Honoring those we love who have died is not a matter of constant sorrow. I was in a speakeasy Friday night, having fun watching the young, and, yes, being honored by them. [See “You are icons.” Prohibitions is back, baby.]
Intentionality, my awkward word for mindfulness, makes it essential to laugh while grieving. This is not my cop-out guilt over having a good time.
Why are we so obsessed with the end, with being there when our loved one passes? I say “we,” but I am asking “Why am I reliving the end?” Why am I upset that I was not on the scene when Burt died?
I say “we” because I think it’s a universal distress. I wasn’t there at the moment he passed. I really do believe that “we all die alone.” I believe it so tightly that I recall writing a poem about it but can’t find it anywhere. Clearly, this is a subliminal thought I carry.
There is a secondary belief that our beloved waits til we are out of the room. Dying is a private act and Burt died on his own terms. I came back just minutes after he had gone. Ten minutes? Twenty?, more?, I ask myself.
His passing was both peaceful and tumultuous.
I remember the last four days when he sought to find an exit, something, when he reached silently with his arms and his elegant fingers outstretched. I remember it as Burt seeking an exit, pethaps that is a memory of hindsight. I think it is accurate.
We all die alone
It is our story, our drama
With which we close
The scene. It will
Always be profound,
Our death, a solo bow
To our life and to our loves
These are my thoughts on the six months anniversary of his death.
It seems that I am covering the same ground in my posts lately. A few from the last couple of days, in commemoration of six months since Burt’s passing, repeat many stories I have told you.
Some of those are running on a loop, looking for answers. I know there are no answers and that I am not looking for closure.
Grief is not a disease, or an illness from which I seek to heal.
Mourning is a tribute to those we have lost. I will grieve as long as I grieve. It’s ok.
When Burt died, our aide and I checked for a pulse. I took the mirror, thanks to my slight acquaitance with Shakespeare to see if he was breathing. Then, I called his GCP at WCM Center on Aging. I wanted EMTs from a familiar place rather than 911 to tend to the final pronouncement.
It was 11:29am, Tuesday, Feb 25, 2025.
They came, and brought in the city resources who surround a death. We had waves of uniforms in the apartment and our halls.
When the first shift of police were ready to leave as 5pm approached, the police officers gave me the Medical Examiner’s number. I called my friend S who offered to call and ‘yell, in a nice way’ at the M.E.
If anyone could be nice, I knew it would be S, one of those sweet people we are lucky to have in our lives. She called me back just as the young cop got his call to release Burt’s body. I called Kritl Funeral Home. Their men arrived around 7:30 that evening.
I was sorry to let him go, even as I was relieved to deliver him to his final destination, as it were. As sorry as I was also relieved that his journey was over.
Burt died at home. I’m glad I was able to take care of him at home for most of his struggle with LBD.
Burt died at home, but I was not there at his moment of passing. Burt passed sometime between the moment I left home to walk to the gym and the ten minutes later that his aide, our wonderful aide texted me to come back.
I believe, but I don’t accept, that he waited for me to go so he could go. I had been hovering; I knew he was actively dying. I believe I knew.
Burt had been silently reaching, hands outstretched. This was day 4 of this seeking. I think I needed to leave him to find his way. On this day, he did.
Monday was marked as the six months anniversary of his death, February 25th.
On Monday morning at 11:29 it was six months since Burt found his path out of the journey, out of his struggle. I am happy for him.
Forgive me; it was a relief and I miss him.
We like to think that we’re logical creatures but our minds belie this hope. Logic is buried in a web of emotions.
Burt, it seemed, wasn’t aware that I went with him to the park on our weekend outings. I noticed this when I recapped the Sunday. We went to the pickleball court, I said. Burt asked me, Where were you? At the pickleball court, I said with you. “Why didn’t you come and say hello,” Burt retorted.
It’s sad and explains why he was often restless when we sat by the water, or near the courts.
He was looking for his wife. She wasn’t by his side, holding his hand, talking to him. He didn’t know where she’d gone. I feel his loneliness as I write this.
His not knowing where I was… I have internalized the guilt of that abandonment.
I remember too how cute he was, like a lost little boy, when he wondered why I wasn’t with him. I recall that my heart ached for him in that moment.
I also acknowledge that it was funny, not the trick of the mind that said, you’re on your own to Burt, but the way he asked. Sad and funny.
I know that all I could do is be there with him. I couldn’t do more than accompany him on his journey. I was the sidekick, he was the hero. It was his story to tell, yet I am doing the telling.
I have been chronicling our journey all along. I was there. I know that. From the beginning, he was looking for me. Early on, we were standing in the lobby together when he asked our neighbors if they’d seen Tamara.
It was sad and funny.
In my telling, I was there and he was never alone.
At the recommendation of a friend, I started reading [aka, listening to] Geraldine Brooks’ Memorial Days. [I am rewarded for my new audio gal habit by listening to the author herself.]
All those asides are beside the point.
Brooks’ says early on that she did not grieve fully for her husband because society has devalued grieving.
That is my paraphrase. We no longer wear widow’s weeds, or black for a year, or any of those outward signs of mourning.
It does not mean we don’t mourn properly or deeply.
There is no such thing. The loss of your spouse does not allow you to forego mourning. Grief is a peculiar experience and tailored to us each individually.
Another friend has gifted me her thoughtful screed on the subject, Griefcraft.
In mourning, we often ignore the messages our bodies give.
What resonates with me in this short manual is its suggestions on how to interpret those messages and let them guide us.
It has encouraged me to let my body and mind incorporate my grief.
It’s another lesson in mindfulness I have had to learn.
I took the evenings off this past week to dwell more deeply with my grief. Not going out after 4 or so helped me focus.
To contact Mel about Griefcraft, email directly to melgutierrez13@gmail.com or ask me for a copy.
When that diagnosis of dementia comes, it’s natural to wonder how the future will look. Dementia is unpredictable, LBD perhaps a tad more so then Alzheimers, but all dementias are unpredictable.
It’s hard to never be sure what’s in store for us. The uncertainty can be very disorienting for the caregiver.
I also imagine that in early stages, if your p.w.d. is aware, s/he is also wondering what’s next.
This journey is hard; anxiety will not serve you well. There is a lot of planning required, of course, but the day to day care calls for staying in the moment. I know that’s easier said then done.
Mindfulness, to whatever extent you can, will be a helpful practice for you.
It will ease the journey for you, and ultimately for your loved one as well. Caregiving for a person with dementia is challenging enough.
Anticipating what to expect is just going to cause you extra upset.
You can’t control, or know, what’s next. Living in the now will be so much better for you overall. As my mother might have said, “no need to buy trouble.”
Focus on the present. Leave room for the joy that I guarantee you’ll find in your journey.
The cost of taking care of a loved one with dementia is high. The American healthcare system is unlikely to be much help.
Long term care insurance might provide the bandaid to expenses. I don’t know the cost to benefits analysis of buying this insurance; I didn’t have it.
When your person gets ill, you will need aides to help with care. I have said that I considered having companion care for Burt – from the get-go – existential. You have to take care not only with your person, but of yourself.
Home health care is a major cost for you when your person has dementia.
In our case, had Burt lived, his care would have been covered by Medicaid. We were going to get 24 hour aides, and hospice was also coming to help with his care.
I was advised to see an elder care attorney and set up a financial plan as early in the journey as is possible. I advise you to do so as well.
Your state is likely to have a group of eldercare lawyers; NYS’s bar association has a list, for ex.
My resources page offers links to associations that will help guide you early in your journey. Please ask about elder lawyers when you consult.
I am adding a new resource I just heard about, Hilarity for Charity which also offers stipends to caregivers, and information.
See if there is a social worker in your neurologist’s office. Find support groups. Talk to people (offline) you meet in the groups.
Reach out for advice everywhere all the time.
this is our life