Caregiver Recovery versus Bereavement

Dark sunset painting of the weight of caregiver recoveryI’ve been musing on the process that is caregiver recovery versus bereavement.  Somehow it seemed important to me to separate the two even though there is much overlap.

Take meals for example.  My whole pattern has been disrupted.  Larry’s death means taking out just one set of silverware, one placemat.  I don’t like to eat at the table anymore so where do I eat?  Should I bother to use the dishwasher?

The caregiver recovery part is remembering that I can prepare and eat foods of any texture.  I internalized choosing foods that he could eat so I have a hard time remembering I can eat anything, like rice, for example.  Just like I couldn’t remember it was ok to leave the house at first because I was so used to not wanting to leave him alone.

The biggest change for me is getting used to calm.    No crises, no drama, no emergencies, no adrenalin. I know I don’t have to be on high alert constantly, but my body is anyway.  My shoulders are constantly knotted, hunched, prepared for the next blow.  My belly is still tight, my breathing shallow.  I wake in a sweat, wondering what’s happened I need to deal with.  I carry a nagging dark shadow of worry that I’m not taking care of things.  I have the rushing symptoms of panic attacks at the oddest times.  Some maybe not so odd – like in a doctor’s waiting room for a recent physical.  PTCD – Post Traumatic Caregiver Disorder!

My relationship to time has changed.  Nothing’s urgent.  No problem needs solving ASAP.  If nothing’s urgent, why bother?  Measurements of time have changed, too.  The days and hours used to tick off to the metronome of CNA and nurse visits, breathing treatments and  pill schedules.  Now they ooze out with no structure.

There’s my relationship to the future.  When you live with a progressive degenerative disease, you have to stay in the present.  The present is the best you’ve got!  You can’t plan for the future because the future is completely unknown, in length and in possibilities, filled with things to dread.  Now I’d like to think the present isn’t the best I’ve got.  But my dread of the future is another dark shadow of habit.  And I’ve forgotten how to plan.

I am no longer needed.  No one needs me!  I have no purpose!  My days stretch out with emptiness.  Loneliness, too – but that’s part of the grieving.  Filling the emptiness is part of caregiver recovery versus bereavement. After all, I was abruptly fired from my job.  Sure there were parts of the job I didn’t like, but I really liked my boss – or my co-worker, depending.  In my case, I gave up my consulting practice two years ago for this caregiver job.  Now I have neither job.

The sounds of the house are different, particularly at night.  Yes, I have had to get used to sleeping alone.  But sleeping with quiet is part of caregiver recovery versus bereavement.  There’s no oxygen machine, rhythmically pumping, sort of like a heartbeat.  There’s no CPAP machine, with it’s own rhythm.  The sounds of the day are different too.  I don’t watch much TV, and especially this season, Larry always had sports on, because it was something he could do that he enjoyed doing.  Especially his beloved Red Sox games.  I can’t listen to noises of the game (but that’s because of grief).

Finally, it’s making decisions without the benchmark of the disease.  What house, what climate will work for Larry?  What can Larry do at this stage?  Where can Larry go with his lack of balance, his walker, his wheelchair?   What car is best for this stage of the disease?  I am now parameter-less.  Yes I have unknown freedom. Yes, I have more choice.  But I have no experience of living this way.  I’ve put my own wants and needs aside for so long I’ve forgotten how to have them, never mind how to act on them.

So now that I’ve made this list of what I’m experiencing that’s part of caregiver recovery versus bereavement, what do I do with it?  How do I actually go about recovering?

PS – What runs underneath everything is the need to recover from the residual physical, mental and emotional exhaustion.   Sleepless nights, hospital visits, choking episodes healthcare system failures.  But worst of all, day after day after day, watching your loved one suffer the progress of the disease – the indignities, the ugliness, the messiness, the incapacity.  Death by 1000 little cuts, as they say, for both of us.






Dreams, Weights, and Measures of Grief

Original pastel of Larry walking away on a beachThis morning, I woke early from a dream thinking Larry’s warm back was pressing against mine.  I’ve dreamed that we’ve been trying to get into places together and had the wrong keys, and that we were going out together and my clothes didn’t fit.  These dreams are heavy weights as I wake up and measure my grief.

Clearly my sleeping brain is trying to make sense of his death, which my awake brain can’t really do.  This morning’s dream was particularly weighty as it was such a visceral reminder of all I’ve lost, damn it!

Some mornings I don’t want to get up and face the day.   Other mornings, I have to get up and get away as fast as possible from the bed and my thoughts.  This morning was one of the latter.  I went to the beach after walking the dog.

I’ve graduated from the MSA Caregivers discussion group online to the MSA Widow/er group.   Lucky me.  It’s hard to read about grief stretching out seemingly endlessly in front of me.  Six weeks for me. A measure of time that I guess is meaningless.   It’s been 1 year, 2 years, 4 years, even 6 years for others still dealing with grief.  I asked what people have done that helped.  I got good answers:

    • establish a new routine
    • journal
    • exercise
    • meditate
    • grief counseling or groups
    • get a dog
    • prepare for holidays, anniversaries, etc.

Ok, I’m doing all that and it hasn’t made me feel better.  Takes time, you say?  I’m just tired of having life be hard.  I’ve had years of hard.  I don’t want to do hard anymore.  Can’t you just wave a magic wand and make the next 6-12 months go by?

But as I write that, I don’t really want it to happen.  There’s something about the grief that for now keeps me connected with Larry in an intimate way.  Something about it that honors him, honors our love for each other.  Something I have to do.  Not that I want to get stuck in it.  NO! NO!  NO!

I try to keep reminding myself of what in me will serve me well.  Measures and indicators of future success surviving grief.

I have learned how to live with polarities – we figured out how to live well and enjoy life while Larry was dying.  So, too, will I be able to figure out how to feel both grief and joy.

I’ve reinvented myself before, through many career directions changes, as a single mom after my divorce, as a caregiver relocated to a new state without family nearby.  I have skills to re-reinvent myself now.

I’m generally a happy person and, through Larry, have learned to accept whatever comes and make the best of it.

I have lots of interests that I haven’t had a lot of time for.  I’ve been painting and trying pastels for the first time.  I’ve enjoyed that.  I got new middle distance glasses so I could read my piano music.  They arrived yesterday and I sat down to play.  That didn’t work so well as I was weighed down with thinking of how much Larry enjoyed hearing me play over the years, thinking of him sitting in the room with me just listening.  I played 2 pieces and then couldn’t stop the tears, which turned into an ocean of grief.  But just as I learned how to sleep in our bedroom again, I will learn how to play without him.  Maybe not today, but sometime.  When I’m ready.

I have lots of good memories, and no regrets about the past, just regrets we don’t get to enjoy a future together.  I can’t help but feel lucky for the almost 23 years of marriage we did have, for our love story together.

So my brain will continue to dream as it works through this. I will measure the days, weeks, and months since 9:02 PM April 2, 2019. I will feel the weight of losing him in my life.  These dreams, weights, and measures will not stop me from feeling joy again, moments of it now, hopefully growing more frequent in the future.





A Month of Grief

Today, after a month of grief, I have no words of my own.  Only words of others.

From Healing After Loss by Martha Hickman, a book of daily readings a friend sent me who lost her husband 1 year and 3 months ago:

“‘The problem with death is absence.’ – Roger Rosenblatt

After all our attempts to comfort ourselves and to make sense out of dying, we are left with a huge hole in the fabric of our lives  – ‘I miss you. I miss you. I miss you.”  And then what?…

[there is] perpetual danger of falling into the astonishing abyss of the person’s death…

Perhaps they become our guardian angels, our link with the other side.  But to let them go initially is one of the compromises we are forced to make with life, and our longing for them sometimes makes the prospect of our own death almost right.”

And from a poem my daughter sent me in the last hours of Larry’s life:

from Funeral Blues, by W. H. Auden

He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.