Open Letter to Hospices

Dear Hospice Leadership:

Original painting of Thistle Flowers
The thistle connotes endurance and fortitude, as well as bravery, courage, and loyalty. It is said you should wear
thistle whenever the stage of your life seems over-whelming. These thistle were at Larry’s funeral.

You care for people at their most vulnerable time, but mostly your care is for a very brief time. Tidewell Hospice here in Sarasota quotes the average length of stay as 14 days.  When we were admitted that’s about how long we thought we’d be with you.  But instead we were in for the long haul.  Six months before you discharged us.  About 3 weeks out.  Then maybe 3 more weeks back under your care.

In our situation with a progressive neurological disease, once the precipitating symptom to contact you was brought under control, the disease still progressed but it was a time you should have started to treat us differently.  We were no longer on a precipice, but on an unknown and significant decline.  But different from cancer!

You could have been so much more help if you had recognized we didn’t fit your norm.  Please, please do it differently for others.

It could have started when you first admitted us and made such a big deal about hospice care not being curative and did we understand that.  You didn’t understand that this disease diagnosis came with the words “no cure – terminal.”  This was not a transition for us.

You should have started our care by doing the research to understand the disease.  We wished for clear guidance about the disease course and what to expect from you as symptoms progressed over time.    Instead, we had to do the research and provide it to you, and often you ignored it.  You need to listen to patient and caregiver knowledge and amass your own knowledge even if just on an as-needed basis.    You should have encouraged us to keep our neurologist involved.

You need to educate yourself about typical causes of death for this particular disease.  We didn’t look like cancer, but you looked at us the same.  You didn’t track the appropriate measures of decline for his disease, which ultimately led to you discharging us and causing us a horrific last few months.  You should have told us what you were tracking, especially as the nurses spent so much time doing it in our presence.  We could have told you it didn’t apply.

Your must understand which drugs that can’t be used for this disease, and which drugs only work for this disease’s symptoms.  For example, you refused to supply the only constipation med that had worked for Larry in spite of us explaining the significance of constipation in MSA quality of life.  You insisted we use your formulary, in spite of the fact that he had tried those drugs and they hadn’t worked.  EVER.

You should make sure to set more appropriate patient and caregiver expectations about roles of each of the hospice team members including how often a doctor or other provider will be involved and under what cirucumstances.  Do this again after the initial crisis has passed.  Your people kept telling us we would be getting all the “good stuff now,” like massages.  That happened twice in 7 months.  And doctors – never.  We went from making the rounds of many specialists regularly all for symptom control to never seeing a doctor or PA or NP in the whole time we were with you.

Provide appropriate and timely answers to questions about symptoms that have to be brought by the nurse to the doctor we never saw.  We were used to getting immediate answers when we sat with the doctor instead of addressing them to the nurse who might or might not remember to bring back answers on her next visit in a week or two.

Instead of wanting to manage his autonomic symptoms that were impacting his quality of life, you only wanted to manage the pain.  And you only seemed to want to manage it pharmaceutically, instead of with other measures.  Instead of the equipment your physical therapist recommended for managing pressure sores, you offered pain meds.

You should have educated us on how to prevent or mitigate new symptoms that might be expected as symptoms progressed.  Having no experience with pressure sores, we didn’t recognize them as Larry’s mobility declined.  There were things we could have done earlier to prevent them.  You pretty much ignored them until they were horrific.  “That happens,” you said.  But he wasn’t even bed bound!

Communicate clearly, empathetically, and honestly.  Make sure your phone system works exceptionally well and doesn’t require much effort or time to get to someone who knows me or at least can access my situation.  How come my hairdresser can answer my calls with my name but you can’t find me?

Ask your staff to think about where the patient and caregiver might be emotionally and/or physically before they make a phone call or a visit.  Too often we were bombarded with something that didn’t fit – whether it was insistence on their schedule and not ours – like coming early in the day before he was awake – or emotions that didn’t meet ours.  Don’t bring false cheeriness or false sadness.  Look where we are.

Prepare us for changes.  You discharged us with no face-to-face, no warning, and no help to replace your care.  I know from my healthcare experience that transitions of care are always hard, and I’ve seen them botched many times.  But I’ve never completely experienced such trauma.

Because of the lack of palliative care services, once we were discharged we had no where to get coordinated help.  We made the rounds of individual specialists again.  And because Medicare required all the qualifying tests to be passed to replace medical equipment that had been provided through hospice, we had to jump through hoops and more hoops, when we were in such a precarious state, emotionally and physically.

So if you have to discharge someone with a progressive neurological disease, give them plenty of warning.  Understand what a traumatic event this will be, what a disruption to their lives, and figure out ways to minimize that disruption for them.  Don’t tell them it’s “good news.”  Give them (not just a fax to the primary care doc) written instructions on how to transition the care.  Help them emotionally while they are still under your care because there’s no one there to help them once they are discharged.

The most precious resource you provided us was a CNA to help with showers.  Probably the lowest paid person in the place.  Treat them well.

This is already too long for you to read, and too upsetting for me to write.

I wish hospice wasn’t our only choice.  I wish coordinated care didn’t have to come with a die-in-6-months time frame.  I wish you’d listen to me and make changes!






Angry Again: How Hospice and Healthcare Failed Us

Painting of anger
Original pastel copy on Shizen paper of Marla Baggetta’s Red Sunset

I’m ANGRY.  Again. Recently I met with Tidewell Hospice leaders after sending a letter full of the ways I felt they failed my husband and me with their care.  They robbed us of our quality of life in the last few months.  I came to the meeting with a list of ideas I had about how they could do a better job for patients who have neurological diseases, rare diseases, or lengthy stays.  I sent the list by email after we met.

It took a lot of energy and courage to meet.  I had to prepare by reviewing the worst months of our lives.  I had to manage the anger and sadness that welled up every time I sat down to write down my thoughts, just as I am managing it now – my shoulders and neck tightening, the tears welling up, the lump in my stomach.

I haven’t heard back though it’s been 6 weeks.  Not a thank you for your time, not a sorry, not any info about actions they are taking, in spite of them telling me they would be taking action.  I did receive a request to leave them a legacy gift – mention them in my will.  HA.

I met with the CEO, the Medical Director, and the Nurse Director of Home Care teams – people who have the power to take action.  My fingers are shaking as I type, full of the impotence I felt while they provided their care, and my continued inability to affect change.

As I look back over the course of his disease I see so many gaping holes in the healthcare system for his neurological disease, that seem more readily filled in the field of cancer treament.

I remember when he first received the Parkinson’s Disease diagnosis after 5 rounds of previous specialists and incorrect diagnoses.  We went to this new neurologist expecting to talk about surgery to mitigate what we thought were symptoms of  essential tremor and she just announced it was Parkinson’s.    It was a bomb dropping for us, but she kept talking, though we couldn’t hear her.

Doctors are SO poorly prepared to give bad news! And the reimbursement system doesn’t give them the necessary time to spend on doing it well.

When new doctors started suggesting Larry might have something other than Parkinson’s, I remember one particularly staggering moment.  The neurologist said “it might be ALS, so I’ll arrange some tests.”  He sounded sort of excited about the diagnosis process.  His only advice was “don’t believe what your read online about life expectancy.”

We moved on to the next neurologist who confirmed it was MSA, saying “I know this is rough news.  We will do our best to keep you comfortable and enjoying a good quality of life for as long as possible.”

At least there was some recognition of the emotional import of the news.

But who was the ‘we’  who would help us?  We saw him every three months for 10 minutes.   Who else could we turn to?  Google became our best friend.  We were faced with a terminal diagnosis with no support.

As his symptoms progressed we made the rounds from the primary care doctor to the specialists – gastroeterologist, urologist, dermatologist, neurologist, and then with pulmonology, cardiology.  There was no coordination of care, no teamwork, no place for our emotions.  We had no support groups, as the Parkinson’s groups we’d previously attended were not dealing with the terminal diagnosis that we were dealing with.

I looked for palliative care specialists.  I found one at the hospital and left a message but received no reply.  We weren’t hospitalized, after all.  I asked the neurologist.  He said that palliative care was what you received in the hospital and that hospice was what you received at home, but he didn’t think we’d qualify for hospice yet.

I knew from my daughter who is a researcher in hospice and palliative care that he wasn’t right in the academic definitions, but he WAS right in the practical definition.

In essence it was the practical definition of hospice, the way it is defined and paid for that finally did us in.  Tidewell Hospice’s complete lack of understanding of the course of his neurological disease.  The “six months til death or you’re out” definition, that sent us into a tailspin those last three months.

Okay, I thought I was past my anger but as I write this I realize I’m not at all past it.  I was hoping that the list of ideas I submitted to Tidewell Hospice, which I’ll share in another post as this one is already too long, might at least help provide better care for the next neurological patient, making some good come from our bad care.  But no.  It seems my experience of them not listening continues.

So tomorrow I will write an open letter to all hospices.  I will write all the ways I wish we had received care.


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.





The Best Healthcare Experience

Original Art:  "Opening up" about Best healthcare experienceMy husband and I went to his pulmonologist, Dr. Howard Diener, and had the best healthcare experience.    I wanted to hug him.  I told him he was my doctor hero.   Not surprisingly, his staff was awesome – helpful, kind, caring, attentive.

We’ve seen a lot of healthcare professionals this last week or so.  A parade of home health experts – nurses, and therapists for speech, OT and PT.  I was asking myself why I felt so much resistance to them when they were coming into our home to help.  They were all pleasant, nice people.  Why was my body tensing and reacting with anger to their well meaning questions and comments?

Let’s start with the fact that they come with an agenda – fill out the forms, check the boxes that our health insurance and their company requires, regardless of relevance.  They spend a lot of time looking at their computers and asking very specific questions.

Their questions are narrowing questions.  They aren’t widening up questions. In general, doctors and nurses are trained to narrow down the problem and try to solve it as quickly as possible.  It makes sense.  Manage the symptoms.  So they learn the size of his catheters rather than what’s unique to our situation.

They want to offer solutions, their expertise, rather than coming from an open frame of mind.  They don’t start by asking what we’ve tried, or assume expertise on our part from our years dealing with this disease.  They don’t honor our experience, or our way of doing things.  Some get there after we say “tried that” over and over.  The occupational therapist finally said,  “you’ve had this disease so long and figured things out for yourselves so I don’t have anything else to offer, as much as I wish I did.”

I’d like them to ask what is hard for us and what is easy, what we’ve figured out and what we think we need, what we want.  I’d like them to ask us for our questions, rather than starting with theirs.  I’d like them to explore the fit between our situation and their care model.  They each tried but struggled within the limitations of their forms and requirements.

Our great experience started differently.  This doctor had cared for Larry in the hospital six months ago.  He walked in the examining room and started by talking about when he cared for Larry in the hospital.  That was six months ago!  Then he just asked us to tell him what was going on.

He had no notes in front of him, no computer.  He made eye contact the whole time. He was such a good listener.  If felt so different, so much more intimate a conversation than our usual healthcare interactions.  I found myself relaxing.

He asked open questions about what was working and what wasn’t.  He asked me to ask him my questions one at a time.  He explained things easily but with respect for our experience and expertise.  He kept pointed out things that were Larry’s choices.  He was totally available to us, not at all rushed.  He had a wry sense of humor along with a sort of common sense approach.

When I told him we were there because we were kicked out of hospice, he said “Oh, so you didn’t die fast enough for them.”  It was a perfect blunt and funny comment.  Right to the heart of the matter.

At the end, he acknowledged how hard it was for us to come to him and offered to answer any questions by phone.  He remembered we’d done that after Larry’s hospitalizations.  He was so available then, and is making himself easily available now.  We felt so cared for.

It felt like an huge gift.  It was the best healthcare experience.





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.

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.


Kicked out of Hospice

Just when we finally thought we were on the same page with our hospice provider, we got kicked out of hospice.  Maybe I just complained too much.

We knew recertification was coming in February.  When I asked what the process involved, we were told we’d have a face to face with the nurse practitioner.  I’d been preparing a list.

But we got a call at 5 today.  “We’ll be there tomorrow for you to sign the discharge forms.  The decision was made today.  He’s stable.  He doesn’t meet our criteria.  You can appeal.”

What kind of care is that to deliver news of such import with no preparation?  No empathy for what that might mean to us.  I cried for 45 minutes.  I don’t have any energy left for this.

I guess I was too good at being positive.  I want to give up.

How can they say he hasn’t declined?  He’s lost more than 30 pounds.  Without major preventive measures, he has constant skin breakdown.  He’s lost so much dexterity I have to feed him many meals, and many others he just can’t eat at all.  He barely makes eye contact.  You can’t hear his voice.  He needed morphine this week his breathing was so bad.  He was so weak last week he slid to the floor and we needed to call the non-emergency 911 number for help to get him up.  He had an episode  this week where he got dizzy then just went limp, eyes rolled back, no response to my voice.

They say he’s stable.

So as of tomorrow, no CNA, no medical equipment, no medicines, no nurses checking him out.  We have to re-engage with all his physicians, go to their offices to get them reacquainted with his new symptoms, get new prescriptions for meds, obtain new durable medical equipment, fight with insurance for coverage.

This stinks!!  I hate this!!! I want to give up!!!

We didn’t see this coming.  It’s a terminal degenerative disease and he’s at end stage – how can it be stable???

Life isn’t fair in so many ways.


Respite Care from the Patient’s Viewpoint

Larry is home looking at Christmas cardsPart 1 and Part 2 of my perspective on the healthcare professionals with whom we engage was from my point of view and today I want to present respite care from the patient’s viewpoint.  Larry went into respite care for five days so I could get some good nights of sleep and some time to restore.   He was willing although not thrilled about going.  “I had to psyche myself up before I went,” he said today.

Overall, his experience mirrored mine in some ways – they are mostly set up for bed bound patients.   He said “it was so quiet – too quiet.  I was the only one out of my room.”

“The food was pretty good,” he said. “I could have an ice cream sundae whenever I wanted.”

“Most of the nurses were good, but one didn’t listen to me.”  That particular nurse didn’t listen to his explanation about how to use his catheters and made it more complicated and less comfortable for him.  (I had been told they mostly see indwelling catheters, not the disposable straight catheters we use.)

She also didn’t listen when he told her there were two parts to his Bi-Pap machine face mask.  She started with only the hard plastic part that attached to the tubing and didn’t use the part that goes against his face with the soft silicone gasket.  So by the time she realized what was wrong, he had a cut on his nose from the plastic.

I couldn’t figure out why his hair looked so bad when he came home until he told me they’d only given him one shower in the five days and even then they only put water on his hair with a washcloth, they didn’t wash it with shampoo.  Plus they only shaved about an inch on each cheek and left the rest of his face to go to stubble.

He ate all his meals alone at the dining table in the common room.  Two musicians played the first day and he was the only one listening.  The volunteers were great, but overall it was just too depressing.

I just asked what would have made it better.  “Not going,” he said.  “It was  a place where people go to die.  People were crying.   There were rooms with whole families surrounding the patient.  There was a group of about 20 people that took pictures in the common room.  I was probably in their picture.”

That’s my Larry – photo bombing someone’s funeral picture.

In retrospect, we intellectually know that’s what a hospice house is for.  It’s to take care of people at the very end of their lives.  We should have expected what he experienced in respite care.  But the social worker and the nurse were SO encouraging.  They led us to believe it would be fine, he’d even enjoy it.  They didn’t talk about how different a situation he was in from the other patients. That’s where the disconnect was.

Painting the family roomI did get some good sleep. I also painted our dark family room a light color and we’re both enjoying the new look.  I feel so loved that he was willing to endure the respite week to take care of me.