Going off of hospice

It is fairly easy to find hospice services when you need them. But you can be left high and dry if you ever leave the hospice program. In August 2013, after several hospitalizations and health issues related to lung cancer followed by blood clots in the lungs, combined with advanced dementia of the Alzheimer’s type, my mother’s physician suggested we look at hospice care. We had already agreed as a family that we would no longer seek treatment if the cancer came back in her lungs or anywhere else, and my mom’s age as well as the advanced dementia meant she was no longer a candidate for any surgeries. Hospice was offered as an alternative. I was the only one in my family who was reluctant about relinquishing Mom to hospice care. Part of it was that I wasn’t ready to admit that we were nearing that final stage in her end of life journey. But I also had the strong feeling that Mom just wasn’t ready to be a hospice patient. Nevertheless, I was out-voted by my siblings, and my oldest sister initiated the call to the local home hospice service and got the ball rolling. After a review of my mother’s case, she was admitted within a week of that phone call.

On one hand, hospice was great. They provided an electric hospital bed which made it easier to get Mom up and also to re-position her for eating and sleeping. They also provided a wheelchair and a bedside commode. More importantly, they provided home care workers who came every day to help with bathing. Hospice also provided a nurse. Things were going well for almost 8 months. Or maybe they were going too well, because Mom stabilized: she wasn’t losing weight like she had been, she started eating more, she was more alert and even getting out of bed every day. About every 3 months they reviewed her case and I was reassured each time that she would still meet the program requirements. But in that last review, she didn’t and I was told that Mom would be taken off the hospice program.

To me, this was the best news I had heard in a long time! But just as fast as she went on hospice, she went off, and she lost the home care workers, the nurse, the bed, commode, and wheelchair. And because her family physician doesn’t follow his patients into hospice, we were also left without a doctor.

I had to scramble to make some calls. Fortunately, her doctor was willing to take her back, and I have to admit he has been very helpful and supportive. Mom and I are both thankful for that. I was also told that Medicare should cover a hospital bed and wheelchair, but I would need a prescription for each and it could take several weeks before we got the approval. But hospice wanted their equipment back right away. Luckily, I found a local medical supply company where I could purchase a bed, commode, and wheelchair to replace what hospice was taking back. But Medicare typically doesn’t reimburse for purchases you make before getting approval. I ended up paying about $3,000 out-of-pocket for the equipment I needed to continue taking care of Mom at home. I put it on a credit card and I’ve been making payments. It’s not the ideal way to do it, but it worked out for us.

I was also able to locate a private-pay visiting home nurse. Medicare will not pay for this, so it is another out-of-pocket expense. But her prices are reasonable and I can afford to have her come to the house twice a month to check on Mom.

The services you need are out there… if you can pay for them yourself! I realize not everyone can. Neither of my parents invested in long-term care insurance, and to be honest I never knew there even was such a thing until just recently. I did find other programs, like “community care” that helps seniors and disabled individuals stay living in their own homes. Because these programs save the state government the full cost of caring for people in nursing homes and other facilities, they are willing to provide funding to care for people in their own homes. It’s a great program, but you have to qualify for it. To qualify, you have to be below the poverty level. You can’t have any assets and you have to cash in your life insurance policies, annuities, pensions, and any other means of potential income. And there are rules for how you can decrease your assets and income so that you qualify for Medicaid.

It seems that long-term care is an all-or-nothing deal. If you are below the poverty line, you qualify for services and everything is taken care of. And that’s a good thing. But if you have too many assets and too much income, you get absolutely no help, unless you can find ways to reduce your assets and income until you do qualify.

But the odd thing is, there is almost nothing available for anyone who is not below the poverty level. I could probably get by if I only had a little help to keep my Mom at home. By a little help, I mean enough funding to pay for some home health workers to come in and help me a couple times a week and provide respite when I need it. But there are no such programs or services for those who are above the poverty line and only need a little help. But if you are willing to reduce your assets and income to get below the poverty line, then everything is taken care of and you get lots of help. It’s the same for hospice care. When you qualify, you get everything taken care of. As soon as you no longer meet the eligibility requirements, everything is taken away from you. There are no programs and services for those who are teetering on the edge, whether that’s teetering on the edge of poverty or teetering on the edge of a disease that is slowly taking your loved one from you.

I have a feeling that my situation is similar to others out there. And that’s another reason why I want to continue this blog as a resource. If you have any comments, questions, or even advice to share about available programs and services, contact me. I’d be willing to share in greater detail what I’ve learned over the past couple of years as well.

About Doug Seubert

My name is Doug Seubert and I live in Wisconsin (USA). I am working toward a Masters in public health, and I am the President and CEO of a new non-profit organization: Marshfield Area Purple Angels. My blogs share resources, tools, and information about various public health topics, with a strong emphasis on community health education, effective health communication, and health literacy. I am also the creator of "The End of Life Survival Guide" featuring tips and resources for caregivers of a loved one near the end of life.
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