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New to forum - struggling - Carers UK Forum

New to forum - struggling

Tell us a bit about yourself here.
Hello I have joined the forum on the advice of my daughter who thought it would be a good idea to enable me to talk about how I am feeling and hopefully get support from those who understand.
I have been a carer for my husband for a lot of years but the last 2 years things have become increasingly difficult with him recently becoming a double amputee and he has other health problems including being on home kidney dialysis. Having been in and out of hospital for 18 months he is due to come home as soon as things can be put in place to enable him to get around the house in his wheelchair. As we live in a house not a bungalow this is a bit harder to sort out. Wish we had moved to a bungalow years ago but OH wouldn't hear of it.
I feel as though I have the weight of the world on my shoulders at the moment and am not feeling as strong as I did. I am worried about when he comes home will i be able to manage, I am feeling sorry for myself as my whole life revolves around daily hospital visits, which it takes me an hour each way to get to the hospital, and keeping the home running. And all I talk about to my friends and family is how my OH is doing. I am feeling like we have nothing to look forward to apart from him coming home and then it scares me the amount I will have to do for him. I certainly don't resent anything I do but my OH is not a man to express his feelings (its just the way he is made) but I could do with a few kind words from him at this moment in time.
Now as I read this back I am feeling guilty for even saying all this. Has anyone else felt like it and how did you manage? I know there are people out there who are a lot worse off than us and I applaud them for what they do and its when I consider this I feel terrible for moaning.
Regards Elsa
Welcome to the forum, Elsa. You've come to the right place for support and guidance. There are lots of lovely people here who will tell you that guilt goes hand in hand with caring and that you must take some time for yourself.
There will be others along soon to say hello too but, in the meantime, take a look around and join in anywhere you like.
Sending cyber hugs.
Hi Elsa and welcome to the forum
Fear of the unknown is always hardest and at the moment it is still unknown and you are trying to imagine what it will be like, so please stop and take each day as it comes. Please dont try and be superwoman, because you wont be able to do everything by yourself - it simply is not possible as it will be too much for one person, so you need to get a package of carers coming in to help you. The hospital should organise this before he goes home, but they often forget Image
Take every offer of help, because, as juggler says, you need to look after yourself in order to continue caring. Remember its a marathon and not a sprint!

If you have any specific questions do start a new topic where ever seems appropriate.

Thank you both for your replies.

Hi Elsa and welcome,

Don't compare your situation to others and feel guilty for it...no-one here will compete over who has it worst! It reminds me of when an idiot HCA in hospital disbelieved my sister's response of her pain score - he thought the imaginary pain he had given her as an example was higher than the actual pain she was in...it doesn't matter what hypothetical situation he gave, it would never be as bad as what was actually happening for her, purely because what was happening to her was real!

Now is the time to get the right supports in place. Get yourself a carers assessment-this should be offered by the social worker before your husband's discharge, make sure his care package will meet his needs, and see if there is a carers centre local to you. I don't use mine, but a few members here speak highly of them.
Thank you Frito
Hi Elsa. I'm a newbie here too, but there are lots of people here who can offer lots of help and support. You mentioned having to get the house sorted - have you had Occupational Therapy involved in assessments and possible adaptations. If not, ring your local council and ask them how to make a referral to the occupational therapy team - they will also be able to give you lots of practical help and advice.
Hello Tillymint
Thank you for your post. Yes we have an OT who is coming out with my OH next week to assess things at home for us. Then depending on how that goes he will be able to come home.
Regards Elsa