This morning, I was rereading posts from the days and months before Burt died.
It’s pretty clear that I had been aware since November, around his birthday, of how much he had begun to decline. This was unlike the dips we’d gone through before.
There were hopeful posts expecting further help for Burt’s care, starting that March 1st.
Could I not have known?
All the rereading gave me pause, and made me sad.
This is not a brag Caregiving carries with it a grand responsibility. Rather than make us grandiose, it humbles us. One of my caregiver friends is as thrilled by the purple umbrella she gifted herself as a diva is by pearls, champagne and fancy chocolates. No diva, but a queen of caring. My own experience […]
We are humble
We’ve talked about love during caregiving, but I have not been forthright about sex. We don’t talk about that in polite society as my mother would assert. Let’s be honest, LBD destroys intimacy. A visiting carer who came by to see Burt was not circumspect. She suggested I should connect with someone in circumstances like my own. “It’s not cheating,” […]
Love and marriage
Among all the losses when you’re a carer is losing the person who took care of you. I feel that intensely in my loss of Burt.
He arranged for me – from making appointments to planning outings and adventures.
Things are different when I have to fend for myself. I always talk about how grateful I am for the time I had with Burt, what a privilege it was to provide care during the journey. It’s also true that I have regrets. There’s sadness.
These musings are due, at least in part, to my being on my own and preparing for my last days.
For instance, I realize I don’t want to end my days in a hospital bed. I also am so sorry that Burt did. His end days were anything but ideal. Burt lost so much more from the dementia than I did. The toll on him was unique and hard for me to gauge. Burt lost his tether to reality; there were times he understood he was losing his mind; yet he mostly kept his sense of humor. Dementia took his agency, his mental acuity, his agility, but he held on to a lot of his joy.
We did the best we could. Hell, he did the best he could.
What’s a chapter of your life you’d title “The Hard Years” — and what got you through it?
The obvious answer would be the journey I took with Burt once he was diagnosed with Lewy Body.
The journey, as it turns out, had so many positives. It brought out a side of me I hadn’t acknowledged before. The nurturer in me would flourish those five years.
While I couldn’t fix it, and yearned to, I could advocate. And care.
I could do what was best. I could give it my best. Never enough to fix what ailed us, but enough to make our life together the best it could be.
The journey during and through LBD powered our life with sincere, fiery intensity. There was joy in my caring.
There have been other times that I would call hard. The nearly year and a half since Burt’s passing has had hard moments, but I can’t say it’s been a hard year. I am fortunate to have had all the experiences my life has brought. Or is it wrought?
The times I have lived through it seems to me have been good years, on the personal, at any rate.
It’s a Sunday pastime of mine, going through photos, looking for the one or dozen that tickle me the most.
This is one of two videos I have of Burt. Two videos in which I can hear his voice. The cellphone has me made others with the phone’s choice of musical score.
I uploaded this to my Vimeo feed today. Click below to see (and hear):
It’s a treat seeing and hearing him. [The other video:]
Let me turn my morning’s happy indulgence, dear caregiver, into a teachable moment: take photos, sure, keep voice mails (definitely), and take videos. That’s what cell phones are for!
This photo album Vimeo just isn’t as satisfying as the ones on which he speaks.
Witnessing a loved one suffer any long, drawn-out illness is painful.
Of course, it is.
When my mother was diagnosed with pancreatic cancer and given six months to live, it felt like we were embarking on this together. I wasn’t the one who would die, I know, but we faced her last days in solidarity.
Burt and I didn’t experience the journey in partnership; from day one of his illness, we no longer shared the same reality.
We talked, we hugged, we laughed but he didn’t have a grasp on the same big picture anymore. Those details were my responsibility now.
Dementia is that kind of a loss. I missed having a partner. I missed his support and presence. There were moments when it still seemed like he was himself. Just flashes.
I took over the heavy lifting and let myself enjoy what was left of him. There was his sense of humor; he was often thoughtful; he was very social; he was appreciative.
All that gave me a lot. Even those memories were sweet, although I wish he didn’t have to go through that.
Of course, I do.
Burt was my photo model and this is one of my [many, many] favorite shots. There’s a teasing smirk in the smile, yet the fun is there.
He noted when I took pictures of him and was pleased to have the camera turned towards him. I am pleased to have such a treasure trove of memory.
The photo capture symbolized my love and he knew it. When he’d been well, we didn’t use cellphones and I bought throw away cameras to document our outings. He would initiate asking strangers to take our picture.
Today, I scrolled the phone, found videos (just two with his voice as sound track: what a treat) and put together photo albums. I marked a lot of them with the heart, too. I am far from done.
There are more that need finding and signalling out but I was sated for today.
There are so many pictures of Burt, mostly during the journey, but a lot of us at ballgames, on walks having fun. The photos perch on every free surface in both rooms or sit tacked to the wall. Our wedding photos, and an album, are also part of the decor.
The photographic reminders take me back to the us from our happy go lucky first thirty years of our marriage.
Those photos are there, but I relate more closely to the pictures of him from the past 5 years.
Those are memories of the Burt I took care of, the Burt who needed my care. I remember my husband when he was healthy, too, but it’s a vaguer memory. I turn first to those years of Burt’s illness.
I’ve reassured friends that as time passed, I was focusing on the good and not the hard times that come with dementia.
Much of that good was the good we were lucky enough to experience during the journey.
It may be a tribute to how much we loved each other that I appreciated him during those last years. It was my privilege to share the journey with him.
We do all we can to give loving care for our loved one who is broken by this disease.
We are diligent and devoted. It is what we do while we give care. We are grateful for the opportunity to share the last years with someone we love.
We ensure that he has a secure and safe life, and is surrounded by our love and tenderness. We advocate for his health. We are privileged to do whatever we can.
As I see friends I’ve made during our journey come to the end of their journey of care, I feel relief for the end of their struggle just as I did when Burt passed.
When the journey ends, it’s a relief. Their suffering ends. We can stop worrying over our decisions.
The cliché that Burt is in a better place is a truth that accounts for the relief. It’s also a fact that I miss him while my burden is lessened.
Do I have less responsibility? Are my cares lifted? Yes and yes. Do I wish I’d had more time with Burt? Definitely.
Although, I know I would not have wanted to see him get any more lost and confused. He inevitably would have continued on that path.
It’s a relief, always mixed with the sorrow.
This is how it begins, first with the relief lifting off my shoulders; it is nearly a physical sensation.
My grief will always be present, welling up behind my eyes and in my heart. The sorrow, in this past year and a half, as I have found, is going to weave in and out. And so is the relief. Each time I wish he were still here, I realize that it would not be a happy outcome for either of us. He really is better off.
this is our life