Open Letter to Hospices

Dear Hospice Leadership:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

 

Angry Again: How Hospice and Healthcare Failed Us

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Darkest Hours of Night

Sleeplessness - up for the sun riseLast night I was awake again at 1, and 2, and 3, and 4, and for the sunsrise.  For awhile I was sleeping better.  I even felt slightly guilty at “doing so well” – whatever that means. Maybe a growing sense I was getting both feet under me.  But travel and fatigue and change of routine knocked me down.  Now I dread going to bed.  Days are hard – empty and meaningless.  Worst are those darkest hours of night, when sleep is so elusive.

I wrote in my journal of remembering years ago saying to Larry that bedtime was my favorite time of day, when we’d get into bed and he’d gather me into his arms and hold me “safe.”  Then remembering the time when the CPAP machine with the tubing and face mask joined us in bed.  So many ways that damn disease changed our lives bit by bit.

I read recently that grief creates a hole in your life that takes a long time to heal.  My life was so enmeshed with Larry’s in the end that the whole of my life feels like a hole.

But you carry on because there is no choice.

Kayaking mangrove tunnels in Sarasota
Kayaking mangrove tunnels

On my better days I fill my journal with all that I am doing, all that I have added to my life since Larry died.  It’s helpful to list the ways I feel courageous, trying things and expanding my “life space.”  Some have worked, some haven’t.  I’m proud that I’ve framed paintings and submitting them to two exhibits.  I celebrated my birthday by arranging a party with neighbors.  I went on my first group kayak trip through mangrove tunnels.  In the last two weeks I’ve traveled to my high school reunion (not a great idea) and to a family funeral (a difficult and courageous choice).

I’ve even started working again, because out of the blue an old colleague asked for me to do some work for them, and an old client called with a project.  It felt good to put my brain to work in new ways, remembering my competencies.

It’s good to be with friends, and be social, sometimes.  I still can’t handle larger groups and talking with people I don’t know well is completely exhausting.

Being exhausted is dangerous.  It’s when the darkness descends.  I have no extra stores of energy so my energy is depleted easily.  That’s what happened last week.  Too much travel.  Too many people I had to talk to from the past – at the reunion, at the funeral.  So many memories.  When a well runs dry it starts to suck up black dirt rather than clean water.  Then replenishment is needed.  But how?

We’re in that time of year when darkness is coming earlier and earlier.  Literally and figuratively.  What do I do with myself?  For awhile I was going to bed early.  But now I don’t want to even be in bed.  To face those darkest hours of night.  Alone.  More firsts are coming.  Thanksgiving.  His birthday.  Christmas.  Valentine’s Day.

I read an Iroquois grief prayer that has a line  “a great sob has lodged in your throat.”

This is a disjointed blog post – bits and pieces, not a whole.  That’s what my life feels like.

 

 

Mourning Rituals for 6 Months

I sit here at 8:49 PM.  Larry died at 9:02 exactly 6 months ago.  Both a heartbeat and an eternity.  I’ve spent the day in little mourning rituals.  Right now, I have a candle lit next to me which I’ll blow out at 9:02.

Larry enjoying the beach
Larry by the Gulf 10/16

In a way these “death-anniversaries” feel like a way to stay close to him.  I spent the day doing “his” things.  He loved walking by the water so I went to the beach this morning, a clear blue sky above the warm turquoise Gulf.

I came home and wrote in my journal, partly a letter to him about where I am now.

I ate some of his favorite foods – pizza for lunch, chicken wings for dinner.  I had a tiny version of his favorite cocktail – a gin and tonic, before dinner, and a tiny sip of his favorite liqueur – Amaretto.

I wore his Black Dog T-shirt that we bought on Martha’s Vineyard when we went over to look at one of his son Cody’s jobs.  I spoke with Cody today.

Larry playing in the snowI sat with some of my favorite pictures of him – the ones that show his mischievous grin – like the photo of him engulfed in snow, just after he had opened the door to our porch after a huge blizzard and fell backward in “snow angel” pose, wearing just a turtleneck and jeans.  That was obviously not taken in Florida!

And of course, I cried.  But not only did I cry when I consciously felt the depth of my loss.  I had moments throughout the day where I wasn’t even thinking of Larry specifically and yet felt sadness just leak out of me.

I had planned to take down the black ribboned mourning wreaths that have hung on my front door since the day after he died, made by a loving friend.  I figured that 6 months would be an appropriate moment.    And truth be told, I think there may be  geckos either eating them or nesting in them.

I couldn’t remove them.  It didn’t feel right.  It felt like a betrayal of the grief I still feel.

And yet – if you ask me to rate how I’m doing, I’d say I’m doing just fine.  Doing just fine, learning how to live well with the grief.  Just like we learned how to live well while he was dying.   I’ve read a lot of research about how resilient we can be, especially when we allow ourselves to feel the grief and also figure out how to move on.  That research makes me optimistic.

It takes work. I push myself to expand my comfort zone little by little.  I so miss being able to just sit quietly with the person who loves me, who I love.

These little 6 month mourning rituals helped me get through this day.  I sort of felt with him.

Six months.  A heartbeat and an eternity.

The candle is now out.

Extraordinary Empathy of Grief

My heart is ripped open again.   Raw mThe loss of light - a sunset signifying the empathy of griefemories have returned that had just started to fade  – of those last days before Larry died and the days and weeks just after.  A family member lost her husband last week and I have come to know the extraordinary empathy of grief.

I don’t just think about her loss with sadness, I vibrate with the pain of it.   I literally feel her pain in my body, making me want to reach across the miles and join my broken heart with hers.   I want to take away their pain but all I can do is tell her to be gentle to herself, that there is so much chaos of emotion to come, so many ups and downs.  I want her to know that whatever she feel sis ok, and that if she feels the world has changed for her but not for anyone else, that it has changed for me as well.

I heard an unusual interview between Steven Colbert and Anderson Cooper in which they discussed their grief over the deaths of their parents.    Steven Colbert commented that all of life is a gift, including these painful deaths.  Anderson Cooper couldn’t seem to agree or to understand at first.  Colbert explained that if not for his own grief, he would not have understood Cooper’s grief in the same way.  He would not have been able to write the condolence letter that so touched Cooper.

I guess it is one of the gifts of being human that we can feel for one another.  It brings us closer even in our aloneness.  I know there are many other life experiences that I truly didn’t understand until I went through them myself – getting married, having a child change your life, empty nester syndrome, losing a parent as an adult, etc..  Is that the key difference between sympathy and empathy?  The experiential quality of understanding?

But even in the shared experience of losing a husband, our experiences are different.  My loss, coming home after the funeral with no family within a thousand miles, is different than her loss, surrounded by children and siblings.  My loss, after years of Larry’s illness and watching him lose his body slowly, is different that her loss after her husband’s very brief illness.   And different from another family member’s loss of her husband after a sudden accident.

So while I feel that extraordinary empathy of grief, I also feel incredibly alone in this renewed recollection of the days and weeks surrounding Larry’s death.  I wake in panic, a feeling almost like an electric current running through my body and a heaviness in my chest.  The hours of the day pass slowly, even though I am doing things, and when darkness falls, even the minutes seem long.

I worry about what next, and tell myself not to worry.  I work at staying in the day.  And then the worry returns.

I know that these awakened memories will start to fade again and some of the happier memories will take over.  And I will continue to make new happy memories. In the meantime I can only be gentle with myself.  And be grateful for the gift of being able to feel this empathy of grief, even as much as it is painful.

 

Five Months and Not Fitting

These things don't fit together
They don’t fit

It’s a little over five months since Larry died.  Just writing that makes me sigh.  I’ve been feeling different – it’s this intense sense of not fitting anywhere.  Anywhere!!!

I love my house but I feel like it just doesn’t fit.  I have good friends and neighbors but I feel like I just don’t fit into the activities we do.  I have visited my kids around the country and I sure don’t feel like I fit where they are.  I went back to Cape Cod where Larry and I lived four years ago and I don’t feel like I fit there either.

I don’t know what other words to use.  It’s an awkward, uncomfortable feeling.  It’s more than not belonging.  It’s more than being single in a world of couples. It’s more than not having the one person in the world you’re completely comfortable with.

It’s more visceral than that. It’s physical. Like my shape isn’t right for the space I’m in.  It makes me crazy – I want to do something to change it, to make the feeling go away.

Do what?  Sell the house?  Move?  Move where?  Get a job?  Doing what?  Everyone says don’t make a major decision for the first year, but what do they know about these feelings?

It was just this week that I started to explore the idea that this is just grief in another form.  Duh?  It doesn’t show up as before, crying, intensely missing Larry, being lonely.  I mean I feel those things, although perhaps less often during the course of a day.

I realize this grief is more about a sort of proprioception of identity.  Proprioception is the sense we have of where our bodies are in relation to our surroundings – what keeps us from running into walls and furniture.  It extends to things we ride and drive (which is amazing when you think about it) so we know pretty much where the edges of our car or our bicycle are.

My identity for many years came from a life tied fastly to other lives, one with many – parents, kids, and of course Larry.  In these last few years my life wasn’t a separate life running parallel and along with Larry’s anymore but rather so intimately bound in time and space and goals and outcomes that our two lives became one life.  My proprioception of myself was of that whole one life encompassing us both.

So the space I took up in relation to what was around me was of that entwined two lives.  And now I am only one half of that.  I don’t take up all that space.  So I don’t feel like I fit.  A horrible simplified analogy is a fitted sheet that you’ve ripped in half and are trying to fit on your bed.  Or to go the opposite way, driving a tractor trailer after you’ve been driving a Mini-Cooper.  It’s wrong-sized.  Life feels wrong-sized to me.  I’m like Gulliver on his four travels – not fitting in anywhere he went.

It helps to name it grief.  To see these new feelings as part of the process of letting go of the old life, of letting go of Larry, of starting to create a new life.

It isn’t absolute reality that I don’t fit.  It’s just a feeling.  My neighbor said “Nancy, you do fit.  You just feel like you don’t fit.”  Feelings come and go. I’ll just have to breathe and grieve and let time pass as I figure out where the edges of my identity are again, and where I am in relation to my surroundings.  Easy to write and hard to do!

 

 

 

Grieving in the Neutral Zone

Original Pastel Painting of Walking through Light and Dark or grieving in the neutral zone
Light and Dark at Discovery Park in Seattle

Years ago I discovered William Bridges’ work on transitions and used his three part model in work I did with organizational change.  I returned to it recently and found the three parts of “ending, neutral zone, and beginning”  to help me think about my grieving process, although not quite as linearly.  Grieving in the neutral zone is more of a pendulum swing process, from dark to light, from past toward unknown future.  Back and forth repeatedly.

Bridges wrote a more personal book called The Way of Transition; Embracing Life’s Most Difficult Moments.  He applied all his theories to his own grieving process after the death of his wife.

The ending is obvious in the case of a death, such as his wife, such as my husband, Larry.  What Bridges urges is to look not only at the loss of your spouse, your identity as caregiver (in my case), but also at what else you have to let go of.  I have to let go of the future we’d hoped for, as well as the suffering of the past few years.  I have to let go of yearning for things to be other than they are.

In the neutral zone, I have to endure the chaos of the unknown. I walk daily  in between the past life as I knew it which is now gone and the future life I will build still to come.   I live walking from darkness into light, and back through darkness, and back into light.

Bridges describes the neutral zone as exhausting, anxiety provoking, and full of vulnerability.  Oh, yeah!!!  On the other hand he offers some benefits if we can stay in the neutral zone and not move on too fast.

He describes the creative possibilities:  a time to challenge the status quo (what your life has always been) and being hospitable to new ideas (new directions your life could take).  He suggests thinking of it as a time of “active waiting.”

For me what also stands out is the word itself:  Neutral.  Neither good nor bad.

Feeling the intensity of grief  I felt the other day isn’t bad.  Feeling the glimmer of new possibilities isn’t good.  They are just feelings.  Temporary, at that.  Maybe if I sit quietly I can find the peace that sits under both, the presence in today.  In “active waiting.”

I went to a meditation class last night and felt that underlying peace momentarily.  Felt the existence of both grief and ease to be two parts of the same whole.  Two parts of grieving in the neutral zone.

I have this instinct that that pendulum swinging back and forth is important progress.  That movement from dark to light and back to dark and back to light is movement – it isn’t standing still.  And movement will give me new perspectives.

 

 

 

Darkness Descends Again

Original painting of darkness descending After a few days of feeling lighter than I had in a long time, darkness descends again.  Two days ago I woke sad, depressed, despairing of my life as I see it now.  I dreamed about Larry, waiting to go somewhere with him and him not ever getting ready.

Yesterday I cried for hours.  The weight of the past felt so heavy.  The weight of the present even heavier.

I cried for Larry and all the indignities he had to endure, for how hard it was for him these last four years  – with each day taking more and more from him.  I cried for myself and for all I had to endure, for the years of worry, and how hard it was to keep on trying to create a good life for us.

I felt critical of everything I’d done or not done, and angry at world, and at the healthcare system for making everything so hard for us.

What do I need today, I asked myself, to find some comfort?  I feel so…. so depleted.

I tried to think of what Larry would have said.  Immediately it came to me.  He would have told me to stop worrying about the past.  What happened had happened, and was meant to be.

I read a passage in the daily affirmation book Healing After Loss, by Martha Hickman.  She quoted Julian of Norwich:

“I was wholly at peace, at ease and at rest, so that there was nothing upon earth which could have afflicted me.   This lasted only for a time, and then I was changed… I felt there was no ease or comfort for me except faith, hope and love, and truly I felt very little of this.  And then presently God gave me again comfort and rest for my soul… And then again I felt the pain, and then afterwards the delight and the joy, now the one and now the other, again and again. ”

I was particularly struck by the aptness of this reading.  Also the serendipity that the quote was from Julian of Norwich, who a dear friend had been studying for several years.  My friend has just returned from a trip to the Church of St. Julian in England to visit the anchorage in Norwich where Julian wrote and lived.  As my friend sat there imagining Julian (and herself) being walled into the space, she felt the darkness of her own mortality.

How strange that these meaningful words  came to me from someone who lived from 1342-1416, and in whose abode my friend had just sat for hours.

I read recently that emotions are meant to be temporary solutions, and apparently centuries past, Julian knew that to be true.

Julian’s quote is followed by Hickman’s comment: ” Just when we think we have ourselves in hand and are going to be able to manage this, we are suddenly plunged into despair again. ”

Yes, darkness descends again today.  But I know, I hope, this too will pass.  It is all part of the process of healing.   I can’t rush it.  It will take its own time.  Damn it!

“He that lacks time to mourn, lacks time to mend.” – Shakespeare.

 

Traveling with Grief

One of the beaches I walked while traveling with griefI hated to leave on my trip because it felt like I was leaving Larry behind, but traveling turned out to be the best thing I could have done.  After three and a half weeks away visiting family and friends, I came back feeling lighter, more open to new possibilities.  Traveling with grief was not easy, but distance and new surroundings  created an opportunity for new perspectives.

It was a complicated trip and took weeks to plan, mostly because I was overwhelmed with indecision.  My grief-addled brain is still not fully functional for executive tasks.  I was going 5 different places but I started with booking just one flight.  Days later, I booked another.  And then another.

Figuring out how to fit my visit into other people’s busy lives, and into my kids’ homes evoked a sense of not belonging with anyone.  Once I was away that feeling was heightened.  I kept wanting to call home to report in, to share my daily experiences, but there was no one to call.  No one at home to check in with.    I even had several panic attacks of forgetting to do something, forgetting to take care of something (or someone.)

In spite of being with people all the time, I often felt lonely.  I was reminded of a movie of an astronaut taking a space walk and losing the tether, being left to tumble through space entirely alone.   I even had dreams about calling Larry to come home, and him telling me “I can’t come home.  I have things I have to do.” My brain was still working on accepting that he is really gone.

Though traveling with grief, there were wonderful times.  My grandson ran across the living room in the mornings with a big grin and wide open arms to hug me as he yelled “YaYa!”  There was taking him to the zoo, and a children’s museum.  Long walks by the Pacific, and putting my feet in Puget Sound.  Going to meetings with my daughter at UCSF and to my son’s lab at UW, meeting his girlfriend, sharing dinners with them.  Seeing my brother and his family, and taking my sister to lunch.  Spending time with Larry’s son and his wife and daughter.  I could see Larry alive in his son!

There were hard firsts that I expected, like our 23rd anniversary.  And other firsts that snuck up and sucker punched me, like July 4th fireworks. We’d always enjoyed watching them together!!

I stayed for a week in the town where Larry and I lived for 20+ years before moving to Florida 3 years ago.  On a gray day I walked by the house where we used to live, past another house in which my mother and stepfather lived.  Felt the sadness of all the losses.  Felt my own mortality.

I visited many friends we used to socialize with together.  Some visits were delightful, others were harder.  Some friends asked wonderful caring questions about how I was doing, and wrapped me in their arms when I cried.  Others avoided Larry’s death and my grief completely – which felt SO weird.

Many people asked “where are you going to live?”  “Will you stay in Florida?”  “Will you move back?” Will you go back to work?”

I didn’t have answers, and at first was angered by the questions, by their assumption I had answers so soon.  Perhaps I was angry with myself for not knowing.  But as I traveled, I began to realize that I couldn’t go back anywhere, I had to move forward.  I couldn’t fit myself into my old life, I had to find a new life.  I couldn’t live my kids lives, I had to make my own life.   I began to feel a little shiver of possibility.

I was worried about coming home to an empty house after so much time with people.  But I walked in and felt the comfort of my home and the memories of Larry wrap around me.  I felt so much lighter!    As if a shift had happened through the process of being away for so long.

We’ll see how long this feeling lasts.  I know enough now to expect that both the bad feelings and the good feelings are temporary.  Yesterday, I woke with a momentary thought of wondering when Larry would be getting home.  Today I miss him terribly!!!

Even though I’m home, I’m still traveling with grief.

 

Experiencing Both Grief and Resilience

Original pastel by the author of light through the clouds, the feeling of resilience and grief.
“Light Through the Clouds”

It’s been twelve weeks since Larry died and the heart-smashing black abyss of grief that I first felt is beginning to morph into a more gentle shadow that comes without warning, then fades away.   Most days I spend at least a little time writing and reading about loss, about caregiver recovery.  I cry less and I’m doing more, finding little joys and comforts that bring relief.   I believe I am experiencing both grief and resilience.

I recently read about both in the book  The Other Side of Sadness  by George Bonanno who has conducted years of research with bereaved people.  He says the well-known Kubler-Ross theory of five stages of grief (denial, anger, bargaining, depression, acceptance) was based on observations of people with cancer who were coming to terms with their own mortality, not on rigorous study of people experiencing loss of a loved one.  And Freud’s theory of needing to “work through grief” or it will overshadow your whole life was just that – a theory.

Bonanno’s research says that 60% of people recover pretty rapidly (within six months) from their initial grief and what facilitates that recovery is resilience.  I was intrigued reading his comment that emotions are meant to be temporary solutions.

As I understand him, people who are resilient tend to be able to accept and embrace that there is an ongoing oscillation between grief and joy.  Each are temporary.  They are able to feel both and they are able to manage both.  They can cry, and they can also laugh. They can express their grief, and when necessary, they can suppress their grief (at work, for example).

They also feel, even in the dark depths of grief, that eventually they will recover.  They will experience both grief and resilience. They have an optimistic view of themselves.

Is that me?  As Larry lay dying and then in the hours that followed his death, his son and I were able to laugh in between when we cried.  Those swings were wild ups and downs, crazy oscillations of emotion that followed into the next days and weeks.

Now I’m finding that there are still oscillations, but smaller ones.  Good days and bad days.  Good nights and bad nights.  Good hours and rough hours.  Overall though, both peace and sadness.  There is light between the dark clouds.

I look back to our last months together, when Larry was experiencing so many symptoms and we still found ways to enjoy life.  We were able to hold both polarities – dying and living a good quality of life.  I’m figuring out how to do that for myself.

That doesn’t mean I don’t miss him.  I do.  I miss him terribly.  A few days ago would have been our 23rd anniversary.

But Bonanno talks about separating the grief from the memories, and even from sadness.  I feel more sadness and less intense grief.  What’s the difference?   Grief feels more like yearning to me- wanting him back, hating that he’s gone, wishing things were otherwise.  Sadness is sitting with the loss.  Accepting I have a big fat hole in my life but I still have to move on.

On the other hand, my love and memories will always be there.  In fact they feel more tangible and available and comforting now than right after he died, when they were too painful to think about.

Maybe I’ll fall apart tomorrow, but according to Bonanno I have a 60% chance of not falling apart for very long.  As for the future, if I feel like I’m coming apart after six months or so I will seek counseling, because that’s when the research indicates initial grief starts to turn into chronic grief and I’ll need help.

In the meantime, I’ll accept that things can feel both surprisingly normal, and then pretty darn hard.  That I can feel happy, and very sad.  That I am experiencing both grief and resilience.