Any suggestions about how I can possibly avoid complete burnout please?
I am caring for my husband with a long list of developmental, mental and physical health problems… And my two children with similar spectrum of issues. I myself suffer from depression and fibromyalgia… And I am now having tests and more tests to find out whether I have kidney disease or fibroids or cancer or whatever…
I have tried everything I can think of to access some support over past twenty years. Nothing. It is just getting more and more intense as children need more and more support to not cope with school and life and hubby needs more support to address all the knock on health problems that could have been avoided if he had had the slightest amount of support in the first place.
I have had enough. I know I’m suffering from burnout. No use as there seems to be nothing I can do to avoid it. We’re all completely isolated so no support network and no respite or energy to even try to create one.
Any suggestions as to which way I should turn to find a single door not being slammed shut in my face?
I recognised your name, but had to look at your past posts, to refresh my memory.
It sounds like the caring has now impacted further on your health and its imperative social care provide support and quickly.
Just update me: Are you still working? Did you manage to find someone to do your two hours funded cleaning each week? Are the children in school albeit struggling?
I suggest, asking for an urgent updated Needs Assessment for hubby and Carers Assessment for yourself. Ask your GP to support you by writing a supporting letter. Request an advocate to take some of the pressure off in fighting for support.
If the children are still in/under schools, alert the schools to what is going on both re the children not coping but also re your own health. The school can signpost to other services/ make referrals and initiate support.
I don’t know where to start. I have sorted some domestic support, but they do seem to have a lot of staffing issues, so quite often don’t turn up…
I am working just enough so I don"t lose my professional registration. 2-3 hours per month only.
The children are usually going to school, tho school refusal is increasing.
The problems are: The school is terrible…I thought I had it in hand (albeit heading to tribunal to try to get the support for my daughter), but I just discovered I’m going to have to have the same battle with them over my son who is due to move up in September. They’re refusing (despite previously assuring me they would) to provide the supports which would help him to cope with going in. If I force him, he’ll either end up more suicidal or expelled… Or both.
Social services are horrendous. My husband doesn’t meet their threshold. I don’t meet their threshold. Neither of the kids meet their thresholds. They write formal reports that bear no resemblance to our actual situation. But I complained and now the manager is meeting me on Wednesday … More hoops without any support I’m sure. She sounded promising… But I’ve heard all that before.
I have contacted every service we could possibly have been eligible for… Nothing. I’ve alerted the schools, the autism teams, social services, mental health teams, GP’s, etc etc etc that kids and hubby are not coping. Not eligible for anything. It’s like watching a car crash in slow motion.
An advocate sounds like a good idea, though it’s all v complicated… But maybe I could take a step back from all the fighting…
Are you in touch with IPSEA for your children’s education?
Have you ever made written formal complaints to the LA, or complained to the Ombudsman?
Otherwise, get legal aid for the children if the LA are not complying with their statutory duties.
Yes, I have involved IPSEA, NAS Autism Education Team, and at least twenty other organisations, but in the end it’s me that does the research, the meetings with the school and LA, the phoning around, the writing of letters, and emails, etc etc…
I have complained to the ombudsman about several issues… Also the Information Commissioner, my local MP… No one gives a stuff.
I know exactly how you feel about nobody gives a stuff. Add fibromyalgia on top and I think burnout is pretty much inevitable. What do your doctors say? I want to help you but I really can’t think how. Just a bit of empathy and a big virtual hug are the best I can manage. Hope they help a tiny bit.