Marriage is hard. First, you have to love the person and then it’s a lot of work.
Burt advises some “friends.” His conclusion is that all “those 30 people over there” will think twice about getting married.
He was having a lucid, although clearly not hallucination-free, morning. I value the days when he knows who I am and doesn’t put me through a battery of questions.
It was also nice that he wasn’t exhibiting paranoia but just having a pleasant time.
It’s a mystery to most of us, but come sundown or thereabouts our pwd will fervently express a desire to “go home.”
Oh, honey, good news we’re here. Burt’s response “I’ll take your word for it.” Yes, we don’t have to travel or anything.
There are other occasions when he’s eager to go home. As soon as we’ve left the house. I think that’s a dementia thing, too.
Burt told me all week how much he loves going out on Saturday and Sunday.
We are barely out of the lobby, he’s asking where we’re going, a question I returned to him. Well, where would you like to go? [You know I meant which of the destinations we usually choose.] He said “home. I want to go home.”
This has the feeling of being my proforma weekly post. I am stuck in not understanding his antsy behavior.
Today’s solution: we’ll stay on the move. A little bit of time at the playground; go over to the ice cream parlor; stop by the river.
Hope we’ll run into someone we know en route to perk him up.
I think I know why it’s so difficult to redirect Burt. This may apply to your loved one as well, though I have heard rumors of pwds being easily put on an alternate path.
My guy looked so puzzled when I tried to change course. I believe it has to do with how slowly he can process what he hears.
At least that’s part of the reason for his resistance. He is also very solidly a stubborn man.
I am not a believer. I am an atheist.
Without a religious allegiance or a belief in a god or an afterlife, you would think I would be free from all other superstitions.
In fact, I inherited much of my magical thinking from my mother. She, too, disdained religion, but lord she had a world of witchy beliefs. I would not have known to be wary of a hat on a bed but for her.
My husband has been prayerfully grateful to God the last several weeks. His atheist bona fides are seriously on the line.
However, his gratitude is much appreciated and a welcome antidote to some of his difficult and more belligerent behaviors.
Burt and I had been in the house on the weekends since I had become unsure of my strength in avoiding a tumble. It was time to get a weekend aide to assist with outings.
This project would help both of us. Burt resented the third-party intrusion for a while but has begun to adjust.
My project only works if the weather holds. Miraculously it has.
I wonder if this appeal he’s been making to God is the reason for our luck with the weather over the weekends.
Knock wood. I really don’t want to jinx it!
So, how exactly is superstition different from religion?
Burt has a susceptibility to falling in love. I have mentioned it before. This morning, I noticed a new criterion; [the first is that the “girls” treat him well or ‘are nice to me’ as he puts it].
“We met when you brought me breakfast,” he says. Since we had had so many issues with eating for so long, this connection was a thrill.
Yes, girls, the way to a man’s heart is through his stomach, but don’t forget to treat him right! Or as Burt frequently asks, “Be nice to me.”
people who wear sleep trackers on a “perfectionistic quest for the ideal sleep” actually have their sleep become worse. If that sounds like you, it might be time to take a step back.
“Sleep is a passive process,” one doctor told Kate. “It is to be protected, not forced — or ‘maximized.’” In short, winding down before sleep: good. Winding yourself up about sleep? Not so much.Kate Lindsay has a fascinating new story in The Times [about the growing obsession with sleep (my words).]
Zonked out
By Maxwell Strachan
The Morning, an NYT e-newslettter
Burt has been a sleep skeptic since he began his journey with LBD. Of course, the skepticism was self-serving. He could scoff at my pleas that he let me sleep. It was 3am or 2am or 4am; why wouldn’t he quiet down, please?
He felt the morning/ night dichotomy was a foolish construct. Why is it not 10 in the morning but is 10 at night? Isn’t that ridiculous?
We have less of the mocking now, but he still can keep odd hours. Not as regularly (or irregularly), but it happens.
Looks like he was ever so slightly onto something. It seems we, as Americans, like to, I don’t know, overdo. Guidelines turn into advice which turns into trends, trends into fads, and fads into obsession. Too much of a good thing is… better, worse, or not what you need.
That said, let me be completely clear, we do all need sleep.
Caregivers and the cared for need to rest their brains and bodies.
We are working on regulating Burt’s sleep pattern so I can regulate mine. Not obsessively, just prudently.
I look forward to less yawn-y days. And more peaceful ones for Burt as well, who is often cranky for lack of sleep.
It’s hard to explain. It makes little sense even to me. But…
There is something about the challenging symptoms and behaviors that, as they pile on, invite a more vigorous response.
He has wilder delusions, more vivid hallucinations, less coherent responses, and my capacity to deal is supercharged.
Yes. I have bags under my eyes and incessant yawn reflex, but I feel invigorated.
Not in a “bring it on” way. Hell, I can use less of these tests to my sanity. But still: look at me. I can.
Burt falls in love easily. Thanks to Capgras Syndrome, I am one of dozens of Tamaras in his life.
A new me surfaces on many a morning. There is no convincing him I am the “real” the “original” the “favorite” wife.
This is especially so after lover boy introduces himself as single or single-and-hates-his-wife.
I stick to my story. We’re married for all these years, after a 2 year engagement.
My name is Tamara. I share his last name, which I took when we married.
[Aside: I put our ketubah front and center to prove our marriage. This may save me the pain of having to get a copy of our marriage certificate.]
These facts alter nothing of his narrative.
He is immediately smitten. The latest wife is invaluable to his well-being. We start from there.
Note that I do not contradict the prevailing line of his insights.
The funniest part of his retort explaining the many facets of Tamara-dom is unleashed each day.
Funnily enough, I am somewhat miffed by his explanation.
There were so many who wanted jobs and to live here that the bosses said ok, but you shall all be named Tamara. [This had something to do with lack of space, I gather.] We’ll give you a “second name” later if you wish at no charge. “What you didn’t ask for one?”
Interesting, huh?
Exasperating though he is….
It’s a long shift when early rising and a later bedtime turn the day into 16 hours.
In much of this time, he is totally and naturally confused.
His conversation, as I may have mentioned, is a constant deposition of theories and ideas. There is an insight occasionally which jars me but is fleeting as it melds into a delusion or half- baked theory.
He needs more sleep, and after a 3am wakeup has dozed off before 6pm.
If I were prudent, I would follow suit. There is no guarantee that I won’t be met with an early and extremely urgent call again in the morning.
There is nothing funny about having dementia or caring for a loved one with dementia.
Yet there is nothing more welcome to patient or carer than a hearty laugh.
I devise amusing (to me) ways of looking at our plight. I picture Lewy as a roller-coaster (as it is most regularly described) on and off the rails. Come to think of it, that’s an intensely scary image and not at all funny.
Oh, well.
Burt still loves to make people laugh, although today was not one of those blissful days. I cherish his attempts (generally successful) and welcome his engagement with our world.
Here’s hoping this leg of our roller-coaster journey continues in an upward direction long enough to celebrate his upcoming milestone birthday with friends!
I’m also hoping we have some love and laughs as we roll along!
this is our life