this is our life

Support groups

Supported was a tangent that derailed my intention to discuss support groups.

These have been a vital life-line on my side of the journey.

Early on, his first neuro team at Mt Sinai guided me to regular sessions with their social worker. What a gift that was.

The social worker from his current neurologist’s office leads a group I attend monthly now.

Early in my travels, someone suggested I speak with Norma. (I did. We spoke for an hour and a half.)

Lewy Body Resource Center, founded by Norma Loeb, provides life altering help through support groups for those caring for a person with LBD.

I now attend one or two of these each month. Sometimes, I connect with a third one as well. We LBD carers share more than just the diagnosis, the symptoms of which both baffle and amuse.

On line, I use the message board of LBD Caring Spouses daily. Tips, suggestions, experience flow back and forth on the site.

On a Wednesday morning, I find myself in an alz.org spousal group, and then I head over to an intimate LBD Resource Center support group. Zoom meetings are so convenient to navigate.

I think I attend a half dozen each month. My special pleasure is the Caregiving Expressions, also an alz.org resource, where we write our experiences.

On occasion, I take advantage of a nearby support group and pop in in person. My local Lenox Hill Neighborhood House has hybrid offerings; you should seek some through Community Centers in your hometown.

In fact, no one should attempt this lonely energy-sapping excursion on their own.

Find support through CaringKind or Alzheimer’s Association or in online workshops.

There are many online supports: Dementia Alliance of NC and Caregiver Teleconnections. Teepa Snow or Dr. Natalie’s Careblazers. The Lewy Body Dementia Association has a YouTube TV channel.

There’s a lot of support to be found. Google it, find it! As the old ad used to say, “You’ll be glad you did.”

Supported

Burt has me and his excellent aides as his support. He gets visit from a very caring OT and PT team.

He also has a fantastic crew of doctors and nurses from Weill Cornell Center on Aging to keep his well-being on track.

It’s not easy maintaining his quality of life at the best it can be.

He can only describe aches and pains in the vocabulary of generalized anxiety.

Otherwise, he is contentedly manic, talking to “his friends in the ceiling” as an aide put it to me.

In short, if anything is awry, we have to catch on.

Emotionally, and we’ve already established just how rampant feelings and moods are, he’s either “scared” or happily gabby.

We go along for that ride. “I got you” is a standard refrain.

His bedbound state makes his physical care harder.

The vigilance has turned from fears of his falling to feats of our strength.

He has to be turned side to side to get him changed. He needs to be placed on his side to mitigate the danger of pressure sores.

He resists the turning both physically and very vocally. We trot out “Don’t be scared” and the old “I got you.”

Clean clothes and the mild exercise he gets in this morning ritual generally put Burt in a good mood.

Yes, Burt, I got you!

It isn’t but

It feels like betrayal. I know it isn’t, but since I say Love is lovlier how could I?

Since Burt’s been bedbound, I felt it was time. Since he’s in such a decline, he couldn’t participate.

I met with his doctor to file a MOLST on his behalf. We also opted for a palliative approach to his care.

The MOLST is necessary. It’s the do not resuscitate order. If your darling is stuck in a degenerative neurological disease, you want this in place. You may want one of these for yourself too, btw.

It was a hard thing to sign. It’s posted on my fridge. It’s just in case. You know.

Love is lovelier

Oh dear. The second time around. 🎼

For me, the second time is really the years after diagnosis and the symptoms. I am the second wife, but Burt is my first. And only.

I know, I am laying it on with extra schmaltz.

There is something to what I heard from a recently widowed LBD wife years ago: we find a deeper love for our person as we care for him/her.

It might be that we now see our spouse more vulnerable. S/He needs us more than ever before. We are needed; our care is needed and wanted.

It’s nice to be wanted.

We’ve lost the partner we used to bounce ideas off before making decisions together. We’ve also probably lost much of the physical intimacy that makes up a marriage. We can’t rely on the conversations we used to love or enjoy most of the outings we had.

Things are different between us.

But….

But, Burt accepts my care and help and the outreached spoon sweetly and graciously.

I can make our lives in the years of his decline as good, happy, and comfortable as possible.

It’s my responsibility, and I am grateful.

To care and protect

My mission since Burt’s diagnosis [the big scary dx] more than 4 years ago has been to protect him.

Of course. That’s it. I have pinpointed my malaise.

I can’t fix this as one of the prompts in my grief writing support group put it. That phrase sums up my frustration in the most succinct way.

Now, it’s that I cannot protect him from getting bed sores.

Pressure wounds are a danger when he’s bedbound. I can try, and I can diligently observe and treat.

I need to be able to turn him. I cannot. I need assistance, and even then, it is I who is assisting.

He’s helpless, and I feel helpless to help.

There is the formula for my current sorrows. For now, I have pinpointed my malaise.

I will wonder what needs fixing that I cannot fix. How can I meet my mission to care and protect if I am helpless to fix this?

There will be other sadness. Different sorrow. I can’t fix it but

The honeymoon is over

It’s not for me. I am saddened and relieved that I am no longer the most important person in Burt’s life.

No, there isn’t anyone else, although during Lewy’s tenure, he’s had infatuations. Early in the journey, he asked our lawyer about divorce so he could date one of his caregivers. Why not? She was consistently kind, and I nagged.

He tells everyone that I am never here. To my relief, he stopped saying that he hates his wife, but I think he was thinking of me as a voice on the phone.

He no longer calls me randomly during the day [we’ve established that]. I’ve got my mixed feelings about not hearing from him.

The other day, he showed none of the usual enthusiasm about my homecoming.

Last week, when I said I love you, he stared at the ceiling. He used to say, “I love it when you say that.”

Every day is different. Tonight, he’s talking to me, by name. The conversation is mixed in with some delusions and a fantom friendship, but I seem to matter at this moment.

Collateral damage

Burt is in the line of fire as Lewy takes more and more of his self. I feel for his losses as I do for my own. He spoke of himself in the third person today. “Does Burt know?,” he asked.

I don’t understand so much of what he utters these days, but I heard that astonishing bit clearly.

While he suffers in silent confusion or more often in chatty confusion, I also worry at my being collateral damage. It is a disease built for two, an ill-fitted rickety bicycle of symptoms and losses.

I am losing, too. Not just my lover, my partner, my helpmate, my companion… need I go on listing the who of it all?

I am also losing my quality of life. I no longer do many things that gave me (us) pleasure. I do not go to the theater to enjoy ballet or music or drama. I miss that, but am not eager to revisit that part of our past life. I am simply wistful.

It is the company of friends I seek now. Conversation, even if it is chit-chat, has acquired a mythic value. I feel the existential need to connect to that part of my life. This is the me-time I mean to pursue.

Slipping away

I hear myself saying, “I love you, truly, madly, deeply.” Why am I always quoting, inserting film titles or song lyrics?, I ask myself with mild annoyance at the habit of anchoring my affections in cultural history.

I think it’s to acknowledge how normal it is. To love and to care, to adore the man I love [there I go again] is something others have done. It’s routine. It’s not unusual.

It seems I need to validate that for sentimental reasons.

The distance from cognitive impairment to making no sense has become a matter of days. Oh, I know it’s been a trajectory of up and down over many years. I have carefully documented the ride we’re on in my diary of days and publicly here.

We are at the point of no return, I think; the place where he can settle only deeper into confusion.

I have said this before but I know that my expressions of love and devotion are to reassure him and remind me. I am anchoring and holding fast in a storm of emotions.

I need to recall what love is as I feel the sadness, the sorrow. The loss.

Time passes

A gratitude

Time is an ironic boss. It passes.

It moves so slowly that it’s as if someone forgot to release the break.

At the same time (or by the same token), it rushes past us in a blur.

In those instances (in those moments), we are caught off guard by the whirlwind. We sometimes forget exactly what happened.

We’ve lost focus of the good times and can’t hold on to them.

We may have a vague sense of their importance, just as we have a sense of how trivial some of the bad times are.

Good times are in the timing.

We can frame them (as keepsakes and in remembrance).

We can find them even when the slow passages wear us down.

I will not wax specific here.

I will let you find your own best-of-the-day.

Me me me Time

A Lament

Let’s face it, I have me-time even when I sit with Burt. (How do you think these blogs get written?) Most of the time, there are no pressing and time-consuming needs.

There’s a little quiet conversation. It’s not challenging or sustained.

Often, it doesn’t even include me as Burt’s focused on some fantom friend. His aide and I love when he gets goofy and laughs at his own jokes.

There’s the feeding which feels good because giving food is a nurturing act.

There’s sitting and listening and scrolling.

There are no more excursions into the park. Just weekends at home sitting.

So I have time. I have me-time. What I miss now is the we-time.