Voices of Experience: Caregiver Recovery versus Bereavement

Nancy with her husband Larry 

It is not the load that breaks you down. It’s the way you carry it.  ~ Lena Horne, singer

By Nancy Hardaway

In the introduction to her website The Artful Caregiver, blogger Nancy Hardaway acknowledges that ~ after years of caring for her widowed mother, then her widowed sister and finally her husband ~ it was only in retrospect that she identified herself as a caregiver. Through her blog, she decided to share her caregiving journey "in the hopes that someone can be helped by what they read - that some benefit can come from all that we experience." Two months ago, Nancy's beloved husband Larry succumbed to the rare neurodegenerative disease that finally claimed his life. Now in the aftermath of devastating loss, Nancy continues sharing her hard-won "wisdom, woes, triumphs and tips," offering her insights as she transitions from life as a caregiver into that of a bereaved spouse.

I’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.

© 2019 by Nancy Hardaway

About the Author: Nancy Hardaway is skilled at reinvention, having been a teacher, owner of a real estate sales company, a land developer, banker, non-profit CEO and a leadership coach and trainer, all before she became a full time caregiver. Since losing her husband to a rare neurodegenerative disease called Multiple System Atrophy, she has had to draw on her experience and her artwork to figure out who and what she is now, including a deeper understanding of what she is experiencing in this, her most difficult, transition. Find Nancy on her website, The Artful Caregiver or via email at n.s.hardaway@gmail.com

Related:

• In Grief: After Caregiving Ends, Who Am I?
• Eighteen Caregiver Skills I Can Use on Me! by Nancy Hardaway
• Navigating the Transformation from Loved One to Caregiver by Donna Thompson and Zachary White
• The Unexpected Journey of Caring: The Transformation from Loved One to Caregiver by Donna Thompson and Zachary White
• More Than Half of Spouse Caregivers Have No Family Support by Jim Parker
• I absolutely failed at being the perfect caregiver ... by Elizabeth Gilbert
• Can Caregiving Lead to PTSD? by Michelle Daly
• A Toddler In The World of Grief by Harry Proudfoot
• The Labyrinth of Grief by Mary Friedel-Hunt
• Reflections for a Grieving Heart by Anne Gorman
• It's Only Oatmeal by Pennie Hunt

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© by Marty Tousley, RN, MS, FT, BC-TMH