The little uptick

… comes with a little anxiety and agitation.

His little puff of steam uphill comes with a return to other issues.

Burt is a bit more anxious in his delusions; his fears are about someone hurting him. He’s more worried, whereas he seemed so contented during the big decline.

I think because his world has expanded a bit to include both the hallucinatory and we, the real people around him, he has more to deal with.

When most of his dialog was aimed at imaginary friends, we  could respond with perfunctory comments.

His current greater focus asks us to be more attentive, too. When we’re not giving him the full attention he wants and needs, he gets anxious and agitated.

His anxiety is most easily quelled by our engaging more with him.  It’s hard to tell where and to whom his questions are directed. That’s a fine line because I am always loathe to interrupt his conversations with his others.

His ramblings reveal a more aggressive turn, too. I think that agitation always leads to anger and aggression.

Who knows? Lots of guesswork. Oh, and yes, he’s still confining himself to his bed. Except in his imaginings.

Burt’s ups

There was a decline, and now he is showing a little pick up. A little one but marked by chattiness and some connection.

He’s more engaged this week. He appears to know me a little better than he did. And lord, does he love to talk.

He is still chatting with his make- believe friends, but he’s also been talking with us.

He’s not making a great deal of sense, but he seems more present.

My friend D suggested it had something to do with our colder weather and longer days. Maybe?

It’s a notably positive change, and you know what, hey, I’ll take it.

January 28th: it’s not Alzheimer’s

Lewy Body Dementia Day

Lewy Body International, founded in 2022, is comprised of  organizations from 11 countries.

January 28th is designated as Lewy Body Dementia Day by this group of organizations dedicated to working with people affected by this disease.

They form a cooperative alliance to share knowledge to build awareness, to offer resources, and to increase understanding that may improve outcomes and treatments for all people affected by LBD.

I started this blog in October of 2023 in honor of Lewy Body Awareness Month.

Now, I want to acknowledge the 2nd annual World Lewy Body Dementia Day next week and invite you to learn more about LBD.

The day, January 28th, was chosen because it is neurologist Frederick Lewy’s birthday.

Dr. Lewy’s discovery of misfolded alpha-synucleins in Parkinson’s patients led to uncovering the second most prevalent dementia. Since 1912 to today, there have been few treatments and no cure for this inexorable disease.

Participate in World Lewy Body Dementia Day by contributing to one of the associations working to assist those with LBD and their families.

Locally, that would be Lewy Body Dementia Resources Center or Lewy Body Dementia Association.

Or just click on their websites to learn more about living with this peculiar and damaging dementia.

Why do I

It’s my private pain, I avow. It feels a little unseemly to be airing it so publicly.

I’ve admitted to oversharing. This  daily note-taking and sending it out to all of you – isn’t that major information-overload?

It has also felt like I was invading Burt’s privacy. He’s not sharing the intimate details of his illness. I am.

Do I write for myself and leave the pages open so you can get a peek? Am I talking in order to be helpful to others going through this? Am I chronicling to relieve my pain? To elicit sympathy or advice or sympathy and advice?

It is all those things. I am a writer. This private pain is my public subject.

Continue reading “Why do I”

«Do I love you?«

I’ve just said, “I love you” in  response to his conversation. I did not understand what he said. “I love you” is a standard retort.

It reassures me/him. The minute after I affirm my love for him, I doubt myself. Why do I run from the room, leave his bedside mid such conversations? I state the love and leave. Do I really if I am pulled away?

His childish logic and ill-formed reasoning is heartbreaking.

Every interaction tugs at my heart; I exit the room in the mode of self-protection. I don’t want to feel pity for a man so diminished by his disease.

It’s clear that it’s more than pity that drives me to proclaim my devotion.

I do feel the sorrow of it. I also really truly deeply feel the love.

My coda is from Moonstruck in approximated text

«Do you love him, Loretta?« «Awful, mom.« «Oh that’s too bad. When you love them, they can break your heart.«

The balance sheet

What’s become easier in Burt’s  last decline?

  • We feed him.
  • No more bowls of food flung across the room.
  • No spills, either.
  • It’s generally tidier, I guess I would say.
  • I value the sense of peace and intimacy I get from serving him this way.
  • All his food needs to be pureed.
  • This can be fun and sometimes even feels creative to me.
  • He’s not getting up to walk.
  • No fear of his falling.
  • Less physical effort in getting  him upright out of his chair.
  • Likewise, off of his bed
  • He’s confused, disoriented and hallucinating more.
  • There’s less drama over my absences.
  • My time away is really a respite;
  • I’m not interrupted while at the gym or during lunch;
  • He doesn’t call in the middle of my support groups.
  • Despite the confusion, he seems content.
  • I know he’s well taken care of by his aides.
  • He chats with them as well as with the hallucinatory  friends he gathers.
  • His anxiety is generally reduced. He seems less prone to agitation.

What’s harder?

  • We feed him.
  • Feeding is physical work.
  • My shoulder as well as my back feel the effort.
  • I worry that he’s not getting enough nutrition. To be fair, I always worried about his calorie intake and the variety of his foods.
  • All his food needs to be pureed.
  • This takes time and organization.
  • He doesn’t get out of bed.
  • He’s lost muscle mass in his calves. I mean, that’s visible to the naked eye.
  • Changing and cleaning him in bed is physically harder.
  • He risks [and has] bed sores which have to be monitored. More vigilance and worry.
  • The bed sores and his skin in general have to be treated.
  • He needs to be turned every few hours.
  • For me, right now, this is not possible.
  • We are doing our best. I am doing my best. It’s not good enough.
  • He’s confused and hallucinating.
  • It makes me sad that he no longer notices that I am gone or asks when I’m coming back. It’s nice to be missed.
  • I don’t miss the drama, just the emotion around being needed.
  • He doesn’t call to interrupt my time away from him.
  • He seems content, chatting with an imaginary crew.
  • Of course, his being content is a good thing! But he’s also absent.
  • I miss him. I miss my husband. I miss Burt.

A treat?

Standing in an aisle at Duane Reade, I realize that I won’t be bringing Burt a chocolate treat. He can’t eat chocolates the way he once could.

I’ve been breaking a little piece into littler pieces for him, but he’s not getting the kick out of it anymore.

Now, I add dark chocolate syrup to his ice cream for the flavor or give him a protein rich chocolate drink from Bolthouse Farms.

I hadn’t thought about it until I stood facing the Valentine display on this cold, cold day.

It’s heavy

In my encounters with friends and acquaintances, I feel heavy. Physically, of course, I am.

It is the sorrow I carry in my heart that makes me feel weightier.

This, I think, at each conversation is not the gravitas I hoped to achieve.

I have toned down the impulse to spill it all. I no longer overshare on cue.

I talk on topics more neutral than my sadness, like religion or politics.

Even addiction or sobriety seem like safer subjects than the details of my emotions. Of course, there is no news. Burt’s decline is just what it is. No real change once I acknowledge it.

My feelings on that front don’t change either. I am sad, and it’s hard to see him so lost. Lost to me; lost to himself. 

I still know who he is even when he seems uncertain.

I can still laugh. I can still feel the tenderness of love.

That lightens me. That’s not so heavy.

Am I repeating myself

When our podiatrist visited, her shock over the change in Burt over two months became my shock.

There is no escaping the fact that a progressive neurodegenerative disease degenerates. It’s the only progress it knows.

Those of us who are living with it are serially surprised. It often or sometimes takes other’s eyes to show us that which we know.

I am so glad that our podiatrist left me with her positive remark. She said «you can see Burt’s still in there.«

I had my shock and my reminder to keep reaching for him. To keep connecting to the man I love. He’s in there.

Design a site like this with WordPress.com
Get started