Guest Post: My mom has early-onset dementia – 5 things I learned


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Author Bio: Audrey Throne is a mother of a 2-year old and a professional blogger by choice. Throne is passionate about health, technology and management and blogs frequently on these topics.
Find her on Twitter: @audrey_throne.

When I was in my early 20s, my life was almost perfect – I had good health, a myriad of career and employment opportunities, a great family and a wonderful network of friends. Things were sailing smooth for me; although there were few bumps along the way, but nothing too big or grave that would make me worried or upset. 

However, one fine day in 2011, without any prior warning whatsoever, my mother began displaying episodes of erratic behavior which involved frequent odd statements, absent-minded actions and dangerous mistakes. After several trips to the neurologist and a brain test or two, a few years later, she was diagnosed with early onset dementia. Once I was able to digest that reality, I decided to move back home to be with my mother and look after her. 

I am often asked by people if my mom remembers me. Truth be told, dementia is so much more than just being forgetful and I think putting dementia under the umbrella of ‘forgetting’ is more of an oversimplification. 

The last 5 years have taught me great many things while being with my mother who is now living with dementia. Here are a few things which I would like to shed light on: 

Laughter is the best medicine
As clichéd as it may sound, laughter is actually effective. Throughout my mother’s heartbreaking time with dementia, I realized that her ability to laugh and find humor in things still remained intact. And I couldn’t be more fortunate and grateful for that. It doesn’t matter what or who makes us laugh and half the times I don’t even understand what she’s laughing at but it’s so contagious that I end up laughing with her too. 

Every time that I hear her laughing, all my fears and worries start fading. Perhaps, this is why laughter is so therapeutic and actually the best medicine. Her speech may be disoriented and broken now but her laughter is what keeps us together and at peace.

There’s no such thing as too much ‘I love you’

The number of times I run out of patience and am on the verge of losing it is way too high. My mother has now reached a stage in her condition where she repeats phrases and statements constantly, talks a lot but makes zero sense, and throws in a curse word every now and then.

There may be times when I think I can’t do this any longer but every time I say those three magic words to her, she says them back and means every word. She may be making zero sense all day long but every time I say ‘I love you’ to her, it’s as if a sudden spark overwhelms her mind and body. As if those words trigger a fleeting emotion or memory that seems to encapsulate her completely.
There’s no such thing as too much love, I grasp every opportunity I get to shower her with my love, only to be reciprocated with the same enthusiasm and affection.

We are stronger than we think
Every single day spent with my mother comes with a brand new surprise. With each passing day that her condition deteriorates, I feel it keeps getting tougher than before. Every new milestone of her condition that she reaches is soul-crushing for me. Sometimes, I cry for hours out of sheer exhaustion and my level of unpreparedness, but then again, I come out stronger each day.
Nothing is ‘strange’ or ‘weird’ for me anymore and despite my occasional breakdowns, I seem to be able to cater to my mother’s needs fully. Nothing is daunting for me anymore and I believe we are so much stronger than we give ourselves credit for. 

Grief is like a chameleon
Until five years ago, I wasn’t even aware of what grief feels like in my nearly perfect life. But as it now turns out, grief actually has many flavors. It is also super unpredictable. Sometimes, it knocks on your door and at other times, it just comes crashing through. 

The range of my grievances just kept expanding each day. Often, I saw girls my age shopping with  their mothers. And I found myself sinking deeper into this hole of grief. I felt sad that my mother won’t be able to see me in my wedding gown or play with her grandchildren. 

I felt distressed about not being able to protect her countless memories from destruction. The toughest grief of all, however, was the helplessness I felt when I observed her as she sat across from me, lost in a world of her own and how I couldn’t enter that world despite my tries. 

Until a few months ago I felt consumed by that grief – but now I’ve accepted it as our destiny and rejoice every moment I spend with my mother. To all caregivers out there, grief will do you no good, but joy will help you overcome adversity and find hope and peace and a way to move forward in life. 

They deserve to live in the moment
One day, my mother will be her old self and worry about me and my life like any mother would. The next day, she will be a child who doesn’t know where she is or what she’s supposed to do. It is very important to allow them that liberty of being whoever they want to be and answer all their questions to the best of your abilities. You need to do whatever it takes to put their mind at ease in that moment. Give them the freedom to have their questions answered and their statements responded to like it’s the first time they are speaking. They deserve it. 

Caring for my mother is a journey of self-awareness and continuous learning. There are days when we have to deal with newer struggles. But I’m grateful for being with her.  

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of three published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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