Hi Runnika. I'm in a similar position with a 9 year old with AS and an elderly mother who's been hiding all her health and care problems for several years, and when I persuaded her to have a social care assessmente at the beginning of this year it's opened up such a can of worms and I'm finding it very hard to cope with it all. Since January she's been pretty much a full time job - GP and nurse appointments have led to cataract removal (countless appointments for that), hearing aids, thyroid scans, chiropodist etc etc I could go on but I've lost count. I've been meeting with social workers,OTs etc about adaptations to her council house. To top it all her home is scheduled for major refurbishments next year (new bathroom, all windows, fire etc) and the logistics were overwhelming. I've now persuaded her (with the help of several SW professionals) that she can no longer manage in her home and needs to be in sheltered housing - this cuts out the refurbishment issue but now I'm left filling out application forms and it's simply neverending.
There's only me to deal with all of this. I have a sister but she lives at the other end of town, doesn't drive and works full time. She couldn't even help with arranging appointments because I have to take Mam there so she couldn't do that without my diary. She does do heavier, practical jobs like occasional cleaning, changing her bed etc so I guess we even out.
Fortunately my son is doing very well at the moment and is managing without 100% attention from me, but he does need a lot of support and guidance day-to-day. He's now in Y4 and I'm looking into secondary school places for him and - just for a little leisure activity - I've been advised to apply for statutory assessment for him. I'm trying to gather evidence for my application but have barely started because of the pressure of caring for my mother.
I have health problems of my own - I have had ME/CFS for eight years and although I seem to be managing OK at the moment I know this won't last and I'm always worrying that today's the day I'll crash and won't be much use to either of them. Even as it is, I have to pace carefully and manage my days so I don't overload myself, and that's quite difficult at the moment.
Not sure what to suggest as far as support is concerned. I often wish I had someone to take the whole lot away from me but it would take weeks to explain the situation enough for them to understand what needs to be done, and I just don't have that kind of time. Anyway, Mam wouldn't accept 'any old stranger' doing stuff for her - I guess yours would be the same. Same for support groups - great idea but where do you find the time to go there? Perhaps you could contact Carers Association or some other local group to get some advice. Some of these agencies do advocacy work and can help with various household jobs which might help your mum with her independence - shopping, gardening etc. Does she have a Care Call pendant alarm, so that if she falls she can get support without having to depend on you? Has she had a social work assessment to find out what other help there might be available?
Sorry, not much help. I too get those kinds of comments: "Karen, you really need to look after yourself you know". Yeah, well I'll just let this old woman rot in the chair shall I? And just stick my son in any old secondary where he'll get the crap kicked out of him on the first day? It's well meaning but just doesn't help. The only person who truly understands the extent of your situation is you.
Try to have a good support network around you. Is your dh supportive? Other family, friends? It IS tough, but tbh I think we just have to ride these things through, there are no solutions just carrying the load.
Take care of yourself