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.

How Grief is Impacting My Brain

These thistle were in Larry's funeral arrangement from the family
Thistle from one of the flower arrangements at Larry’s funeral*

It’s four weeks today since Larry died.  I hate writing that because it feels like time is a river rushing me away from him.  STOP!   Bring him back! Is it possible he’s truly gone?  He was here, smiling, chuckling, warm and cozy. The incomprehensibility of the loss hurts –  even more now than at first.  It hurts physically.  It hurts mentally.  So much so that I looked to make some sense of it and Googled how grief is impacting my brain.

I have trouble making decisions, even little ones.  I have trouble remembering things.  My brain feels like a hairball – all tangled and messy.  I am exhausted, but not sleepy. I wake up not knowing what day it is.

My normal filters of what I say and how I react are warped.  I feel overwhelmed by how much there is to do, and how little there is to do. I don’t know what to do next.  Though I’m lonely I need to be alone more than I’d expect. Being with people takes so much energy – talking, understanding, looking interested, answering questions.  I’m in a gray fog:  grief brain, not depression.

What I read about how my brain is being impacted by grief made sense.  That death is incomprehensible to us.  We struggle to process it.  We use up reserves.  We use up the glucose our brain needs to function, just like our muscles.  It makes no sense to us intellectually so we process it physically.  Our heads hurt.  Our bodies hurt.  Our energy is depleted.  A concussion of emotion. Just like concussions that don’t necessarily show on an MRI, the body, the physical brain, still needs time to heal to function properly.  In fact, one neurologist, in her book Before and After Loss: A Neurologist’s Perspective on Loss, Grief and Our Brain  , is calling for a definition of “emotional traumatic brain injury.”

Research shows that  grief frequently leads to changes in the endocrine, immune, autonomic, nervous, and cardiovascular systems; all of these are fundamentally influenced by brain function and neurotransmitters.  Rates of heart attacks and car accidents are elevated for people who are grieving.

Another article reported “that several regions of the brain play a role in emotion, including areas within the limbic system and pre-frontal cortex. These involve emotional regulation, memory, multi-tasking, organization and learning. When you’re grieving, a flood of neurochemicals and hormones dance around in your head. ‘There can be a disruption in hormones that results in specific symptoms, such as disturbed sleep, loss of appetite, fatigue and anxiety,’ says Dr. Jannel Phillips,”  a neuropsychologist at Henry Ford Health System.

It’s helpful to know all that.  It’s reassuring, in a way, to know my brain isn’t going to function well because it’s busy grieving.  I should lower my expectations.

I should drive really carefully, or not at all.   I should postpone decisions where possible.  Everyone keeps asking me whether I’m going to stay living where I am.  Who knows?  Don’t ask me.  Am I going to move west to be near two of my children?  I don’t know – don’t ask me.

I tried to buy a car to replace our wheelchair van this past weekend.  I didn’t want to buy a car without Larry.  A car for one.  My brother and his wife were trying so hard to help me but I couldn’t tell one car from another – couldn’t remember the details of each.  Felt overwhelmed and exhausted.  The pressure to make a decision when nothing made sense felt increasingly heavy.  What do I do?  Suddenly, yesterday, I realized I could keep driving the wheelchair van until I’m ready.  Maybe the decision will get easier as my brain heals.

I am grieving not only the death of my husband, the loss of my soul mate, but also the end of my caregiving, the years of having to be strong every minute of every day.  It is blindingly exhausting, confusing, draining, painful.  No wonder the grief is impacting my brain.  I need time, lots of time, to heal.  To let my brain heal. It’s exhausting to think about.

  • The thistle connotes endurance and fortitude, as well as bravery, courage, and loyalty.  It is said you should wear a thistle whenever the stage of your life seems overwhelming.

 

 

 

Why Funeral and Mourning Rituals Matter

I have buried my husband.  We celebrated formally, as he requested.  We euologized him, for the incredible loving man he was: the husband, the father, the friend.  As mourners, we accompanied him to the York cemetery and a lone bagpiper played as the sun shone down on us.   As mourners, we broke bread together.  As mourners we drank together.  As mourners we remembered him, and laughed and cried.   Funeral and mourning rituals matter to me in a way I never understood before.

Funeral wreaths on our door signify that this house is in mourning
Black wreaths made by our dear friend Joan signify that this house is in mourning.

Now, as a widow in mourning, I have returned home alone.  After being with family constantly since he died eighteen days ago, I have come home alone to our house.  I have eaten my first meal alone.  I have slept in our bed alone.   There are black wreaths on our front doors, and in some ways I wish I could wear black all the time.  But what would it mean today?

Victorian grief cultures of mourning were structured and intense with black symbolic of spiritual darkness.  Now black is just a stylish color.

Widows wore their black “widow’s weeds” for life in some parts of Europe.  I remember living in the Italian neighborhood of Silver Lake while I went to White Plains High School.  I would see the grandmothers walking with their black skirts, black blouses, and black scarves covering their heads.  I knew they were widows.

I remember reading Victorian novels where the widow would remove herself from public or social activities, and would graduate from heavy black to gray then lavender clothing as her loss receded and she moved into half mourning.  People knew.

I took the dog for a walk at sunset yesterday, purposely avoiding the park where people gather.  But one of the neighbors that I know only slightly pulled his car over and said hello.   He asked “what’s new?”  I just shrugged.  If I had said anything, I would have started to cry.  If we had a culture of mourning and I were wearing black he wouldn’t have stopped.  He wouldn’t have asked.  He would have known.

In the past there were mourning rituals which acknowledged that death impacted family members differently according to their relationships.  Mourning customs for a widow were from four years to at least a year and a day, parents or children of the deceased were encouraged to spend six months, and grandparents and siblings were to spend three months in morning. Other family members should spend thirty days in mourning.

The hairdresser doing my hair several days before the funeral told me she knew what I was going through because her grandmother had just died.  I nodded and said appropriate things but I wanted to yell “that’s not the same at all!!!”

Our culture today encourages us to “get on with life.”  “Go back to work.”  “Keep busy.”  We, the mourners, are not expected to acknowledge our loss  in a public way once the funeral is over.  In fact, if we do, it can make some people uncomfortable.  We don’t even allow ourselves to appreciate the significance of the loss, perhaps because it’s so incomprehensible.  But also because we don’t have the ongoing ritual of mourning.

I’m not wearing black today, but my heart, my body, my soul – they are in spiritual darkness.   The black wreaths on my door are my public acknowledgement that funeral and mourning rituals matter.