this is our life

He doesn’t call

Burt always called me during my respite hours. At one time, while he still could, he’d place the calls himself, relying on the numbers from the phone book I had made him. Then he started getting his aide to place the call or to text me to call him.

It was intrusive. I picked up calls at lunch with friends and in the midst of support groups.

Recently, my dear friend noted, “This was the first time Burt didn’t call during lunch.”

And suddenly I missed him. I missed the calls that interrupted.

A month or so ago, I had sent his number direct to v.m. It was an inadvertent choice, and I figured out how to reverse it. If he had phoned, my cell would have vibrated with the sound of a light gallop.

I realized that mostly I no longer heard from him. Another phase. A new plateau. If I called him, he would probably say “okay thanks for calling” minutes in.

I miss him.

Memories

What makes you feel nostalgic?

A YouTube video of snow cascading outside a coffee shop with jazz pleasantly playing prompted «It’s a slow game, but it’s good« from Burt.

Lately, Burt will comment on a “movie” he feels he’s watching even with the TV off, so mention of the «game« didn’t throw me.

For me, that was a reminder, a jog to memories. Burt taught me baseball. That’s a slow game!

Baseball and the afternoons we spent at ballparks taught me to sit and wait. There would be excitement. A double play, a missed pop fly, a triple play… a perfect game.

Yes. Baseball is the perfect game. But you afficionados will join me in saying a perfect game is the pitcher’s triumph. We saw one of those; I believe it was Dave Cone who triumphed that day. After a long rain delay.

[My own delay just now was looking it up. July 1999. Yanks vs Montreal. My research also tells me this was only the 16th perfect game ever pitched.]

It’s New Year’s Eve, so I should wax nostalgic about all The Nutcracker ballets we attended.

And I do. Ditto the several times Burt got us tickets for a play on NYE. How we enjoyed those despite the difficult logistics of getting home on that of all nights.

I mentioned before that we saw Audra McDonald at Lincoln Center in a New Year’s Eve concert.

We were goers, Burt and I, but it was he who initiated all these outings.

I miss that. I wonder if deep in there somewhere, Burt does too.

Call and response

Burt has taken to pontificating all night long. Or, almost all night. Twice when I said «it’s 4 in the morning now, you can try to sleep,« he’s agreeably responded “that’s all right with me.” I always refer to him as “honey” at 4a.m.

He sleeps deep into the morning after that.

Unlike some of you, I am a sound sleeper.

I know about his conversations because I awaken to go to the bathroom every so often. When I do, he’s chatting. Sometimes, he’s yelling «Hello« or giving orders. I have learned to butt out for the most part.

He usually just enjoys talking, but sometimes, he gets agitated by the slow [or stupid] response of his interlocutor.

Getting back to sleep is becoming harder since the yelling grates on my nerves.

And the drumroll of chatter can also be annoying.

This is especially the case at 2a.m. for some reason.

Context is everything or would be if there were one.

It is sad that he’s compelled to talk himself hoarse. It’s sad that his discussions make no sense. It’s sad.

Serious

There is always one more worry. I know you’re shaking your head “just one?”

Despite the comical appearance, these are meant to protect the skin on the heels.

In fact, since he’s been bedbound, I have been put on red alert. The skin is susceptible to breaking down. Bed sores are a real and unpleasant danger.

As I write, I am thinking, I told y’all about this. Sure enough.

Honestly, it is distressing. I hope the prodigious amount of cream I massage and slather on him will ward off this worry.

By the way, a nurse told me that massaging the skin on and around stimulates circulation at the pressure sores. That’s good, Nurse M tells me.

Redundant

My takeaway from the discussion was that the brain protects itself by holding redundancies.

Well, that was one of the points I gleaned from Neil DeGrasse Tyson’s StarTalk with Daniel Levitan (and Chuck Knight) on music as our first language.

Why redundancy? It would be a way for the brain to keep and store information that we need to survive in more than one place. If some mishap takes it away from one place, we can access it from the backup unit. It’s kind of like relying on a generator to power our lights when the grid fails.

Redundancy in brain function may also explain the «long goodbye« of dementia. [This is my unscientific speculation on the science as it was presented.]

There’s another storeroom full of things that might be useful.

Some functions of the brain are preserved in duplicate for the sake of self-preservation. They might kick in as the losses, the difficulty in organizing thoughts or inability to find words, are plaguing our loves with p.w.d.

Usually, the confusion is so great that the information tucked away isn’t much help. It may even add to the muddle. It doesn’t seem to clarify anything for Burt.

At least there is still music to sometimes soothe, entertain, and calm him. Us, actually, I should say. To entertain and calm us.

Amazing

In Down down up, I made the case that there was no denying Burt’s impairments.

He’s no longer tethered to his Wall Street past, except for his frequent talk of money and time.

He doesn’t see the companion of his journey by his side but lives with lots of imagined company.

(Let me clarify, although it seems I am never around, Burt does see my value; I am important in his life. I appreciate that, and I plan to stick around, unseen, but appreciated.)

It’s his imagined world and the breadth of his conversations in it I find so amazing.

When he talks, he can talk for hours. [When those hours are 2, 3, or 4 a.m. they are intrusive and not always well-received. Still, the discussions he has are, as I put it before, amazing.]

Burt is in every sense exercising his creativity. The stories he tells! The places he goes! The advice he dishes out by beautifully formed spoonfuls!

His patience in explaining his vision is matched by impatience at anyone of his minions who is slow or uncooperative.

Burt has created a world. In fact, he creates worlds in each one of his many conversations.

His ability to envision different worlds with each excursion is astonishing.

He’s amazing!

Down down up

When I speak of Burt’s return or of an upswing, I am grading on a curve.

After his recent declines, he has not achieved clarity, coherence, or cognitive functioning. He tells me of imagined trips where he met people with wonderfully unlikely names.

He insists I bring Tamara to him when I say, “I’m your wife, right here holding your hand,” and wonders why she won’t talk to him.

He has made up names for many things he demands I get him. The renaming is inconsistent, so I can not rely on a new vocabulary for guidance.

He does not understand simple instructions, so it’s hard to offer him guidance in simple tasks.

He forgets that he ate.

He remembers that I gave him prune juice when I didn’t.

He sees cars or people in our bedroom, sightings sometimes accompanied by a “watch out.”

He is paranoid. He is anxious.

He is aggressive and friendly in equal measure. He is apologetic and belligerent within seconds.

He no longer can do maths or organize his thoughts.

His gains, when they appear, are small and significant.

He is blessedly unaware of losses or accomplishments.

I am tracking those, attentive to any minor turn, rooting for any achievement.

Practical concerns

As Burt retreated into his bed, his OT raised concerns over pressure sores.

She was not being alarmist, I only wish she was.

The skin is our largest organ, and it is susceptible to wounds and tears.

Burt has developed several areas that need lots of special attention.

We use a number of ointments and creams to attend to his sores. They are mostly small, so they do require extra attention not to be overlooked.

Technically, he should be turned every two hours. He no longer understands the request that he turn and is a solid and resistant mass. I can’t turn him. I can assist his aides in getting him rolled onto his side.

As a practical matter, we got a sling to help with turning; it fits under the chux, covering the bed all the way across; the handles all around allow for picking up and moving the patient. It’s a possible act when the aide and I pull from opposite sides but still hard.

My next purchase will be a clever three-pronged pillow that fits in between the legs and allows a roll to the side. One such device is called “SexySamba” on Amazon.

It looks like it might facilitate the turn.

We hope we’ll be able to safely and easily get him up and out of bed more.

The more he moves, the sooner he’ll feel safe walking. He’s got to rebuild his calf muscles and add strength to his calves. The upper body seems very powerful by contrast.

It all seems to point to more time out of bed and with his Physical Therapist.

A timeline

Burt had a sudden downturn starting in October. Although I have documented Burt’s decline, I am still unsure of the actual events.

His decline has been incremental and gradual. It has also come on suddenly, precipitously and unexpectedly.

In October, things like confusion and hallucinations seemed more noticeable.

Soon thereafter, one of his aides and I shared our observations.

Early in November, I decided to go ahead with his birthday party; my rationale was that a surprise and seeing people would do him good.

The birthday surprise neither pleased nor distressed him. My normally sociable Burt did not engage with his guests. His 84th was, by contrast, a real treat for him.

Of course, there have been other dips, like the one that had me cancel our anniversary party last year. Over the last few months, as he’s declined, we’ve also had some ups.

The Sunday after we celebrated Burt, we took our last outing. He got out of bed just a few times after that. His walk was unsteady, and in some ways, having him bedbound relieved my concern that he would fall.

Yesterday, he got up to sit in his chair. That was an event. In fact, it was so much of an event that he was up chatting until midnight.

Today, he slept til I woke him at nearly 1pm. Tonight, Burt is interspersing conversation with me and another with a song. I don’t think I have ever heard him sing.

We’ll see what tomorrow brings. There will be challenges and joys. I’ll accept the wisdom offered by our weekend aide, who quoted the twelve steps, “One day at a time.”

Xtra xtra read all about it

Today, after resisting when our weekend guy put him in a sitting position, Burt settled into it.

He relaxed and held himself up. This was unusual for him as he generally sinks back.

Not unexpectedly, he started talking. His narrative ran into unfamiliar territory as he started discussing getting up.

We perked up.

His aide positioned the walker in front of him. We listened and encouraged. Burt seemed to be tiring, but no, he was determined.

We helped him to his feet.

He was unsteady enough for me to demur. Our aide applauded the effort and kept Burt up, holding him from behind. I steered the walker.

Burt plopped down onto his big brown chair with relief. I felt his triumph. We had offered him lunch.

Once ensconced, he took the plate I brought and began feeding himself.

As it became clear that he’d had enough, we took the reverse path. Waiting until he was ready to get out of the chair, closely escorting him, guiding the walker.

I left the two men for a bit. Burt was yelling my name.

When I came in, he’d been sitting on the side of the bed for a long while. I thought he was fatigued, but he seemed manic. Again, I was proud of him.

At least for the moment, he was no longer bedbound.