Pitfalls of Home Health Care

April 2019

I can say with absolute certainty that I had different expectations for how home health would work. I thought I would feel and be cared for in the same way I would be in a hospital or healthcare facility. I expected the nurses and therapists to care about more than my vital signs. I didn’t expect to be lectured weekly by a speech therapist about how having other people help me means that I don’t nee this service.

I expected that when occupational therapy was ordered, there would be occupational therapists available to see me. I expected that those who would come to my house would know something about what was in my charts and what we needed to work on. I didn’t get that.

I was supposed to have help wit bathing. In the rehab unit patients get showers twice a week. When on home health, if they can find a nursing/bathing aid, it’s once a week. in the 8 weeks I had this “service,” I had 2 bathing aids come out, and I only got the later ones because I complained loudly to my oncologist that I wasn’t getting the level of care my insurance was paying for. Why my insurance company accepts this is beyond me.

I cannot imagine being an older person who has trouble getting around. Someone like my grandfather, a double amputee who had a harder time being mobile as he got into his 80s. He had volunteers that came out to help him with laundry and cleaning. I expected that I would somehow get this same level of care. I didn’t.

The other thing is that a lot of the programs that can help are based on your income. For a lot of these programs, I don’t qualify. I’m not old enough or broke enough to get this kind of help.

When I was released home on my own, the only program I qualified for through the hospital/rehab center was Meals on Wheels.

There is a program through the American Cancer Society where cancer patients can get free rides to treatment and cancer-related appointments. They are limited in number.

Outside of that… if you’re not destitute, on Medicare and old, there aren’t many options. Even then, they’re pretty limited unless you’re able to pay out of pocket.

  • There’s no help to clean the house.
  • No service to come do the dishes.
  • No service to come take out the trash
  • There’s no help to do the laundry.
  • There’s no help to get around outside of the handful of rides offered by the Cancer Society and what the hospital can help to provide.

For all of these things, I have to rely on the generosity of neighbors and friends.

I recently looked into filing for disability. As it turns out, even though I’m not able to do a lot of the things I used to be able to do, I’m still not disabled enough to qualify for any kind of meaningful help.

I can’t imagine what this was like for my grandparents. I can’t imagine what this will look like for my parents in the next 10 years.

My advice? Don’t get sick and don’t get old.

About Pink Ribbon Road

This blog is about receiving and living with a breast cancer diagnosis.
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