I would guesstimate that it was around 7 years from the time we saw clear signs of my mom's dementia until the disease took her life. I realize that if we'd had a seven-year hourglass, we would have mom "with us" until the top was about half empty. Three plus years, or so, to make plans and live life differently in ways that would have had a profound effect on the quality of life for both mom and dad. But like so many families, we spent those early years caught up in a web of fear, stigma, guilt and denial. By the time we got mom diagnosed her disease was so far along that we spent the time from her diagnosis to her death reacting and responding to one bad situation after another. We never caught a break. Looking back on the odyssey Alzheimer's put us through, I often wonder, what if...
What if our primary care physician was as concerned about the early symptoms of Alzheimer's and dementia as other diseases? Today with even a modest uptick in your cholesterol, your doctor will probably recommend you start taking a statin, and suggest heart healthy lifestyle changes. Yet mom's primary care physician never recommended she see a neurologist or seek other specialized care, even when her symptoms had progressed into the middle stages. I have learned from talking to hundred of other families that this is all too common, and it needs to change. Early diagnosis effects not only the course of care for your loved one, it opens up resources that will help the entire family.
What if, armed with an early diagnosis, we could have had a discussion with a case worker who was willing to be painfully but compassionately honest with us about the progression of the disease and the likelihood that mom would need to move into memory care; that it might become impossible for us to care for mom at home. I wonder how mom and dad might have planned differently. For instance, they might have decided to sell the house years earlier and move into assisted living, in a place that they chose together, with lot's of care options in place and access to memory care if needed. I regret that mom felt so scared and abandoned when we moved her to memory care, and I wish that she'd been able to have a voice in the plan for her own care.
What if we lived in a culture that viewed the disease differently, to the extent that we would have let our closest family and friends know about mom's condition years earlier? This item on my "what if list" would have made huge difference for my dad's physical and mental health. Being a primary family caregiver is the most stressful job imaginable, and most go it alone. Isolation is the norm, and can be accompanied by severe depression, illness, injury and even death. Our nearest and dearest would have been there for us if we had told them. Visits, phone call, emails, caregiving breaks for dad, errands run, dinners shared - all critical lifelines that would have been game changers for us.
What if I had been a braver, wiser and better son? What if I, with my sister and brother, had risked some tough confrontations with mom and dad, and insisted that they get mom diagnosed. It would not have been easy, might have been downright ugly, but so many things would have been better if we had. This one haunts me of course, but I give myself some grace because we all did the very best we could with the information available to us at the time. But it also drives me, every day, to increase awareness and open dialogue about the disease, and to build a product that can help everyone who will one day walk in our shoes.
And finally, what if this little blog post finds it's way to someone who is where we were years ago, and they are inspired to get their loved one diagnosed, and seek out resources, early in the game? I hope that it does, and that it makes a difference.
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