In free fall

This is a horrid disease. I believe all dementias are damnable and heartbreaking.

Lewy, however, seems to offer behavioral twists and emotional wrenches that make it that much more accursed.

So, while all dementias are a burden on sufferer and carer, this is the one we’ve got.

Burt has quirks that predate his illness. He also has charms that still make him lovable. The two often overlap in strange and  unexpected patterns.

I am sure I mentioned his job quest elsewhere. It has morphed into an organized office venture in which his “new girl,” who is also a wife, has a place. I am #1 in  this project.

I worry that in listening to his plans, I acquiesce to lord knows what.

There is a lot of anxiety and fear mixed in with boredom in Burt’s life. [I’ve shared my anxiety over my passive participation in his schemes.]

For instance, he gets antsy when we’re out in the park. Since he demands to go out, this reaction was puzzling me.

It turns out that although we are talking and holding hands, he thinks I left him there. He doesn’t realize it’s me. It’s as if he’s in the midst of an inverse hallucination; he’s not recognizing me, though I am there.

He also worries his driver won’t get him home. And, of course, he doesn’t have control of the wheel chair as he does of his walker.

I often remind myself how hard it is being Burt.

Should’ve

When you came home from a walk and said you were lost on 5th Avenue, I was worried. When you told me you had experienced double vision, I worried again.

I should have asked you how you felt. Your worry was unspoken but deeply felt.

I should have said I’m worried, but you matter.

If this was the beginning [and I suspect it was], it was the missed moment. This was the time I should have shown you love and compassion.

I did, of course. I did, but it was silently shared. This was the moment to begin verbalizing feelings… expressing my support for you.

This was the moment to ask, “What do you need?” “How do you feel?“

It would have helped. Well, no, it wouldn’t have changed anything. The disease still would have had its way, progressed. I would have lost you. You would have lost you.

I know you know I loved you. I think you knew. I think you know I felt your pain and fear. I think you know I empathised with your concerns.

I’m worried. But you matter.

Aggression

“So,” she asked, trying to put it tactfully. “Is Burt ever, how do I say it, does he lash out?”

Oh, yes, that famous Lewy Body aggressivity. 

It’s why an agency felt they had to deny services. Burt is, as I like to say, performatively belligerent. Of course, he is, but he does lash out.

It’s what I expected or at least was warned to expect.

I think the aggression comes with the fears.

It’s hard  to not be afraid when you are experiencing the weird that is inherent to dementia.

In the world according to Lewy, there are strange people in your home. You’re not actually sure you are home or will ever find it. Early your symptoms are just odd enough so you realize there is something very wrong. Later you may have delusions that make life untenable. Paranoia added to the mix makes it all sort of boil over.

Burt’s hallucinations are mostly benign. I think. His delusions can be very frightening.

Burt used to like it when I showed him his picture from our outings. Today, he said, “You’re not supposed to take my pictures in there. People will come after
me.”

The loss of a logical compass to determine if the scary is likely underlines everything in bold red.

The endless fears are fought off by  defensive aggression.

Do as I say…

Out of desperation over difficult mornings, I switched morning meds to early afternoon.

I had reservations about this choice but got the approval of his doctors.

At the time of my decision, Burt was fighting taking his pills in the a.m. and sleeping late. I needed to  get out of the house for my daily respite.

Since I instituted the “early to bed” routine, Burt is also up earlier.

I switched back, and within three days, he already seemed so much clearer.

Perplexing

T-shirts with slogans have sprung up to agitate my Burt.

It seems to have originated with a recently acquired resentment of my gym.

I love my logoed gear! Burt told me a wild story about a woman (they always look just like me) who was wearing the shirt (he ran his fingers over the writing and pictographs).

She knew all about him and then something something. At first he liked her then she worried him.

I said I had asked the police to watch out for us, and they had said they had their eyes on her, and everything was under control.

This t-shirt morphed into other of my favorite wears. We now have a standing instruction to use only plain t-shirts, although I think stripes are still ok.

Don’t you hate it when their delusions interfere with your fashion choices!

The fall

I pride myself in pulling no punches when I share our day to day.

So, how did I really feel when I got the call from the aide.

It’s very scary hearing of a fall.

“If it were a broken bone or if it required a trip to the ER,” my mind raced with the unpleasant repercussions. The prospect that my honey might go to hospital was a bleak one.

The end might lurk there.

Right now, it’s a setback for his strength and stability.

Ice packs, gentle kicks, and a little assisted [two person] movement will likely get him back on track.

A little bonus is his improved attitude towards his excellent physical therapist.

Tumble and fall

Burt is okay after taking a tumble this afternoon. He was with his caregiver, who called me and EMS.

His aide said he kind of went down as she was trying to make the seat of his walker accessible to him.

We got great EMTs whom Burt attacked and abused. They checked him out and waited for his long walk down our seven steps to the elevator. They gave him the a-ok.

I had “portalled” his GCP but also tried reaching her by phone.

She returned my call before the ambulance arrived.

I truly appreciate how responsive she always is.

The doctor helped sort out how to not go to the ER. Her support and advice helped empower my asks of the EMT team.

Burt did the rest. He walked those 7 steps down from the lobby. He also noted that he was feeling stronger as he walked.

Earlier to bed than is usual for my boy tonight!

Today, he’s limited his movement. His PT is keeping him off his leg and doing sitting workouts. They are benefiting in making the tender area more limber.

Burt showed a rare burst of appreciation to his PT, which is so great to see.

Decisions

As this disease progresses, the caregiver is obliged to make decisions for her beloved pwd.

Mine lost most of his executive function with the first blush of his illness. Nonetheless, he could participate in some decisions I made on his behalf.

He refused all medications in the beginning. I felt it was his right. He gradually agreed to try some, and he was very happy when Donepezil made his mind clearer.

He ceded much of the harder questions to me. When he says “she’s the boss,” however, it is only half true. He resists care and help.

In his present decline, resistance isn’t in the least rational.

He doesn’t resist in his own best interests. Not by half.

He has lost all interest in his meds and no longer tracks even the more obvious of his pills. Not so long ago, he used to know what he was taking.

I am grateful that he takes his medicine without resisting. 

On the other hand, the task of adding, stopping, or changing his regimen is onerous. I am obliged to act not just on his behalf but in his best interest.

It’s a daunting responsibility.

Signage

Burt is very confused these days, questioning where he is and where he lives.

My solution had a two-fold purpose. It would provide an activity to overcome some of his boredom. The activity would give us signs we could hang around the apartment. The signs might help him feel more oriented.

All he was required to do was color in the apartment number I had outlined.

Red was the  suggested crayon and a favorite color.

When I asked if he had finished any signs for us to hang on the walls, he said no. “Me and my friends talked it over,”he said. “We don’t do that kind of work.”

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