Hi everyone,
I care for my dear husband of 44 years whose health has been declining for the last six years although It is only since December that I have become a full time carer. He is in hospital again at the moment and I spend quite a lot of the afternoon with him as he is finding things difficult.
He is waiting for a CIC bed in a rehabilitation home as he isn’t well enough to come home but there is a big backlog apparently. It looks as if he will have to have dialysis three times a week fo life so things are going to get tougher I think.
I love walking and am averaging over 20 miles per week walking to and from the hospital every day but all other activities are on hold.
Carers Leeds has proved very supportive already but we are all just waiting at the moment!
Hey Monica
Welcome! Really sorry to hear about your husband. Really glad your local carers organisation is being helpful.
Great idea to walk to the hospital to keep your fitness up. REALLY important to look after yourself too. Is there anyone else who can visit your husband so you could take a day off? Would be good to recharge your batteries some times. Meet up with friends for a coffee, or whatever else you like to do. My Dad was in hospital and then rehab unit for 6 months and every day became too much. There is no shame in that.
Also really important that he doesn’t come home until you feel confident you have the support in place you need to cope at home. This is called an unsafe discharge. I.e it risks the patient being readmitted. But sounds as though you are a way off this point yet.
Best of luck
Do you think you are in receipt of all your may be entitled too.
Just in case both are needed.
The bible on hospital discharges … and … an online benefits calculator :
Being discharged from hospital - NHS
In short … by the book or … NO DISCHARGE !
Thank you for the replies and information. it all seems rather overwhelming at the moment. I tried the calculator and suspect we are not entitled to anything as we both have work and state pensions.
The people at Carers leeds seem to very well informed about the correct discharge as the hospital were definitely leaving me out of the loop. I think things are going to happen within the next few weeks but everything is so “up in the air” at the moment.
Just to rejoin my walking group on a Saturday occasionally would be wonderful but I don’t know if it is going to be possible.
Hi Monica
Have you downloaded the PDF from LEEDS.gov
https://www.leeds.gov.uk/docs/Help%20to%20pay%20your%20non-residential%20social%20care%20and%20support%20costs.pdf
Please be aware, one very important sentence in here is
From April 2019, no one has to pay more than £453.00 per week no matter how many services they receive, regardless of their financial circumstances.
In my time as a carer the limit was under £300.00 so it has gone up BUT I don’t think many local authorities do this.
This will help with your budgeting for care costs at home and allow you to accept any and all you are offered in the way of a care package for hubby and extra care to help your needs which costs over and above the £453.00 per week.
KR
PS If you are really sure there’s too much money in his name to qualify for any SS payment, you don’t have to have a financial assessment. My Mum didn’t but still got contributions over the cap set at the time.
Thank you Elaine. I’ve downloaded the document and will study it this weekend. A quick glance through makes me think my days of all day walking with the Ramblers are over - it all looks very expensive!!!
Will definitely need help to sort it all out I suspect.
Don’t forget about Attendance Allowance which is a TAX FREE social security benefit which IS NOT MEANS TESTED (doesn’t matter if you have won the lottery!!!) and is for people over the age of 60 who need help with personal care.
The telephone number to ask for a claim form is 0800 7310122…
Kind regards
Joan x
Also, another point to rember is NHS Continuing Health Care. . This is Free funding (depending on outcome of assessment) . Again NOT MEANS TESTED
PLEASE "Google " . You really need to know about it…
Ask your local social services for the assistance of a social worker who will be able to assist you.
My mum has just been awarded Continuing Health Care which is such a relief as she would have been deemed as self funding and her house would have had to have been sold. But it was my determination and perseverance and doing my research into this benefit that she has finally been awarded it…
Joan
PPS attendance allowance is in the patients name , NOT in the name of the carer. X good luck. X
Monica,
Welcome to the forum. Sorting things out is a bit like Snakes and Ladders!
There are lots of us here who have been through similar things, so feel free to say “How did you…” about anything you are worried about.
No time like the present…
THANK YOU SO MUCH everyone. I don’t know how I missed the info about the attendance allowance but I did. I think I was just looking at it as a carer and not that the person who needs help has to apply.
I have downloaded the form and will fill it in and send it straight away as I think I’m right that they don’t pay until my husband comes home.
There is so much to take in but I have taken all your advice on board. I will contact Carers Leeds on Monday and see what they have to say. Hopefully they will help but you are right - knowledge is power.
I have just read through the attendance allowance application form - they certainly don’t make things easy do they?
I don’t think I actually have all the information they require especially the medical stuff. My husband has numerous medical conditions and has seen countless consultants - how on earth am I suppose to get the info they want?
Carers Leeds is supposed to be hospital liaison support - I wonder if they are they the people to ask for help to fill in the form?
Goodness - feeling bandjaxed already! 
Do worry those of us who are use to filling in these types of forms are old hand at it.
At first It looks daunting but you break it down it to sections.
Get some post it’s ready to mark pages etc. Where you may need to revisit.
G.P. will have much of the info. Any old/new hospital appointments letter are good evidence.
All these forms are evidence base.
When filling in the AA form, the key issue is the amount of help needed with day to day living, not what the diagnosis is. Don’t delay in sending in the form, get your claim in asap and if they need any more info, they will ask for it. Every week you delay could mean missing out on money you really need.
I asked DWP to help me fill in the form for PIP, as my arthritis is bad. They sent someone who was really helpful - he was there just to fill in the form, not assess my son with LD. He pointed out additional things I might have missed! The claim went through smoothly.
Yes!! Get someone to help you fill in the AA form asap!!!
I think there is a section which has also to be signed by the GP. (There was years ago!)
Anyway, just make sure it’s YOU who posts it on to AA people. Dont rely on GP posting it! I know of a case where the GP fotgot to post it!!!
If hubby is eligible the AA payments would be backdated to when the AA people received the form. So that’s why it’s so important to get it completed and returned at the earliest opportunity.
Good luck again!
Joan
Thanks again everybody.
I can see that I’m going to have a very busy day tomorrow!!
When dealing with DWP always, always always send it by Recorded Delivery. Then you have proof that they received it. I once made a claim for something and it took them six MONTHS to find it again.