Happy about hospice?

Mom’s still in the nursing home; she just started week two. The next step is to get her OUT. My sister in Chicago got on the phone and handled a mess of things, but was unable to contact Mom’s primary care physician by phone. Finally, after two days of trying, she begged someone on his office staff to take pity on her, and she scheduled an appointment for yesterday morning.

To make a long story short (isn’t this entire BLOG a ridiculously long story?!?), I met with the doc yesterday and discussed why medical professionals kept giving me pitiful looks and condolences when they opened my mom’s chart (because the lung cancer has spread to her lymph nodes) and which disease we can expect to finally kill her (there’s no way of knowing; and it could take weeks or years).

We talked about the drug that Mom’s oncologist wanted to put her on. Mom has no symptoms of lung cancer at the moment, but this drug (especially if it’s effective) would likely give her severe side effects like a rash (she already has a skin condition) and diarrhea (which she already has due to this).

My concern was that the treatment might be worse than the disease, and it may not even prolong her life. The doctor agreed. “If she was 55, it would be worth trying, but at this point, it’s not going to add any quality of life.”

Also, I had the word “hospice” scribbled in my notes. The doc spotted it, pointed to it, and said, “Yes…we’ll do that.”

He went on to explain that the word hospice doesn’t mean the same thing it meant 20 years ago. Essentially, he said, it means that Mom will be able to get everything she needs (including everything from medical equipment to spiritual help), and it will all be covered. People can come off of hospice, and he’s had people stay in for years.

“So…” I asked, “Who gets to have the conversation with Mom that she’s ‘going into hospice’?”

“No one has to,” he replied. “Use this company,” he said, pushing me a piece of paper with a name scribbled across it. He explained that he was a medical director there. As far as Mom would know, it was just another home healthcare company. But when he wrote the orders, it would be under the hospice umbrella.

Whew. Relief washed over me. I’m finally getting some long-term help!

On to the next topic: getting Mom sprung from the nursing home. I explained who I’d talked with so far: the admissions director at the nursing home pointed me to the social worker, who explained that therapy decides when Mom’s ready to leave. Therapy said that really, the doctor decides, but with their recommendation, and based on what she knows of Mom, she thought Mom would benefit from staying a “couple more weeks” past the original two-week stay.

The doc said, “They’re running a business, so of course they want her to stay.” (I believe Medicare covers 21 days.) The doc gave me a script saying that Mom should be released next Wednesday. Her “care conference” (with all the people who have been working with her at the nursing home: social worker, physical and occupational therapy, etc.) is scheduled for Tuesday. I’m supposed to slide that script across the table, and…POOF! Arrangements will be made to spring Mom within 24 hours.

Excellent. So Mom will be released next Wednesday, at which point she’ll be under the care of home healthcare hospice.

I left his office feeling much lighter, like I could breathe again.

Is it wrong to be happy that your mother is in hospice?


About Kathleen

Kathleen Heuer is a serial arts advocate and volunteer. She is the mom of two beautiful girls, wife to a brilliant nuclear engineer, and referee between her golden retriever and her hissy 18-year-old cat. For more, go to http://about.me/kathleendheuer.
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5 Responses to Happy about hospice?

  1. Joe says:

    No it is not. It is the best thing for her and you. Hospices does not mean terminal. It is a type of care for people who need specialized treatment that can’t really be given anywhere else. Don’t worry about feeling relief especially since she will be getting care that you won’t be able to give her. I have gone through some of this, so e-mail me and I can give some practical legal tips to you.

  2. tangled zen says:

    It’s been a while since I’ve had time to drop by. It sounds as though things are actually moving in the right direction for you and your mom. I can’t say I know much about hospice care but I do hope it lightens your burden a bit and allows you time to enjoy your family.

  3. Natalia says:

    I didn’t know that about hospice! I’m glad that you are feeling better. Hope that this offers lots of help for you and your mom!

  4. Sandwiched says:

    Mom was released last Wednesday, but has yet to be visited by the home healthcare folks. Ummm….#fail. I’ll keep you posted!

  5. Pingback: Breathing easy | Sandwiched

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