Dreaming of escape for a week or two -- lucky if I get a day.

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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.

4 Comments

Contact senior services at your county health department. Depending on your income, you may qualify for services. If you don't qualify financially, they can be a great source of information. Start there.
tried that
The senior services could not recommend you to other resources? How about contacting your own clinic and ask his doctor if there's any program that can help you? There is a program here for the elderly, incapacitated loved one, or a grandparent caring for their grandchildren. It's called NFCSP (National Family Caregiver Support Program). In some places, it has another name. There's meals on wheels that he might qualify (so that you don't have to worry about cooking lunch for him, and gives you more time to do something else). I'd say, call, call, and call.

I think for housebound people, the best way for them to get paid is anything dealing with the computer. I'm still trying to figure that one out for myself. But, I understand that working at home is much harder to maintain than leaving the house to go to work. Requires lots of discipline.
Sounds great - and I appreciate your reply, but none of that works here. Why?
I have spent hours researching to find something to care for a 54 year old male with memory and physical issues. I was hopeful that the local social services person at our medical center could help. When she found out this was for my husband of 54, not my parents, she gave me a look of compassion but said she had nothing.

When I tried the country support systems, where they actually offer help for caregiver burnout, the 5 hours on the phone going over intimate details only to be told I didn't qualify for most and would be required to do a lengthier in home interview to answer yet all the same questions again, I decided it wasn't worth my time. Too frustrating to provide all that personal detail and rehash 8 years of progressive demise -- to be told we fall through the cracks.

As for 'computer work' my husband was a top level systems administrator who designed and managed global enterprise systems for Boeing and Microsoft among other tech operations. If he could sit at a computer and think and remember and deal with the details - he'd be working still.

Can't get paid for computing if you can't deal with the details. :(

I have one possibility -- there is a certain organization that might help. The branched out to do home services for those in need. I probably qualify, but they are hard to get through to. And when we used them for my Mom, ther was a problem with the lady they sent.

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