that I have phoned a few care homes to ask about respite care and so far each one has said that they will only do a minimum of 2 weeks and each week is just under £1,500. So I would have to pay nearly £3,000 to attend my daughters wedding. Even if I made this a full holiday break I would not have enough to actually go anywhere. I am so upset I can't even think straight. My husband has even mentioned one of us having to miss the wedding. I am really hating my life at the moment. If it goes on like this I will end up in hospital.
Hi E ... a depressing post to say the very least.

Low millions of us are sharing the same predicament ... what's " Advertised " as respite care is not worth the paper it's written on.

I would bounce the problem off the CUK Advice Team ... contact details follow :

https://www.carersuk.org/forum/support- ... line-24147

CUK are forever advancing respite care as a solution for many carers :

https://www.carersuk.org/help-and-advic ... ng-a-break

Let them sort out a REAL PRACTICAL case !

AGE UK ... do NOT discount them :

https://www.ageuk.org.uk/
Thank you, I will give it a go. I just need to stop crying first :(
This is CarerLand ... tears are more than acceptable !
Hi e,

First a big (((HUG))) from someone who has supported or cared directly for TEN relatives.
I disagree with your statement "she isn't ready for a care home yet". It is NOT HER CHOICE.

Ultimately, it is YOUR choice, you cannot be forced to care for anyone, not even your husband!
So tell us a bit more about mum, age, disability, benefits etc. and we should be able to help.

Also, how old are you and your husband. Are you retired, or still working?
e_1907 wrote:
Fri Oct 18, 2019 11:34 am
OK, so forgive any typos as I am writing this with tears in my eyes and can't see the screen very well. My husband and I look after my my mum at home and although she is not ready for a care home just yet she does have difficult moments that we have to deal with and bad incontinence. Our daughter is getting married next year and unfortunately we are unable to take my mum with us but it would mean us being away from the house for a couple of days. I phoned Social Services to ask about respite care and was told 'Sorry, there is no funding for respite care until further notice' I said we were looking after her 24 hours a day and were we expected to do so without EVER having a break. The reply was 'sorry' again and that we would have to do our own private respite care. This was bad enough, but this is not the only issue, as I was prepared to have to pay. The real shock is that I have phoned a few care homes to ask about respite care and so far each one has said that they will only do a minimum of 2 weeks and each week is just under £1,500. So I would have to pay nearly £3,000 to attend my daughters wedding. Even if I made this a full holiday break I would not have enough to actually go anywhere. I am so upset I can't even think straight. My husband has even mentioned one of us having to miss the wedding. I am really hating my life at the moment. If it goes on like this I will end up in hospital.
Crying is acceptable. I have literally sobbed before too. The last time I was sad and crying was when my mom decided she could not care for her son any more so I had to intervene and be his guardian. I cry all the time too. I have also contacted social services in the hopes of getting aids and equipment, and was let down by them. Have you had a needs assessment done or not?
We have been given quite a few aids and equipment including a stairlift which we had to wait a year for. I just feel really let down that there is no one to help me get respite care even though I am prepared to pay. All I am able to do is just ring from one care home to another in the hope of finding someone who can take her for a few days only and not have to pay for 2 weeks minimum. It would also be nice to have a weekend or mid week break sometimes as I have not had a break away for over 2 years but it seems impossible to do when you have to sort it all out yourself.
e, when did mum last have a formal Needs Assessment from Social Services, and you, a Carers Assessment?
Is mum claiming Attendance Allowance?
What is mum's formal diagnosis, especially the cause of her incontinence?
How old is she?

Crying endlessly shows that you have had ENOUGH, and that something needs to change.
Hiya,
As I understand it, it shouldn’t be you paying for any care, respite or otherwise, but Mum. If you have received some equipment etc, then presumably Mum has had a needs assessment but have you had a carer’s assessment? That may be a step forward if not.
You will always regret it if either of you miss your daughter’s wedding.
Am I correct in the assumption that your daughter is getting married in a location at some distance from where you live? I presume that you have been checking Care Homes in your vicinity. What about Care Homes within, say 20 miles around, of where the wedding will take place? Would it be possible to take Mum that far?
If there’s no possibility of funding, or Mum paying, and absolutely no alternative but to pay for 2 weeks, could you afford it? (On top of wedding expenses). If so, why don’t you take advantage of the 2 weeks and take a break yourselves before/after the wedding. If it has to be 2 weeks, then use the 2 weeks. Even staying at home and taking a walk or going to the pictures or down the pub, sleeping in.
Does Mum have carers? (if not why not?) A possibility might be for a live in carer to stay at your house with Mum for 2 or more days. Could be worth a try?
Please do not take into consideration Mum saying,’ I don’t want’ or ‘I won’t go’. Was she at your wedding? Was your Dad? Should her ‘wants’ be allowed to ruin this special day? You might have to be very firm. If you can get her into respite, then you know she is safe and cared for, warm and fed. You sound as if you are very near to losing your own health. I suggest that it is time you seriously considered a permanent placement for Mum in a Care Home before she is forced to go anyway because you are ill.
We don't have carers because my husband is her carer at home while I am work and then I take over when I get home. She used to have carers when she was on her own but they really didn't do very much and we could see that she was suffering. She was gaining so much weight eating out of boredom and forgetting she had eaten so eating more. She suffers with osteoarthritis and the weight was making mobility worse. Since being with us she has lost weight and we are getting her to do exercises (reluctantly) to strengthen her leg muscles so she is more mobile than she remembers she is. I have battered the doctor to review her incontinence medication and finally she has changed it for a different kind. The pharmacist even commented that she should have been given the latest medication years ago and he couldn't understand why she was on the one she was instead. I told him that I had been telling the doctor over and over and over that the medication she was on was not doing anything and she could have saved us all years of suffering especially mum. She has also asked for the bladder nurse to visit again, something we have been pushing her for and finally she has done it. It was the doctor at the dementia clinic who assessed her recently and said she was not bad enough to put in a home yet as there were people in a much worse state and so if we wanted to put her in a home we would have to fund it privately which we can't do. It's not that she is a problem to look after, just that we need a break away (especially for the wedding) which we are happy to pay for but there doesn't seem any where that will take her for a few days. Even if I had to pay for a week it would be better than paying for 2 weeks which is much more than we can afford.