As Burt’s dementia proceeded, I noticed aspects of his character I had not noticed or paid attention to while he was well.
These were not new; it was what he’d always had to offer. I just hadn’t noticed or paid attention to them before.
His illness put me more in tune with him. Honestly, I was kind of studying him for clues to what was going on with him and how to react.
I knew that Burt wasn’t macho, for instance, but I hadn’t realized how much I liked that about him.
He had always had a sentimental streak. I hadn’t valued it when he had been healthy. I tend to be matter of fact and this sweetness was strange to me.
Burt cared about me and that’s what came off as mushy. It was sincere and heartfelt; it was a lovely loving trait.
That sentimental side was not reserved just for me. He showed concern about all the people he liked.
He wanted to take care of others. I guess you would say he was protective. I realized when he got sick how much he had taken care of me. And how much I missed that.
There was also some evidence that sweet was not a word easily associated with my guy.
He was sentimental but maybe a tad brusque. Despite his difficult behaviors, in dementia, actually he was sweet.
Let me get mushy at this point. I loved Burt with every fiber of my being. That love sustained me as things got tough and Lewy Body took its toll.
As time passed, I saw that he was curious, always wanting to know exactly how everything worked. When he’d been well, I found the questioning a bit annoying.
He always had good instincts both about people and situations. When he became ill, and was losing his faculties, I could still rely on some of his intuitions to guide me.
I appreciatedhim more as we traveled our journey. I think it was because I took more time to understand what he was all about. I focused on him in a way I would never have focused on well Burt.
I miss Burt intensely and I am also grateful for our journey. It was in the years we spent with dementia that I learned so much: about Burt, about myself, about love.
Here’s the story of the picture [L] with the Blues Brothers vibe; I’ve shared this at length with A. who was curious about this photo in my pictorial. It’s a memory from the 2nd year that Burt and I were together.
We were invited to party for Judith E’s birthday–who was married to Jim M, a guy I worked with when I taught at the East Harlem Block Schools. We were expected to dress in costume. Instead, we took our own clothes and donned dark glasses. A. asked “Is that cheating? 😂”
The Gates reappeared this past winter, courtesy of augmented reality, and as a tribute to the original.
When the artists Jean-Claude and Christo first hung them 20 years ago, we made a point of walking the Park.
The Gates were an event we did not want to miss. As it was a time-limited installation, so we were constrained to 16 days in February 2005.
We had a lot of fun, even though we were puzzled for a meaning.
Coney Island has so much to offer the day tripper; over the years we spent a few days each summer on the boardwalk.
There were arcades where we played a variety of games. Burt was particularly fond of the Bean Bag Toss.
It seemed like we got tickets by the yard so we could play to our hearts’ content.
On the occasion of this photo, we headed from Brooklyn to Queens to watch a Mets game.
Burt and I always were goers before his dementia stopped us in our tracks.
Lately, my lament has been that we should have done more during his decline. Gone to dinner, taken more walks.
In part, this is a wish, that if we did more, we could’ve made more memories.
I’ve mentioned his expressed desire to attend the ballet. I also mentioned that I had wanted to take him and knew it could not be.
I think that desire had to do with how good it felt for him to share the experience. We got a lot of joy from the dance we saw.
We saw a lot of the ballet. When each performance ended, Burt would make his plan to head to the box office to buy tickets for another series of ballets.
Ballet, theater and baseball were our regular entertainments. We went to concerts and to Coney Island. These are the memories we made from before. There are many.
In truth, I know that Burt and I did as much as we could after he became ill. My wish for more also has to do with how much I miss him. He couldn’t have done much more. And what we did do, now stands out as happy moments.
We went to a French cafe for latte and madeleines after a trip for flu shots. That was with his first aide. We all sat outside.
The second year of his illness, he delighted in taking his aide to lunch at the Italian Village. He always went for walks with an aide; it pleased me to see them in deep conversation as they came home over the river ramp.
While he was in rehab after a fall, either he and an aide, or he and I would go to the activities room afternoons for movies or live entertainment. He stayed in rehab for a long time. I needed him to be mobile when he came home and he was diligent about his physical therapy. Until I hired an aide for a short shift, I visited all day with him. Once home, he had to use a walker but we could still go out.
For his 84th birthday, I threw him a surprise party. That’s always a fingers-crossed eventuality, but he loved it. So much so, that he wanted to take me out the next day. He walked a long couple of avenues for our date.
His party went so well that Burt also insisted I throw myself a surprise birthday party. I did and he enjoyed seeing friends again.
Those parties were highlights for us. His 85th was harder; he was not as social as he’d been.
Of course, I don’t regret having people over to fěte him.
It was just that the final decline had begun that October. Our last outing to get ice cream was the Sunday after that 85th birthday party on November 10th. We ran into one of our friends and Burt had a chat with her. Nice.
I regret that the next weekend, when he couldn’t get out of bed to go out with me, I responded with anger as if this was a willful resolve.
It became clear, even to me, that he couldn’t isn’t he wouldn’t.
It was sad but Burt and I didn’t go on our weekend outings after this; sadder still, he was now bedbound.
The outings on Saturdays and Sundays, to the river or the park, were my attempt to keep up our quality of life.
Some of our happiest moments from before were sitting together on the East River Esplanade with an eye on the water. Now, I was not sure that Burt knew I was there with him in the park. He was confused, and one day when I recapped the day on a Sunday evening, I said “We went to the pickleball court,” and he asked me why I didn’t say hello to him. More sadness, but it was good being outside and fresh air is always a good thing.
A Thanksgiving dinner at our community center 2 years before is another happy memory. There was a lot of hubbub and many strangers, but the staff made him feel special. He also ate the meal at a time when he wasn’t eating much.
We spent a few more afternoons at caregiver appreciations at LHNH with mixed success.
LHNH at Thanksgiving 2023
I count visits to Burt’s doctors as good outings as well. Burt really enjoyed seeing all his care team. His GCP, his orthopedist, his neurologist are all nearby at WCM or HSS. I hired a service to help with wheeling him there. He loved the guys who drove his wheelchair, too.
Getting him ready and out the door was a challenge. Burt also did not like sitting in waiting rooms but he would usually chat with the fellow who pushed him to the appointment.
Sometimes, he’d make a fuss of outrage at being kept waiting. Once in the exam room, he was convivial. He was happy meeting new nurses or techs. He loved his doctors.
On the way home, we sometimes stopped for ice cream. Making it an occasion.
Making it an occasion was a way of elevating our every day.
He elevated our every day, by turning a doctor’s appointment into an occasion, taking pleasure in greeting the folks he met, having fun, asking the medical folks questions about his condition.
Burt’s capacity to enjoy, to take joy, was a gift. To me.
When we were younger, Burt’s hand clasped firmly over mine was a source of pleasant comfort.
My hands are small; when we were holding hands, Burt’s hand enveloped mine.
Holding hands is a way that those in love signal belonging.
Over these last years we spent together, I truly admired his hands.
Burt had long, narrow tapering fingers. The hands of an artist, a musician, of a man with beautiful hands. His hands were elegant.
Burt was also very strong; he had tensile strength. He could grab and hold on with a surprising grip. It was not the firmness of his handshake, but the delicacy of his hands that impressed me.
Sitting at dinner, we exchange remembrances of those we’ve lost.
We find some comfort as we speak.
I remember my mom. As we keep talking, I miss my cousin and her amazing sense of humor. “She was,” I say, “the funniest person I ever knew.” I speak of Burt, my friend talks of her mother. We both are happy to have the reminder and the moments
There is a kind of solace in sharing memories of grief.
It feels like I should have control over my feelings, my memories, my past and my future.
The jumble sale that is a life can be so much messier than any accounting of it suggests.
Well, in 1990, I did this; actually, I met Burt, so it was a big year. In 1992, we got married.
We have a resume. We created a curriculae vitae for two.
So linear, so straightforward, so factual. We all know that it is not ever that simple.
It took us a bunch of years to sort out the challenges of merging our disparate personalities. The effect was that we melded, enjoying our couple-ness, doing most activities together.
In 2020, Burt was diagnosed with Lewy Body Dementia. That threw a huge wrench in our resume. It split my heart. It changed the rest of our life together. His death was another date on our timeline.
It was unpredictible. All of it. Even the good stuff. The good stuff for which I remain ever so grateful. And the loss which I mourn.
I bought the 45″ TV for Burt. He had gotten us the smaller one a long while back. I am happy with it. The bigger screen seemed to be suited to his watching from his recliner. I don’t watch from his recliner.
In fact, I had gotten both the TV and the big brown chair for him to enjoy when we moved out of our studio into the top floor.
True that the fact that the littler TV not being a smart TV is a disadvantage these days. At the time we brought it into our home we had requested it be stupid.
Who wants a TV that might prove to know more than they do?
In 1990, I did not have a TV at all. TVs in those days were uniformly stupid, so when Burt got one for our home, it had no special powers.
Our TV journey was a long and wind swept road. Never cable, we declared. Instead, Burt purchased whole seasons on tape. I had a suspicion that DVDs were the up and coming technology. We got a player and Burt returned from Best Buy with new releases each week.
Burt was our entertainment tsar. I just stream on the little TV with its XUMO box. My choices are well worn flicks featuring well known, or familiar to me, players.
I saw Fried Green Tomatoes the other evening. That’s an again. My film yesterday was actually new to me, but I always like Edie Falco. [It turns out that I’ll Be Right There was released in 2023.] TV makes me restless, it turns out.
We had gone from no cable to TW to FIOS.
I switched us to Spectrum with side excursions packaging phone and telly. My cable bills were insane. Now, I have one too many screens. If you count the extra cellphone and 2 tablets, it counts as more.
My friend J is advocating for my keeping the big, smart TV over not. I just don’t know.
Why I will always treasure the healthcare pros who came into our lives when Burt got ill.
There is a diminishment that comes with dementia.
The dementia sufferer and the family who loves him see their quality of life plummet.
It happens over time, but it also is evident early on, sometimes on day one.
The healthcarers- from his aides, and therapists, my social workers to his medical teams- they kept us living our best lives.
Day in and day out, Burt spent a chunk of his day with his aide. The last many months, it was R who provided him both care and companionship. I am eternally grateful to her and will always carry her in my heart.
It wasn’t always easy caring for Burt. I think even he recognized that.
Her love for him was evident to us both.
Earlier in his LBD career, Burt had a slew of home attendants. He initially needed a companion so I could venture out. Many of these many were wonderful, too.
It was his R who saw us through to the end of the journey. She gets special mention.
this is our life 