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My Plea as One in Early Stage Dementia

I share my perspective on how to help dementia victims, as one who is in early stages of his own dementia

Photo of Ssev Dor
18 14

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I had a lucrative law practice, before experiencing two brain aneurysms, which led to a stroke and the early onset of dementia.  As an early stage dementia victim, I share my perspectives on how my caretakers have helped me enjoy life, despite slowly "losing my brain."  

What is a provocation or insight that might inspire others during this challenge?

Most caregivers try to treat their "demented" loved ones as little children. I am fine with that; but I also believe that the best caregivers are those who themselves become as little children. Don't be the adult in my life; be my companion and a child along with me. Too many caretakers come across as "parents" to a child, rather than as a little child themselves. Have fun with me.

Tell us about your work experience:

I was a successful lawyer and officer of a large financial services company, before my stroke.

18 comments

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Photo of Jim Holt

Thank you Ssev. I echo your thoughts, having discovered more fun in my mother who suffers from dementia simply by being present in the moment with her and by responding to her, whether that be impromptu dancing in the kitchen or simply witnessing the small wonders in nature together, as I would with my young niece and nephew. I've also learned to smile when she uses the wrong words. These approaches have made my times with her far more enjoyable and have increased in my resilience and patience during trickier moments.

Photo of Ssev Dor

Good for you, Jim; that's excellent!

Photo of Ssev Dor

Thank you, Mariah!

Photo of Mariah Burton Nelson

I'm with Jill Petersen That's an incredible insight. Many caregivers are so busy trying to take care of everything (we are "caregivers," after all!) that it does not occur to us to play with, or become childlike with, our parents/elders/loved ones.

And how interesting that you are happier now, and more carefree, than when you were practicing law. You gave me lots to think about. Thank you, and all the best to you and your loved ones as this journey continues.

Photo of Jill Petersen

Wow, that's incredible. Thank you for sharing. If you don't mind me asking, I have some questions for you that would help us understand what it's like to have dementia.

Photo of Ssev Dor

Sure, Jill. I would be pleased to answer any questions you may have, but I assume that, in some ways, dementia is unique to each person experiencing it. :)

Photo of Jill Petersen

At what point did you realize you were suffering from dementia?
How does it affect you in your daily life?
Since you are in early stages, are you taking any actions for when/if things may get worse?

Photo of Ssev Dor

At what point did you realize you were suffering from dementia? About four months ago, disorientation began. I found myself lost, as I would walk to coffee in the morning from my apartment to the coffee shop about a half mile from home.

How does it affect you in your daily life? I cannot remember what I did a few moments ago, but I still have long-term memory and remember people's faces, but not their names. I must use a pill box that sets up my entire week of pills. I am happier than when I practiced law; and I don't have a care in the world.

Since you are in early stages, are you taking any actions for when/if things may get worse? We've made my sister my Power of Attorney, and she is in charge of my finances now and my daily activity.

Photo of Jill Petersen

Thank you for responding! Your insight is valuable.

I'm glad you are happier now than when you practiced law.

Photo of Ssev Dor

:)

Photo of Terry

I get it! I had cared for my aunt whom had dementia...the depression and feeling out of control was her worst enemy. After she crashed her car the last time I became her driver and we just had fun, "driving miss crazy" and even when she had to go into the nursing home I would visit almost daily and even break her out for drinks at the local country club...who says dementia shouldn't be fun?

Photo of Ssev Dor

Awesome response!

Photo of Susan

"Who says dementia shouldn't be fun?"

Exactly. Get rid of the negative narrative and stigma!

Photo of Ssev Dor

SMILE

Photo of Peggy Hartzell

So true. That had been my experience and insight in taking care of my mother. Lighten up! Especially since the emotions are still perceived on another level and picked up by those with dementia. If some one is annoyed or too serious, the person picks up on that and will respond accordingly. Best to be creative and playful as we get through the day!

Photo of Ssev Dor

: )

Photo of Molly Oberholtzer

Thanks for sharing! my grandmother and I have the most fun when we are playful and silly, not trying to be our ideal socially acceptable selves. Unfortunately my mother, her daughter and main caregiver, can't seem to adapt to this, and has expressed her mental hurdle in doing so. She is still remembering the woman my grandmother used to be, and acting accordingly. Your story is a really valuable insight on something often missed, something that caregivers need to consider when prioritizing how they give care. It is easy to get caught up in busy-work care tasks--comparatively empty gestures--that don't get to the real "heart" of caregiving as a relative.

Photo of Ssev Dor

Thanks!!