I’m 66 yo retired RN living in NYC, widowed once and remarried in 2008. My husband was diagnosed with MS in 2009. He also has DMll and is now on insulin. He has cognitive damage, short term memory loss, incontinance , and uses a wheelchair. I was diagnosed and treated for breast cancer in 2014. I’m also being treated for PTSD since 2016 and awaiting settlement or trial. I’ve been through multiple bouts of burnout over the last 10 years. I have scheduled a consultation with an “elder law attorney”. It’s overwhelming!! We have no family assistance. I’m IT! I imagine myself alone and impoverished as the surviving spouse. A frightening prospect.
Please check out:
https://www.medicare.gov/coverage/home-health-services
You would have to coordinate with his doctor and the agency (if you have privately hired, you might have to use an agency for the services that Medicare might cover.) This could fall under the "Part-time or intermittent home health aide services (personal hands-on care)" The agency we had hired mentioned this benefit, but because mom didn't need/refused any "personal hand-on-care", we had to private pay, so I don't know how it all works or if there is a limit to the coverage.
When you need to get out for errands, sanity, etc and need a "sitter", that you would still have to pay for, but if you can get some Medicare coverage for some of his personal care, it could save you some. The page referenced above even mentions that the agency "should tell you how much Medicare will pay. The agency should also tell you if any items or services they give you aren't covered by Medicare, and how much you'll have to pay for them." It can't hurt to explore this...
I certainly can relate to the fixed income issue. I only care for myself and my cats (I do all the non-hands-on work for mom, which does add up and gets progressively worse), but my place needed a lot of renovation when I bought it, got laid off and stuck between two houses! I was finally able to move forward on the other house and sell it, but finding good workers (I have most of the materials needed) who stick around is a different issue! At the moment, I am not even looking for anyone because the money issue has reached a point of soon to be negative - a few more months to get through (til April) when I can pay down a big chunk of the mortgage and use the remainder to hire people to do work. Tired of living in limbo! But, I made a plan, and then had to adjust it when something else failed (brakes on my plow jeep), but... baby steps... hopefully I can get this place done and clean up so I can try to enjoy some of my "golden years!"
I was researching this exact situation for a post for my senior's website and came across a novel idea I think just might work for some people who are stressed out from being caregivers. You can read about it here if you like.