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.”

It’s hard to imagine

My smart and capable husband is living in a world outside of my reality. Actually, outside of any reality.

He has many wives, one of which he says is not nice to him.

Guilty as charged. I direct him too much. Praise him too little. Worry that something will go awry. All of this singly and cumulatively annoys him.

He feels undermined. He senses that if I have to tell him what to do so often, it’s because I don’t appreciate him.

I do.

And since I do, it behooves me to show him.

I am planning (and tested an implementation) to say, “You did nothing wrong” before giving him guidance. The phrasing mimics his frequently asked,  “What did I do wrong.” In fact, it kind of cuts the question off at the pass.

Projections

The other morning, Burt told me that I was losing my mind. I was saddened by his matter of fact tone as much as by the message.

He had some additional wisdom when he informed me that going to the gym was killing me.

Delusional trains chug through our days and evenings.

In the early days, Burt’s version of Capgras was exhausting to me.

Each new “wife” he met involved an elaborate flirtation.

It also  required that he unravel his life story.

These days, that is shortened by his inability to recall the details.

Burt is still an expert flirt, and he courts the new Tamaras he meets with great charm.

It is still nonetheless a very trying and tiring process.

Abbrev

In caregiving circles, there are lots of shortcuts by which we communicate.

This is not a glossary, just some abbreviations that come to mind:

  • DH (dear husband) & LO (loved one)
  • Pwd is your person with dementia
  • AC stands in for adult children, who often don’t stand up when needed
  • LBD [Lewy Body Dementia] also DLB [Dementia with Lewy bodies]
  • PD [Parkinson’s Dementia]; FTD [FrontoTemperal]; AD [Alzheimer’s]

We never seem to shorten (seems right as the work isn’t shortened) caregiver or caregiving.

There are lots of symptoms that also maintain their long form.

Reduplicative paranesia is a mouthful explaining a complex but common delusion.

There’s the autonomic nervous system that acts involuntarily and can wreak havoc on our LO’s lives. The plaques behind the disease, alpha syneuclin Lewy bodies, is also a long wording.

Hallucinations are a long story in our household, as are delusions. We use no shorthand for either of these.

We (or at least I) just hope they remain benign.

The agitation that sometimes comes with them can be hard to calm. That’s unduly hard on my pwd LO and on his caregiver.

Design a site like this with WordPress.com
Get started