In reviewing the very unsatisfactory week we’ve had recently, my mind flashed back unbidden to days my love and I spent in the park.
The memory was of a time long enough ago that there was no suspicion of dementia and illness.
Burt wanted to take me to a spot where he had been in Central Park on his own. It was by the water in the west 60s or 70s. He was right.
There was something idyllic and magical about sitting in the sheds that jutted out over the lake.
That memory took me to a long long list of happy remembrances.
I am grateful to recall all the good times we shared. Sure, we indulged in a variety of extravagances, but I embraced and cherished the small, simple times.
Last night Burt, thinking I was his (need I say deceased) mother said he was getting married to a girl from Carolina. He said his wife didn’t love him; she used to but it’s died out. Well, that did it!
After a while, I fessed up to being his wife and said I was hurt.
He backpedaled as fast as he could and wormed his way back into my heart. (Not that he was ever anywhere else.)
I am not able to handle not being recognized with the grace I would like to muster.
Burt’s Capgras (I have 5 or 7 wives he says. Isn’t that too many to deal with? No, I like it.) is maddening particularly since I am tasked with figuring out the names of all his hallucinations and superfluous wives.
It’s really an evil unpleasant disease that robs our loved ones from us – coming and going.
Interesting that in his appeal for my mercy, he mentioned an occasion in which there had been a fire only he came to realize that he imagined it. He hunted for the word hallucination to explain that episode and linked it to his imagined infidelity.
I am intrigued by how he processes matters. Hallucinationsare definitely a difficult symptom. As I have said elsewhere, if I weren’t so deeply saddened by his condition, I would find them fascinating.
A few short months have passed since I thrilled at how well Burt was doing. He truly enjoyed his surprise birthday. That was in November when a group gathering to celebrate him was a very welcome experience.
He made it through my birthday party in early February.
It made his decline by the middle of March that much more dismaying.
His current level of awareness also involves a good deal of depression. He seems dragged down in mood as well as in logic and cognition.
And I think he’s just so darn bored. At this point, he’s not a self-starter in any way. If I don’t feed him, food just sits waiting til the bowl is knocked over by his fidgeting.
Likewise, he won’t look at a picture book or magazine even if I place it in his hands.
It’s hard to determine what will be of interest to him. For instance, I tried playing some music. It was clear that he wasn’t receptive to the classical. He said yes to Nat King Cole; this came with Bobby Darin and Sinatra, among other throwbacks to our youth.
After a while, it seemed like he was not enjoying the sounds. Wouldn’t you know as soon as I turned Spotify off, he asked for music.
It’s exhausting having to self-start for two.
My point in this post was not to launch that (obligatory) complaint but rather to be grateful.
I am grateful that the challenges of his care are not insurmountable.
I am grateful for those months when he was perky and engaged.
Atilla My Hon after his exertions (aka tantrums and unpleasantness) on an outing this afternoon.
My struggles this Friday afternoon, facing a weekend alone with my cranky love, focus on figuring out why going out into a beautiful sunny day causes so much agitation.
The agitation makes me fear for his safety and my ability to assure his welfare. I am worried whether I can provide him the best care.
It was a sudden fit of agitation that caused him to fall two weeks ago. He was eager to get out after a long period indoors. As we got into the lobby, his mood took a sudden turn. [See, I’m so emotional, baby, for more.]
His distress was clear, although I didn’t see his reaction coming til it was too late. Once outside, I thought my calm* tone could soothe Burt and direct him to a quiet sunny spot for a rest.
* Yes, that is I Tamara, who remained calm.. well up until he fell and even then. I had a lot of help from our friends in our building.
He responded by shaking his walker and pushing it into a barrier wall. He succeeded in knocking himself over.
Fortunately, he was not hurt except for a scrape on his leg. Fortunately, our neighbors came to the rescue. Many of our neighbors.
I am grateful to each and to all.
My conundrum is as to why going for a walk can cause Burt so much upset.
He reacted in the same way today when his OT, aide, and I went out with him this afternoon.
He was cranky from the start. His OT and I were subject to his scorn and abuse. He said his feet and his legs hurt. He said he was never going out again.
Only his aide escaped his displeasure. His general anger worried me so much that I wasn’t sure I would make it back home without the aid of his carer.
We were guaranteed that our LBD spouse wouldn’t forget who we are, but that’s a little complicated.
Burt has such extreme Capgras that he asks me who I am many times each day. Also, he complains about the “other one” who forces him to eat.
The syndrome is one in which your person with dementia feels there are more than one of you. The imposter me “looks just like you,” as Burt has often reported. My duplicate is just one of his hallucinations, but it affects me powerfully.
The upside is that he’s frequently mad at “her” and I come up smelling of roses.
Well, yes, it is a good thing that they’re not scary. Burt’s hallucinations are mostly benign. A group of pals and co- workers he’s gathered into our home. They make him feel connected, I think, and less alone.
His dreams and delusions seem, on the other hand, to be frightening. He is always lost without money on some form of transportation.
While he was in the rehab facility, he was barefoot and sometimes naked on the subway just about every night.
With this dream re-emerging recently, I dove into reality. “I was with you last night. I’ve been with you every night. This must have been a nightmare you were having.”
It’s surprising that he was able to acknowledge that it might be the case.
Yes, it was a dream, but how do you stop it? he asked me one night.
He might, in a lucid moment, recognize that they’re not real, but his contradictory brain disease forces him to accept his hallucinations, delusions, and dreams as a reality.
In fact, Burt will acknowledge a hallucination but go back to supporting its reality. It is very strange.
It’s that compulsion to believe what he thinks he sees that is stronger than any reassurance I can give.
I am about to cancel a party I planned for our 32nd anniversary.
Parties have been good to (and for) us this past year. Burt loved his 84th surprise birthday gathering. People interested him, and it was a lively event. He insisted I should have one, too, and was able to enjoy the crowd.
The one I’ve been planning for May seems less auspicious. There’s been a slide for him, and that includes his engagement with people.
Not celebrating our marriage with him and our friends is a loss. His decline, of course, is the bigger one.
I started watching cartoons with Burt because they were colorful with plots that were easy to follow. The default mode for him is to misinterpret much of the action anyway.
His “favorites” like Law and Order were too complex. And for my two-cents too violent. I worry about how he’s processing events on Columbo.
We watch some old sitcoms, although there too he’s not always on top of what’s doing. He loves The Three Stooges. Yes. Violent slapstick, but nobody gets hurt (except arguably Curly).
May I digress a moment: last weekend he was watching his “boys” hit each other over the head while I was on the phone with his daughter. She said it was good to hear him laugh. “He’s got a great laugh.”
Lots of the cartoons we started with, like Tom and Jerry, were slapstick and full of (cartoonish) violence. Then along came Bluey.
Not only do they tell sweet stories, but the voices are all so pleasant.
In truth, when asked if he’d like me to put on the cartoons, Burt always says, “I’ll always watch them with you.”
And as with all things, Lewy, some days he’s more attentive than others.
The things that annoyed you when he was well will still be maddening when he’s ill.
You are not a saint, and your spouse’s diagnosis does not make you supra- human.
Leave the saints to religion and on tapestries at the Cloisters.
Cheerful caregiving is an art and an act. You can do it. You are an artist.
The above is a peptalk – to myself – and a prayer of contrition.
I transgress too often; my emotions make me lose my patience with Burt’s symptoms.
Oh, let me be honest when I am impatient it is with (aka against) Burt. I take my anger at the disease out on him. I regret it and rail at myself.
It is difficult living with this disease.
It is so complicated being human.
I didn’t write it, but it’s apt.
By way of apology for my impatience, I also dedicate a poem I wrote today to Burt. It’s called Lunatic. In truth, Burt has proved inspiration to many other poems, including this one about days that are extraordinary.
this is our life 