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.
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.
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.
In caregiving circles, there are lots of shortcuts by which we communicate.
This is not a glossary, just some abbreviations that come to mind:
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.
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.
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.
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.
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.
It’s natural for caregivers to be vigilant about changes and signs.
It’s in the nature of our person with dementia, particularly a partner with Lewy Body, to give us cause for worry.
So when we fret, it has to be over reasonable concerns. And in measured tones.
My tendency to panic has been noted, even by Burt, who has told me to “worry about it when it happens.”
While that is not sound advice and doesn’t cut it as proper preparedness, it does go to the heart of it. I frequently try to soothe him out of an agitated state. Calm is advisable. Beats a galloping panic any time.
A quieter tone has also been the recommendation and darn if I am not working on that.
There is also a goal to find a level of acceptance.
Caregiving involves its own version of the twelve-step prayer. We seek to accept what we can not change.
I am working on that, too. My therapist pointed out that one of my little “mantras” around this life of ours is a stab at embracing acceptance.
I have taken to finishing each complaint with “It is what it is.”
It’s comforting, and it’s true.
this is our life