Dementia Transformation


Butterfly

I used to struggle to understand if those with dementia are still the “same person” or whether they are “gone” in a “premature death”. Dementia is sometimes described as “the slow death”.

Today I view it quite differently. Let me explain.

I believe we all change day by day – not just because our experiences mould us, but because we can and do change. For example, I have had periods of Beethoven, where I play nothing but Beethoven. During these periods, it is often impossible to enjoy another composer or even play in a different style. At other times, I play nothing but Chopin, or nothing but Bach. Yet at other times, I can move from one style to another easily with no problems.

In books too, my preferences change from time to time. I move from sci-fi to murder mysteries to action thrillers to mindfulness theory and practice. Of course, if we think about fashion and clothes, everybody (I hope) moves with the times. Yet despite all these changes of seasons and tastes, I am still me in essence. There might be periods of calm and periods of turmoil and sometimes I cope better than other times. But I am still me.

And so I think Mom is still Mom, but different. The essence of her is still there, although she behaves differently, thinks differently, and perhaps has different preferences.

Because of dementia, she may have a harder time understanding and reacting to what is going on around her. Because of dementia and memory loss and not always knowing where she is, she may feel more anxious. Because of dementia and losing the right words, she may be unable to express herself and her concerns and become more distressed as a result. The end result is that she is changed, partly because of the changes everyone goes through as time passes, but also because of the changes forced upon her by dementia.

But a person with dementia is still the same person in essence. Personally, I cannot say Mom is gone or that dementia has taken her – she is still very much here. Just different.

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27 thoughts on “Dementia Transformation”

  1. So very true, every day we all change a little bit. I always said Mom was still in there somewhere, she was just hidden by Alzheimer’s. Every once in awhile the Mom I always knew would pop out like when she would have her favorite sweet – chocolate.

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  2. This is so true! I wrote a book about it back in 2001 called We’ll Be Married in Fremantle. Little did I know then that Ants would get dementia. I love this post because of how you accept what is.

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  3. Our cells regenerate over time, at different rates. How many of your cells are the same ones you had 10 years ago, or 20, or when you were born? We may not have much in common, physically, with the infant we once were, yet we are still the “same” person. What is that concept about, anyway? We are always changing. We create and attach concepts of consistency over time in order to develop commitment, loyalty, appreciation, affection. In other words, your mom is not “different” or “the same”; you have developed a commitment to her, whatever she is, and that is valuable to both of you, for lots of reasons.

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    1. Interesting thoughts. Just as we are connected by a string (of continuous changes) to our past selves, so we are connected to others in our lives. And the relationship evolves as well.

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  4. My dad died in July of 2011 of Alzheimer’s complications.
    July, 2012–I wrote a post in memory of him, called “Love is Stronger than Alzheimer’s.”
    The last time that I saw my dad, he didn’t remember me. But we spent a day together, walked together arm in arm. His blue eyes sparkled as they have always done. I kissed him on the cheek that day and whispered in his ear, “Don’t worry. God remembers you.”
    That was the last time that I saw him.
    In truth…..when we leave this world, we all leave everything behind.

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  5. May I suggest my book titles Mosaic Moon: Caregiving through poetry, and Breaking the Silence: A Caregiver’s Voice. I wrote a poem called Emily Dickinson, I’m Somebody. My mother’s voice says, “I’m somebody…I’m still here…oh, I am still here…etc. This poem appears in both books. Yes, they are still here even if Alzheimer’s has stolen what we, in our so-called normal state, think these are what makes a person present. They don’t need language or bodily functions to remain human.

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  6. For me, I believe that she wasn’t mom. My mom had terrible violence issues. I still have fading marks to show for it. She hurt my sister by saying the meanest things ever. My sister went through a terrible phase of depression for several years after that. That cannot be my mother. You see, dementia is so differently experienced by everyone, each case is unique almost. I think as caregivers we have to make sense of our experiences in a way that makes us cope better. I worked for 1 year as a dementia care consultant with the Alzheimer’s Association, and that is my big take away after talking to 100s of caregivers and sometimes people with dementia too. So subjective. BUT, I am so glad you are experiencing it this way. Love and prayers.

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    1. You’re right. Everyone is different to begin with and Alzheimer’s affects people differently. I am so sorry to hear about your experience with your mother. Yes, I feel lucky now, but sometimes fear this is the calm before the storm. In any case, no use worrying about it, but just to appreciate the moments now.
      Thank you for reading and following my blog.

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