this is our life

LBD Awareness

A year ago, I commemorated Oct, Lewy Body Awareness Month, by beginning this chronicle of our journey.

October marks 4 years since Burt was diagnosed. It is not a happy anniversary.

Nonetheless, I remain grateful that I can still enjoy him. We are having some rough times, but he is still my delight. I am grateful for those feelings as well.

We’re celebrating this LBD Awareness Month by joining the CaringKind walk (albeit virtually) on October 19th.

Your link to sponsor Burt & Tamara is here: https://give.caringkindnyc.org/fundraiser/5610000

I am also grateful to you.

Advocacy

A provider is giving me a hard time over my healthcare proxy. They’ve refused to discuss Burt’s plan of care until they vet my proxy.

This morning, while mulling my frustration, I thought oh come on. I have the marriage certificate.* That should be proof enough.

[*Side note: a beautiful copy of this docunent arrived in Friday’s mail.]

In further mulling, this time on my participation in my true love’s healthcare, I had to admit I did not interfere much before his illness.

As we gained mileage in our life together, I did go along to see doctors.

We had multiple appointments to try to chase the cause of Burt’s double vision. I accompanied to dentists.

In retrospect, I should have been more proactive on at least some occasions.

His PCP recommended Benadryl to help Burt with anxiety and sleep issues. I saw a red flag.

Waking from a nap after popping one, Burt seemed like a stroke victim; his speech was slurred, and he was confused.

I think I did mention my concern to his doctor. He pooh-pooed my worry; it takes the edge off, the medical professional said.

I think that Benadryl accelerated his Lewy Body if it didn’t actually cause it to happen.

We never pick the best time to overstep, do we?

Recognition

Burt has times when he is sure I am one of “6 to 20” wives. Which one are you? Honestly – although I call this schizophrenia by proxy, – I am glad that, if he’s confused, he asks.

This query about who and which at 6 or 7 pm always puts me in a big panic. It usually signals a long chat (not unlike the one last night [see below]) but with much less likelihood of his falling asleep. At all. He just gets wound up!

When he doesn’t ask, I assume I am I and blithely interact as myself. I may, in fact, be “new girl.”

Often, his new girl interactions are very pleasant. He seems to crave novelty. [Ha.]

The only real danger in these cases of “mistaken identity” is that he will tell me, er her, that he hates his wife. The other pitfall is how very confusing this is for me.

Let me tell you how surprised I was that a 1am interaction that regarded who I might be was less jarring than expected.

Last night, I never said which wife I was. We went on to chat about schedules for the next 3 hours. At that point, I said we had to get to sleep.

And we did. No mention of how awful his wife was. Phew.

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.