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.

Safe and secure

When are you most happy?

When Burt shows delight, as he chortles, happily laughing at his own jokes, I am happy.

My job 1 is keeping him at home, safe, secure, and comfortable.

If he’s enjoying himself, it makes that job so much easier.

Admittedly, my frustration trying to get his head back on the pillow last night soured his mood. He bounced back, and by bedtime, he was again chatting away. He was comfortable. He was safe. He was secure. He was at home. He was with me.

The sign

It’s been at least two years since I first met this sign on a stretch of East End Avenue. I took it both at face value and as an indicator.

Life, our life, had definitely hit a patch of the rough.

In our case, we had not had or did not heed or were not able to read the warning sign. Then.

It’s clearer now. We see it, or I do as Burt quite happily chortles over jokes he tells himself and his imaginary cohort.

We’re going to proceed with the necessary caution. It’s a «rough road« we’ve hit. The sign I passed yesterday was a confirmation.

Every little thing

Who said «The unexamined life is
Not worth living,« I have taken that
To heart, instilled it with a power so
I examine every thing as it happens
As if by tearing at it, I will find a gem
Of wisdom, learn a life lesson even
If it's from myself alone for myself
Alone. «Lest I forget« is a phrase I 
Stick to as well. I have to examine 
My life in the moment, «lest I forget« 
And if there is pain in the moment, I 
Have to look at that, too. Later it will
Be too late. "Don't turn those coals,"
You say, "Let them burn. They're still
Hot." «Too hot to handle,« I wonder.

Once upon

It’s very exciting to hear that one of my favorites is taking on the role of Mama Rose. I could easily say one of our favorites. It’s a bit sad that we won’t be there to witness her interpretation.

For the 2003 revival, Bernadette Peters made her entrance down the orchestra aisle, stopping by Burt’s seat.

Shortly after that, she made an entrance, again stopping next to Burt, at Daniel’s. Her destination for that Thanksgiving dinner was a private room and therefore grander than our little table. But near.

We have seen a lot of Audra McDonald over the years. From Ragtime to an NYE at Lincoln Center, everything she did was a treat.

That is not to say that we have seen enough. So, as I said, I am sorry to miss her in Gypsy. Her performances were always clear and poignant. I know she’ll give Rose a memorable spin.

We traveled a little

Burt had many anxieties when we first met, had had them for years. He feared train tunnels and getting stuck in them.

He always faced his phobias. He planned trips for us, often by train. In fact, trains became our favorite mode of transportation.

Our trips were special. We went to Mystic and spent a day with the grandchildren. They made a memorable mess at Mystic Pizza.

All the adventures he arranged for us are wonderful memories. The long weekend we spent at Saratoga, however, was magical.

We saw the sights via a tram or trolley. We went to the races.

We swam in a pool across the street from our inn. I have a  surreal, dreamlike recollection of a bizarre and exciting restaurant.

Burt bought me a souvenir. I cherish it. I cherish all our life together.

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