My First Home Alone

After 7 months of waiting, I have finally moved into my first home alone.  While the landlord finished the renovations, I was 2 months in one temporary place, 5 months in another temporary space. Throughout that time all my worldly possessions were in storage.  Now I’ve reclaimed them – what’s left of my past life, of the houses I owned with my husband.

It’s been a strange melange of emotions.  I’m excited to have access to my stuff – my art supplies, my books, my clothes.  I’m happy to have familiar things around me.  But unpacking has brought back a lot of memories of an old life that is no more.

I unpack the big food processor I bought my husband because he loved to cook but no longer had the knife skills for all the chopping.  It’s heavy and too big for this little place, and for the size of entertaining I might someday do here.  I unwrap the turkey pan that prepared many many holiday family dinners.  Will I ever use it again?  Somehow, in the old house, they didn’t seem out of place in my life so I packed them up for the move.  But do they belong here??? That was the life of wife, the active mother.  Now I’m the widow.  The grandmother.

This is the first home I’ve ever created entirely on my own.  College, grad school etc, I had roommates.  Then I got married.  Kids, divorce, another marriage.  All homes with others.  Never alone.  Yes,I lived alone for 2 years after my husband died in our big house, but we had moved into it together.  Decorated it together.  For a life together.

I suppose there’s the freedom to put things where I want them, choose things I want.  But there are also big identity questions.  Who am I now?  What is this new life I’m leading going to look like?  And for how long?  Mortality creeps in.

I got my new CA drivers license and registered my car.  I wanted to cry.  Why?  I had no great love of Florida, only there 5 years, 5 of the toughest years of my life.  Why did I care?  I guess it’s because it made this move feel so permanent.  That life is GONE.

Then there’s the whole holiday thing.  Last year I was entirely alone, celebrating Christmas dinner on Zoom.  This year I’ll be with family.  Better.  Much better.  I brought the old Christmas decorations for my kids to choose from.   I love having my grandson run in to open the wooden doors of the Advent calendar my kids used to open.

There are many tree ornaments, though, that no one will want.  Ornaments Larry and I bought on our many travels.  We’d always have two trees – one for the family ornaments and one for our travel ornaments.  As we unwrapped them together, we’d have fun remembering each trip as we sipped eggnog.

I don’t want to take them out alone.  And the kids weren’t there.  They don’t have those memories.  Should I even bother to keep them?  That’s one of the many things I miss.  Shared history.  Shared memories.

Am I hanging on to the past, keeping these elements of a past life?  I put  a picture of my husband on a shelf.  It’s been a long time – 32 months since he died.  Am I clinging to the past?  Am I holding on to grief as a way to hold on to the love?  Am I afraid to move on?  Am I resisting building a life alone?


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.





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.


Why Are We Still Enjoying Life While He’s Dying?

Original artwork called Indigo HorizonWhy are we still enjoying life while so many others in similar situations can’t?  In the caregiver discussion groups I read of people losing themselves, losing any pleasure in life and that’s not us, except for days here and there.  I’m realizing there are lots of reasons.

My daughter pointed out that Larry is still Larry – no cognitive decline or personality change so far.  That’s huge.  Although mental deterioration isn’t as common with Multiple System Atrophy as other neurological diseases, caregivers  report some loved ones have serious cognitive issues and others with major personality changes.

Last week we went to Walmart to buy some board games he thought he could play and spent one evening playing “Shut the Box.”  We couldn’t have done that if he wasn’t all there.

Who we both are makes a huge difference.  After all Larry was never an angry guy – more go-with-the-flow, so he’s amazingly tolerant of the impact of this disease,not cranky.  I’m definitely NOT go-with-the-flow, but I am pretty resilient.  Generally we are both happy optimistic people.  We take what comes and make the best of it. We still have a good marriage and enjoy each other.

We’re friendly, too.  People want to help us, and seem to enjoy helping us.  That’s partly how awesome they are but also how awesome (? ha) we are.  We moved away from our long time friends, but we moved into a real community of people. Most are at an age where they’ve seen enough ups and downs in life that they are empathetic to our situation.  Walking the dog helps to see people on a daily basis, too.  It forces me to get out.

We’re open about the disease and not self-conscious.  We invite friends for cocktails rather than dinners and they are happy to come.  They aren’t uncomfortable around Larry’s disabilities and symptoms.  We’ve gotten so we don’t worry if I have to stick my finger in his mouth to move a cracker that got stuck, and they don’t seem to care.  We don’t hide what’s going on but we don’t dwell on it either. Because we still do stuff we still have stuff to talk about other than the disease.

Where we live helps in more ways than just the people.  It’s beautiful and warm and sunny and green year round.  We can get outside and see pretty things, pretty places.  We’re not shoveling snow or putting on coats and socks and hats and gloves just to leave the house.

I’m also realizing the freedom the power wheelchair has allowed us to continue living life.  We found out how to qualify through one of the Neurochallenge education sessions. He might be bed-bound now without it because  I can’t push him in the small wheelchair that hospice provided.  Without the chair we’d be unlikely to go to a meditation with a Buddhist monk like we did last night, or go to see The Fiharmonic (an a cappella group), or see the manatees that cluster in the warm waters of a power station like we plan to do next week.

His type of symptoms help, too, and the fact we’re in a plateau and not adjusting to any new ones.  He can’t do any of the activities of daily living himself, he’s lost tons of weight, he has breathing and bowel and eating challenges, just like other MSA patients I read about. BUT  he has no pain, no nausea, no symptoms that make life unbearable (at the moment).

And last but definitely not least is my willingness to do the hard work.  Because it is hard!  Doing his exercises daily to keep him able to transfer from bed to wheelchair, making sure he does his breathing therapies twice daily.  Educating myself and fighting with the healthcare system to get what he needs.  I’m willing to do the hard work of getting us out of the house, of building a fire, or looking for things we can both do.  I do it for me as well as for him.  I need as normal a life as possible to stay mostly sane, even if it is hard work. I need us to be still enjoying life even while he’s dying!


Making Life Brighter for Both of Us

Original painting of a yellow and orange sunflowerThis new year (all 10 days of it) I’ve tried to find something fun or different for us to do each day.  Some things are little, like a walk together (he rolls in his chair, I walk).  Some things are bigger, like a trip to Arcadia – an old town about an hour inland from us.   It’s making life a little brighter for us both.

My daughter (the PhD researcher in Palliative Care and Hospice for people with dementia) commented that what I do is focus on living rather than dying.  Yes, definitely.

Somehow, accepting the dying has made living easier.  We’re not resisting.  We aren’t focused on fixing the symptoms, just making our way through them as gracefully as we can.   With as little aggravation from the healthcare system as possible (grrr) , but that’s a post for another day.

Maybe the fact that he said he thought he was going to die in February has made our time seem more precious, but strangely I don’t feel more urgency.  I just feel more present in today.

I wake up thinking “what can we find to do today?”  One night we played Scrabble – he’d slide the letter tiles out from behind a screen and I placed them where he pointed on the board.  We’ve had neighbors over for a cocktail – can’t do dinner anymore, it too hard and slow for Larry to eat.  One night I was walking the dog and saw a friend out in the street and said come on over.  We lit a fire in our firepit, they walked over with their own drinks, and we sat visiting outside as the sun set.

Last night I’d invited a woman I met in our community yoga class to bring her husband for a cocktail.  He’d lost part of a leg many years ago in a paragliding accident and they have a great energy that I enjoy.  We had some bourbon, some marinated mushrooms and olives I’d picked up earlier at an Italian market.  Larry had a couple choking moments but it didn’t seem to bother them and we had a lovely visit. I’d even thought to make dinner before they came so it was quick to heat up after they left.  Yay me, or “brilliant” as our guest would say as he’s a Brit.

Larry looking at the turquoise waters from Sharky's PierSeveral days ago it was perfect weather.  Sunny, about 75 degrees, a light breeze.  We drove south to the next town where there’s a fishing pier (Sharky’s) we’d never been on, figuring we’d get out on the water before the red tide returns.  The water was turquoise, people were catching big stingrays, there were bright colored umbrellas shading the tourists in their bathing suits, and the egrets and pelicans circled overhead.

What will we do today?  I’m not sure.  We have the hospice volunteer coming  this afternoon so I can do errands.  But maybe tonight we’ll go to a little jazz concert at a neighboring art center.  Or maybe we’ll find something right at home.

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.





Good Days

Seems like every few months we run out of good days and I get overwhelmed – the tight ‘I can’t do this anymore’ feelings.  Then something happens that loosens me up.  It happened again this week.

Last week we had a number of wheelchair problems.  He drove holes in the wall with his footplate.  He drove off a path at a sculpture garden, taking out several bouganvillea and miring his wheels in soft dirt.  He thought he could walk to the bathroom with the walker when the wheelchair was having technical difficulties and couldn’t so sunk to the floor.  “I can’t do this anymore,” I told him.  “We have to look for a facility for you to live in.”

And then several nights ago he had a breathing attack in the middle of the night.  I finally woke up and curled up next to him with my head on his shoulder and my hand on his chest.  He relaxed and somehow so did I.

This caring for someone is sacred work.  I don’t even know what that means but it’s somehow very important.  Yeah, there’s all the medical stuff we have to do, all the advocacy (even with, maybe especially with, hospice.)

But the really important work is how do we have a good day.  How can I, as a caregiver, make this a good day?  How can we continue to enjoy life?

Dying slowly is hard work.  But what’s better?  Dying fast?

We had a stark comparison as my ex-husband, my kids father, died recently from injuries sustained when his cycling group was hit by an elderly driver.  He never woke up.   Brutally hard for all who loved him, including me.  But what about for him?  He loved cycling.  He had retired early and found a new outlet for his younger athletic passion, and a new group of buddies to share it with.   He died, it appeared, having a good day.

Larry can’t act as fully on what were his passions.  But we try to get as close as possible.  Being outside.  Cooking – the new hospice volunteer loves to cook and they made an amazing roasted red pepper goat cheese lasagna this week.  Sports – he still plays in his fantasy football league.

We don’t know how much time he has.  Just like my ex-husband, and just like all of us,  we don’t know which will be the day he dies.  I want him to die having had a good day.

That means my caregiving work is primarily about good days.  That makes me smile to write it.  That doesn’t mean it’s easy.  It’s never easy.  But it does change my perspective.  We can both have good days.