Life After Hospice

Life After Hospice - Original imageWe were discharged almost three weeks ago, and are now experiencing life after hospice.  It’s definitely not the same as life before hospice, back in August.  After all, Larry is far weaker, has far more problems eating, yada yada yada.

Every transition is hard.  Figuring out how to manage the new reality.  This one has been no different.  Emotionally, it feels like the race has gotten longer, the course is more difficult, and the pit crew has disappeared.

Then there’s the logistics of figuring out life after hospice.  Getting prescriptions refilled.  Making and going to doctor appointments.  The PCP meeting was annoyingly frustrating because they hadn’t received any info from hospice. I had to review his prescriptions from memory while they paged through his old files.  They needed forms from hospice to prescribe all the medical equipment we have.  Since they didn’t have the forms… no DME replacement progress.

The next appointment was with the neurologist who was caring and empathetic.  He did have the hospice information, but couldn’t understand why Larry was discharged.  He could see the decline and ended the appointment by saying to me “you can’t do this all yourself,” and ordered home health.

YES!!!  Finally!  Help!  By now I was exhausted trying to do the showers in addition to all the other things I do for Larry.  I have to help him across the bathroom with the walker and then support him as he steps up and over into the shower, next to the glass enclosure.  It’s really takes two people.  I am not a napper, but I am finding myself sluggish with fatigue every afternoon and not wanting to do anything fun because fun is just more work.

Yesterday, the home health nurse arrived and spent two hours doing an “intake.”  Asked lots and lots of questions, many of which were irrelevant, like what size catheter does he use. They don’t even do that for him so why do they care what size it is???  She wanted to review the proper procedure for catheterizing, even though I’ve done it 4 times a day for almost two years.

I asked about shower help and she said they don’t have home health aides. What we get is a nurse two times a week to come by and take his vitals. His vitals?  Really?  Okay, we will get physical therapy, speech therapy and occupational therapy, which is all good, I guess.  But it’s all stuff he’s had, and we could do ourselves if we were motivated.   It’s a lot of people coming and going, trying to get him “better” but not the help we really need.  He’s annoyed by it and I’m frustrated.

Hospice didn’t fit us because it was designed for dying quickly.  Home health doesn’t seem to fit us because it’s designed for transition from hospital to home, from sick to well.

A friend recommended trying another home health company, which would mean research, inquiries, and another intake process.  Someone recommended palliative care, which doesn’t exist here except in the hospital.  Another friend said check Larry’s insurance – it may cover an aide for showers.  Someone else recommended hiring the help we need (with the money we don’t have because I’m not working so I can care for Larry.) My mind spins with it all.

Friday I’ll just shower him by myself.  And I’ll probably hire someone.






Figuring out how to do showers without help.

Patient and Caregiver and Bride and Groom

The Wedding CakeWhat to do for Valentine’s Day when you’ve  just been kicked out of hospice after losing your appeal?  You be both patient and caregiver and bride and groom!

We renewed our vows on Valentine’s Day.  Not in the crowd of 400 that renew their vows every year on Siesta Key Beach but in the front foyer of our home surrounded by neighbors.

We spent the afternoon at the doctor’s office, getting Larry’s prescriptions replaced, the wounds on his heel and nose examined, and figuring out what to do about replacing all the respiratory equipment that hospice supplied which we use every day.  Unfortunately, the doctor had never received the hospice notes so it was a complicated meeting and we couldn’t accomplish everything.

Then we zipped by the bakery to pick up the cake and came home to get dressed.

Caregiver and Patient Become Bride and GrromThe bride wore a red tunic with a glittery heart over flowing white slacks, the groom wore a black golf shirt and khaki’s and his power wheelchair.  They took their places to the sounds of a sing-a-long of “Goin’ To the Chapel of Love.”   Live music was performed by the husband of a woman the bride had met in high school and had reconnected with just three years ago here in Florida.  The officiant was a neighbor and long time friend from up north who the bride had married seventeen years ago in Massachusetts. There were heart shaped balloons and red roses, champagne, and cake.

A neighbor said he’d been worried it would all be a tear-jerker, and although there were a few misty eyed moments, there was also a lot of laughter.

We wrote our ceremony, based on our first wedding.  As we said our vows this second time, Larry gave me a big thumbs up when I repeated that I’d care for him “in sickness and in health.”  That cracked up everyone, including me!

In a surprise of technology, two of our children who work at desks in universities were able to join us through a special conference call and even able to speak, telling us and everyone gathered what seeing our love and our relationship meant to them both over the years and as they watch us now.  That was so special!!!

It was wonderful for us to be able to tell everyone present what their support over these last three years has meant to us.  We included a sand ceremony based on an ancient salt covenant, symbolizing the bond created as once the grains are mixed together they can never be separated.  Larry and I each added sand to a beautiful ocean colored vase, added sand from each of our children, then asked each neighbor to come up and add a bit of sand as well.

At the end we offered a toast to everyone present saying that the measure of a life is how well you love and how well you are loved, and thanks to them we felt blessed to have accomplished both.

Why did we do it?  It just seemed right.  We didn’t give it much thought.   Had I thought about all the details, all the work, all the energy it would take, I might have thought harder.

Bride and GroomAs I write about it now, three days later, I know exactly why we did it.  In this incredibly difficult and heartbreaking journey we are on together,  we need to acknowledge the the strength of our love and the possibility of continued romance. We need to not just be caregiver and patient but also bride and groom!

Goodbye Hospice; Focus on Living

Original Painting called Living Flowers, Goodbye Hospice Focus on lOur second hospice discharge appeal was denied.  We’re out.  I could have continued for another round of appeals but I didn’t have the energy to spend.  Goodbye hospice, we’ll focus on living.

And laughing.

Larry said something yesterday morning and as usual I couldn’t hear or understand so I got up from my chair and leaned my ear to his mouth and still didn’t understand.  So I asked for a one word category – “hospice,” he said.  After a few more times I finally realized what he was trying to say:

“Now that they’ve kicked me out of hospice, I have to figure out what to do with the rest of my life.”

I love that guy!!!

After a full week of not sleeping, of advocating and arguing, the uncertainty is over.  I’d be happy with the discharge if I believed they were right that his disease is stable but I know they don’t understand Multiple System Atrophy, which is a terminal disease with a rapid progression.

In retrospect, I think they always equated it with Parkinson’s Disease, which is no longer considered terminal because of available medications and does stabilize. This appeal they never even let me state my case that he had progressed on all four of the major causes of death in MSA:  sudden cessation of breathing, aspiration pneumonia or acute aspiration, UTI, and wasting (weight and muscle loss).

So, we’ll reframe, move past our anger at the system.  It’s wasted energy.  Hospice isn’t good at slow dying.  Their 2017 average treatment course was 17 days.  We’ll see this as an opportunity.

I never liked the lack of privacy of all the in and out hospice visits.  I never liked the inability to plan our day until I got their morning calls to know when they were coming.  I always wished they acted more quickly on varied symptoms that seemed to be of no interest to them and then caused him serious discomfort.

I’ve already made an appointment with his PCP this week and we will start the process of re-engaging with doctors.  My daughter called it “Medicare revenge spending” as I listed the round of doctors we could make instead of seeing the hospice nurse:

  • PCP
  • Neurologist
  • Pulmonologist
  • Gastroenterologist
  • Urologist
  • Dermatologist
  • Opthamologist
  • Dentist???

We won’t probably see all of them.  But maybe the first four.  This gives us an opportunity for him to get his systems and symptoms checked by the experts who are up on the latest research and treatments.  We won’t have the CNA for help so I’ll have to be careful to preserve my energy, but we’ll manage.  If we have an emergency, we’ll call 911.  If I need support, I’ll call a friend.

We can focus on living rather than dying.  In January we’d been practicing a “living mind-set” but lost it through this hospice battle.

Now we’ll focus on living…      and laughing.

Larry just asked me “do vegetarians eat animal crackers?”



Winning the Battle against Hospice, but Losing the War

Storm clouds painting reflect my battle to get hospice care for my husband extendedLast Friday we were”served” with our hospice discharge papers, on Saturday I appealed, and today I learned that I was winning the battle against Tidewell Hospice, but losing the war to get my husband hospice care.

“You won your appeal,” said Kepro, the organization charged with hearing hospice appeals.  However…

“You won by default.  Tidewell Hospice didn’t submit their paperwork in time.”

I asked what would happen now and Kepro told me that Tidewell would serve me with another discharge and I could appeal again.  Oh, yay!  Such a deal!

Today, just an hour later, our hospice nurse called to make an appointment to serve us with a new discharge.

I’m so tired.  I didn’t sleep last night from 2 am to 6:30 am.  It’s a bizarre twist of advocacy.

I have to advocate that my husband is dying – is declining, not stable.  I have to make our case for his imminent death.  Somehow if I win, that means others agree.  And that’s good?  I guess so because that means we get more care.

But the reality is he is dying.  It isn’t good.  It’s awful.  How do I mourn what I have to advocate for?  My heart and head are twisted in irony.  Why must my precious stores of energy go to this healthcare hairball instead of caring for Larry?

Larry was a 2 out of 10 today when I asked how he was feeling.  The worst in a long time.  Is it because of all this talk of his death?  Is it because of the antibiotics that were prescribed for his urinary infection?  Is it because his symptoms are increasing and the disease is just progressing so far?

It is hard to focus on living while we have to focus on dying.  My heart breaks for us both.

I am so tired.  I want to give up.

But if Viktor Frankl, the noted author and Holocaust survivor, can find meaning and survive his horrific experience, so too can we survive what we face.

We needed to stop asking about the meaning of life, and instead think of ourselves as those who are being questioned by life – daily and hourly… Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual.” – Viktor Frankl, “Man’s Search for Meaning”

Larry and I are being questioned by life.  Daily and hourly.  We work to find the right answer to the problems we face.

So today I went to yoga.  I swam in the pool while Larry sat in the sun.  We went to Off-Key Chorale and sang with others dealing with neurological challenges.  Tonight, we drove down to Lighthouse Grill ,a restaurant on the water, where friends were singing and had invited us to join them.  We listened, we chatted, we ate, we watched a spectacular sunset.  We lived.

I advise any family considering hospice who has a rare disease to be sure they use a doctor who understands the disease and not use the covering hospice doctor who doesn’t have this specialized knowledge.  Had we done this, we wouldn’t be in this position now.  The nurses would have tracked the symptoms characteristic of the decline of his disease, the doctors would have prescribed the medicine needed for his MSA autonomic system failures.  They wouldn’t have been looking for the symptoms of cancer or heart disease that are, of course, missing in Larry.

Tomorrow we will fight again.  We will win the battle to get him appropriate care.  Either we will win our appeal, or we will find great healthcare elsewhere.


Slow Dying versus Active Dying? Who Cares?

Original painting of slow dying versus active dying I’m starting to think our problems with hospice have all been about slow dying versus active dying.  They may be great at providing services for active dying, but not for slow dying.

We weren’t sure we wanted hospice in the first place back when Larry was being released from the hospital.  Our concerns weren’t that we had to give up on treatment or cures because we’d long since given up – with Multiple System Atrophy there are no treatments or cures.  His neurologist had told him he was “end stage.”

Our concern was more about quality of life – moving from the focus on living to  focus on dying, and giving up our privacy by having unknown caregivers come and go. But we enrolled because we couldn’t get the equipment he needed through home health – the oxygen, the cough assist, etc.

With daily respiratory treatments and new medications we settled back into the slow decline of MSA.   As he got weaker, we added CNA services to help with his showers.  We worked very hard to focus on living rather than dying.  In retrospect, I think that the nurses saw that as one sign of improvement to a stable condition.

But they aren’t familiar with MSA so they don’t know what to look for.  It is a disease that doesn’t have a typical death trajectory.  Death often comes suddenly because the atrophied brain stops telling the body to breath, or because aspiration pneumonia sets in, or because the patient chokes, or because of a urinary infection.  There are subtle changes that lead to these deaths but they didn’t know what to look for and document according to Medicare guidelines. They didn’t even document his weight loss.

Who cares for those who are dying slowly?  Are we to keep running from doctor to doctor and to the ER with symptom flare ups?

Even if we excuse Tidewell Hospice’s lack of knowledge of his rare disease process and poor documentation, I fault their communication, their lack of empathy, their inability to put themselves in our shoes.

Living day to day with dying, never knowing whether Larry will still be breathing, constantly dealing with choking and diarrhea and weakness is hard enough without additional emotional and strategic injury.  They should have prepared us better.

I wished they’d explained the recertification process well in advance, explained what they’d be looking for, let us know when we might expect it to happen, how we’d be notified, what we do next.

We’ll probably file an appeal, which is our right.  On the other hand, we’re not sure we want to have his care or his death in the hands of people who don’t understand his disease.

And I’m so tired of it all.