this is our life

Neglect

Sometimes, it feels like I am so torn up over the national outrage as it swirls around that I am not paying enough attention to my guy.

Before you voice any alarm, know that I dearly love him. I will always tend to his needs. Love feeds and fuels me, so I am happy to report his increased engagement on that front.

Today, he asked his aide where his wifey was just after I stepped out of the room. I went and sat with him for a bit longer.

Better yet was a touching exchange we shared yesterday.

Feeling like I had ignored Burt while breakfasting and prepping his, I said You put up with a lot from me, and I appreciate that. Burt’s response brings tears. «I appreciate you,« he said.

My heart is full.

Lonely

Caregiving is lonely. I’m sure I have lamented this in numerous posts.

Burt seems like he’s pretty lonely, too. If you have a pwd, your person might also be feeling lonely.

I need to be a bit more hands-on empathetic. It’s hard to stick with him when he’s not making sense. He’s lonely even with the busy, crowded imagination he brings to the room.

Much of the time, he doesn’t rely on the real people around him for company. He turns to his hallucinations for conversation.

He has a delusion that I’m not here and a hallucination to replace me with Buddy or Betty.

For some reason, I am not upset that he doesn’t acknowledge me. It would make me happy if he knew just how loved he is. I want him to know that he is not alone.

Short bursts of energy

There’s a support group that «puts the I in caregiver« which I value for its honesty. It’s akin to the one urging us «to be selfish.«

I take about 5 hours for myself each day.

It’s a necessary indulgence.

Let me try to explain what my time away does to benefit me.

When I get to the gym, I have a chance to enjoy a physical outlet. The endorphins are helpful, I am told.

I meet friendly faces and chitchat about easy things.

If I go to a museum or grab lunch with friends, I can look to neutral subjects to distract.

From a wide range of these palate-cleansing activities, I come home calmer. And kinder.

Each day’s respite inspires my patience and clears my soul. It’s restorative.

It’s restorative in ways that loving my beloved can not be. That love is tinged with sorrow about his state; wishing he were otherwise accompanies the gratitude I have for the pleasure of caring for him.

It is a pleasure and a chore. The sorrow is tinged with love.

I take an art group or share in a support group. I complete tasks that need doing, too, and run errands. Or just go on a pleasant outing for myself. Some days have focus. Others give over to leisure.

I come back from my walk, ready to sit and listen with my fullest attention to stories whose words make no sense.

I have gained so much patience from time for relaxing activities.

I immerse myself in them. I crave and absorb their variety.

Then I come back to where I fully belong.

Alternate world

If you are living with a person with dementia and particularly this dementia, you know that your person spends much of his day in an alternate reality.

There are delusions and theories that give credence to and explain them.

Hallucinations are common occupants in the world of your loved one’s with LBD.

Burt’s hallucinatory companions may sometimes annoy him but are mostly harmless.

If your person doesn’t feel that his imaginings are threatening, just play along.

When, or rather if their presence causes worry or fear, banish them.

You are encouraged by all the dementia experts to use figures of authority in doing so.

“Oh no, honey, he won’t bother us anymore. Sheriff Doland chased him out of town.”

The habit of mind that has your beloved repeating questions will crop up here, too. His anxiety over that guy may need further assuaging.

Tell him again, but don’t let on that you told him before.

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.

«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.