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Desperately worried - Carers UK Forum

Desperately worried

Share your ideas about the practical side of caring.
Hello guys,
I'm really hoping that someone can give me some advice, and hope that I've posted to the right board here.
I'm a 55 year old woman and I'm currently caring for my husband who is 22 years my senior aged 77.
He has many complicated illnesses which have mostly manifested since he retired aged 65, and we now find ourselves in the situation that he is in hospital with a uti after having suffering a stroke 6 weeks ago. He did come home following the stroke but has deteriorated so much in that time, he can barely walk now and I think he may have the onset of dementia as well.
We live in a privately rented house and have lived here for 18 years, very good landlord so we've been lucky, however, I'm really very fearful for the future, if my husband goes into a care home or passes away, what will I do?
We have no savings, although he does have an insurance policy but it's not for very much, and we live on his state pension, and his two private pensions which don't amount to much, also his attendance allowance, and housing benefit pay the majority of our rent which we top up ourselves and I get carers allowance now which I didn't apply for until earlier this year.
I also have my own health issues following stage 3 cancer 16 years ago, which has left me with a very unpredictable and embarrassing condition called Radiation colitis, this condition will make it very difficult for me to work, due to needing sudden and frequent toilet breaks, but I'm willing to try anything to be honest.
This whole situation is making me feel extremely anxious and is aggravating my colitis, which is largely stress related so you can imagine the effect this is having on my tummy.
What will happen to me if he doesn't come home? Even if he does come home,I know it's only going to be a reprieve really...the inevitable will happen sooner or later and I just can't figure out what I'll need to do at that point.
I lost my mum 2 years ago and I'd cared for her as well, as she was 89 years old and blind, in fact I'd cared for them both at the same time and it's all taken it's toll on me physically and mentally, I'm exhausted already and now I'm struggling to sleep or eat due to the worry.
I have no other relatives, i'm totally alone, spent all Christmas alone as he was taken into hospital the day before Christmas eve.
Please someone, tell me what will happen to me!
Carers UK has a brilliant helpline to talk you through everything you need to consider. DO NOT PANIC!Start a notebook/diary and write down everything which you are worried about, put them in order of priority, and work down the list. There's a huge amount of knowledge and experience here, feel free to ask us "What did you do when...?" You'll probably get a variety of different ideas, choose the one that most suits you.
Has your husband had a brain scan? You need to know what the extent of the stroke damage is so you can plan properly.
Do you have Power of Attorney for your husband?
I'm really concerned that you don't mention any help arranged by the hospital - did they offer any care package?
Dear Dulcie - I'm not in the slightest surprised you are so down - it's all landing on top of you and it can be hard to see a way forward.

I would get in touch with the company running his private pensions, as they usually are set up so that when the main pensioner dies, their spouse gets half for the rest of their life (that's what happened to my husband's work pension when he died), so that, hopefully, will be something, even if not a great deal.

Also, do look up the government web site on 'newly widdowed'. I know it's difficult to think about that, but there are situations in which some kind of payout by the government is made.

I would also get in touch with your council's housing department and so on, to see what the situation will/would be in the event of (a) your husband's death and (b) him going into a care home.

I can understand it's scary on multiple fronts, but in the end, facing the fears with facts at least shows what you DO need to prepare for, and what you DON'T.
This is taken from AgeUK's Factsheet 39 - "Paying for care in a care home if you have a partner":

5 The 50% private pension and annuity disregard
You may have a significantly higher or lower income than your partner.
The rules set out below are designed to protect one partner from
possible financial hardship as a result of the local authority financial
assessment for residential care.
If you enter a care home permanently and have a personal or private
pension, an occupational pension or a retirement annuity, you can
choose to pass 50 per cent to your partner remaining at home. This
amount must be excluded or disregarded from your local authority
financial assessment.
If you have more than one of these types of income, they can be added
together to reach a 50 per cent figure.
Your partner may remain at your previously shared home or can live
anywhere other than the same care home as you.

Before deciding whether to take advantage of the 50 per cent
disregard, you should assess whether it benefits your partner
This is because receiving extra income can affect their entitlement
to means tested benefits such as Pension Credit, Housing Benefit
or Council Tax Reduction. Seek advice from one of the advice
agencies listed in Useful organisations.
Hi and thank you so much for your fast responses.
My husband has had scans mri and ct but trying to get any information from the hospital is a nightmare, everyone I ask seems to know nothing, they're all so busy, and just pass the buck, and can never seem to pin a doctor down when I'm there so I don't know the results of his scans. They said he'd had a TIA ( mini stroke) that was 6 weeks ago on 11th November, and on the morning of the 23rd December I thought he'd had another stroke because he was unable to sit up without falling sideways, and he was confused, but it was soon apparent that he had a UTI because when they examined him and touched his tummy he was in obvious pain although he'd not told me that he had any pain...despite me asking him.
I received a phone call this morning from the hospital and they're looking towards trying to find a rehabilitation bed for him i think, because of he's unable to walk or stand how can I possibly have him home, I wouldn't be able to lift him on and off the loo ect. After the call I went straight up to the hospital in the hope of finding out more but it was a physio therapist who called me earlier, and she wasn't there, So that's as much as I know, but as I said, trying to get any info is so difficult.

I will try to talk to his private pension providers but in the past they've been unable to talk to me without him being present and at the moment he's to confused to do so... it's difficult enough on a good day to get him to understand what anyone is saying on the phone, let alone now, but I'll try.
I don't think the council would help me because I wouldn't be seen as a priority from what I've read, and I'm not sure that I'll have enough money coming in to pay the rent and bills here.
I'm just so tired, what with hospital visiting ( the hospital is over 10 miles away) , travelling, and very little sleep I just don't have the time or energy at the moment to be sitting in the council offices all day. Sorry if I seem negative, it's just that I can't see any light at the end of the tunnel at the moment, perhaps if I could sleep better it would help but thank you for the suggestions and advice, it's so nice to chat to people who understand.
You don't need to worry about the rent etc at the koment, as he will still get his pension whilst in hospital, however you will need to tell DWP ii he stays in long term. Have you spoken to the PALS Team at the hospital? Patient Liason. They will be able to liase with staff. Do NOT visit every day, it's exhausting and you need to be as fit and well as possible. My mum was once in hospital for seven months! Attendance Allowance will stop after 4 weeks in hospital. If you go to the quick links and click top left of this screen, there's loads of information about income and benefits etc.
None of your problems is immediate and you sound worn out. Treat yourself to a few days rest and set aside your problems to deal with afterwards. You'll be much better able to deal with them then. Don't agree to any type of discharge package until you've got the answers you need about your husband's health and well being. This is the one bit of leverage you have. Use it to get what you need. If you're not familiar with dealing with hospitals etc you will probably have expectations of far greater levels of cooperation and communication than you will ever receive so reset your expectations and be prepared to have to fight for everything. Sad but true.
PS if it's any consolation I was home alone on Christmas Day too.
So was I, NHS! Dulcie, I,recognise that combination of worry, panic and exhaustion. All those worries together must be overwhelming. I would suggest writing them all down and listing them in order of urgency. Sometimes it is helpful if you can tick things off or even notice that something you were worrying about never happened. It is the old adage about how to eat an elephant, Ie one bite at a time!

Finally, if you find your health getting worse as a result of your worries, it may be worth speaking to your GP. I personally found a short course of anti depressants took the edge of my anxiety and made it easier to cope.

Also talking to us may help. Most of us have been in similar situations at some stage. I do hope you get some answers about your husbands health soon, take care Anne