this is our life

Support

There is a lot of support for the family member in charge of care.

As caregivers, we are the better for taking it.

Help is offered in the form of group sessions (now conveniently on Zoom); phone support from trained social workers; and hotline responses for urgent matters.

There are myriad associations offering this invaluable aid. The usual suspects are the Alzheimer’s Association, Lewy Body Dementia Association, and the Mayo Clinic.

Smaller organizations are also at work, including the Lewy Body Dementia Resource Center, which also offers programs for our Lewy afflicted loved ones.

There’s Caring Kind, which trains aides and connects them with the family caregiver for in homecare, and has regularly scheduled groups for support.

Somewhere along the way, I was lucky to discover Caregiver Teleconnections sponsored by the WellMed Charitable Foundation.

Recently, I felt privileged to participate in a focus on the positives of caregiving. The moderators, Elliot Montgomery Sklar and Lucy Barylak, put together an inspirational program.

Another extraordinary support group comes from my local alz.org; it’s a writer’s workshop for caregivers.

Many neurologists will provide either a support group or access to the office social worker in one-on-ones.

My advice is to take the opportunity to talk about the caregiver moment whenever support is offered and as soon as the opportunity arises.

As caregivers, we are the better for taking all the support we can get.

Confusion comes and goes 🎢 with “Benny Blue.” 🎢 For instance, Burt’s level had seemingly hit a high water (or maybe I should say low water) mark. Then today, the word-scramble went back to his normal.

Yesterday, he didn’t recognize the term he had been using to describe his dementia; he had called it “Benny Blue” for some time. Today, he threw it around freely.

He also gave his aide an extra helping of difficult today, hung up on me on the phone, but spoke with greater assurance than he had in a while.

I could rest from my task at guessing what word he intended to use when using some random term. He knew what he meant to say. Today.

My intention is to treat the downs and ups with a certain amount of levity. They come and go.

Gratitude

What do you complain about the most?

The caregiver’s journey is often lonely, depressing, and difficult.

A recent support group seminar served as a reminder that there is a lot for which to be grateful while caregiving.

The Caregiver Teleconnection program from WellMed Charitable Foundation focused on the Positive aspects of the journey.

For instance, I shared that I was grateful that my husband often shows appreciation.

I also am grateful that caring for Burt has taught me so much about him. I (to my chagrin) did not appreciate many of his best qualities while he was well. They have been revealed to me in the forge of our travels with Lewy.

The suggestion is to write down one good moment from our journey each day.

There is always something in seeing the glass half full that is cheering.

Prompted

So much that is too 
Much yet, I can't fix
That. Why me, Burt 
Cries? I concur why
Indeed. I want to, I 
Do. I want to make it
All better, go away.
I want to fix it. All 
Of it. I want to fix
That. I want our life
Back. So very much.
The elders would say
"If wishes were horses
Then beggars would 
Ride." And beggars, we
All know too well,  
Can't be choosers.

When things change

We have a rhythm to our journey. Like the clacking of train tracks, it tends to be uneven.

His mood changes, and his love, constant but as changeable as the seasons of his moods, comes under their fire.

It ebbs and flows but always can be seen rippling under the changes. He returns to me with his adoration.

I am grateful. A storm has passed.

It might return.

Or he might unexpectedly be as happy as he was this afternoon.

It’s always different and then the same somehow.

Calm down

When I am unable to accomplish something with Burt, I don’t stay calm.

Burt, sounding reasonable, tells me to calm down. This guidance is wise.

My panicking and consequently screaming louder at him tends to have the unwelcome opposite effect. He has done nothing wrong as he is quick to point out. For the most part, he has done nothing.

He hasn’t finished his dinner as I asked him to; he is still sitting in the chair and not going to the bedroom. His inertia is generally accompanied by a good deal of chatter.

It’s the chatter that triggers me. And the fact that I can’t get him to comply.

Calm down is sage advice.

It might not get him moving any faster, but it won’t have him puzzled at the ill treatment he’s suffering.

When I don’t scream at him, he is more likely to cooperate at some point and at his own pace. It’s a slow speed, but when I am calm, I can wait it out.

“Let them do the things they can”

Excellent piece of advice, that.

It may have come from Teepa Snow, our dementia-whisperer.

For me and perhaps you, if you are a caregiver to a pwd, it’s hard not to do for, decide for, control the experience.

To my curiosity (and a touch of my being annoyed), Burt got ticked off while waiting for a late evening PT session. When his physical therapist arrived, he sat him down and said he didn’t like these late hours. He tried to get me to reschedule, but I said the schedule bothered him, not me.

To my astonishment, Burt worked out earlier hours across his schedule. It took a lot of repeating and writing the new times in his notebook, but he got what he set out to do done.

If I had my druthers…

Today, I had an intensely isolated time to spend with Burt. It was cold and icy, weather conditions that kept his aide home. They also deterred us from venturing out.

The short trip to the lobby – just to get out – had him grumbling over the cold. Preparations for that trip took so long that it had me regretting the attempt. It was done in the spirit of easing his boredom.

All outings are an effort, and the time it takes to get him ready even just with his pills is astounding. Midway, I am not sure he remembers what he’s meant to be doing.

This is infuriating. It is also sad. He is not being difficult. At least most of the time. He allows himself to be diverted by his own rambling trains of thought. Part of me rejoices that he still has this capacity.

Today, I also realized that I wanted for us to have a community to share his life. He seemed to concur since he was asking if we had anyone who would be visiting us.

We are fortunate in that we often have visitors.

Our friends have not forgotten him. Tonight, he has a little entertainment from a PT session. A call from his cousin to me earlier provided us with lots of conversation and allowed him to use his memory to place that side of the family.

We are fortunate that little things like this can enhance his day.

Pre-existing condition

It’s interesting how many spouses of folks with LBD have noted that their pwd was extremely smart.

The other often reported fact is a tendency towards anxiety (before it’s a symptom of the disease) or obsessive behaviors.

From the oral histories, we can see or suspect a pattern.

Some of these psychological ticks and quirks may be contributing factors.

Burt suffered panic attacks all his life. When I first knew him, I dubbed him Chubby Checker for his habit of ✔️ getting re-confirmation.

Burt’s panicking never stopped him or slowed us down.

He organized trips albeit to nearby venues; got us the 2001 World Series; bought a block of a dozen ballets in one season because I enjoyed it.

Burt was a goer. And we went.

I am very lucky he made those great memories for us.

I’m a person too

In the midst of all the losses- Burt is distressed that he has no job, I took his money, everyone in his life feels they can boss him – he will say, “I’m a person too.”

This plea for respect and dignity is in part complaint and in part a request.

It never references his distress at having a brain disease. That is a separate issue for him. For me, the cri de coeur is a reminder to pay attention to his wishes even if I need to filter them in my reality.