No respite care and I can't stop crying

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 :

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

Taking a break | Carers UK

Let them sort out a REAL PRACTICAL case !

AGE UK … do NOT discount them :

Thank you, I will give it a go. I just need to stop crying first :frowning:

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?

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.

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.

If she has a diagnosis of dementia, then you must accept that gradually her mental ability will diminish. I would suggest that you have another assessment so that carers are available once more, and then you should be offered Direct Payments which can be used more flexibly, maybe saved so that the two of you can have a day off together.
As you are working, Social Services should be doing a Carers Assessment for you, looking at what you need to keep working.

The doctor was totally out of order in saying she isn’t bad enough for a home yet!! It’s nothing to do with him, not his decision to make. If mum couldn’t manage in her own home, or in your home without support, then she needs a lot of help. You have a right NOT to care, and that should be respected.

Get the SSD assessments done asap.
Does mum have over £23,000 in savings, or own any property? Just a Yes/No answer will suffice.

She doesn’t have savings, just a small property which currently her granddaughter husband and baby live in. To sell the house would mean kicking them out and creating a whole other problem as they cannot afford to rent anywhere. We do accept that she will get worse and one day we will have to sell the house. Her granddaughter is aware but at the moment it helps them out until they can get back on their feet. None of us want to create another issue and it makes mum happy knowing she can help them out. She is also available to help out when she can but they will be at the wedding too and so are any other members of the family (we don’t have a big family anyway). I didn’t think there would be such a problem just putting mum somewhere for a few days. It’s seems like I am asking for the impossible.


She doesn’t have savings, just a small property which currently her granddaughter husband and baby live in. To sell the house would mean kicking them out and creating a whole other problem as they cannot afford to rent anywhere. We do accept that she will get worse and one day we will have to sell the house

Expert advice here … a ticking time bomb … how long before detonation ?

AGE UK / SHELTER strongly recommended :

I contacted Age UK yesterday and they have referred me to their specialist advisers. I rang them and held in the queue for an hour while on my lunch break. I tried again later that afternoon and held for 35 minutes before I had to give up. They are closed by the time I get home so I can only ring when I am at work. I am going to take a day off soon so I can spend more time trying to get through as I will need time to talk to them too.

A positive step.

Like many charities still operating in the front line … Shelter / Trussells / CAB etc. … as opposed to those behind ivory towers … demand for their services comfortably excedes demand … just be patient ?

You need to find out exactly how her financial position would be treated by Social Services.
So first she should have a Needs Assessment, then a formal Financial Assessment. At the end of this, you should be given a written summary of how much she would have to contribute towards her care, either at home, or in residential care.

Google “Charging for Residential Care” and then look at “Capital Disregards” because under some circumstances, a property can be disregarded when assessing someone’s ability to care.

Can your house accommodate a live-in carer? If so, just Google “temporary live in carer” and have a look at what’s available. Mum may not like it (or the carer!), but it’s only for a couple of days and as long as she’s kept safe and given her medications, what’s the worst that can happen?

You and your husband absolutely MUST go to your daughter’s wedding - you’ll regret it forever if you don’t.

No a live in carer would be impossible at home, even for a couple of days. In the meantime we are ringing around from home to home to see if any of them can take her for a few days, like I said I have always been happy to pay for this as a few days is at least doable finance wise.

If you are still looking, possibly use a care broker such as CHS Healthcare, they look for care homes for respite and long term according to your preferences and their service is free .

Article below.

Most care homes do offer respite on a weekly basis, most near me minimum stay is a week but some don’t take respite cases for less than 3 weeks which is annoying!

How are you today? Did you manage to find a care home or not?