However a person feels about an Alzheimer’s diagnosis, it’s valid

If you’re diagnosed with dementia or its most common form, Alzheimer’s disease, please know that however you feel about it is how you feel about it. Your feelings are valid.

Someone diagnosed with dementia commented on a recent column of mine, “We must avoid wallowing in self-pity after an Alzheimer’s diagnosis.” The commenter was angered after reading the column and disturbed by the other readers’ comments. This person wrote:

“Until you or your commenters receive such a diagnosis for yourself, none of you have any license to tell those of us who actually have received this diagnosis how we should feel. Your arrogant, condescending comments and supposed ‘words of wisdom’ are not at all helpful or inspirational. How dare you?! You should be ashamed of yourselves, you have no idea how it feels to be ‘one of us.'”

I addressed this comment and clarified as best I could; however, given that commenter’s interpretation, other readers may have similar feelings regarding my weekly content. I feel the need to clarify.

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Similar, yet different

I recognize that my family’s experience doesn’t precisely mirror the experience of others. My mother was diagnosed with Alzheimer’s disease, and I was one of her primary caregivers. My sister was the other.

We were fortunate. Our mother remained a sweet lady throughout her battle, with her personality intact throughout. But the manifestation of her disease was similar to that of others with dementia, and our family processed it in a similar fashion, too.

Over time, our mother lost ground. She struggled with Alzheimer’s, and our caregiving was challenging and draining, both emotionally and physically. We navigated uncharted territory and a new normal. Looking back, we were grateful the disease unfolded slowly. Otherwise, we would’ve been completely overwhelmed.

My mother was diagnosed over two decades ago, and she lived her best life with the disease until it took her home in 2012. Much more information is available today for caregivers and their loved ones who have the disease compared with what we had 22 years ago. The diagnosis and disease are still ominous today, and it may feel like you’re treading dark waters — which is precisely how it felt for our family.

My sister and I were often baffled by the few stories we heard from recent caregivers who seemed to be sailing along, breezing through the challenges associated with this disease. At the same time, we waded through the ultimate on-the-job training.

Everyone struggles

Our experience and our mom’s experience with Alzheimer’s taught us many lessons. One significant lesson was that caregiving is similar to giving birth; once you’re done with the process, you tend to remember only the good and positive aspects of those years. Perhaps that’s why other caregivers appeared to sail while we treaded dark waters.

I promised that if given an opportunity, I’d share the good, bad, and ugly of our experience and our mom’s. That’s the purpose of this column. But it’s tempting to highlight only how sweet my mother was, how she bravely battled the disease, how we overcame obstacles, and that God met us — all critical aspects of our journey. But it’s equally important to note that it wasn’t smooth sailing.

The reader who was upset with my view of an Alzheimer’s diagnosis is correct. I’ve not received a diagnosis myself and have no idea how it feels. I can only share our journey and the hope we found throughout. Following a diagnosis, how you feel is how you feel. It is valid.

My content in “Treading Dark Waters‘” is based on my mother’s experience with Alzheimer’s disease and my experience as her primary caregiver. I don’t intend to tell anyone how they should or shouldn’t feel, but to provide a transparent look at the disease through our experience while I let caregivers and patients know they can find joy and hope through the arduous journey.

Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.