Blog

What Will Today Bring After a Night from Hell

Original Painting of what comes nextWhat will today bring?  It was a night from hell.

We were alone in the house and had a quiet evening watching a Hallmark movie.  A friend came over at 9 and helped me get him into bed.  We fell asleep around 10:30.  At midnight he woke me with gurgling gasping breathing.

Breathing treatments.  Gurgling, gasping.  Morphine.  Gurgling, gasping.  Meditating and praying.  Gurgling and gasping.  More morphine.  More breathing treatments.  I thought perhaps this was going to be the end.  I wasn’t in panic.  I just wanted him more comfortable.  I held his hand and leaned my head against his.  He was hot.

I thought of calling a friend.  But what could they do?  I didn’t worry about disturbing them.  I didn’t call because I wanted to just be quietly alone with Larry in the intimacy of the night.

At 2:00 AM I called the emergency hospice line to see if they could offer any other treatment ideas.  I was calm.  I got a recorded message and was put on hold for 2 minutes.  I hung up.  I wanted to just text my questions.

I put Larry’s Bi-pap mask back on him and brought the dog to cuddle under his hands.  The breathing problems had escalated by now to moaning in between gasping and gurgling.  I called hospice again.  More recorded music on 2 more minutes on hold.  I hung up.  I sang to him.  I played music on my phone.

Finally I called hospice again and reached a person who apologized that they were having phone problems.  Asked questions.  Suggested I crush a Xanax and put it under his tongue.  Said they’d call the triage nurse.

I crushed the Xanax.  I got a tiny funnel – I have two and had the presence of mind not to use the glass one even though it was a better shape because of the possibility he’d bite it.  I brought the crumbled pill and funnel into the room and took off his bi-pap and just stood there feeling helpless.

His body was restless, his teeth clenched.  It would have taken several people to get the crumbs under his tongue.  I should have asked how the hell I was supposed to accomplish this task?  What other ways might I do it.  I wanted to text back and ask.  I didn’t want to call and be put on hold again.

As I waited the 30 minutes for the triage nurse to call, his breathing finally slowed and his body calmed.  I figured the morphine was finally kicking in.

I told her we were okay and she started to ask questions to understand what might have happened to start the episode.  Had I just given him liquids?  Had he aspirated?  She clearly didn’t understand that it was just his Multiple System Atrophy.

So what will today bring?  We have a nurse coming soon to check his pressure sores.  A new nurse who is replacing the nurse we met last week and told our story to and explained Multiple System Atrophy.  This nurse is  brand new to hospice.  Any hospice.  Hmmmm.

I’m glad the pressure wounds will be checked.  They are awful now that he’s sleeping so much.  At this point, it’s not their medical answers I need.   I ordered a medical grade sheepskin to see if it would help. We’ll try that today.  But I want not to have to change bandages on his butt.  At all!

So many of the caregivers who remain active in the discussion group after their loved ones die talk about the PTSD they experience  before and/or after the deaths.  What was interesting to me was how many mentioned the pressure sores as a trigger.

Why does treating pressure sores stand out for these caregivers in the long list of horrors we deal with?  Is it the intimacy of it?  Perhaps.  Is it the ugliness, the odors?  Is it how painful they are for the patient?  Perhaps.  Maybe it is also the absolutely tangible visceral evidence of the the deterioration of the body.

Someone asked me whether I was dealing with my emotions.  Which ones?  Should I be grieving his impending death?  But according to the Multiple System Atrophy discussion groups, these symptoms could go on for months.  And months.

I can only stay in the present.  I’m calm.  I’m accepting.  I’m exhausted.  I’m grateful for my family and friends. To everyone of you who is reaching out by text or message or phone or cards.

In a few minutes I’ll go wake him up and figure out what will today bring.

 

 

 

 

 

So Many Emotions, So Very Tired

Moving from Anger to Acceptance Original Painting in Watercolor and InkSo many emotions.  We’ve completed the re-entry to hospice. My daughter flew in and has managed all of the details, given so much loving care to both of us.  I had to make her go home to her husband, her two year old son, and her consuming career. Now a dear friend is with me.  It’s early hours, still dark. I’m so tired.

Larry’s been sleeping or half-sleeping most of the day, some hours in bed, many hours in his wheelchair.  He’s drinking a lot, eating almost nothing.  He seems calm, only in pain when we move him, and can respond with head nods or finger raises.

Thursday night he had a horrible breathing/gasping/gurgling episode so we were up for hours, then I was up for a few more hours, unable to sleep.  Somehow, my anger at hospice started to work its way from the forefront into the background and I felt acceptance seeped into me.

In those dark hours I started to feel part of the web of life, and death.  To accept him gradually, slowly leaving his body, over years, now over weeks, days, and hours.  I held his hand, I meditated with him.  I tried to say the Lord’s Prayer but my muddled brain couldn’t remember the order, so I sang it to him instead – the song a memory from my high school choir years.

The process we’re going through felt bigger than both of us.  I felt peaceful, surrounded by the love of our “community of caring” – all the family and friends, old and new, that were supporting us in their hearts and their actions.   People reaching out by text, phone, cards, or comments on this blog, people showing up at our door with food.  A neighbor I don’t know all that well came over with a list of all the days and times this week she could sit with Larry if I wanted to get out.

My hand made wedding ring broke this week.  Such irony.  It was so tight I had to have it cut off.  That felt like a horrible symbolism, seeing the tool cut my rings in half and I cried.  But this wonderful local jeweler fixed it overnight and they are back on my finger, looking all shined up and beautiful.

Many people with Multiple System Atrophy die sudden deaths, their breathing just stops.  I used to think that would be a blessing but now I’m not so sure.  If things continue as they are, this will be a gentle death for him, and yet not sudden  –  we get to say “I love you,” many times over.

And of course, he many rally for awhile and we’ll go through this process again.  And perhaps again. Multiple System Atrophy is such a cruel disease!!!!!

I’m tired.

I’m tired.

I’m tired.

His needs have increased so much in just this week.  He’s thirsty.  He reaches for the cup or tries to roll his wheelchair toward where it sits on the counter.  But he can’t drink alone  and needs to be given sips of water.  Sometimes he can sip through a straw.  Sometimes he needs the cup held to his lips.  He needs his position changed in his wheelchair.  He needs his wound bandages changed.  He’s thirsty and wants sips of orange juice.  He needs medicine. He wants something but can’t tell us.  He’s thirsty.  He’s thirsty.

I’m tired.

One day a symptom gets better.  Another day, there’s a new symptom.  Where are we on this journey?  No one knows.  There is no knowing.  There is no control.  Only his needs.

At times I feel such love and such sadness.  When someone arrives that hasn’t seen him recently, I see his decline with their new eyes, and am almost stunned by it and want to cry.  Other times, I’m angry at him for being so needy. Can’t I just eat my own dinner, instead of giving him sip after sip of water? I’m tired! But he keeps reaching for the cup.

So many emotions.  And then there’s a moment in the day where I see the faint glimmer of a smile, the tiny mischief in his eyes as something absurd happens.

I love you, Larry.

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.

 

 

 

 

Things I Miss

Things I miss include seeing him standing tall, like the poppies in this paintingThere are so many things I miss that Multiple System Atrophy disease has taken away from us!

Ability to travel, for example.  We loved to travel together.  A weekend, a week.  New surroundings or familiar ones.  Warm or cold.  Skiing was featured in a movie we watched two nights ago and I suddenly missed the fun we had riding up the chairlift together and skiing down, enjoying the conditions or complaining about the ice, then quitting early to sit at the bar for an apres-ski cocktail. I miss the fun and laughter together in those surroundings more than the skiing itself.

The more poignant ones are the daily things.  The little connections that used to happen throughout the course of a normal day.  Like conversation.  Any conversation.  It’s so hard for him even to get a single word understood. Even with my ear to his mouth.

We were having dinner a few weeks ago and I had lit a fire in the fireplace and then lit a candle between us.  I thought about all the things we used to talk about during dinner – the kids, our day at work, the books or articles we were reading, how we were feeling about life, each other.  Now we just struggle to get through every meal  – getting the food to his mouth, chewing, swallowing without choking.  It’s a slow meal, not because it’s leisurely but because it’s physically hard.

I told him I missed our conversations and asked if he did, too.  He nodded and I was so sad.  He doesn’t even get to have conversations with other people.  Just a few words here and there.  At least I can talk to others.  But it’s him I want to talk to.

Then there’s the physical connections.  The little touches.  A hug and kiss before he left for work.  Holding hands. No shoulder rubs, back rubs, foot rubs.

We used to always snuggle on the couch when we’d watch TV.  Now he sits in his wheelchair and I sit on the couch alone.   He used to gather me in his arms to warm me up when we first got into bed.  Now I help him get from wheelchair to walker to bed.  Lift his legs onto the mattress and position his feet on the foam cushions that protect them from bed sores.  Help him with his catheter.  Then put bandaids on his nose before I put on his face mask and turn on the oxygen and Bi-Pap machine.  Those are all physical connections but not quite the same as snuggling.

Other things I miss?  Walks!  On the beach, summer and winter.  In the woods of New Hampshire, on the colored leaves of fall or with snow falling around us.  In the shallow waters of the Gulf.  Just four years ago, when we came to Florida for a few months before we moved here,  we were walking seven miles a day, barefoot on the beach.  We’d walk to a beachfront restaurant for a cocktail, or to another for breakfast.

I miss eye contact.  Catching his eyes and knowing just what each other was thinking at a party.  Now his head tilts down and he rarely makes eye contact.  Sometimes I just perch on the edge of the bed and look into his eyes when I get him up in the morning, just for that connection.

The other day a friend was headed to the airport to be met by her husband on her arrival.  I remembered all the months Larry would drive from  Cape Cod to Logan Airport in Boston to meet me when I’d return from working a week or two in Alaska with the Alaska Native Healthcare organization Southcentral Foundation.  I’d walk down the concourse and find him standing tall, waiting, and my breath would catch with love.  Now I never get to see him stand straight and tall.  Even when he transfers from wheelchair to wherever, he is bent way over.

Most of the time I focus on what we have.  But sometimes I can’t help thinking about things I miss.

I guess it will only get worse.

 

 

 

 

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.

BIG SIGH.

 

 

 

 

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.