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My husband suffered a massive bleed to the left side of the brain in March and was in hospital till the 10th June, this has left him totally immobile and can do nothing for himself, also doubly incontinent. His stroke consultant at the rehabilitation ward has told me there is nothing more they can do for him, a care home would not be an option as he was so weak, all they could offer him was a long term hospital bed basically till he passed. I decided at that point he should come home. He has two carers come in 4 times a day for personal care and for the rest I am his carer 24/7 I have no immediate family near by and now have been in the house for 4 weeks without respite of any kind. At the moment all my shopping is done online but as pensioners with only the basic pension and pension credits this can be expensive. Because of our financial position I cannot hire a sitter privately to enable me to go out for shopping etc. I have had my carers assessment with a social worker and opted for option 4 which keeps the local council in charge of arranging my husbands personal care and direct payment for me to find respite sitters. I have been told this can take up to 8/10 weeks to be approved and in the meantime I still have no sort of respite. I do not want time away as this would mean putting my husband in hospital, all I want is some time to be able to leave the house even just to walk the dog etc. Before this happened we were mainly in the house anyway only going out for shopping once a week and walking for exercise so I feel that I am not asking to much.

Hi Eleanor,

I am sorry to hear about your husband’s stroke, how devastating for you both. My heart goes out to you both.

Your husband should be entitled to fast track continuing health funding - which means all his care is funded. There are often less caps on the amount of support provided if you are awarded this funding.

Try and use the time that your husband has paid carers to get out of the house for even a walk around the block or to potter in the garden, if you can.

Are you being supported by a hospice?

Although his care needs are too much for a care home they shouldn’t be too much for a nursing home or a hospice bed and that is as another option for you to consider. This would allow you to continue as his wife and advocate without having to do all the in-between care yourself.

You might be interested in the Virtual, Zoom Cuppa for carers sessions run by Carers Uk - whilst you cannot leave the house Online meetups | Carers UK


Hi Eleanor

So sorry to hear of you and your husbands situation. As Melly1 as asked are you connected to a local hospice. Because hospice’s have volunteers and I’m sure someone. Could come and give you a few hours a day.

Scroll to end of page.

How can I find a local hospice?
To find a local hospice:

ask your GP or district nurse
use the end of life hospice services search
contact Hospice UK
use the Find Me Help service on the Dying Matters website

If you feel at times you would rather be in close proximity. When someone came to help with respite for a few hours. You could just go and have a long relaxing bath etc.

Other than pension credit. What other benefits are you and your husband claiming.

Thank you for your replies, this has given me some new avenues to look into. I have applied for Attendance Allowance for my husband but still waiting on the outcome and until that is decided I cannot apply for carers allowance.

What age are you as you are unable to claim Attendance Allowance. if you are in receipt of your state pension.

As your are claiming pension credit does that mean you are both state pension age.

You cannot be effectively held prisoner like this.
Has no one mentioned NHS Continuing Healthcare to you??
This would enable your husband to have all the care he needs entirely free of charge, either in residential care OR at home.
It is dreadful that this option was not arranged prior to discharge.
Was it explained to you that all care required for the first 6 weeks should be entirely free?

Contact the hospital, and ask to speak to the CEO’s office, and make a formal complaint about this.

Also make a formal complaint to the LA about failure to arrange someone to be with your husband so you can go out. This should be immediately available, there should be no waiting time.
Go to the LA website, and search for Adult Services Complaints. It’s quick and easy to complain online like this, and will be dealt with by Social Services Head Office, not your own (useless) office.
No one will do anything without a complaint these days, that’s the way the world is I’m afraid. I wish it wasn’t.

My husband is 71 but I am under the retirement age at 64, I will be 65 in August, we have had pension credit before all the changes so still receiving it, if there are any changes to our circumstances I am not sure how that would affect us. I have complained to the Local Authority and Ayrshire & Arran health board, even got our local MP involved regarding respite for myself so that I could go out shopping etc but I am no further forward and still have none in place yet. As for my husband care at home I have no complaints with the carers and as this is personal care it is a free service provided by the local authority regardless of your financial circumstances.

Scotland is so much better than England in this respect. Maybe pop out to the shops when the carers are there?

The trouble with that is I don’t drive and the bus to the shops is 18 mins there and the same back so impossible to do in the 30 minutes the carers are allotted each visit

Eleanor are you connected to a local carers group. Carers groups usually have payed workers that can advocate/visit carers.

I feel you need someone to advocate and support you.

You should also be able to apply for a local carers yearly grant. And due to your current caring role. You should be fast track for it.

I glad to see your age at nearly 65 as you are aware you are a WASPI lady. And not being able to access your pension until your 66 birthday. Not that I would want to wish you’re years away. But at least a year away is better than years.

It also important that social services are aware you have not immediate transport.