The confusion

It’s hard to resist the urge to say “really? Really, you don’t know that your first wife was named Susan?”

Just one of a series of “really’s” that his infliction brings to the fore.

As we’re on a high of successes, his confusion is more unwelcome. I feel it like the contradiction pulling me down from the top of the roller coaster.

We pulled off a successful birthday party for me. Burt’s anxiety about it extended to the event itself when he took a long time preparing; once he showed up, he seemed in his social element. He called me out of the party before he was ready to participate to make sure I offered food and drink. Ever the thoughtful host.

The next day, he initiated a trip to a restaurant. This was only the fourth time we dined out since his diagnosis. He ordered scrambled eggs, mashed potatoes, and barely ate, but we had a pleasant time.

The walk to the restaurant, like our trip last weekend to a Starbucks, was challenging for Burt. He is always cold, and that was a factor in his complaint, as was wondering where we were headed and how much longer it would take.

Seeing him do so well and recognizing the impairment of his dementia are two thoughts I wish I didn’t have to juggle.

The confusion is real. The successes are real.

Brain health

It seems that advice for maintaining a healthy brain is similar to what we do to keep our bodies well.

Walking or any kind of moving helps in this goal.

Smoking is out, but studying is a boon to our brains. Being overweight is bad for our bodies, our hearts, and our brains.

Another essential for good brain health is challenging our memories and intelligence.

All 10 suggestions for mitigating the risks are found in the Alzheimer’s Association article linked above.

It’s shocking to know that two-thirds of us are, in fact, at risk for dementia.

Let’s do what we can to lower the risk. Stay the healthy course as much as we can.

Good news

You get some great, amazingly fantastic news. What’s the first thing you do?

You share it with the one you love. Right?

After that “point of pain,” I also need to share something wonderful.

Shortly after we got Burt’s diagnosis, I was rummaging through a closet and found some of the extravagantly sentimental cards Burt had given me over the years. I burst into tears.

He was so confused at that point in our journey that I was sure I would never get another birthday or Valentines greeting from him again.

The contrarian proved me wrong.

He sent his aide to buy me a card, and it was as sentimental as any of the ones I received in the past.

Also, he had enjoyed his surprise birthday party so much that he insisted I give myself one as well.

We’re about to see how that goes.

Every day is different.

A point of pain

You get some great, amazingly fantastic news. What’s the first thing you do?

This prompt [above] hits a nerve in our situation. Good news would be something to share with your spouse. As would, of course, fantastic news and alas bad. The first person I would turn to would be Burt.

In his fluctuating state of confusion, sharing might be limited. Of course, problems and bad news are out of the frame. Fantastic news can only get so far.

Naturally, being a contrarian with a contrarian disease, my Burt is apt to surprise.

I got a call from his younger daughter with whom he is pretty much estranged.

When Burt spoke with her, the deceptive aspect of  his memory made for a strained conversation between them.

Nonetheless, he welcomed the relationship (for me), although he remained skeptical about his relationship with her. “I’m happy for you” was his blessing to me.

Promptly

Do you need a break? From what?

In my context, the context of this blog, the answer is sadly obvious.

Do I need a break from caregiving? Yes, I am sure I do. I am sure any of us in these circumstances does.

What’s more, I am sure we all wish we didn’t.

Wouldn’t it be peachy if our pwd* didn’t need care?

Didn’t have dementia? Was well?

Right now, my love is lying on his bed telling me that there are cars going by in our bedroom. (No, we don’t face the street; our view is rooftops.)

He says several people were looking for cabs, and he helped them out.

He’s experiencing anxiety over an appointment with his PT later today. He sees me nearly falling down even though I am seated near him.

*pwd= person with dementia

His quote du jour, one of many, “My mother is dead, so I had to get a new one.” This by way of explaining why he refers to me as his mother.

He still understands that I am his wife, so this dual role is an extra challenge he’s giving me.

His confusion saddens me. Of course it does, even when I try to keep an open mind looking for kernels of humor.

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.

Confused

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.

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.

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