My own experience is that, in the arena of Alzheimer’s and dementia, the world is divided neatly into two groups of people: those who have some direct experience with the disease, and those who do not.

When someone hears that a close friend has cancer, rarely would they compare their hangover, headache, or sour stomach to the experience of the cancer patient undergoing chemotherapy. But perhaps because there are no visible scars or outward symptoms, disclosure of an Alzheimer’s diagnosis is regularly met with some version of, “Yeah, I probably have it. I cannot remember anything anymore.” Those who are not directly experiencing the challenges, or caring for someone who is, understand neither the depth of suffering the disease can cause nor the extremes experienced by caretakers. Adding to the pain is the reality that there are rarely, if ever, outward physical signs to observe: no scars, no bruises, no braces, bandages, or surgical scars, so there is an unaware assumption that it is just, “…a little forgetfulness.”

So, yes, in my early 70s, I have been diagnosed with Alzheimer’s disease. It is not a surprise: it runs in my family, especially on my mother’s side. While the progression of the disease can take many forms, none of them are positive, and most lead to a great deal of family tension and suffering. My mother died of it, but only after years of lost memory, odd behavior, anger, and significant confusion. My father was unable to care for her for the last few years of her life. By the time he had to put her into a care home, he was so beaten down that he died 2 years before she did. She was not the only one in her family to be diagnosed with Alzheimer’s. Her brother had it. Her mother had it. Another uncle on the other side of the family died of it. Each of their stories were, like all Alzheimer’s patients’, painful and excruciating for family and friends.

Although it is my own diagnosis of Alzheimer’s Disease that sparked this Substack, it is not my intention to morbidly describe every detail or focus solely on my own Alzheimer’s progression. I will share the progression as honestly as I can as a service to those who have an interest for themselves or family members and friends.

My primary intention is to shine a light on the experiences of caregivers, family members, friends and even neighbors—as well as those who, like me, have the disease. I hope it will be a place where people can bring their questions, their challenges and even, when they have them, their joys and breakthroughs.

I seek to create this space so that those who do not have personal experience with Alzheimer’s can understand and maybe engage in a more courageous and sensitive manner with what friends and relatives are experiencing. Additionally, I envision this to be a safe space for those with a diagnosis of Alzheimer’s, as well as their caregivers, families, and those with questions.

Although I will chronicle my relationship to the disease here, this Substack will not be a family history or a “poor me” play for attention. Nor will it be a moment-by-moment journal of my own decline. Additionally, I am not a doctor or medical professional, and in no way am I qualified to provide medical advice. It is not my intention to do so. I may discuss my own experience of engaging with the medical community. Or I might occasionally share bits of information that I’ve learned about research into the disease, but this Substack will not be focused on the latest medical research or therapies.

Alzheimer’s is not like cancer or heart disease or any of the other things that kill us slowly. Alzheimer’s patients often live far beyond their ability to recognize friends and loved ones. Sometimes, they live past their ability to remember their own names and lives. It is my intention to chronicle the impact of my own journey on myself, my family, and those in my community. If what my family and I learn as we walk this path is useful to others, I will have been successful. I cannot write from a personal view without exploring my own anger and frustration. But my intent is not to make this Substack an angry vent. My sense is that if I can write courageously enough, there may be some solace and maybe some practical help for others walking the path.

A few other things to know before you either move on or subscribe:

• My intention is to write weekly here, but there may be more or less than that depending on my health and ability to focus.

• I will write only real stories concerning my health and my family’s journey and those I collect from others and know to be true. Additionally, this Substack will be anonymous.

• This Substack will be set up as a paid Substack from the beginning. There are a handful of free articles that you are welcome to read, to see if this content is for you.

• And, once the costs of editorial services, hosting, and admin support and such are covered, all further subscription revenue will be donated each month to organizations who support Alzheimer’s research and organizations that provide resources and support for patients, families and caregivers. While I have no way to make it a charitable deduction for you, it is also not meant as a profit-making endeavor for me.

• My strongest hope and desire in launching this Substack is that it can be a place of emotional support, resilience, and even hope for those who either have the disease or love or care for someone who does.

What you will get here is as clear and vulnerable a picture of my own journey, not as a form of fishing for sympathy (feel free to call me out if it goes that way!), but to allow others to understand the pains and joys of their loved ones or neighbors—or perhaps themselves—who are fighting the fight. There may be guest posts from those in my life who have important things to say, and possibly other guests who, like my family and I, are navigating this unhappy journey.

It is an odd reality that people will minimize Alzheimer’s. It is common to hear a statement like “Oh, I get it! I forget stuff all the time.” And I understand, especially from those with no experience with the disease. But there is a very big difference between forgetting to get the dry cleaning on the way home and not remembering the names of professional colleagues of over two decades, or not recognizing your own children, or forgetting the important promise you made to your spouse.

My hope is that for those newly dealing with an aging friend or family member, or with a diagnosis of Alzheimer’s themselves, this site will be a source of information, community, and support.

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