this is our life

“Let them do the things they can”

Excellent piece of advice, that.

It may have come from Teepa Snow, our dementia-whisperer.

For me and perhaps you, if you are a caregiver to a pwd, it’s hard not to do for, decide for, control the experience.

To my curiosity (and a touch of my being annoyed), Burt got ticked off while waiting for a late evening PT session. When his physical therapist arrived, he sat him down and said he didn’t like these late hours. He tried to get me to reschedule, but I said the schedule bothered him, not me.

To my astonishment, Burt worked out earlier hours across his schedule. It took a lot of repeating and writing the new times in his notebook, but he got what he set out to do done.

If I had my druthers…

Today, I had an intensely isolated time to spend with Burt. It was cold and icy, weather conditions that kept his aide home. They also deterred us from venturing out.

The short trip to the lobby – just to get out – had him grumbling over the cold. Preparations for that trip took so long that it had me regretting the attempt. It was done in the spirit of easing his boredom.

All outings are an effort, and the time it takes to get him ready even just with his pills is astounding. Midway, I am not sure he remembers what he’s meant to be doing.

This is infuriating. It is also sad. He is not being difficult. At least most of the time. He allows himself to be diverted by his own rambling trains of thought. Part of me rejoices that he still has this capacity.

Today, I also realized that I wanted for us to have a community to share his life. He seemed to concur since he was asking if we had anyone who would be visiting us.

We are fortunate in that we often have visitors.

Our friends have not forgotten him. Tonight, he has a little entertainment from a PT session. A call from his cousin to me earlier provided us with lots of conversation and allowed him to use his memory to place that side of the family.

We are fortunate that little things like this can enhance his day.

Pre-existing condition

It’s interesting how many spouses of folks with LBD have noted that their pwd was extremely smart.

The other often reported fact is a tendency towards anxiety (before it’s a symptom of the disease) or obsessive behaviors.

From the oral histories, we can see or suspect a pattern.

Some of these psychological ticks and quirks may be contributing factors.

Burt suffered panic attacks all his life. When I first knew him, I dubbed him Chubby Checker for his habit of ✔️ getting re-confirmation.

Burt’s panicking never stopped him or slowed us down.

He organized trips albeit to nearby venues; got us the 2001 World Series; bought a block of a dozen ballets in one season because I enjoyed it.

Burt was a goer. And we went.

I am very lucky he made those great memories for us.

I’m a person too

In the midst of all the losses- Burt is distressed that he has no job, I took his money, everyone in his life feels they can boss him – he will say, “I’m a person too.”

This plea for respect and dignity is in part complaint and in part a request.

It never references his distress at having a brain disease. That is a separate issue for him. For me, the cri de coeur is a reminder to pay attention to his wishes even if I need to filter them in my reality.

While I’m on the subject

When I brought him home from rehab, I wasn’t sure if I had made the right decision for us.

I was extremely concerned that I wouldn’t manage. Burt was still dependent on a wheelchair much of the time. I had limited help (it’s expensive, you know!) to weekdays for 5 hours. Except that first weekend at home when I had 8 hours both days, which was both too much and not enough.

His baseline behaviors and cognition improved or stabilized. He’s returned to being sociable, although most of his conversation is muddled. There are delusions. He has begun to experience benign hallucinations again.

His rehabilitation to walking with a Neuro UStep Walker took time, but it took.

Funny ? Story

The rehab center is also a warehouse for some of its inmates. It provides far from optimum care. I wanted Burt to be capable to move around once at home. To that end, I kept him there two and a half months.

Until recently, he still complained to people that “they didn’t tell you when you went in that you couldn’t leave til you graduated from PT.” (My locution.)

While there, he was moved from the covid floor to a general residency where he shared a room with one other patient. The staff on that floor tended to ignore patients, however, and have loud conversations with each other.

Burt tried to engage, but they were consistent in not answering him. I tried to intervene first directly with the CNA. The direct approach ended with an enraged aide saying, “If you think I am abusing your husband, tell the administrators,” as she pointed to the cameras.

I did not take the complaint higher than to the charge nurse, who said the aide was generally touchy.

The result? We were reassigned to a floor where the other residents were very unstable. The first night, there was constant screaming. Burt’s two roommates barely spoke but were clearly hostile.

I requested another transfer.

The floor on which we landed was allegedly one from which patients were sent home. Most of the inmates here, however, were permanent residents. I was generally the only visitor. It was sad and probably contributed to my decision to bring him home.

As I said, it wasn’t the time.

Rehab

Burt landed in a nursing center/rehab after a hospitalization for hip repair.

I was there when he fell and like on other occasions when I was there but couldn’t say exactly what happened….

I had contracted covid and was on paxlovid and trying to stay away from him. I slept in the living room, but the next day, it was clear he wasn’t well. He weaved, almost falling into the bathtub. I needed to get him to his doctor but could not go with.

On the corner, he was animated. “There’s a cab. Let’s get it.” I think he darted from my right arm to my left side where he kind of crumbled.

The ambulance wouldn’t take me, and he bravely went with the lovely EMTs alone. He underwent surgery with my monitoring from a distance.

Nothing seems to happen during the day in a hospital. I was on the phone with an anestheologist at 4am.

They got it. No prohibited drugs were used. By the time I could visit, Burt was being dismissed. I made the choice of a rehab facility, and within hours, we transferred.

The rehabilitation slash nursing center was a mixed experience. PT and OT were excellent, especially the PT. The speech pathologist saved Burt’s life; she told him he was on the verge of being malnourished; he started eating everything.

The CNAs were stretched to the point of breaking with some in the throes of compassion fatigue and a bunch compassionate but overworked. One or two worked brilliantly with Burt.

He seemed slower and more confused and had hallucinations that someone was beating him up when he escaped on the subway without his shoes. The hallucinations were confirmed by one of his roommates, who told me my husband wasn’t making it up. Some big guy hit him, David told me. These accusations were taken seriously by the social work staff, but investigating was obviously a dead end.

He seemed content to stay there after a while. I considered if it would make sense to send him to a home. Burt liked the activities once he began participating, but he wasn’t doing as well overall as he had at home.

Also, I missed him.

A social worker I talked to earlier in our journey said I would know when it was time for placement.

It wasn’t time. And this certainly would not have been the place.

Early signs, or what did I miss?

Listlessness, which was unlike the active guy I knew, was a warning. One day, out of the blue, he forgot how to work the remote.

He had been making and planning our TV selections for a long time. He took pleasure in following the guide on the set to decide what we’d watch. This in itself, despite his enthusiasm, might have been a sign. Or maybe not. He liked to plan for a good time.

Resilient as he is, I found him on the phone with a tech asking him to help him work the TV remote. I would love to thank the very sweet man who walked him through this crisis.

For years, there were small things that, in retrospect, I see as warnings. He came home complaining of double vision. We chased this symptom for a year before Dr. Mitchell suggested it was a muscle problem.

And it disappeared. Along the same time line, probably 14 years ago, Burt got disoriented coming out of Central Park. He had to ask which way was east as he got to 5th Avenue. Familiar territory became a puzzle on that day.

Was his falling on the steps at Lincoln Center an indication? A year before his diagnosis, he fell again, this time on the sidewalk shooing away two small dogs. That was his account. He also seemed to find nothing silly or peculiar in his action. He never questioned the wisdom of chasing off little dogs.

Did long-term use of benadryl (“to take the edge off” his anxiety and help him sleep per our GP at the time) contribute?

Was life-long anxiety and being prone to panic attacks make him susceptible?

Early signs

I was inspired by Cynthia Malone’s journal Slammered to look back a bit.

I am calling our endeavors a literature of grief.
I couldn’t put Cindy’s moving account down until I finished reading.*

Grieving is a normal response to loss and so we grieve even before the final separation.

Caregiver Teleconnections offered excellent guidance for anticipatory grief in a recent seminar.

It is not only grief we are exploring in our blogs. We are looking for insight.

Sometimes, I feel I am also searching for forgiveness as I think Cindy Malone mentions in her account. [*For instance, I managed to ignore Burt while I was engrossed in Slammered.]

All right. So, what are these insights I seek.

One is when? How long has this been going on? What signs did I miss?

The pandemic provided focus and time together. It also made going for a diagnosis harder. Officially, Burt’s first neurologist regretted to inform me that it was DLB in October 2020. (I always reverse Dementia with Lewy Bodies to LBD.)

He had been listless for some time before that. From March, when I was home with him, he was confused. Before we could even get to an appointment, Burt was questioning who I was or wondering where I had gone. The latter while I stood by his side in the lobby or next to him as he called a trusted (and very patient) friend to ask if she had seen me.

He suffered benign hallucinations. My friend T asks “why are they always little people?”

Diagnosis was a necessity. For me.

Since he often was puzzled as to who I was, we had endless flirtatious encounters in which he recounted his life story.

I ask, “Why is that so exhausting?”

Nonstop talking is a thing with LBD. He mostly sounded lucid and happy to get better acquainted.

It took a while, but his excellent Nurse Practitioner convinced him to take Aricept. Burt, ever the contrarian, resisted. I said ok if it won’t cure the disease, so fine if he doesn’t want it….

Was I ever wrong! The “brain pill” made a huge difference. He was pleased because he felt sharper. The hallucinations decreased, although they had a less straightforward path. [I will talk about them anon in another post.] The losing me/where’s Tamara stopped.

So what did I miss? What were earlier signs I could have caught? More on that soon, too.

Getting out

The other Sunday, we prepared for an outing to pick up Saturday’s mail.

Preparation included a trip to the bathroom, which involves pulling pants off and on again.

Because Burt is always cold, a jacket is a requirement, as is his hat.

Because Burt is always cold, the outside temperature made a real outing to the outdoors a non-starter.

On some of these visits to the mailbox, we would hang out in the lobby for a bit to enjoy seeing neighbors. It was a taste of the passing parade we could both enjoy.

This time out, Burt didn’t feel like sticking around. Prep time ⏲️ 45 minutes. Lobby time 🕰 10. Ah well!