There are days when I can feel my capacity narrowing.

Not always in an obvious way. Sometimes I am still doing things. I am still answering people, reading, writing, participating in conversations, even accomplishing things I had intended to do.

But underneath it all, something is becoming harder.

The past few days have been like that.

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Tru here.

My perception has been particularly WONKY. Not simply vision, but that complicated combination of sensory perception and body placement where I sometimes can’t quite keep track of where I am in relation to the screen I’m looking at, or in relation to the walls around me, or the dirt outside. Been using wheelchair quite a bit today, when i feel risk of falling on the Service Dog.

My neck tremors have been worse, too, which makes following words on a screen even more difficult.

Eventually, I reached the end of my patience with myself.

By last night I was muttering and swearing under my breath like a sailor. Or, speaking as the former wife of someone who served in a Ranger Battalion, perhaps … like a Ranger. 😂

It wasn’t particularly graceful.

But it was also information.

I had reached the edge of my capacity.

And sometimes I think one of the hardest parts of living with changing cognitive ability is learning to recognize that edge before we are standing on it.

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Today I spent several hours doing something that might not look particularly demanding from the outside: participating in online dementia communities.

I read people’s questions.

I answered some.

I tried to share things I have learned from living with dementia for many years.

I encouraged people.

I reconnected with Elmarie in South Africa during a Dementia Mentors chat after several years of not seeing her. We talked about her art and a portrait she had spent an enormous amount of time creating. The widow appreciated the portrait tremendously — but the rest of the family eventually asked that it be removed from public viewing.

There is a complicated kind of grief in that.

The work was deeply appreciated.

And yet it still had to disappear.

I’m glad I was able to encourage her a little, and we decided to stay connected through email rather than allowing years to pass between conversations again.

That felt good.

And then I learned that Mark Roberts had died.

That took something out of me, too.

I don’t think I always recognize how much energy is contained in loss within the dementia community.

Dementia peer community has an extra Loss-component.

These aren’t simply people I know because we share an interest or belong to the same organization. These are people who understand something about the landscape I live in because they are living in it, too.

We meet each other in places most people never have reason to enter.

We share the strange symptoms.

The adaptations.

The fear.

The humor.

The absurdity.

The things that don’t make sense to people who aren’t living here.

And then, sometimes, someone disappears.

Not because they got busy.

Not because they changed jobs.

Not because they moved to another town.

Because they died.

So every new friendship in dementia community carries something ordinary friendships don’t necessarily carry:

the possibility of loss is already part of the relationship.

And when someone dies, it can stir up more than that one person’s death.

It reminds me of all the people who have been part of this strange journey.

Some I knew well.

Some I knew only through occasional conversations.

Some I haven’t seen in years.

But each one was part of the larger community I have lived within for so long.

So perhaps it shouldn’t surprise me that learning about Mark’s death affected my energy today.

Grief doesn’t always announce itself as I am grieving.

Sometimes it simply looks like:

I can’t do one more thing.

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I had hoped to accomplish more socially today.

There are still two days’ worth of comments waiting on my newest painting.

There are Facebook conversations I haven’t answered.

There is LinkedIn, which has been waiting for me for about six weeks because LinkedIn is somehow really, really difficult for my brain, even though I can’t quite put my finger on why.

And there are all sorts of other things I could point to as unfinished.

But perhaps unfinished is the wrong word.

Maybe they are simply waiting.

Tomorrow Guy and I will be on the road for about six hours for my biopsy results, so my usual Monday/Wednesday/Friday rhythm won’t happen.

And that is okay.

The comments on my painting will still be there next week.

The people who left them are not keeping score.

The unanswered messages are not evidence that I don’t care.

Sometimes the brain’s window closes.

Sometimes the body becomes difficult to inhabit.

Sometimes perception becomes unreliable.

Sometimes grief quietly takes a seat beside everything else.

And sometimes the most important thing I can do is stop demanding that I function as though none of those things are happening.

Being gentle with myself isn’t always easy.

Especially when I am the person who knows exactly what I wanted to accomplish and exactly how much I didn’t accomplish.

But perhaps gentleness doesn’t mean feeling peaceful about it.

Perhaps sometimes gentleness is simply saying:

Enough.

The rest can wait.

You are allowed to be tired.

You are allowed to have reached your edge.

You haven’t failed.

Your window will open again.

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And maybe that’s why this particular painting feels appropriate tonight.

It has a lot going on.

Layers.

Drips.

Flowers.

Tangles.

Movement.

Fragile things held against darker things.

And somehow, despite all of it, there is still a little space to breathe.

Maybe that’s enough for today. ❤️

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Attached Picture:

This is a compilation from three of my paintings plus a photo by my grandson. THANK you Tyler. ❤

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Contact Options:

Other contact options are FaceBook and “X” (aka Twitter), both under “Truthful Kindness”. On Reddit, i am at “TruthfulKindness” in groups “r/dementia”, “r/lewybodydementia”, and “r/alzheimers”. i dropped my LinkedIn membership quite a few years ago. If requesting “friend” status for any form of Social media, please send a private message explaining that you are a reader of my blog. …

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* Admin Notes — This entry began 2026Aug18 … and is by Truthful Loving Kindness (my full legal name) for https://truthfulkindness.com/. For comments or questions, please use that website. The subscription box is now located at the bottom of each blog entry. i also write and publish under the shorter name Truthful Kindness. My current formal diagnosis remains at the stage of Mild Cognitive Impairment, although my Primary Care Physician and several other medical professionals consider it some form of dementia; my PCP records currently state “Dementia without behavioral disturbance, unspecified dementia type.” In recent years, my PCP, my husband/care-partner, and I have jointly decided to discontinue specialist consultations, as the distance and emotional strain of repeated evaluations are not worth the cost to my well-being. My symptoms most closely resemble Lewy Body and vascular dementia patterns; however, SPECT and PET imaging show the most significant brain changes in the temporal lobes, creating overlap with the logopenic variant of Primary Progressive Aphasia (PPA), a subtype within the frontotemporal dementia spectrum. Nothing in this blog is meant as medical, legal, or service dog advice; what I share here comes from lived experience—an attempt to design around decline and make daily life more workable—so please use your own judgment and consult professionals who understand your specific situation. Text Copyright © Truthful L. Kindness, 20260823. You can learn more about me under the “About Me” tab (note: that page is due for updating). Comments are welcome—please filter them through truthful loving kindness toward all concerned. As of 2026, I use ChatGPT as an editor, which improves readability and reduces the time I spend in the writing process. I do not mind re-posting of my work; however, if you do re-post, you must clearly indicate that the writing is not your own, prominently identify my authorship as Truthful Kindness, and include a clear link to my website so that questions and comments can be directed to me personally: at http://www.truthfulkindness.com.

*** categ: journal, Lewy Symptoms; *** tags: belonging, cognitive change, community, connection, dementia, dementia friendship, energy, fatigue, grief, loss, peer support, Persons Living with Dementia; *** S&S Categ: Fatigue, Grief/Loss, Social interaction .