this is our life

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.”

Doubts

Burt’s asking me who I am is creating a fault line in my self- confidence.

I mean, I am still pretty sure who I am. Just not always sure who he thinks I am.

When it was clear, for instance, that his pushy wife was becoming a pain, I was able to own up. I said yes, that’s me, and I am sorry. I will try to do better.

I think this was fair, respectful, and honest.

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.

Love

Ours is a love story, so we have our
Forever after, although sometimes,
It resides with sorrow, not always a
Happily, like in the fairy tales where
All's well because it ends well. Aren't 
All endings sad? Our forever love is
In this moment. Ours is a love story.

Romance

There is still a deep romantic connection between my love and I. This despite the chaste status of our relations these days.

I feel the pull at my heart, and I have often heard his version of our story as well.

He has wanted to “run away,” he says, but “there’s some chemistry between us.”

Chemistry is a strange and oft quoted but powerful element in love stories. It fills in for all the mysteries of deep passion.

I often say that without love, this journey would not be possible.

I think anyone living our life will attest to that. So, let me reiterate that I am so grateful.

So very, very slow

Every move, every change of venue, let’s say from the bedroom to the big brown chair, is a project.

Burt notices my lack of patience for these life-altering transitions. “You’re not being nice,” he might say or more cuttingly “boy everybody here is so rotten.”

Developing a “wait and let it develop” attitude might be a good idea. Actually, not might but is!

I need to find the slow-down mode in our interactions.

Rushing him changes nothing. Except his mood and willingness to take those big moves with me.

A peaceful afternoon

Burt was a little antsy on our outing, an unfortunate pattern that’s emerging. Nice afternoon nonetheless.

Self Care

Overrated! Just kidding, but I spent the better part of my morning reading back emails of Lapham’s Quarterly.

I was waiting for a delayed dental appointment, which launched an hour later than scheduled.

Lapham’s is very informative, and I caught snippets from “news” of Babe Ruth and an explanation of ether and electricity from Nikola Tesla. The highlight of my reading was an account of being stranded in the Antarctic darkness.

The dental appointment itself was of the uneventful variety. A necessary part of my life but blessedly boring.