No aide

I take my respite seriously. I’ll admit sometimes too seriously.

Time away from the unusual thinking fostered by LBD is my golden ticket to staying sane. Or so I fervently believe.

I take that time each weekday. On the weekends, we have help so I can have less hands on with the care.

All of this allows me to enjoy Burt’s company in a more relaxed frame.

Over the years, there were many occasions when professional caregivers couldn’t make it.

In the past, I had treated those as opportunities to step in to spend time with him.

As his care has inevitably become harder, I have been more and more reluctant to stay home.

This may not be entirely fair to Burt, who has had to deal with unfamiliar aides without any warning.

He’s always complaining that I leave him.  Staying home to care for Burt seemed like it could be a worthwhile experiment.

[I want to acknowledge that many of you actually care for your spouses hands-on and full-time. My hats off to you!]

Yesterday, when we weren’t able to find someone for our regular hours, I was pretty sure we could have a chance at a quieter day if I stayed with Burt. He wouldn’t be agitated by a stranger.

I was not thrilled to lose those hours I reserve for myself. I am so glad I did.

All day, however, he thought I was a different girl, so I wasn’t sure that I would get credit for spending the day with him.

We had a nice day. And, this morning, he acknowledged that I was home. 😎🤔👋

Today, I am back on my schedule. He’s again feeling abandoned.

Conjuring Dickens

Not only is Burt emotional (as documented here before), but he is capable of having a multitude of conflicting feelings at once.

It was the best. It was the worst. All on one occasion.

He has no filter, so he isn’t shy about letting me have it. Nor in the least non-plussed at sharing a good review a few moments later.

He did tell me that he hates that our outings are so long. I knew this but was ignoring, probably an ill-advised strategy. 

This was the outing. Not bad, right? We ran into old friends and former neighbors out in the sunshine to help make the day. We get our weekly call from our California daughter on these Sunday jaunts, too.

On the other hand, I have made myself tzar over our adventures. Being outside seems preferable to his being at home and bored.

DTA. E.T.A.

Soon, we switch the clocks.

Not soon as imminently but more in the context that Christmas decorations will go up before the Thanksgiving leftovers fill our freezers.

Musing over the time change is a teary event for me.

Time is a touchy topic when your loved one has lost all sense of it. Also, changing the clocks was a Burt initiative in our home.

He still changes the time on his wristwatch.

I adjust his watch. He thanks me. He asks what time it is. He fiddles with the dial.

He wears his watch all the time. It’s never set right for long.

Help is on the way

As a caregiver, it’s easy (and way too common) to feel alone on the journey. In many ways, we are.

The idea that no one is coming to our rescue when we are in the throes of a Lewy episode; the feeling that the worst moments are the ones only we can handle is provocative. It is also broadly true.

Nonetheless, Burt and I have a team. I feel very supported. His PCP never fails to answer any question and work out some solution.

Yes, we are alone when he struggles to get out of his recliner before bed. We are alone when his restlessness during the night ends in an awkward sleep position. Lots of issues are there for me to fix or make better.

Nonetheless, there’s plenty of help along our way. Some of the help I get and seek is from my “civilian” friends; they have stepped up in ways I feel beyond the call of friendship. Much is from others in similar situations, many of whom I now count as friends as well.

Our neurologist’s office has a terrific support group and an approachable social worker.

In fact, support groups and social workers prop me up and pull me through all month long.

You can call on the Alzheimer’s Association, which has a 24-hour helpline.

It’s also Alz.org. I turn to for several Zoom groups per month.

I participate with the Lewy Body Dementia Resources groups, where my cohorts are all  experiencing this specific dementia.

Likewise, with the online forum LBD Caring Spouses, which brings compassionate wisdom  daily into my inbox.

There is another part of our network that is invaluable.

We have home aides who help in all aspects of care.

In the beginning, they came as company for Burt. Despite his resistance to the care, he formed some friendships. At this point in our journey, he needs aid from an aide.

I have learned a great deal from these professionals about best practices.

His caregivers even helped me overcome the food battle that was brewing for a long time.

I value their input about the day to day of Burt’s condition.

I definitely need their assistance with his activities of daily living.

I am grateful for the time their presence allows me to regroup and refuel so I can better meet the challenges when Burt and I are alone.

Burt says

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.

Going home

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.

Redirect

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.

Superstitious

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?

Easy

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.”

The question of sleep

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.

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