this is our life

Workshop thoughts

He’s looking good. The invisible burden.

He’s doing well, they’ll say. No response to that makes it any easier.

Yes, it’s a progressive illness, and we’re doing what we can.

He has good days. I’m glad you got him on a better day.

Your visit certainly perked him up.

In truth, I have rarely had to deal with that.

Burt’s pretty transparent, as it were, about his progression. I see more of the decline than others who aren’t with him all the time, but his confusion is evident.

He’s not invisible; his disease is in the open. He can be very clear about his demands, his needs, his wants. That can fool even me into believing he’s stronger than he really is.

Early on, his moments of clarity were a welcome opportunity to deny the realities of his illness.

Denial is behind me now, and I face the truth of his decline minute to minute.

I need to say “he’s doing well” more often so I can appreciate what of him I still have.

A poem of our time

I say, "Yes. We are together
34 years." I know to you it
Feels like we met yesterday. 
Yesterday. A new experience
Fresh. Who are you? Which
Wife? Where did we meet? 
Questions. Wide-eyed like
You never asked them, or I 
Never answered. We met.
I am impatient, but should
Not be. It really is the first
Time you've asked where 
When. Who. It feels like we
Just met. Like I just walked
Into your life. Someone new.
Yes. We're together 34 years.

Paying the piper

The cost of care is astoundingly high. My time has come to get some help with those costs. Fingers crossed.

It would be unrealistic for me to try to meet Burt’s needs without the aid of professional aides.

I know Burt’s needs will only increase. It’s a scary proposition.

Medicaid is an option for some of us. I suggest you get decent legal assistance when looking as this becomes a part of your reality.

Financial assistance is one of the needs we have when caregiving. Support groups contribute hugely to my social safety net.

I could not meet any of the daily challenges without a veritable and often virtual village.

Since support has gone to Zoom and message boards, it’s more helpful than ever. I belong to many groups (most virtual), all of them very helpful.

Among those groups offering assistance to the family caregiver are CaringKind.

It’s their virtual walk that Burt and I will take on October 19th.

The link is for a fundraising page for sponsorship of our passive walking: https://give.caringkindnyc.org/fundraiser/5610000

To give you more opportunities to support agencies dedicated to dementia care, here’s the sign up for the Lewy Body Dementia Association walk. It takes place on September 29th at 10am in Warwick Township PA [register to walk in person]. Register to walk from home.

You are invited

This is a Save-the-Date

Burt turns 85 this November.

He had a downturn. Then, the Lewy roller coaster started back up the hill.

Sure, there’s a new baseline that has him looking less like the coherent engaged Burton of 2023, but….

Today, he showed gratitude along with his affection. He’s interested in people and activities.

We have a possible chance to celebrate his 85th. I am mulling it still. You save the date. I will keep you posted.

Saturday, November 9th.

A party will involve short visits from our friends (you). We’ll be serving soda and cakes, I think.

I’m looking forward to it if we can!

Sidebar

On aging

In my early 70s, not so very long ago, I was going on [pretty] wild Spin Rides at a gym on W49th.

It’s an experience I can’t imagine having now, although I can recall it vividly.

The Spin room had a screen on which were projected travel destinations. Some were real and hilly. Some were fantastical (and hilly).

In my 50s, I felt vibrant. I was physically capable. We, Burt, and I, would walk to many of the many places we went. Burt was a goer.

For many years, we would routinely walk the 59th Street Bridge to catch the 7 to Shea. It was an easy walk for us. Then.

The changes were slow but steady. Some routines became more difficult. Some walks turned into strolls and then into ambles.

Burt walks with his walker now. Yesterday, I was so proud of the distance he accomplished. He moved with alacrity relative to his condition.

On the side

Things happen as we get engrossed and distracted by caregiving.

I managed to misplace (a polite way to say lose) our marriage certificate.

I feel a lot better about it since Googling that replacement can be done easily and online.

Looking for the missing item also gave me an opportunity to sort through documents.

The rearrangement may result in panic down the road when I wonder where I put everything.

I do know for and at this moment what we have and where it be.

The urgency in the search was necessitated by Burt’s wanting proof.

Burt isn’t sure who I am when I go in and out of the room. Who’s this he asks. My honest answer has him adding up Tamaras as I reenter.

Yesterday, he said, laughing as I repeated my name, “There are 60 of you.”

Why do we need documentation? I always reiterate that I am his wife.

He doesn’t know me. He requests proof. Naturally, he wants a wedding certificate and a doctor’s note.

Where our lives diverge

It’s another one of those losses. We once went to movies, watched TV series, and enjoyed outings together.

Burt would have enjoyed The Marvelous Mrs Maisel with me. Now I’m seeing it as respite when he’s asleep. He can no longer follow any plot. He’s way past the point where he would get the humor.

It’s sad. Which is not to say that I am thoroughly engrossed.

My repertoire recently expanded to include not just Grace and Frankie but also Schitt’s Creek. Mrs Maisel remains top draw for my limited but rapt attention.

Diversions are a necessity. Stay diverted.

You know the phrase

I love him to pieces. You 
Know that feeling. You've
Said it before. Now, I also
Say, "I love him in pieces."
As he falls away, stumbles
In his mind, loses his way.
Reasoning is gone, his and
Mine; I, too, am less rational
I, too, am lost or losing my
Path forward. I, too, am so
Emotional that I can cry in 
An instant, flare up in anger
At what I can’t fix or change.
Is there a purpose, of course,
I see it in caring for him, us,
Holding on so he doesn’t slip
Away. I love him to pieces.

Psychosis

Cognitive function, executive function, bradyfrenia, autonomic system, bradykinesia. There are so many impairments as Lewy bodies take over, and our loved one declines.

Psychoses. There’s a scary word. And those are the hardest aspects of LBD to manage.

I watch out for falls. Hold onto him for dear life sometimes to maneuver him onto a seat he looks like he’s going to miss.

What can I do when he’s in the thrust of a delusion?

Delusions will not be denied.

In the midst of these, I hold on tight too.

Stay calm

My role as a caregiver to a person with [Lewy Body] dementia demands I get acquainted with psychosis. A calm and contained demeanor is preferred to one in which I freak out.

In a tour of an exhibit in which art and psychiatry crossed paths, it became clear to me that the psychotic makes me very uncomfortable.

Auguste Forestier, patient and sculptor.

Francesc Tosquelles, a Spanish psychiatrist, was able to channel the creativity of his patients.

Just a slight exposure (and no live patients with whom to deal), yet I felt that frisson of “is this right for me.” In fairness to myself, I cope better with Burt’s actual behaviors and issues.

Nonetheless, the awareness was a good eye-opener.

In a serendipitous moment, I was able to benefit from a webinar on Managing Lewy right after my visit to the American Folk Art Museum.

Julia Wood of LBDA laid out the more difficult aspects, the hallucinations, the delusions, the illusions.

These are the psychoses that plague us (as caregivers) and our pwd loved ones on our journey.

Insight Memory Care Centet is support based in Virginia, which provides programming on dementia. They hosted this informative guidance yesterday afternoon. Check their website to participate in future events.

Also, look to the Lewy Body Dementia Association for information. They offer print brochures outlining the unique signs and symptoms of LBD and lots of other forms of assistance.