I am disabled. My wife is disabled. I am her carer and she is mine. We are not well suited to being carers because we are both disabled…
We also have two young children that without any disabilities need round the clock care. They are in school and nursery 5 days a week but term-time only.
My wife is on long-term unpaid sick leave from her work. I have recently been let go due to incapacity due to ill health. I did get a very small severance package but that’s already been spent:
We hire a nanny/babysitter a couple times a week to help with the children and some housework.
My wife is a spender. It took years to wean her off of buying £100s per month on lotteries but she has admitted she has simply switched that mass spending out on ebooks - again £100s per month.
We are on benefits - the pleasantness of UC for those that don’t know is it is one UC account for us both and it can only accommodate one Carers Allowance payment and one Capability for Work payment. I actually don’t recall off the top of my head if we have put it down as one each or both for one of us.
We cannot afford to go on at all once my severance money runs out (by the end of May if we’re lucky) but we desperately need support.
Does anyone know of any charities or volunteering organisations [in Bristol!] that can provide help around the house and/or with caring for children [outside of school hours!] for free?
I am also personally miserably lonely as my wife’s conditions leave her chronically fatigued and when she has energy to interact she uses that for ‘whole-family’ activities meaning I don’t get any grown-up time with her. She is often asleep in the evening before the kids are so I have all my evenings alone.
The nights my wife is up for doing bedtimes, possibly due to lack of experience, she lacks the ability to control two young siblings who rile each other and their parents refusing to settle, taking advantage of their parents disabilities.
I haven’t an ounce of my own life and I don’t enjoy rushing around constantly for my loved ones without respite. For example I really needed a rest this afternoon and said I was going for a lie-down. 15-20 minutes later my wife came upstairs saying she was aching so wanted a lie-down and both the kids were doing separate things in different parts of the house so can I go see to both of them as they both seem to be getting riled up without a parent with them. It is utterly unfair to me but my wife is not choosing to ‘treat me this way’. It’s just our life.
Does anyone have any clue of how we can manage to not “suffer” through every day?
Hi @bristoldisabled, welcome to the forum. Sorry to hear that you are in a mess. Can anyone friends or family help with the kids?
Have you spoken to the GPS about this?
Have you spoken to social services?
This is one big problem with the system that very few people check on the carers.
Contact the carers helpline, either by phone or email and they should be able to help.
Try the red Cross, citizen advice. As like many places in the UK there are lot s of help but can be a minefield to find them.
HI. Welcome to the forum and for having the strength to post what you have.
Have you been in touch with the Carers Support Service at Vassells Road in Fishponds? Their phone number is 0117 965 2200 - https://www.carerssupportcentre.org.uk/ They cover Bristol and South Glos areas. (I’m in South Glos in case you wonder how I know them!)
They would be a good start for you, but they only open Mon-Fri. Other than that your GP should have a Carers Liaison Officer. Have you registered with GP that you are Carers? If so they should be in touch with you to offer support and see what needs you have. If you haven’t informed GP Practice, it is worth doing so asap.
I had a call out of the blue from our GP Carer Liaison Officer and she was able to check on my situation - which is nothing like yours - and was extremely friendly and helpful.
As @Michael_1910123 has advised, also make contact with the CarersUK help line - if you email you can give more details and they will call you back as that way they will have a chance to ensure they have the right info to hand for you.
Do you have a Social Worker at present? If so you should push them for more help, particularly with regard to the gambling etc.
Thank you for the specific signposts. I will contact both of them. I will ask my GP practice but I don’t believe mine do. If another local one does I may move practice though - already wish to see if another practice has better availability to book appointments (currently you have to call at 8am and are usually on hold from 15-45 minutes - this is of course the school run so rather impractical).
We are with social services and have gone through the council’s entire catalogue but what we need [general help around the house for ourselves and our children outside of school hours] simply does not exist. The best and only thing we can get is a slight discount for registered childcare.
We have social workers to talk to and the council have installed grab rails around the house for free which is good but the people we have talked to all agree that there just isn’t any consideration for a carer also being in need of a carer, let alone two people being each others carers. There is horrifically little support for disabled parents in any form.
@bristoldisabled you are welcome. Might be a bit of a long shot but do you use Facebook? The reason for this suggestion is some places have a local area page and maybe someone on there might be able to help, as I said before it is surprising who might know someone who could help. Just be brief on what you say on a group page on social media as there idiots on there.
Home-Start are amazing… unfortunately though they only offer help during the working day and on weekdays…i.e. school hours. Our daughter is at nursery (connected to our son’s school) Monday-Friday so they can’t support us at all - we have double checked with them!
so they can’t support us at all - we have double checked with them!