New here and not sure what to do

Hi all,
Thanks so much for this forum which has helped me already, just to recognise some of the feelings I have in others. Although I am sad that so many of us are frustrated and upset.
I am not sure where I stand on whether I am a carer or not. My partner left work nearly 4 years ago, this is a long story, but at the time he was having some trouble with his health but was still able to work, but his work took a very black and white view on things (improve your attendance or leave) and I thought it would be a temporary thing for him to regroup and find something else that was more flexible. It has not been a temporary thing. And he has just got more unwell and more depressed.
He’s not receiving any benefits or anything. I work full time and pay all the bills. He does stuff around the house as much as he can.
He suffers with chronic pain, arthritis (he needs a hip replacement), and some other things I won’t go into cos it will take forever. He refers to his life as being “trapped in a box of pain” or “crushed under an unbearable weight of pain”. Some of his health problems were made worse by some unfortunate mistakes and he had a lot of traumatic experiences as a child. This has given him a distrust and sometimes a fear of doctors.
The health system now struggles with him. He seems to have been written off as depressed and this seems to mean that his physical health problems are treated as all in his head. He is depressed but he has real physical health problems. I wrote to his doctor and begged them to help him. They read the letter and said to him at the next consultation “what a lovely letter your partner wrote”. And that was it.
Lockdown and covid and his increasing pain are making life very difficult. I have to work from home. So we are in the same place all day every day. I go out for walks and visit friends but I don’t feel like I get a break, although I know I am lucky to be able to do this. He sleeps sometimes, but is often woken by his pain, and he’s hypersensitive to noise so any sound from the neighbours (or me) wakes him up or stops him sleeping. I have to tiptoe around all day because he might be getting half an hour’s sleep at any time, and that might be the only time he sleeps in that 24 hour period.
So he’s in pain, lacking in sleep, depressed and frustrated, and angry, and there seems to be no help.
I feel like I don’t have anything left. I don’t know what else I can give, and I am starting to lose my patience and my empathy. And I know that is hurtful for him. And I know his life is difficult. But mine is too, and I don’t know how to keep going.
When things are going well, we are happy. But lockdown has put extra pressure on everything, and particularly because even though he’s not officially shielding we’ve been being extra careful because I am worried he’ll get very sick if he gets coronavirus. So much isolation. And he gets worse over winter, as the cold makes his pain and mobility worse, and each winter is harder than the one before.

I didn’t mean to write this much. Apologies. I don’t know whether this is the right place for me as I’m not registered as a carer and a lot of people are caring for elderly parents etc, this doesn’t seem to match the definition of caring. But if anyone can offer any sage advice or support I’d very much appreciate it.

My goodness you are going through a lot. Until your partner look for some pain management. Life is going to be very difficult. A G.P. can refer a person to a pain management clinic. Usually, this happens if all other avenues/medication have been explored.

When dealing with G.P.'S one has to be specific on expectations. It’s necessary to demand help or be referred to a place that can help. My husband has rheumatoid Arthritis and there are many drugs that can help. Your partner needs to see a rheumatologist at your local hospital.

Everyone in a relationship should make a contribution to the home. It’s a two way street you can’t be expected to financially support both of you. I’m sure your partner could claim some benefits. What age is your partner?

Thank you.

He’s 47

Do you have any advice on how to broach the conversation about benefits? I don’t seem to be able to bring it up in a way that goes anywhere useful. I can understand it’s a hard decision to make and I am perhaps not being sensitive in the way I ask.

Pain clinic appointment deferred over a year now due to covid :frowning:

Yes, he’s work and paid NI and is entitled as well as the next person. We pay in to the system to benefit when we might need too.

A rheumatologist has more knowledge on associated pain for Arthritis than the pain clinic. That’s not say attending a pain clinic would not be useful.

People with arthritis have what’s known as flare ups. Where it necessary to have a course of higher levels of medication. My husband arthritis started at 39. His is now 68 every two years there is a charge to the pain level. Your partner with the right medication WILL be able to manage in the longer term.

Thank you, again.
It looks like all he’d get is a PIP, which isn’t nothing, but everything else seems to be based on my income and my savings. Both of which are too high for us to qualify for anything else, if I read the benefits calculator properly.


Extra money and help PIP entitles you to - Citizens Advice.

Pip is a gateway benefit and that may give access to claiming ESA and being in the support group. Which means the person is unable to work etc.

I think a discuss with Carers UK helpline and/or Citizens Advice would be a good idea.

It’s important to start somewhere the experts above should direct you to the place.