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.





Today is Your Funeral

Photo of Larry just 6 months ago
Larry out to dinner, October 5, 2018

It’s a surreal feeling – today is your funeral, Larry. We’re all here to say goodbye.

It’s been gray and cold here in York, Maine, raining this morning – and matching my mood.   The sun is supposed to shine for your graveside service.  It would be nice if you could arrange that, please.

I’ve been wandering between tasks and tears.  Although it’s a rather gross simile, grief feels like nausea to me.  It’s constantly there. I try to breathe carefully and push it away, then without warning it takes over and I sob.  There’s a moment or two of relief, then the same horrid feeling returns.

It was so hard to leave our house yesterday morning to fly up here.  You were everywhere I looked and I just felt you wouldn’t be there when I came back, that I was leaving you behind in my life.  I know you’ll always be in my heart but I wish with all my heart you were still in my life.

People told me I would feel some level of relief when you died, to be done with the caregiving.  I feel NO relief.  Just grief.

Today is your funeral. We will cry today – my waterproof mascara probably won’t last through the flood.  We will laugh today.  We will celebrate you.

You’d love the laughter. Just know that the tears are the salty evidence of our love.

So Hard to Say Goodbye

Original painting of softball glove -
Oil painting of Larry’s old softball glove

Larry died at 9:02 last night, April 2, 2019.   He was finally ready, but it was so hard to let him go, so hard to say goodbye.

His pain is gone, but the pain of loss is in every cell of my body.

Yesterday, he was with us and responding at 3 pm, surprising us all by saying goodbye to the CNA.  He nodded his head when I asked if he loved Cody, again when I  asked if he loved me, then nodding again when I asked if he thought I was beautiful.  Hey, why not go for it?

My daughter and her husband sent beautiful messages of love and admiration which I read aloud to him.  He was able to nod when I asked if he had heard them.  My son called and told Larry he loved him on speaker phone.   Cody read him Bible verses.  I read from a book he used to read to me at night – a list of 10,000 things to love in the world, like morning dew, and ball games,  and fireflies.

At five o’clock things started to change.  Instead of days, we knew we had hours.  We cancelled with dear friends who were coming to cook us dinner.

His son Cody and I sat at his side, holding his hands, crying and making jokes. We continually were in awe that Cody, who lives a busy life on Cape Cod, was with us for this moment, for this final transition.

This is my third death bedside watch, Cody’s first.  And the most intimate and irreverent.  He would have loved it.  I hope he did love it.

By 7, after canceling friends who were coming to cook us dinner, we were guilty to admit to each other we were hungry.  I didn’t want to leave him for more than a minute so I ran to the kitchen, grabbed a few beers, and some cheese, and fruit, and chips and guacamole.  We had a “deathbed picnic,” toasting him lying on the bed and passed the guac back and forth over him.  He would have loved it!

By 8 we thought he’d left us but after a long silence – his head relaxed against the pillow and his breathing stopped.  We started to cry with our foreheads against his.  All we heard was our tears.

Then…  he drew in a loud breath, scaring the heck out of both of us and started breathing regularly again.  Really, Larry?  Just like when he’d hide around a corner and jump out at me.

He did that repeatedly until finally Cody said, “I wonder if maybe they just don’t have his room ready so they keep sending him back.”  We got a good laugh out of that.

Cody sang a song to him called “Nobody Knows.”  The first line is ‘nobody knows how to say goodbye.’  Oh, &^^%%!

We felt all the love coming from all over the country, like those airport flight tracking maps with all the red lines of love joining in Osprey Florida.  And yet it was perfect that it was just the three of us in the room, no healthcare workers, no strangers.

Finally, at 9:02 he was quiet.

I didn’t know how hard it would be to say goodbye.  We had told him we loved him so many times over these last days.  We’d told him the wishes of love that so many others had sent.  What more was there to say?

October 5, 2018
October 5, 2018

Larry, you showed us how to live.  You showed us how to laugh. You showed us how to live and laugh while dying.  You were always you.  As Sam said  “you were just a good person all the way through.”  You were an incredible partner, an incredible parent, “which will forever be a gold standard for me,” said Krista.

You fed us great food, you made us happy.

You loved well.  You were loved.  You will always be in our hearts.

That’s why it’s just so damn hard to say goodbye.


What Should I Do With the Coffee?

Original Painting of a Palm with its fronds blown away
I feel like this palm tree. Buffeted by the winds. Still standing strong.

The strangest things blow me away.

I opened the refrigerator and there are leftovers of food he took a few bites of.  Today it will be five days since he’s eaten anything.

I went to make coffee for Cody and me and there was cold coffee there from yesterday.  I looked at it for probably two minutes.  Normally I would have poured it in the carafe in the refrigerator to save for Larry’s iced coffee.  I couldn’t pour it down the drain.  That seemed like giving up.  I couldn’t put it in the refrigerator.  That seemed like relentless hope.  So I left it there and walked away.

The laundry can blow me away.  I did a wash and folded his shirts and shorts and wanted to cry.  It’s not that I haven’t cried.

I finally slept til 6 am this morning after many nights of giving up sleep at 4 or 3 or 1:30 AM.  I rolled over to put my hand on his heart and hold him.  I didn’t realize I was crying but the tears rolled down my cheeks.  I took a deep breath and tried to hold us both with quiet loving energy.

The hospice nurse came yesterday at our request.  He gently examined Larry.  He seemed sad.  He confirmed what Cody and I had been talking about.  The signs of the end are there.  Larry’s has only had drops of water for the last few days.  He is waking only for short periods.  The nurse’s guess was within 5 days.  He said if things got too hard for us to manage by ourselves they would send a full-time nurse.  He suggested we stop all meds except for comfort meds.

As I suspected, this is what hospice does well.  The last days.  The active dying.  Not the slow dying leading up to this.

Yesterday was April 1st.  In the morning I wrote in my journal that maybe Larry would wake up and say “April Fools, just kidding.” I didn’t mention it to Cody. Last night Cody turned to me and said, “maybe he’ll just open his eyes and say ‘April Fools.'”  Larry would like that we separately we thought that and got a laugh out of sharing it – a way too big laugh.

When he is awake, he does respond a tiny bit with small raises of his thumb or minute shakes of his head.  He’s tried to say things to us but it’s so damn frustrating because we feel helpless that we can’t understand and we haven’t yet guessed right.  We feel so helpless to help him communicate.

We know by thumb raises whether or not he wants pain meds – mostly not, but we do pre-treat him with morphine before we clean him up.  Yes, unbelievably, he is still going.  We finally gave him Imodium with the hopes of binding him up so we don’t have to put him through the pain of continual cleanings.  Who would think of Imodium as a comfort med?

On a side note, one of the caregivers on the Multiple System Atrophy Facebook discussion group said in response to my post about Larry’s extreme reaction to the enema that she had found that hospices were way too aggressive about treating bowel issues.  We’ve found Mountain Sage Smudge Sticks a better air freshener than Febreze.

Our three kids are talking to each other.  Mostly about how to best take care of me.  My friends are talking to each other, and to my kids.  Mostly about how to support me.  One friend was going to pick up Mexican food for Cody and me last night.  She texted the menu and asked us to choose.  We were helping the CNA clean Larry so I didn’t respond.  Shortly thereafter she texted back not to worry – that my daughter Krista, in San Franscisco, had chosen our dinners and she would deliver them at 6:00.  Krista chose well.  The food was great.

I’ve been an independent, take charge woman my whole life.  It is so strange to have this back and forth between friends and family all going on behind my back.  So strange and so wonderful.

They provide a safety net of love.  In a different way, they blow me away.