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What I Wish I’d Known on the Day My Grandma Was Diagnosed With Dementia

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My grandma and I were always very close, and so when she was diagnosed eight years ago with sudden onset dementia, it was absolutely devastating. One day she was the same cookie-baking, soup-making, blanket-knitting, card shark of a grandmother she’d always been, a sharp-as-a-tac woman who lived independently and still drove her own car at the age of 92… and then practically the very next day she couldn’t do any of those things.

I remember walking out of her hospital room days into her diagnosis of dementia, heartbroken and reeling.  However, if I could go back in time to those scary early days, there are a few things I would tell myself.

Even though dementia has been a thief that has robbed her of many of her abilities and has stolen her short term memory, it has never ever been able to take the most important part of her: her spirit and her essence.  Every time I get to feel the softness of her wrinkled, almost 101-year-old hands in mine, every time she chortles with laughter, and every time I look into her aged-and-yet-still-glowing-with-joy blue eyes, I connect with her spirit. It doesn’t matter that she has lost the ability to do what she once could; the essence of who she is remains inside of her, and that is what really matters.

She teaches me how to live in the moment. Over the years, her short-term memory has continued to decrease and now is only a few seconds long. It can be hard to communicate with someone who cannot remember from moment to moment what she is doing or what we are talking about. For a while I wondered what was the point of having her over for supper or taking her on a family picnic when moments after the activity finished she would lose all awareness of having done it. However, then I realized that in the moment she does the activity, she truly enjoys it. One just has to see her eyes sparkling as she basks in the sunshine on my back deck or relishes a hot dog cooked over the fire to realize these moments really matter to her and bring her great pleasure.

She has given me the opportunity to love her back. All through my childhood her strength and love were an incredible role model to me and played a big part in the woman I grew up to become. Now, it is my and my family’s turn to love her and care for her.It is a privilege to gently rub her back, paint her fingernails pink, and even to answer the same question repeatedly every few seconds. It is an honor to have her over to my home for Saturday supper, just as years ago she once faithfully cooked Sunday supper for me every week.

She has shown me just how fragile and precious life is. Two years ago, I was called to her bedside to say goodbye and told by her care team she might not make it to the morning. I would have done anything for her to wake up again. Amazingly, the next morning, she did wake up and not only rallied but went on to make a miraculous physical recovery. These two bonus years have been an incredible gift full of hugs, family gatherings, and the showering of her love. At this stage in her life, every single moment we share together is incredibly precious to me and will be cherished all my life long.

grandma and grand daughter

I don’t mean to make light in any way of the hardship that dementia has been for her, nor to minimize the losses that dementia has caused in her life. It certainly has not been an easy road, neither for her, nor for us, her loved ones who have walked alongside and cared for her during her many year battle. It is not a diagnosis I would ever wish on anyone’s family member.

However, I believe life in any form is a gift; my grandmother’s journey with dementia has shown me the deep value of every person, a value not based on what a person can or cannot do. All my life this special woman has been both a teacher and a blessing to me, and her diagnosis of dementia has not changed that in any way. I am so thankful to still have her in my life and for the lessons she continues to teach me each day I spend with her.

It would have surprised me deeply on that long ago day she was diagnosed with dementia to hear that beautiful flowers could still grow in our relationship, and yet that is exactly what has happened. Alongside the sorrows and losses of this horrible condition, love and joy have continued to bloom, and there have been gifts… so many gifts. The biggest gift of all is having her still in our lives.

Originally published: October 4, 2016
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