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.