Pushed Over the Edge – Back in Hospice

Original painting of purple crocuses, painted while waiting to go back in hospice
Purple is the Color of MSA and March is MSA Awareness Month

Larry is much worse.  He was pushed over the edge by the final test to qualify for getting Medicare to cover the replacement of  the hospice bi-pap machine.   He had to go to sleep with just oxygen and not the bi-pap.  That was Friday night.  He’s hardly been awake since.  He was significantly worse Saturday, and  worse Sunday.  Now we are back in hospice.

The roughly six weeks since the transition out of hospice have been awful, filled with doctor appointments, trying to replace all the medication prescriptions, replace the respiratory equipment.  Constant calls from hospice wanting to know when they could we’d have all their equipment replaced so they could come get it.  Multiple calls with the new equipment supplier to explain necessary qualifying tests, to deliver test equipment, to pick up test equipment, to deliver new respiratory equipment.

Then there was the process of getting enrolled in home health, with all their intake examinations with nursing, OT, speech, PT, social worker, telling our story and explaining the disease again and again and again.  Then a different set of professionals coming to do the actual treatment, giving us minimal notice of when they’d come, and for the most part, feeling more like intrusions than like help.  Hiring help to get Larry into the shower because they didn’t provide that.

Instead of spending our energy finding ways to make the best quality of life for our limited time together, we were just trying to survive the healthcare system. Then just as I thought we’d gotten things in place, our house of cards came tumbling down.

Did kicking us out of hospice save the healthcare system money?  Probably the reverse.  Instead of a couple of hospice nurse visits and some meds, Medicare had the cost of  our multiple doctor visits and home healthcare specialists, new tests, etc.  The cost to us was monumental.

Through this weekend of steep decline, I feared the worst, wondering what to do next, who to turn to.  Should I notify the kids that things seemed to be nearing the end?  Which neighbors could I turn to to help with the transfers from bed to wheelchair as Larry couldn’t support his weight at all and I couldn’t do it alone.

Thanks to amazing friends we managed.

I didn’t want to go back in hospice again.  My anger is not just the discharge but their lack of empathy.  I’ve received perhaps 8 calls from them looking for their equipment with never an apology or regret or even a “we’re sorry about all this and we hope Larry’s doing well.”

Larry’s doctor called hospice back in yesterday.  So here we go again starting from scratch, with another enrollment process.  More people in our home taking my time and attention with their questions.

If this is it, all I wanted was a quiet peaceful intimate time as we near death.  Now we have strangers we have to tell our story to over and over.  I thought we could handle things on our own this time, but was advised me that we needed hospice, just in case we didn’t encountered something we couldn’t handle.  And now we have to handle exactly what I wanted to avoid.  Them!

We had an admitting nurse here for two hours two nights ago, checking him over, asking ALL THE SAME questions!!!  They told me they don’t retain the records.  She had a computer in front of her the whole time, filling in forms, check off boxes.

Apparently Medicare requires a face-to-face with a hospice nurse practitioner or physician to re-enroll (another cost), so one came to check him out yesterday, asking our story. She was empathetic, she took her notes by hand and was a good listener but it still took hours of our time and energy.

Both of them expressed incredulity that we’d been discharged.  All the torture of these last 6 weeks and now the torture of readmittance – to what end?  Hospice and the Medicare rules stole this precious time from us!!!

Today the social worker and a nurse are coming for their intake process.

I want to say “GO AWAY!”  I want them to let us manage everything ourselves unless WE call THEM.  But they say their visits are required.

They use diminutive terms to talk to us.  Honey.  Baby.  Dear.  Sweetie.

I’m Nancy.  He’s Larry. Or Mr. Peterson, to you.

So once again, instead of being able to spend quiet time alone with my husband or with family, we are being bombarded.  I have to marshall my energy to be polite to them, to tell our story, to educate all these people about the disease.

Read the notes!  Read about Multiple System Atrophy before you get to our home!  Tell me more about the disease prognosis than I already know.  Tell me what to expect in end of life symptoms due to this specific disease, not some generic platitudes or info I’ve already read online.  Offer me useful help.  Offer me quiet empathy.  Come and go gently and quickly.

Our friends bring food and hugs and leave quickly.  They text their love and concern and say, “you don’t have to answer.”  That’s empathy!!

Our friends offer what’s needed, physically and emotionally, without adding burden.  That’s all  I want now from the healthcare system, now that we’re back in hospice.





8 thoughts on “Pushed Over the Edge – Back in Hospice”

  1. I’m so sorry, Nancy. It is enraging that our healthcare system has been unable to help you as it should — with compassion, understanding, and (gasp) maybe a little knowledge of the disease. Please let Heather or I know if there is anything we can do to help.

  2. Love to you and Larry. Angry at our ineffective system. So glad that you have empathetic, loving family and friends.

  3. Dear Nancy,
    You have words to describe the hell you’re going through. I don’t.
    Saying I’m so sorry and my heart just aches for you both is so trite. But I am and it does. Love, Diane

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