She could no longer sneak out
With him to see the world through
His fresh eyes; one blue, one with
A small cloud of the nevus, brown;
Eyes, opened wide with the surprise
Of knowing she loved him, of how
Much she loved him, surprise and
Delight. His delight, recognized so
Suddenly, and so often, delighted
Her; it was a shared delight in their
Shared love. They could no longer
Sneak out to enjoy their mutual
Love, but it was theirs, is theirs still
She could always remember that.
Acting my age
In the little over three months since Burt’s passing, I have begun to feel old. Well, to express it more accurately, I have begun feeling my age.
My first, initial, reaction was that the strain of care, worrying about Burt’s physical and emotional state, lifted. That came also with a lift of my shoulders a few days after he died.
The last month or two, every muscle has tightened and my joints all ache. It might be that I am now, in the midst of grief, experiencing the strain of mourning.
My theory is that, actually, this is how old I am. While Burt lived, I needed to stay fresh and mobile for the sake of his care. My years are simply catching up to me now that he’s gone.
Time will tell.
A conversation
These are the times that try our souls.
In light of the advent of big trouble in our nation’s social and political landscape, I found myself asking Burt for advice. I started by saying I was glad he was out of this and safe. If he were here I would stand silent to avoid any risk to him. “You were not a take-to-the-streets kind of guy,” and yes, I said it aloud.
“But, honestly, this is too much.” I asked Burt if I should stay silent, stop walking with those who are resisting. I said [again, yes, aloud] “Isn’t it just plain wrong?”
I think I know he would err on the side of safe-and-quiet. I know that I can not heed that advice. I also know he would be proud to support me in protesting because it is just plain wrong.
Finding out
It had not occurred to me that anyone faced with caregiving alongside a person diagnosed with dementia would not seek… help, to learn all possible. I know you would not be following along here if you were that incurious.
To my utter surprise, I met a disinterested spouse recently. I gather she had gone to an intro meeting, but apparently stopped at Previgen didn’t help?
Of course, it doesn’t. I don’t mean to be judgmental but this lack of basics hit me.
It’s bad enough and hard enough to approach the role of caregiver armed with the knowns and the not-knowns.
If I am serious about being non-judgmental, I will let this go, and be grateful for her that she made it to the end of her journey.
Let me advise you, if you are starting life with your loved one with a dementia diagnosis, to find out all you can. Seek assistance. Be informed.
Supporting
Healing after losing the one you love is not really about moving on. It’s about honoring and it’s about remembering.
It’s also about finding joy. A word I am flinging around these days as if it were a flag to the future.
It is important. Significantly, it also helps to continue to support others going through this journey with Lewy (and other dementias.)
I know that as time passes and I am no longer involved in that day to day of care, my advice will be dulled. My support will not.
I have acquired a new and different perspective. It’s the perspective of full-on mourning.
I still maintain that there is nothing ambiguous about your grief as you watch your loved one lose his faculties. But, the loss of Burt, entirely, is a different kind and degree.
So I can mourn and celebrate who he was, what he meant to me, both in the before and the after of Lewy. I can mourn and celebrate what he means to me, now, after he’s gone.
I can honor him by supporting others who are still on this sad, difficult journey.
Some days
My grief regimen has been to keep really busy. There are some days that the activities don’t take me out in the whirlwind.
I was feeling guilty those days, and then I thought, Why?
It’s ok to stay home listening to an audio book or podcasts, writing or drawing. It’s ok to just be. At home. With memories or new ideas.
I welcome activity, always have. I enjoy warm days and sitting in the sunshine. I value a walk. It’s fun meeting friends and talking.
I also like my peace, my time to slow down. Some days are going to be like that.
Don’t give up
As I was looking for a reference in some posts past, I found this amazing quote from Burt:
“Don’t give up on loving me,” my very sleepy sweetheart said, holding my hand.
As he drifted off to sleep, Burt called me over [why does everything have to be shared as a secret (sigh)?].
Despite my exasperation over the urge to whisper, I now wish I could hear him whispering one of his secrets to me.
I have fond memories of some of his whispers. While he was in the rehab in 2023, he would phone me to discuss an escape route.
Those were always whispered calls, usually made from a cellphone borrowed from one of the CNAs. His plans included his sneaking out to meet me by the busstop. Those calls always charmed me.
Today, I want to reassure Burt that no, I will never give up on loving him.
Reinvention
There’s a lot of re-inventing the wheel for us when we become caregivers.
It makes sense that we have to learn how to deal with the many difficulties of dementia when it strikes.
We have to learn to take on the responsibility for another person. We have to learn how to take care of ourselves.
Dementia attacks us, caregiver and the afflicted darling of our soul, in a decidely personal way.
We re-invent how to deal with it because of how personal that attack is. We face dementia as if it never happened before because it never happened to us before.
The first thing you need to do after you confirm the diagnosis is to find support. The groups at Caring Kind and alz.org will help. Your neurologist’s office will give you access to the social worker on staff. Take advantage of all the programs for yourself. Burt was not inclined to join a group, but there are those for your pwd also.
Persons with Lewy Body can turn to either Lewy Body Dementia Association or the Lewy Body Resource Center for help. I was a participant in the online spouses group, which was invaluable.
The support will help you in navigating the intricacies of the disease. You’ll ask how and why and others who are navigating through the disease will advise you.
Asking for help is so hard. Not asking will prove harder. You’ll ask questions others probably asked along the way. The answers you’ll get will help you learn.
Joy
In my post Advice, I said that I found joy during our journey with Burt’s dementia. It sounds Pollyanna-ish, so let me expound.
Caring for someone you love is a gift of grace.
The gift is reciprocal, so when Burt was aware enough to thank me, that thanks was my gift.
When he wasn’t aware, I had the echo of his appreciation; and I had the privilege and pleasure that doing for your beloved gives you.
Being needed is empowering. As is being of use. Double that when you are supporting someone you love.
The responsibility of care, no question, is stressful.
It also has many rewards. For me, Burt’s strength and love were my reward. He was often kind, and funny.
His hearty laughter and interest in others gave me pleasure. Joy, to stick to the headline.
Advice
From the perspective of after
My message for you, preparing for life with and then after, is that you find the joy.
There was plenty of joy in caring for Burt.
It was sometimes a discovery of who he was under the patina of our marriage; sometimes it was enjoying his jokes, and more importantly how much he enjoyed them, laughing heartily at his crack-ups.
Keep the joy, now, and in writing or in your art, if you practice one.
Document these years, the hard ones, for the record, for your record. Keep a journal.
Always write down all of the surprisingly wise and witty things your spouse says.
It’s the context of the comments that will illuminate these for you.
They come from the, for want of a clearer word, soul. The soul that comes to the fore as dementia steals so much else.
Eventually, you will find joy in the remembering. I remember Burt as he was, as he became these last five years. I remember Burt as he was, before the illness that stole so much of him.
All my memories of him bring me joy. It’s mixed with sadness, and sorrow, but there is joy.
I have kept the joy.
this is our life 