My guy
Grief
Your mind on grief is suffering from trauma.
Any caregiver with a loved one captured by dementia knows grief from diagnosis on. In my case, I was grieving for the past 5+ years.
One morning shortly after Burt’s passing, I awoke to a my I have been under strain moment. Some awakening. It comes with a duh.
Healing requires getting the brain and body back to functioning. Lots of this is fundamental, part of how we are hardwired. It’s also likely slow. More duhs.
This video explains it simply and directly. And will require more viewings.
As I enjoyed the fantastic Max Pollak Group tap, I had the memory of Burt tapping along as we watched a dancer on tv. He was seated in his big brown chair. His feet were dancing along.
Burt loved tap dancing.
He would have loved this show. In some ways, he was there enjoying with me.
Busy
Keeping busy helps me work through my grief. It also takes me away from the business of my grieving.
Grief need not be avoided and often the busy-ness of my days skirts the pain of my grieving.
While Burt was ailing busy was intricate to mourning. There was a relentless gradual loss.
Now, busy is good. It keeps me moving forward, of course, while reminding me of happy times past. The past from before the debilitations of dementia.
In truth, activity does not displace my loss. It may distract, but more often with it come a flood of my remembrances of Burt.
I welcome those since as they come up, they are generally of our good old days. And we had many of those.
Like the two-step
QuickQuickSlow: it’s not a dance, my darling. Wish it were.
Looking back, the blur of our journey as we trudged, loped and galloped along is confusing.
Is it surprising that an illness characterized by confusion would cause confusion? Create it for the travelers as they travailed its inconsistencies? The one who is well as much as the afflicted?
Burt’s confusion was a natural by-product of the Lewy Body Dementia from which he suffered. Mine was the fog of care and the overwhelm of events and information.
We all know how this ends, I opined in a support group. It does not end well. Heck, friends, its start isn’t propitious either. There is enough grief to stretch and stay the course.
My mission today was to parse if the end was quick or slow. It was both expected and a complete surprise. So, I guess it’s not a fudge to claim it was both slow and quick.
As it turns out, my retrospective on this excursion takes me back to a mere four months prior to Burt’s passing. In late October, he wasn’t participating as he had and hallucinating more.
For his surprise birthday party, he was more out of it than in. He didn’t take pleasure in seeing people as he used to. Our outing on November 10th was the last one we would manage.
He got up to sit in his big brown chair for his friend M’s visit a few days later. It was an effort and he asked to return to his bed. We talked by his side but it was pretty clear that Burt wasn’t sure who we were. After that, he.was mostly bedbound.
He tried to get up for a trip to get pistachio ice cream, but could not. Even I, reluctant to catch the decline, saw it and offered to bring him some.
I had every hope that, this being Lewy, Burt would ride the roller coaster up and go back to better days.
In mid December, I went to sign a Molst for end of life decisions. His doctor and I agreed to proceed as if he were on palliative care.
Burt seemed comfortable. Bed care has some issues of its own, like pressure sores, that we addressed. I held onto my hope that Burt would get out of bed to go for a walk; it was slimmer but still active.
These were the days when Burt held more conversations with his imaginaries. He would often interrupt me, ever so politely, to see what they had to say.
Then came what I have dubbed the last four days. On Friday, he stopped grabbing and holding our hands. His grip was so strong! before that. His hands were reaching and he wasn’t speaking. Just gesturing in the way of a supplicant. I knew.
Someone had introduced me to the term actively dying. I knew that that was what this was. Burt was actively dying.
The fact that it took him four days to find his exit is both a long and a short time. I am relieved that he found his way. I am sad to have lost him. I no longer travel his journey with him. Burt is no longer by my side as I continue mine.
Crossing 67th. Etc
As the day passes
Some pictures I took of him when we were watching the river:
The Park
My friend greeted me by the lobby door and said go to the park, everything’s in bloom.
Good plan for this aimless Easter Sunday.
My route was to come in at 67th. And there were the memories.
Burt and I frequented The Park. My path today was full of old stories.
My Sunday in the park had the ostensible intention of enjoying the freshly blooming scenery. So:
At 79th and 5th stands a building Burt and I visited once. Years ago, we were curious.
Bubbling up
Two weeks before my planned celebration to honor Burt, I find little reminders in his honor.
I am organizing my living space, with no wish to eliminate any of the reminders.
You might argue that disposing of Burt’s jackets and sneakers can be seen as a way of eliminating reminders.
Throwing out his things is as difficult as I had expected it to be.
I don’t want to forget Burt or dispose of mementos. That should go without saying but I say it out of a little guilt as I remove clothes, and shoes from the closet.
Today, a truck is on way to take donations away.
My walls are happily covered with the photos of him that I took. These are staying where they are, sometimes with an improvement. I routinely make adjustments to keep them neatly in place.
Burt used to love when I would take his picture; he knew it was a tribute of my love.
I often say good morning to one or the other of the images of Burt that line my walls.
My stepdaughter sent me frames for Mother’s Day; (yes, she is always an early gifter). I took two photos of us from-before to put front and center. They represent a happy memory; all my photos do. At times, I repeat their stories as I look them over; I recall the what and where, when and why behind the pictures.
In the course of organizing, I had found papers from the days of our journey, destined for the shredder. These, too, provided memories.
Good morning, Burt.
Back to basics
It would be impossible to survive this journey without love, or kindness, or compassion.
I have held firm in this belief from the beginning. I now know how much love, kindness and compassion can buoy me in grief as well.
The fourth pillar of caregiving is respite.
Proper time for the carer to fuel and refuel is a positive necessity. I insisted on it for myself. Always.
I urge anyone embarking on the journey of care to honor the time for rest and restoration. If not for yourself [as you deserve], then so you will be refreshed in order to give better care to the one you love.
Coincidence
Getting ready for a shredding event, as I cleaned out papers, I found Burt’s discharge from rehab. The date was, apparently 2/25/2023, just two years to the day before his death this year.
A coincidence that I found such a jolting reminder.
I had completely forgotten the exact date when he’d come home. It felt so long ago. So much happened to us in that short time.
It’s one of the incongruities of our journey that I measure the passage of time as both long ago and so very recent. There were so many turns, twists and changes.
this is our life 