this is our life

Hats!

My friend ACJ said you got Burt a lot of hats. Well, his grandpa was a haberdasher. The other was a mason, but I never bought him a brick.

Burt, it turns out, got me a lot of hats, too. From the selection as I rummaged this morning, I chose the peaky cap he’d gotten me in the rain.

There were many others. The blue beret and the grey clochey one seemed less suited to today’s possible showers vibe.

Thanks to the children’s book, Hats for Sale, I always smile over the hat-thing. Burt used to borrow my hats which also made me smile.

Found treasures

If you’ve been following along, you might recall that taking Burt to a park was my favorite project.

Burt had always been- not in the flannel shirt/camping way but in the New York City style- an outdoors guy. He loved to walk. He and I loved sitting watching the river traffic pass.

We had been doing this for years. As his mobility suffered, getting outside was a greater challenge for me. Our weekend aide, L came on board last May to help with that. We called him Burt’s driver. Usually, Burt would walk part of the way, up the big ramp out the back and from there get driven.

I treasured these outings with Burt. Note, the 2 pictures directly above were from before and to my point that Burt was that outdoor guy.

We went out every Saturday and Sunday and then we went out to Sedutto’s for ice cream on the way home; a couple of times, we had ice cream in a park.

I think the fun we had improved our quality of life immensely.

So many reminders

Thank you, Burton

Missing Burt has been a natural if sad pastime; these last couple of months, the memory of him has accompanied me as I once again roam our town.

I tread the paths we walked over the years. Yesterday, I felt like he was definitely with me in familiar and some new places.

Yesterday, memory took me all over town.

I went to the SSA office to take care of some widow business. I walked to 48th from the M31 stop at 57th and 8th Ave. Then down Broadway to an appointment at 25th and 1st.

I got so many reminders of places we had been to on that leg of my day. There were some changes to the scenery but we muddled through.

Carlo’s claim a *long* residency here on Broadway, but *we’re* pretty sure they’re newcomers

Finished with my dentist, [and no, Burt had not been there before], I proceeded to figure out a path to the Soho Playhouse. The village had been a teenage hang of mine, but then, oh Burt and I ate here, and we went to The Minetta Theater, and… my oh my.

I acknowledge I needed more help than my phone’s navigation system to find my way. I asked and strangers were kind.

Memories did not end when To Free a Mockingbird was over and I spilled off the M55 at 44th to walk along 6th Avenue to 57th. I passed the spot by the NY Mets TV station where we used to sit in the grand Rockefeller Center acreage. Radio City Music Hall was kind of a hang for us, too.

As I walked by jewelry row, I turned my finger to admire the engagement ring we had picked out together at this store.

Then there were the Hilton and the Warwick where we ate and regrouped on our way to a show or some outing. And of course that corner of 6th where we so often boarded the M31 to get home.

A long day away from our home, but filled with thoughts of where we had been. Together.

Once upon a time

Recollecting Burt’s time in the rehab center today gave me a little relief although the memory was hard. The fact that I could affirm that I stood for him when he needed my protection felt good.

The nursing home-rehab was not a good place. I would not have placed Burt there over the long haul. I did choose to keep him in the facility longer than Medicare allowed because he needed the PT. I knew I could be his advocate while he was there. I had to be.

Advocacy was a necessity. I was insistent that the doctors here not change his meds; they did at first and I argued against this. It took a little doing but that was my brief, to advocate for him. I had to push to make sure Burt got the physical therapy he needed.

It was sad to see how many of the residents of this place had noone to speak for them. Most had no visitors in all the time Burt was there. I visited every day and usually spent 7 to 9 hours with him. I brought him treats and at times some for his roommates.

There were four men in Burt’s room. We wound up there after three moves. First, we were in a quarantine because Burt had had Covid in hospital.

The move to another floor put Burt in a room with just one roommate. I had some critique for the CNAs and my [honestly] gentle rebukes got us a transfer to a floor where the patients were screaming. It felt and looked like a psycho ward.

This time I did not protest to the charge nurse but went to the patient ombudsmen. It felt like that would be more effective. It was.

We moved to what was our last room at this facility. Most patients were residents but there were some transients, like Burt, on this floor.

We settled in and I made nice to the workers at the nursing station; I ordered pizza for the staff. I invited the charge nurse to lunch.

My bribes weren’t much help in getting Burt the attention he needed or deserved. I hired aides to come help out since it was clear the staff was stretched thin.

When the time came to bring Burt home, I had misgivings. I worried that I couldn’t provide proper care. Burt was able to walk with a walker. He was partially incontinent. He needed continuing PT. We took on extra help to help with his return. I continued in my role as his advocate and protector.

We spent the next two years enjoying as good a life as we possibly could. That’s all anyone can do, the best you can.

Got you covered

On Sunday, I wore the hat Burt bought me on the UWS when we were walking on Broadway; it had started to drizzle, no rain just a dampness. He got me a cap at one of those emporia near 72nd Street. It was expensive by my standards of headgear. It was not a street vendor’s hat.

I really like this cap!

To mourn

I browsed or breezed or picked my way through Lisa Keefauver’s breezy and very useful book on the art and science of mourning.

Grief is a Sneaky Bitch is a title with an element of shock even for those like me who never hesitate to curse.

Incidentally, if I weren’t inclined to language most foul, Burt would have innoculated me. He loved to say fuck, though, to his credit, he seldom said bitch or ever used infamous c word.

Anyway, grief, to the grieving, well to the grieving me, is sacred. We don’t curse at grief.

Why is grief an art? Simply, because we each grieve in our own way and in our own time.

Science? Ms Keefauver reminded me that the body holds grief so aches and pains might come from the body in physical grief.

Talking about Burt keeps my memories of him active. It helps me process my sorrow over losing him. That’s my art. That’s my science.

In the end

I wonder, pretty much in vain, what drove Burt to take to his bed.

It was definitely not an improved quality of life. He did have what he needed, food, drink, change of clothes. Health concerns crop up for the bedbound, such as tending to or preventing bed sores. We took care of those. Regular attention from his OT helped him keep some muscle strength.

It was a limited life, however, in a way more limiting than loss of cognitive and executive function had been. The losses kept piling on for Burt.

I wonder, pretty much in vain, if Burt felt weak or weaker.

Was he scared of falling? Did he feel unsteady? Did he realize we were concerned that he was unsteady? That he might fall?

I wonder, pretty much in vain, if Burt noticed his decline.

Was he scared? Was he readying himself for his passing? Did I get it right that, at the end, those last four days, he was ready?

I wonder, but pretty much with certainty, if at the end Burt chose his exit.

Bedbound

Burt’s choice to stay in his bed wasn’t really a choice. I had noticed a decline in the two months leading up to those last two months. Friends who came to celebrate his 85th birthday said he seemed less engaged. After that birthday party, he went out for ice cream in his wheelchair for the last time. We didn’t have him walk out the door, as his aide and I had done in the past. It was clear that just the few steps from the bedroom to the chair were a big enough challenge.

The next week, after I recovered from my petulance over his “refusal” to go outside, I realized it was not his decision but his necessity. Almost at once, I felt guilty about being angry with him for not going out with me. I asked if he wanted to go out to the park and for ice cream. He enthusiastically did. He clearly could not. I offered to bring home some ice cream, pistachio, his favorite.

Those months were hard and sad. My Burt wasn’t responding to visitors with his usual sociability. He tired quickly after one visit from his dear friend MH. Our podiatrist was clearly shocked by the change in him.

I have accustomed myself to say the first decline, leading up to his being bedbound was just two months. That’s probably accurate. But, as he was in bed from mid November, there were three months to the end. They were the months during which imaginary guests were his companions, and he turned to them in the midst of conversation. It was hard to leave for my daily respite but it would have been harder to stay. I guess I knew where we were headed as I thought of staying as sitting in vigil.

As happens when we lose our dearest, we hold on to some guilt. It’s often of the random I wish I’d been more patient or more loving variety. In my case, it’s that and. He’d been coughing the last few months. Nothing showed up on the Xrays we took. I tried giving him a homeopathic remedy to reduce the worst of it. The cough made my kissing him imprudent. I had always kissed him; he had turned it into a game of tens; ten kisses hello and goodbye or just because were a cherished habit. As we neared the end, there had been no more of that kind of greeting between us.

Do I also feel guilt over my relief at how quickly Burt passed? Over my relief not just for his sake but for mine? That guilty relief is mixed with so much sadness that he’s not in his bed, that he is not here that it can only be described as grief. I yearn for him, not as he was at the end, but whole and well. I mourn him as he had been and as he was as dementia took him. I miss him, and, yes, I am relieved. I think that’s what rest in peace is meant to express. For me as well as for him.

Falling

Some things I remembered this morning

When Burt was in the rehab after a fall in which he broke a hip bone during a bout with Covid, he’d call me with an escape plan. He said we could meet by the front door and sneak out to go home.

He’d wake his roommates yelling out my name during the night. I was well aware how much he loved me and deeply touched by his devotion. It’s his love that I carry in my grief over his loss.

We lived so many lifetimes over the five years of his illness.

A few years prior to that long stint in rehab, he started off in Lewy-land with a deep dive into hallucinations and Capgras. By the time he went to the rehab center on 79th Street, he was no longer hallucinating and he knew who his wife was. A few years later, he would go back to the hallucinations and often wonder where his wife was.

Despite a long stay with lots of PT, I was nervous about bringing him home, unsure if I could provide the care.

Once home, he complained that they didn’t tell you you couldn’t go home until you graduated from physical therapy. He probably didn’t put it quite that way but it is what I had told him.

Over the last 2 years, with him at home, he fell 6 more times. 4 with me, one with his aide, and one while walking with his OT. Three of his falls were more like melts likely from a drop in blood pressure.

Recently, I noticed that he was released from rehab two years to the day prior to his passing. This was jarring. Such a short time, yet so eventful.

He never broke any bones, I am happy to say.

The first time with me was soon after his homecoming. We were feeling emboldened and merrily circling the livingroom with a rollator.

For Burt’s next fall, I think he was betwixt and between over going out.

He rammed the walker into a wall knocking himself off balance. A slew of our neighbors surged to help him up. Our doorman noticed his mischievous grin as he was hauled up.

On one of his melts, I was able to hold onto him on his way down. A neighbor helped hoist him up.

We had so much help from our neighbors during all of Burt’s illness. Fittingly, many of these helpful, supportive folks joined in celebrating Burt on May 3rd.