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
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.
Not to worry
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.
Battling Burt
I need to be honest here. I said, “Stay positive.” I fully intended to do so.
Fell right off that wagon fast.
Burt refused to enjoy being out with me on Saturday. I mean, he was antsy and kept saying that he wanted to go home.
My tactic to keep him engaged was all over the place. I said I liked being outside with him, but I also put the onus on him. Don’t you like being out with me? I said. I thought you did, wheedling a little,
It occurred to me in retrospect that he wasn’t sure who I was, so he thought he’d lost me.
Our excursions on the weekends take us further afield than Burt could manage on his walker. The aide “drives” him in the wheel chair.
The presence of a third person, our aide, seems to annoy him. I think he feels it’s intrusive. He resents having to “ride” rather than be in the driver’s seat on his walker.
After a few more minutes of just sitting, he complained he wanted to go home. This time, I said ok, go. I’m staying. (Ugh.)
I say “ugh” not just because it was a foolish approach but also admittedly because it didn’t have the expected effect. He asked the aide to take him. Well, ultimately, he stayed. I held his hand.
And, of course, ultimately, we went home. There’s where the dinner battle went into full force.
I won’t point any fingers, but food was thrown, and an apple juice spilled halfway across the room.
At this point, I just lost it.
I hectored him as if he were able to agree to not be agitated. As if his impulsivity was something he could control with discipline.
I got away with all this because this morning, Burt is blaming “that horrible girl, don’t you remember her?”
But I know who she is. And I am chastened.
Nod like you mean yes
For the sake of a quieter life with Lewy, I should learn to be more agreeable.
It’s a reflex for me to correct for the sake of accuracy.
Does it really matter?
If he says we should go up there, pointing at the ceiling, for dinner, no long explanation that we live on the top floor is needed.
My counter-proposal that we enjoy our meal in the bedroom is adequate.
Pretty much anything he says can be glossed over. I can stay clear of contradictions and avoid the dreaded “no.”
Honestly, no one likes to hear it, but for Burt, a “no” is an agitation in waiting.
Insert “yes” wherever possible is the formula I will aim for. “Yes, dinner up there is wonderful. You know what, sweetie, we’re here. Let’s enjoy our lunch just as we are.”
He’s been pleading to go out at bedtime. Instead of “no. I don’t want to go out,” I will practice saying “yes. I love going out with you. Let’s do that tomorrow at 2.”
Then write it on the calendar.
My being positive will help keep him positive.
A good day
It’s so much easier to want to keep up the care after a pleasant day.
Burt awoke early but not hours early. He asked me about a half dozen times when I was leaving.
This question is usually followed by the inevitable when are you coming back.
I heard that too but for today the focus was on my departure.
He was in a pleasant mood and had no catastrophic dreams with which to contend.
I left after several assurances over when I would return.
When I spoke with him, he was dramatic but cheerful over his dire circumstances.
I said I would meet him outside which elicited his gratitude.
We had a moment in which Burt performed his anger over my being late.
He seemed to enjoy his perch in the lobby and the neighbors he saw.
We had some dinner before the PT’s scheduled appearance; I had to recuse myself to get him to focus on the physical therapy.
It went well. My further attention to his eating went smoothly.
He was fast asleep well ahead of my goal for an early bedtime.
Not a particularly stirring or eventful day. Thank goodness!
Focus on the upside
It may be harder to keep a focus on love and kindness as your pwd’s world unravels.
Burt is less of who he was in our every daily interaction.
I hear wild stories about his many wives.
He tells me of his safe-but-crazy rides in “his car” with a group of friends by way of encouraging me to take him out on his walker.
This always well after bedtime.
He regales me with reports on his job search.
In the morning, he tells me that I wasn’t there when he needed me last night. There are more tales, some scary and some boasting of derring-do.
I feel like a strict and unpleasant kindergarten teacher exhorting him to stay in bed.
Or refusing him anything.
Yet refuse, I must. It’s one more layer of loss; I am not his wife so much as a disciplinarian; we are reduced to living by my rules.
This is one narrow road and a lot of our relationship is left on the wayside.
In staying focused on the positive I have to remember who he was, who we were.
It’s that other component, the love and kindness, that need my full attention.
this is our life 