Editor’s note: Virginia addressed this question (which was asked by me, Michelle Urbick) in a post she wrote a post about it in May 2020. Recently it was on the top of her mind again, and due to the nature of her condition, she forgot she’d already written about it. This new post contains descriptions and details that are different from the first version that might be valuable to her readers, so we are publishing this fresh post, even though it might contain some repeated information.
This is a question one of my closest friends asked me weeks ago. Since then, I’ve been struggling how to answer her. For months of trying to analyze and name my thoughts and emotions I finally feel I can, at least in part, offer some thoughts on how I experience and live with my diagnosis of dementia.
Currently I feel as if I’ve reached a plateau of accepting the onward progression of my disease. I’m aware of forgetting more and more, of asking Keith the same question more frequently, and of consistently feeling frustrated and impatient with my condition. Of having a thought such as: ‘Oh yes I should do such and such today,’ and then less than a few short minutes later I can’t recall what task I had in mind. It’s feels like a blurred, irritated shadow in my head—vague and just out of reach. Bits and
pieces come to mind but are never clear enough to be retrieved, causing me much frustration, and a harsh reminder of my condition. I’ve learned to try and ‘let it go’ because generally the thought will come back to me. And if it doesn’t, well then, I accept that whatever it was, wasn’t crucial. Nevertheless, the experience is like a sharp stab of what’s to come—more and more forgetting, and less and less of ‘me’ remaining.
I have mixed and complicated feelings about having a defined diagnosis. On one hand a diagnosis is better than “I don’t know what’s wrong with you,” which would leave me in limbo, unpredictability, and without a course of treatment. On the other hand, the diagnosis of dementia causes me dread. It is incurable and progressive. And these thoughts always cause me to feel sympathy and sorrow for my family: especially for Keith: my partner of 50+ years and my faithful, thoughtful, kind, patient caregiver. I’m so sorry for my two children and my five grandchildren, having to witness the slow fading away of their Mother and Mor Mor (Swedish for grandmother—translated as Mother’s Mother). I often think of how incredibly sad I was when my own Mother died, even though it was expected, and how I felt ‘orphaned,’ as my father had already passed.
So, when asked ‘What does it feel like?’ the truthful answer is, ‘It’s a mixed bag.’ Having a diagnosis of mild cognitive impairment never felt right because my memory loss never felt mild. While the diagnosis of
dementia at times seems harsh, fearful, and ominous; it nevertheless is true. And knowing the truth grants me the time to tell my family how much I love them, how proud I am of them, how blessed I feel. Having experienced the tragic, unexpected and accidental death of my father, I am thankful for this time. Time to express love and create memories. Time to tell my loved ones how important they have been in my life. Time to focus on my blessings rather than my losses. Time to kiss Keith every chance I get.