Dreaming of escape for a week or two -- lucky if I get a day.
It was easier with my parents - each of them had their ways, and their days, but I was able to work full time, care for them, visit a few times a week, and go home to a healthy happy hubby. NOW -- its my hubby who needs so much care and help with all issues surrounding his care, treatment, insurance, finances.... everything short of basic ADLs.
We've only now gotten a diagnosis after 8 years of bouncing around from doctor to doctor begging for help, diagnostic, and treatment. Got the diagnosis but the trip to the Mayo nearly drained him. He's not fully recovered yet and it's been 7 months.
In the meantime, the sad thing is we learned there is a diagnosis but there is no known treatment. Now what? He's getting worse, its unpredictable, and I can't know from day to day how much help he needs to get through the day.
Any suggestions on how I can get some in home care for him without driving us into bankruptcy?
Any suggestions on how I can find a job that allows for caring for him as well? I was trying to build a freelance business as a corporate writer when this started, but it's totally drained and distracted me. I keep thinking if I could just get him stable enough, I could enlist help.
ANy suggestions on where I can find some support for myself? I'd be thrilled to have someone to talk to -- but so far all the support systems I find are for senior care, cancer, or other life threatening things. For my spouse, it's a never ending illness but not an immediate threat to his survival.
I feel rather hopeless, just go a day at a time, find some spiritual relief through prayer and meditation, but am stuck between a rock and a hard place.