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.


Caregiver’s View of What Will 2019 Bring

What will 2019 will bring?

The holidays are officially over.  On Wednesday with the help of our CNA I dragged the Christmas tree to the curb for pickup today.  Last night a neighbor put our boxes of Christmas stuff up on the garage shelf.

Putting away the holiday decorations has been bittersweet.  Last year I wondered if we’d have another year to celebrate together.  This week as I put them away I didn’t think about next year, just that I was happy we’d had this year.

New Year’s Eve we went to a party – first time in many years we were out past midnight.  Friends brought the ramp from our house to the house of the party so Larry could roll right in their front door.  He got confetti bombed at the stroke of 12.  I keep finding glittery squares around the house as they fall out of his wheelchair and they make me smile.  It was kind of a normal night.

It’s easy to get jealous of friends who are in London or in Paris.  Friends who celebrated with family.  Friends who are headed out on their winter cruise.  Family who are skiing.

So I muster my energy and get us going.  We went to the beach in the golf cart for a sunset.  New Year’s Day I took out the kayak for the first time in about 9 months, and  I got Larry on his recumbent bicycle.  He struggled keeping his feet on the pedals and he pedaled very slowly but he made it down the street and back with me and the dog trailing in the golf cart as an emergency pit crew.  Two nights ago, we had a picnic dinner by the firepit.  Yesterday came with me to walk the dog for the first time ever, rolling the wheelchair out the garage and down the street to the paths that meander through our community.

What will 2019 bring?  I have no idea.  I can’t imagine it will be a good year.  What do I wish for?  Maybe less energy fighting the medical system and more time enjoying each day.

I asked Larry what he thought 2019 would bring?  What did he hope for?  He said “to make it to February.”  His symptoms have been pretty controlled recently so his comment shocked me.  “I’ve always hated February.  I just have an instinct about it.  Black February,”  he said as I questioned him more.  I asked if he’d ever felt this way before and he said no.

His comments sit heavy with me.

He’s seemed in pretty good shape.  But it can turn so quickly.  All of a sudden yesterday morning his breathing was awful.  He was gasping, panting rapidly.  Here we go again.  The day was full of challenges. In the bathroom. Eating.  On and off gurgling breathing.  A rough night.

Today is better.  Our first hospice volunteer from the Transitions program is visiting.  She brought us Indian food for tonight’s dinner.  I’m writing this in a rocking chair on the screened porch of the little town library.

Who knows what 2019 will bring for any of us.





Choking, Do Not Resuscitate, Green Beans, and Joy

Dark and Light - Choking and Joy in 24 hoursSo this week, my husband was choking and lost consciousness.  We were eating dinner. It was his last bite.  Usually if he has any trouble swallowing, I help him to stand up and just straightening up seems to clear things.  This time I got him standing but he  stopped breathing and collapsed on me.  I had to lower him to his chair then drag him from the chair to the floor without dropping him or hitting his head on the tiles.

By the time I got him to the floor he was gray.  I tried the Heimlich first and turned him to his side in case anything came up.  Then I turned him to his back again and did some chest compressions in the hopes he’d start breathing.

All the while this was going on, I was wondering whether I should be doing it because he has a DNR – Do Not Resuscitate.  Thankfully he did start breathing!

The next morning he was choking on his pills but at least didn’t lose consciousness.  So scary!

A few hours later he wanted to go to our Off-Key Chorale, a group that was formed by the Neurochallenge Foundation as breathing/singing therapy.  It’s for patients and caregivers but also has a few good singer volunteers so we sound quite wonderful, all things considered.

So death and life within less than 24 hours.

On the way to singing, I told him he was really scaring me with these choking episodes and to cut it out!  He said he was scaring himself.  His speech is difficult to hear at best of times but almost impossible to hear in the wheelchair van, which is very noisy.  I pursued it when we got home.

What was scaring him? I asked.  He said it felt like he was dying in that moment.  Panicking that there’s nothing you can do about it in the moments before you lose consciousness.

I told him how I wondered about his DNR and asked what he wanted me to do in those moments?  Should I just leave him be?

He said “I’m not trying to hurry this along.  Do what you can.”  Then something like “don’t do more.”

So a couple times I’ve confirmed with him  that what he wants is for me to try but not to call 911.

As I’ve thought about it, a DNR is so that if you have something awful happened that stops your breathing, your heart – like a heart attack, or a stroke – you don’t want extreme measures to bring you back.  You don’t want to be brought back in even worse condition than you already are.  You don’t want things done to you that will have negative consequences, like broken ribs.

Choking and Heimlich isn’t quite the same, is it?  If I can help him clear his airways, if I can help him start breathing again, I won’t have caused negative consequences and choking by itself doesn’t have long term negative impacts (like a stroke, for example).  I’m not strong enough to do chest compressions that would break his rib, for example.  His bones have to be mighty strong if he’s fallen about 300 times and never broken anything.

So I feel reassured that I understand his wishes.

But it’s still been quite a tough week of rapidly changing emotions.  It’s not a roller coaster, it’s more like jumping off a cliff attached to a bungee cord (not that I’ve ever done that – or will ever do that!)

I’m just going to hold onto a quote I read from another caregiver.  “Never, ever let the fear of tomorrow steal a single moment of the joy today.”  I would add – never let the pain of yesterday steal a moment of joy today.

I’m also not going to give him tiny cut up pieces of green beans ever again!  Who cares if he gets his vegetables???!!!


Caregiving at Home Again

Photo of all my lists for vacationWe came back from our vacation a day early and now I’m caregiving at home again.  Transitions are hard!

Vacation was a lot of work, a lot of lists, a lot of packing and unpacking. We had our challenges that I shared in a previous post .  On balance, I’m glad we went.

Photo of us looking normal at my birthday dinnerThe best day was my birthday.  He had a wonderful and thoughtful card and gift for me.  We spent time sitting on the balcony enjoying the breeze.  I took a nap.  We even went out to dinner at a restaurant adjacent to our hotel.  It was the only meal we ate out.  He didn’t really eat much, and didn’t even drink half of his Mai Tai.  But we were clean, dressed, and out together.  Like normal people.  We even looked like normal people.  I had the waiter take our picture.

Now, back to caregiving at home, I’m back to real life.  It feels good to be in our own home, with all the accommodations to his needs we have here.  I have house stuff to attend to, things to fix and catch up with.  But I feel out of place.  Out of sinc.  Like I can’t get back in step in my own life again.

He’s had some weird symptoms – perhaps blood pressure drops – that make him seem to disappear.  His eyes open wide and fixate on something far away and he doesn’t respond when I call to him.   I tense up and then try to breathe, wondering what to do, if anything, or  if it’s significant, is he about to die?  Then he seems to return to his body and refocuses his eyes.

The scary moments on vacation along with these weird symptoms and his labored breathing and his post travel GI problems make it hard to resume life and just carry on.  Yet, what’s the choice?

I’ll take the good moments, and try not to fixate on the bad.  I can’t fix them so why worry about them?  I’ll do what I can to get my feet back under me.

Today I took the dog for a long walk down to the water and I took an early yoga class just starting up again after the summer in our community clubhouse.  (I was up at 5 AM with Larry’s problems.  He went back to sleep.)  I was grateful to see friends at yoga.  When I got back the hospice CNA came over to help Larry with his shower.  I was grateful she helped me to change the sheets on the bed and offered to help every week.

Research shows that exercise and gratitude are good for your happiness set point.

Hopefully I just increased mine so I can be happier caregiving at home!

Heavy Time and Gratitude

Time is weighing heavily.  We have minutes and hours and days to measure the distances the passage of time.  The measures are failing me.

I don’t know how to use my time, how to feel about my time in any given day.  I’m both bored with too much time on my hands and stressed with too little time – AT THE SAME TIME!  How is that?

My time is out of my control.  My time is unpredictable.  My time is non-rythmic (is that a word?).

I generally think of time as linear – if you visualize it the past is on the left, then the present, the future on the right.  I believe that Asian cultures who read right to left see their timeline reversed, with the past on the right, the future on the left.  When I worked in Alaska I was told that many of the Alaska native tribes envision time as a circle with the past, the present, and the future always around you.

I see only the present.  No future.  No past in a way.  Neither is relevant to our present.   How much time do we have left together?  A day?  A week?  Many months?  He wants the hospice doctor to tell him.  I want to have enough left in my reserve tank to help him through.   How much time?

In any given day, I know I will wake up around 7:15 (because if I don’t the dog jumps up on my side of the bed and bats me with his paw.)  I know Larry will wake as I get dressed and will want help with his catheter.  Then I feed and walk the dog.

After that, who knows?  Larry might need a breathing treatment in bed.  He might want to go back to sleep right away.  This Tuesday the hospice CNA called at 8:13 and said she’d be here at 9:00 (though I’d asked for a late morning shower for Larry as he sometimes doesn’t wake up again until 11.)

I treasure that quiet time alone before he gets up. I’ve always treasured that early quiet. I make a cup of coffee.  I meditate, write, look out the window at the early sun and the long shadows.  Now that he’s so weak, I dread getting him up – NOT having him up.  It’s the heavy wrestling to get him from the bed to his wheelchair, get clean clothes on him, etc.  Once he’s up the hard work is over.  It’s just little things that come unpredictably, whether a glass of water or a new symptom.

I can’t really leave for any length of time or start anything that can’t be left.  I do some chores, empty the dishwasher.  He wants the bathroom.  I keep checking to see if he’s done.  I get his pills ready, his coffee ready.

Finally I can help him clean up and get dressed.  And the day for us starts.

I know I should do my back exercises but I don’t have the energy to make myself get down on the floor.  I do a little painting, but have to stop to help him wipe his hands after he finishes breakfast.  My painting is awful.  Where’s my coffee? Where are my glasses?  Did I take my pills? Where’s my phone?

Then he needs nothing for hours, so what do I do with myself? I didn’t know I’d have this time.

Then I have something I need to do and I can’t find the time.

Okay, I’m sick of complaining.  How much worse it all is for him.   And he never complains.

I’m going to work on gratitude.  Ten things:

  1. I’m grateful that the mornings are almost always sunny.
  2. I’m grateful that I get to have mini-visits with neighbors who are out when I walk the dog and they are all very caring and give me hugs.
  3. I’m grateful we have the dog so I have to get out of the house for at least two walks a day and two other quick outings.
  4. I’m grateful we live in a beautiful neighborhood with wonderful people who are making dinners for us every other night.
  5. I’m grateful we have three fabulous kids who love us and check in regularly, caring family, along with many many friends.
  6. I’m grateful we don’t even notice the heat because we have air-conditioning that works well since we replaced it two months ago.
  7. I’m grateful my brother-in-law has been here to help for a month (he leaves on Wednesday.)
  8. I’m grateful I am healthy.
  9. I’m grateful that except for his Multiple System Atrophy, Larry doesn’t have any other health problems or any dementia.
  10. I’m grateful I have a book to read next to my bed that I haven’t read before.

Funeral Choices

Original painting of a fish with a quote about going with the flowI think I just realized that funeral choices are all about our beliefs about death.  Duh?

Larry and I have been talking about his funeral.  Not that it’s imminent, mind you, but we have to tell hospice who to call.  It hasn’t been the maudlin, sad discussion you might imagine.

It’s been an argument.  Well, if I am brutally honest, not really an argument – more me trying to talk him out of his wishes.  Sounds mean, doesn’t it?  What can I say?  We feel very differently!!!  I want a balance between what we want, and he wants it his way.  Of course he does …. it is his funeral, isn’t it?

I’ve never given funeral choices much thought. I am working to get a perspective to help myself feel more comfortable with his choices, so I am trying to contemplate how we differ in our views of life, God, and what might or might not come after.

I’ve also looked further afield (more Google research) at how others resolve funeral choice differences. Often it comes up as children disagreeing with one another about their parent’s funeral.  I also read about one couple where the husband wanted to be cremated but the wife was a post-Holocaust Jew and the idea of cremation was horrific to her, as you can easily understand.

Strangely, what was particularly helpful to me was reading about how different cultures treat death and funerals.  Like the eastern Indonesians that save up years for a lavish funeral and in the meantime keep their dead loved one in their home, symbolically feeding them.  Or the Malagasy people of Madagascar who dig their loved one’s bones up every 5 or so years to visit with them and get their blessings.  Even colors of death are different – sometimes black, but also white, or even green(in South America).

I particularly liked the idea of some Vajrayana Buddhists who believe that in death the soul moves on while the body becomes just an empty vessel, so they chop it up and put it on a mountaintop for the elements (including vultures).  It’s called a Sky Burial and apparently the majority of Tibetans still choose it.  While it may sound a little ghoulish to some, think of how ecologically sound it is – there are no chemicals used, no land to set aside for cemeteries.  In South Korea, because of dwindling graveyard space, you have to dig up a loved one’s grave after 60 years.

I don’t believe in the classic God figure, heaven, or an afterlife.  I kinda wish I could because it would be very comforting, but you can’t make yourself believe in something.  I believe in universal energy and when I die I just go back to being part of that energy.  So when I’m dead, I’m gone and there is no longer any separate me.

Therefore, the funeral isn’t for me – it’s for the living , whatever they want and need.  Have a New Orleans Jazz Funeral, throw my ashes in the sea, put my body on a mountaintop, or turn me into compressed beads, like some South Koreans who don’t want to have to dig up their loved one in 60 years.  Okay, I do hope they don’t keep my body in their living room for years, even though in our family I remember my mother talking about her grandfather being “layed out” in the living room.

My brother-in-law, Jimmy, who is staying with us for a few weeks to help with Larry, hates the idea of no burial location, no gravestone.  He wants ensuing generations to have an actual place to go to see their ancestors and loves old cemeteries.

I have a friend who wants a Green Burial.

Reading and thinking about such extreme differences in beliefs and in funeral choices actually makes the distance between Larry’s view and my view become so much smaller.  He believes in a traditional God, Heaven, and an afterlife.  He wants to preserve his body for that, say goodbye to his son and friends in the location he spent most of his life in, and be buried alongside his family in the family plot in York, Maine where he was born.  That makes sense to me now, given his beliefs.  I can go with it.

I’ve just realized the funeral has become a brief moment of time that is a concrete location for my angst to fall. The cost brings up my irrational but lifelong “bag lady syndrome” fears about money, and the thought of sitting by his open coffin  brings up my porcupine-like prickly way of protecting myself from pain.

I remember being pregnant with my first child and concerned that so much focus of the pre-natal courses we were taking were about labor and delivery.  After all, no matter how painful the birth was, it was likely going to be over in 4-48 hours.  Creating a new life with this new infant was really going to be the hard work.   How would I manage?

No matter how painful the funeral, it will be over in 4-48 hours.  It’s creating a new life without Larry that will be the excrutiatingly painful hard work.  That’s really what I want to protect myself from.  How will I manage?



What to do with Hope

Original postcard with quote about 1000 reasons to despair I had coffee with a grief counselor yesterday and asked her what to do with  hope that comes unbidden when Larry has had a good night or two (or four as of today!!!)

She has many years of experience as a grief counselor and also as a full time caregiver to her husband in his late stages of Parkinson’s Disease and she is very wise.  She asked “what are you hoping for?”

I thought about it.  “More comfort for Larry.  Less gasping for air, less throat spasms.  Maybe even a reprieve from this pulmonary crisis for awhile, you know –  more good days.”

She smiled and gave me the best answer.

“Don’t try to manage it.  We all need hope.  Where would the human race be without hope?  You need hope – just to get through the days.”

She reassured me that my hopes were reasonable, tied to reality.  I wasn’t hoping for him to recover from his Multiple System Atrophy.  I wasn’t hoping for a cure.

I’ve been worried about my hope, my momentary relief and joy, when we have good hours, good nights.  That I was fooling myself.  That I was wanting the impossible.  That I needed to TAMP IT DOWN!

She said I needed hope to keep going.  But that the days would be up and down, up and down.  I had to take my sleep and my hope when I could get it and not expect things to be normal for a long time.  Not even a new normal.

I guess I worry that hope makes despair all the more painful.  That hope will inevitably cause disappointment.    Of course, disappointment will be the least of the pain I feel.  It’s just another shade of grief.  Perhaps hope is the space in between those moments of grief.

I asked Larry how much time he thought he had.  He shrugged.  “A day?  Two years?”  I asked if his body felt like he had two years and he said no.  “Maybe 6 months.”

“What is it that makes a day worthwhile?” I asked him.  “You, family,” he answered.”

So my hope is that his days are worthwhile.  That our days are worthwhile.  That we can find the moments in the hard days that are worthwhile.   That I don’t have to do anything with my hope – we can live with hope, and cope with whatever reality brings us.



No Expectations

Original painting of a great heron and a quote about expectationsWe had a good night last night, although I had no expectations of it.  Hurray for a good night!  He slept quietly so I slept quietly.

I don’t know why it was quieter, maybe a quieter day, at least for him.  Maybe because we didn’t take him outside (though the wind’s been from the east sending the Red Tide toxins away from us).  Who knows?  I can’t figure out the bad days and I can’t figure out the good days.  But we’ll take them!

I read about an old Zen saying “fishing with a straight hook,” in the book “Being with Dying, Cultivating Compassion and Fearlessness in the Presence of Death,” by Joan Halifax, that I referred to in yesterday’s post.  That expression just struck me, though I am no fisherman.    But it is such a clear visual analogy for no expectations.

If I have no expectations, I can accept whatever comes.  Good or bad.  I can be present for whatever happens.  I can sit by the side of the stream, watching the water flow by, with my fishing pole and my straight hook.

That’s my goal for today.   That and accepting with grace all the help that is being offered us from our amazing family, friends, and neighbors.

Maybe it’s the same thing.  If I have no expectations of myself or others, I can accept all they are doing that I can’t do.  My visiting family are all doing chores – fixing, cleaning, repairing.  My neighbors have created a Care Calendar to take turns bringing food to us.   I am so grateful, albeit slightly uncomfortable.  Though I have a straight hook, the fish keep jumping into my lap.

Expecting nothing is different than having no expectations, isn’t it?  Expecting nothing, I feel surprised and uncomfortable about receiving something.  Having no expectations, I can appreciate and enjoy whatever comes.



Love and Strength and Being Present

Original painting with quote you are stronger than you feelToday I read that being fully present with someone who is dying is the ultimate act of love.

We can never know what’s to come, and dying is the ultimate not knowing, for all of us, but most immediately for Larry and me.

He’s said he’s scared when he’s in the midst of gasping for breath, but mostly he seems sad.  But this morning when I got close and looked him in the eyes and asked  if the effort was still worth it, he said yes.  We smiled and kissed.

Joe, the hospice chaplain came for the first time today.  We talked for awhile and at one point he asked Larry what he wanted, and he said “air.”

I was taken sideways, moving from what I thought was going to be a religious answer to what I thought was a physical one.

Joe, however, commented  that in Hebrew the word for air is the same as the word for spirit or spirituality, I think.  (Hospice chaplains are trained in all faiths.)  That the human need for air which Larry knows so intimately better than Joe or I, is like the human need for the greater spirit.

I move from moment to moment, exhausted but unable to sit quietly. I feel so weak but others say I’m strong. Last night was another rough one.  Gurgly breathing, bathroom, transfers to and from the wheelchair, gasping for air, gasping, gasping.  I asked if he was frightened and he said yes.  I am too.

I gave up trying to make anything better and just sat in the bed next to him, holding his hand, doing nothing but being present.  It was finally enough.  He quieted and fell asleep, and eventually I did too.