Category: After Caregiving

My husband faced the deterioration of his body and the inevitability of his impending death (yes we all know we’re going to die sometime but it’s different when you know it’s sometime soon).  Somehow he maintained his grace, gratitude, and goodwill.  I think these lessons from Larry we can all apply at this time of world chaos.

Everything became unpredictable to him, from the daily ability to hold a spoon, to the ability to draw an easy breath.   And now everything is becoming unpredictable to us, from where we can go, to wondering if we’ll have money to survive, to searching for a store selling toilet paper.   Somehow Larry learned how to accept whatever came that day, without giving up, without wasting energy mentally fighting it and without complaining.

We have to accept, and not give up, but not waste energy wishing what is happening isn’t happening.  Because it is.  And really stop complaining about being asked to stay home so as to save lives of others more vulnerable.

Larry found a way to continue to appreciate life in an increasingly small “lifespace,” as international, then local travel, then even walking became impossible. The beach was a favorite place to relax and regroup, first playing frisbee or paddle ball, then just walking, then just sitting and enjoying the water. When he could no longer navigate the sand, we’d just drive to the water and sit in the car and enjoy the view.

Now, our collective lifespace seems to be shrinking rapidly – my daughter lives in one of the California counties that needs to “shelter in place.”  Just like Larry, we have no choice, other than how we react.  We can rant about it and wish it weren’t so, or we can find ways to live with it, and appreciate life in whatever way we can experience it.

Over time, Larry lost the predictable schedule of daily work, and as many retirees find, no longer knew the days of the week by the activities on his calendar.  But in its place a different rhythm took over – a rhythm that became both comforting (and sometimes annoying).  It was the varied but predictable rhythm of physical exercises, voice exercises, and lung treatments.

We are rapidly losing our predictable schedules and it’s hard to adjust.  We need to rapidly put new rhythms in place, creating some variety and predictability for ourselves, because who else will do it for us?

Larry was open about his problems and in his acceptance of his vulnerability, he drew people to him. He was always grateful for the help he received, even though he didn’t want to be in the position of needing help.   He always wanted to help others, and worked on helping family members even in his last year.  When he couldn’t speak much, he continued to communicate and show he cared about others with a few words or a smile.

This is perhaps the most important of all the lessons from Larry.  We need to be open about how vulnerable we feel – honest with ourselves and each other.  And we need to communicate and show we care, help others, and be grateful for one another.

We’re all in this together.  Unlike Larry, we will survive.  Let’s pay attention to these lessons from Larry, his gift to us, and let’s help each other survive with grace, gratitude, and goodwill.

Who knew that New Year’s Day would bring such new year’s grief? Actually, a friend who is a retired grief counselor knew but we didn’t get together about it till yesterday.  She said she’d always warn people about it and they wouldn’t believe her

Thanksgiving was hard as I wrote in my last post. I survived Christmas quite well, making new memories with my kids, staying in a houseboat in Sausalito and seeing the sights my 3 year old grandson favors – the zoo, the aquarium, etc.

Then I flew home on New Year’s Eve and enjoyed sunset on the beach with friends. All ok.

But starting the next morning all resilience was gone. Although January 1 is just another day, it seemed so significant to start a new year without my husband. The first of many. Impossible.

I felt bereft without Larry.  So lonely.

I could blame it on the jet lag, and certainly that didn’t help.

But there’s no question that all these “Firsts” are hard to navigate and they’ve come so quickly. My first birthday without him in October. My first Thanksgiving without him in November. His birthday in early December. Christmas. And now the new year.

There’s something so symbolic about the new year.   It’s all about the passage of time, and the passage of time makes you look at yourself and your life – both past and future.  After all, the custom of resolutions is associated with the start of a new year, whether or not you make them or keep them. At the very least, it’s time to tackle all the things you postponed until “after the holidays.” At the most, it’s a fresh start, a time of new beginnings, time to start new things, and leave others behind.

So what did I postpone as I worked to hold myself together through the holidays?  Not little things, big things!

All the big decisions about new beginnings.  What am I going to do with the rest of my life? Should I try to rebuild my consulting business? Should I do some other kind of work ? Retire? Where am I going to spend the rest of my life? When should I sell my big house that I rattle around in alone, making me feel even lonelier – a single small being in a space meant for two, or three or four.

I pushed myself hard in the last few days to start making some of these decisions. Then I started having panic attacks and I haven’t been sleeping.

The passage into a new year facing an unknown future alone is scary. And it feels sort of like leaving Larry behind in last year.  I miss him. There is no place of safety or security in my mind or in my heart.

Finally I realized I have to do more healing first, before pushing forward. Get over the holidays. Get past this first rush of new year’s grief.  Get my feet back under me. Stay in the present. Adjust to being home, to being alone after being with family. Not worry about big decisions, until tomorrow, or next week or month.  To stay present in today.

I’ve meditated, alone and in a group. I’ve allowed myself to cry. I’ve gone back to exercising, to yoga. I’m journaling and studying a bit about healing trauma – as caregiving over time involves traumatic experiences.   I’m doing artwork.   I’m tackling little projects, errands where I can feel like I got something done.  I’m seeing friends.

I’m still feeling crappy, but I am feeling less crappy than last week. I’m okay with that as progress through the new year’s grief.

My husband died on April 2.  I can’t believe it’s been eight months since his death.  Three quarters of a year gone by that I barely remember.  I think I’m just beginning to wake up again, from the death and perhaps even more from the months and years of illness that preceded it.

I’ve been rereading the best book on managing to live while grieving – Resilient Grieving by Lucy Hone.  It’s got an optimistic active view about what to do, rather than the passive view that it will just take time.    It’s not just about the research (like Bonanno’s) that says the majority of people will recover to full function in about 6 months to a year, but it’s about research that tells you HOW to recover.

I’ve been doing such activities – traveling, trying new things, meditating, exercising, journaling, spending time with friends, even taking on new clients, while allowing myself to also nap in the hammock and cry when I need to.

So I’ve been asking myself why I felt such deep anguish over Thanksgiving, finding myself dissolving into tears multiple times for several days.  Hone talks about something she calls “grief ambush,”  that she describes as the sadness overtaking you suddenly from some trigger that brings you back to the past.

Thanksgiving was a trigger like that for me, bringing me back to so many wonderful holidays with Larry,

In the first eight months since his death, the loss was dulled somehow by all the challenges of the illness.  His decline, his frustration, his incapacity, the hopelessness of it all – that was front and center.  I found it  hard to even remember Larry before the symptoms of Multiple System Atrophy.

But this Thanksgiving brought healthy Larry back, and part of the anguish was that for the first time I grieved all those six years of darkness.  All those years that I was so strong, so positive – trying to match his positive spirit.  After eight months since his death, in those days surrounding Thanksgiving, I was finally able to grieve the loss of healthy Larry.

And being by myself for the days surrounding the holiday (except for a few hours while I ate turkey), it really sank in that I am alone in the world, the only one responsible for me.  Yes, with friends, yes with family, but ultimately alone.

I feel like that descent was necessary.  Maybe I’ve passed into a new phase.  I’ve felt so wounded from it all and in need of rest, recover, cocooning – staying still in a way.   Maybe I might be ready to start to move, literally and figuratively.

I know that grief is full of twists and turns and it’s not just a list of stages you go through in an orderly fashion, so who knows what will come next.

But today, eight months since his death, and fifteen months since he was first admitted to hospice, I’m thinking that it’s time to find a life for myself.

We always used to invite “strays” for Thanksgiving – people who would otherwise have holidays alone.  Now I’m the stray.  I have an invite for tomorrow, but it’s Thanksgiving eve and I’m sitting home alone (well, with my dog.)  Working hard at not feeling sorry for myself.

All around me are houses full of guests, or empty ones that my neighbors have left to travel to their families.  For days people have been shopping, cleaning, preparing.   They ask  me “where are you going?” with a sort of pitiful gentleness. They want to make sure I’m not alone.  I’m grateful for the invitations, but I just wish it were over.  These first holidays alone are hard!

I’ve done my best to make it as “less miserable” as possible.  I’ve accepted an invite to join my neighbors, where I’ve never celebrated with Larry so there will be no associated memories.

I tried to be good to myself today.  Bought myself sushi for dinner so I didn’t have to cook.  Bacon for breakfast tomorrow – an unusual treat I don’t often cook for myself.  I took my kayak out for a sunset paddle and the sunset didn’t disappoint but I sat at the edge of  tears trying to enjoy it alone.  I lit a fire for myself when I came home.

I know there is no getting past the grief, the loneliness.  No going around it, just through it.

Grief around the holidays is the worst – it’s raw tasting.  It’s coarse and gritty in texture and upsets my stomach.   It’s like a turkey dinner in a fun house mirror – it sort of looks right but isn’t right at all.  Not at all.

I don’t know why the grief feels so different right now.  Perhaps there’s some self-pity flavoring it.  Maybe some anger.  There’s the oh-so-poignant comparison to memories of better times, and the societal expectation of Hallmark and Currier and Ives.

Larry loved Thanksgiving!  It was his holiday to shine.  He loved to cook and spent weeks choosing recipes.  He loved to feed people, giving them much to choose from.  Two turkeys, one for the table, one for leftovers to share.  Many vegetable dishes, several stuffings.  Mashed potatoes, gravy.  Home made cranberry sauce.  Everything, everything was made from scratch.  My job was multiple pies and a pretty table.  Oh, and a Thanksgiving ritual of the gratitude tree that we covered with leaves on which we wrote our thanks for all that was good in our life.

I practiced acts of gratitude today.  I sent a book to a friend who helped me find the Caregiver Grant and pointed me to Santa Fe.  I arranged flowers and delivered them to my host for tomorrow.  I gave a floating Christmas tree to my neighbors who feed me once a week, and made some Coconut Sugar Body Scrub to thank my hula hoop teacher who has given me the chance to be playful through these dark months.

It’s finally late enough I can go to bed and this day will be over.  And then tomorrow.  Neither the good NOR the bad last forever.  It’s all temporary, just like our lives on earth.  I will get through it.  I may be alone tonight but at least I know there are a lot of people are out there who love me and who I love.  And I won’t spend the holidays alone. That’s luckier than a lot of people.    That’s a lot to be grateful for.

Last week I returned from my Road Scholar journey to Santa Fe called “Finding Your Bliss in the Land of Enchantment.” It was a women’s retreat full of self-exploration activities.  It took courage to travel alone, but Road Scholar trips are groups so I didn’t have to be alone if I didn’t want to.

The trip was an amazing experience.  I had been awarded one of their Caregiver Grants, which gave me both the ability and the initiative to do something for myself, which I was sorely lacking after the years of caring for my husband and the months of grieving.

As I drove to the airport in Tampa in the dark of night, I felt a great relief leaving everything behind. I was going to a place with no memories, no family, no grief attached to it.

Yes, I brought my grief and certainly cried at times. But it was reassuring to know that I could also have a good time. “Both/And.”  I could revel in noticing that I only had to worry about me, take care of me! One afternoon while journaling in front of a fire in the hotel lounge, I watched a couple negotiating what they’d do next.  It was kind of nice to know I could just go off and do whatever I wanted, and I did!  (I did crash when I got home and felt pure anger at not being able to share retirement with Larry.)

I came back with a new sense of possibility about my future alone, a sense of renewed confidence in my own ability to make things happen.

The trip itself was a perfect choice. I was glad to have been on an all women trip as it created an atmosphere where vulnerability and intimacy was easy.  Plus I was never the odd single among couples.

Our guide, Vannetta Perry, was amazing – creating a “safe” environment for all of us. As a professional facilitator, I have often cringed when encountering unskilled leadership. She was exceptional – making everything easy. Her knowledge of the area culture, geology, and history was a great part of our learning experience.

I’d never been to Santa Fe and found the art, cultural diversity, architecture, and natural beauty to be stunning. The breadth of experiences that were part of the trip – cooking, art, Zen meditation, yoga, hot springs, women healers, history – were themselves diverse and enriching. The hotel was great, the meals were great.  And I found enough time on my own to take advantage of a few of the amazing museums.

I even wondered what it would be like to move to Santa Fe, or any place where I had no history, creating an entirely new life.  I’m not ready for that, yet, but it was nice to have as a thought to consider.

I felt courageous for having chosen to travel alone, courageous for taking an extra day on my own, courageous for having rented a car to go out of town into the foothills and find Sanctuario de Chimayo, an ancient healing spot.

All in all, I returned with a sense of my own “agency” – ability to make things happen.  Someone asked me if it helped with the grief, and what I answered was that it helped me separate the grief from the pain.  I’ll always feel the loss but I don’t always have to feel in pain – a victim of the loss.  Making things happen and feeling courageous is a great antidote to self-pity.

Last 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.

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.

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.

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.

I 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.