Poem about caring for someone with dementia (Esquina Poetica)

This is a beautiful poem about caring for and loving someone with dementia. I saw it on the “Esquina Poetica” (Poet’s Corner) Facebook page.

Excerpt:

[It] is not our job to hold anyone accountable to the people they used to be.
It is our job to travel with them between each version and to honor what emerges along the way.

Check out the full poem below.

Robin

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Poet’s Corner / Esquina Poetica
July 9, 2022

Posted by:
Heidi Priebe
Maxine Noel, Soulmates

To love someone long-term is to attend a thousand funerals of the people they used to be.

The people they’re too exhausted to be any longer.

The people they don’t recognize inside themselves anymore.

The people they grew out of, the people they never ended up growing into.

We so badly want the people we love to get their spark back when it burns out; to become speedily found when they are lost.

But it is not our job to hold anyone accountable to the people they used to be.

It is our job to travel with them between each version and to honor what emerges along the way.

Sometimes it will be an even more luminescent flame.

Sometimes it will be a flicker that disappears and temporarily floods the room with a perfect and necessary darkness.

“I got tired” (poem by Parkinson’s caregiver)

At one of our recent local Lewy body dementia caregiver support group meetings, a caregiver said that she felt as though she had “run out of gas.” A few days later, I ran across this story/poem on a Facebook group for Parkinson’s caregivers.

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Lorie R. (from Caregivers’ of Parkinson’s Disease Support Group on Facebook)

Somewhere along the way I got tired.
I got tired of the noise- the constant grunting, groaning and sex sounding noises that are not that.
I got tired of getting something for him and sitting down and then being asked for something else.
I got tired of having to leave every event early.
Never being on time.
I gave up on going to church because he cannot manage to get ready on time no matter how early we get up or how much I helped.
I saw friends visits lessen or stop altogether.
Dealt with sexual addiction, pornography, accusations that were not true.
Fled the house and slept at my job because of accusations.
I’ve been injured trying to pick him up five minutes after I had just gotten him up.
We do not have conversation because I can’t understand him anymore and he gets mad at me for his speech.
Learned to take my supper alone because he won’t come in the house because he is perseverates on whatever he is trying to do that isn’t going good.
Been through many arguements about things that absolutely make no sense.
I used to be positive and supportive.
I want to be but I am just tired
I lost my compassion
I have gotten weary of doing good
I have lost most of him and a good chunk of me.
I still love him but he makes it truly hard to sometimes.
I still believe And pray to God that he will heal him
But.
I am simply tired.

“Their Dementia Diagnosis Doesn’t Mean They’re Keeping Silent” (WSJ)

This terrific article from the Wall Street Journal in the fall of 2021 notes: 

“As the number of people with dementia grows, more of them are speaking out to challenge assumptions about what they can and can’t do.  A group of advocates, many in the earlier stages of this condition, say that people around them often struggle with understanding the full range of symptoms. …  Life expectancy for those with early-onset dementia varies. One 2019 study showed a mean survival time of 17 years after symptoms start and 10 years after a diagnosis.” 

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“Learning Spanish” – a Lewy body dementia caregiver’s story

This is a beautiful story written by Lyn Preuit, whose wife Wendy had Lewy body dementia (confirmed through brain donation).  Lyn is a long-time member of our local support group.  The story is captures part of Lyn’s caregiving journey and some of Wendy’s LBD symptoms, such as dementia, difficulty concentrating and multi-tasking, speech problems, and swallowing issues.

Robin

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