This will be long so apologies in advance:
Recently my family (DB, Dsis, their DCs and my Dparents) had a family get together, which I did not attend. A couple of them contacted me afterwards to tell me (nicely) how disappointed they were that DS & I weren't there….I told my Dsis briefly why I felt I couldn't go & she wants to meet up this week to discuss.
I didn't go for a number of reasons. DS (14) has a severe disability & is wheelchair bound. Going anywhere is quite an undertaking esp in winter….yes we could have ordered a taxi each way but I need to look after DS personal care which means taking at least one full change of clothes just in case, pads, wipes etc. Then the care itself is strenuous, involves lifting him up & downstairs and he is heavy, cleaning him, disposing of waste etc. And getting him to eat is no small thing. Sometimes I feel I just can't do it.
There is a wider issue though…I feel isolated from my family, much as I love them I feel there is little to talk about any more. I don't want to go through the 'We're such a happy family, having such a great time together' and hearing about how marvellous I am the way I cope with DS and manage to be so positive. I feel that I would be lowering the tone to talk about how tough I find it sometimes. And it is not as though they don't also have problems.
I think it came to a bit of a head at Christmas (although they don't know anything about it). We all went to DB house and I was upset that his DCs didn't come downstairs even to say hallo and happy Xmas to DS (or to the rest of us) when we arrived. Just stayed upstairs where DS couldn't access and wasn't invited to join in, and came down for Xmas dinner. But as I say nobody knew how I felt,
It is not that they are not willing to help, do things like help me lift DS etc that obviously need doing. But I am otherwise left to get on with it. I don't feel it is all their fault, we are all busy etc, and I don't want to say anything as the worst thing of all would be for them to put themselves out for DS under duress.
My problem is how to explain all this to my Dsis in a way she can understand. I am not asking for anything, but I just want to tell her how things are & that I can't go on perpetually feeling guilty that I can't just fall in with the rest of the family and go through the motions of us all being happy together. It may be inevitable that I will be more isolated from them & we will all just have to accept it.