Relieved?

It was a relief of sorts to realize that Burt’s decline of yesterday was due to a raging fever. The fever, after a night with Tylenol, is in a more manageable range.

I am ashamed of myself for being so angry and impatient over Burt’s inability to get out of bed. How unkind of me to act as if this was about me.

I am distressed over his fever and portalled his always reliable doctor. Today, it’s about getting him treatment.

He is making better sense today.

We’ve started to connect a little in the sweet way he usually has.

Heartbreak

Lewy Body Dementia offers just reams of tales of heartbreak. They appear as unexpectedly as if we all didn’t know where our story was heading.

Every decline has been a surprise to me as if there was a plot twist I hadn’t seen coming.

I can’t justify this reaction. I know what this journey of ours is.

Today, I am inconsolably sad. Burt refuses to get up to go out with me. It’s our day together, and he won’t budge.

My pride is making me childish. He just can’t, and I worry that if he won’t today as he did not on Friday, he will no longer be able to walk tomorrow.

Soon, he will be bed bound. I am not ready for that.

He speaks of death and dying. He no longer recognizes my love for him.

I am definitely not ready for that. For none of that.

It’s Lewy, so…maybe things could change again. Or it could be a hangover from his vaccination that will pass. It’s Lewy, so we might be experiencing turbulence and …who knows.

Fears

Paranoia is a frequent visitor as we age.

I think it’s because the old know they [ok we] are vulnerable.

For those with dementia there’s a greater feeling of susceptibility.

Your p.w.d. may seem unaware of having a malady, but s/he senses that there is something off.

Paranoia seems like a way to protect ourselves when feeling susceptible.

It may be a misguided approach to imagined threats, but it is a tradition as we get older.

Burt’s paranoia appears to center around food, although he has  declared that an aide is killing him.

On some occasions, he is being slain by one of his hallucinations. As in, that guy (not) yesterday was  murdering him.

The paranoia is a delusion, so why not have it exercised by a hallucinatory agent.

Thankfully, the fear is generally perfunctory and passes. It has not stopped him from eating.

Even after he says that it’s poison I am giving him, he usually opens wide for the next bite.

Surprise

Have you noticed what a handy tool the calendar is? We share so much by pointing to it.

Look, over here, come Thursday, it’s your birthday.

Burt is no longer able to keep order in the days, the months, or the dates. Recently, on a phone confirmation, he wasn’t able to assure the caller of his date of birth.

He’s going to be truly surprised. My hope, my desire, my want is that he’ll be happily surprised by a small crowd of friends here to celebrate him.

I hope he will like the attention [he usually does] and that he recognizes some of our friends [unlikely]. He will know it’s all about him. 🤞

This little project violates my “in moderation” dictum, except that it is scheduled for just 2 hours. I recognize that that might be 1½ too long for Burt. 

If it goes well, I will reinstate my invitations to a couple of people to drop by from time to time. I get out with people all the time while Burt is with his aide. He sees only  us and his PT or OT.

This useful mental health tidbit was reinforced for us by the pandemic: Isolation isn’t good for any of us.

For better. Or worse.

BTW, I found the errant marriage certificate in an envelope in this bag today.

A helpful neighbor who stopped by to move Burt into a better position in the bed said, “You might not notice, but I see a huge decline in the last 3 months.” I did. Notice that is.

The route’s been downhill, then a little rise and plateau. The fount of nonsensical stories is hard not to notice.

Burt’s conversations with a slew of imaginary friends are less and less coherent. I guess just the fact that he has these chats is a signal; heck, I know the signposts.

I get reports of trips he’s taken from him. He’s enjoying tv shows with the set off.

He’s mostly cheerful even in his arguments with the pals only he sees.

Hallucinations are near the top on the checklist of signs of LBD. Delusions, too.

He’s been weaker walking and in bed more. He’s sleeping for long [or longer] periods, too.

I’m watching. Hoping there will be a famous Lewy swing.

I think his birthday surprise will bring him a little joy.  Connecting to others may be just the ticket.

Windmills

It might have been prescient anticipation of the advent of Lewy into our home, but I never had the forbearance to enjoy the saga of Quixote.

His delusional tilting at windmills always annoyed me. The musical rendition of his story does offer some gorgeous musical flights, however.

One New Year’s Eve, Burt bought tickets for us to see The Man of LaMancha.

It opened on December 5, 2002, and played the Martin Beck [then the Al Hirschfeld].

Brian Stokes Mitchell, an actor we had come to appreciate in a variety of roles, sang the rousing I, Don Quixote and, of course The Impossible Dream.

His lovesong to his lady love, Aldonza, is called Dulcinea. It is languid and soulful.

Aldonza, the excellent Mary Elizabeth Mastrantonio, mystified by his renaming her, reprises the song, as down to earth as he is flighty.

Hers is a measured, sensible, and proportionate response to Don Quixote’s confusion.

Little did I know that there would come the day when my practical and reasonable husband saw his own windmills to conquer.

A day off

Burt was asleep all morning and now all day. His aide and I shared the space, texting and reading on our phones. After an hour and ½ trying to stir him, I decided to make Sunday a respite afternoon.

I went to cast my ballot. Called some of my peeps, enjoyed the crispness of the fall day. I also perversely missed taking care of Burt. Perversely, only in so much as I am often exhausted listening to his theories and confusions.

Obviously, I love him, but this felt a little like guilt, my missing him.

I was doing something I don’t do on Sundays. It felt forbidden.

Don’t get me wrong. It was ever so unplanned. And yes, it was relaxing.

It’s the money, honey

Caring for a family member with dementia can be heartbreaking and difficult in so many ways. One of the hardest tasks may be protecting them from ruining their finances as their condition deteriorates. Research shows that those with dementia often show signs of financial trouble years before diagnosis. Left unchecked, their unpaid bills, gratuitous spending or willingness to give away their money whenever asked can drain their savings and push them into debt. Here’s how you can protect a loved one in cognitive decline from financial harm.

CNN 5 Things Newsletter
By Andrew Torgan and Daniel Wine

Caregivers are, and should be, on the lookout for any financial issues that might arise. It’s our “job” to be looking out for our loved ones.

This can be tricky, of course. If your spouse, for instance like mine, was on “Wall Street,” there may be greater resistance.

Fortunately, he used to ask me to do some research.

For us, as for many middle-class folks like us, any risky behavior was just that, a risk. Money is not a limitless commodity in our home.

As a caregiver, you will need to take hold of the reins after the diagnosis; at the very least, you will have to limit your p.w.d.’s access to funds.

It’s hard, not just because he or she may have managed all the household finances.

It’s hard not just because you may not be comfortable doing the managing.

It’s hard because it’s one more area in which they’re losing agency.

Taking away my husband’s access to trading accounts was one of many small heartbreaks early in our journey.

As CNN’s Jeanne Sahadi notes in the article linked above, the trouble might have started long before his diagnosis.

My usually careful, risk-averse and conservative spouse showed signs of financial recklessness.

It was easily checked, but as I look back, it was a warning sign.

Your vigilance over these matters falls under the rubric of taking care of both of you/your family.

Caring while under…

Yesterday, it appears, the combo of an RSV shot on Monday and a Covid booster on Friday made me feel crappie. My body ached, and my temp was slightly elevated. Of course, both my arms hurt at the injection sites.

Mildly unwell as I was, I was hard pressed to show patience; I skimped on prepping food (you-all know how I value Burt eating).

I was just a little under 100% fine; a bit under the weather.

This brought me to reflect on those caregivers who somehow still give care while incapcitated.

Kudos to you. Please also take care of yourself!

A deep dive

In the abstract, I am fascinated by the mechanisms of Burt’s disease. In reality, the manifestations of Lewy Body are overwhelmingly sad.

Trying to deduce patterns is part of my close study into all things Burt. I want to see what prompts his irrational conclusions and how his fantasies develop.

There probably is no pattern, just a bunch of synapses misfiring. It’s random like the twists and turns of this slalom course we’re on.

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