Time to tell: No shame in early onset Alzheimer’s diagnosis

By PAMELA SMITH, former licensed clinical social worker

EAST MIDDLEBURY — I have Early Onset Alzheimer’s and I’m tired of hiding it. I was diagnosed at 53 after two years of telling my primary care provider and my loved ones that something was wrong with my memory. Eventually I had a meltdown in my office after taking four hours to write what should have been a 15-minute document and I placed an emergency call to my Primary Care Physician’s office. I met with a doctor who really listened the next morning.

Ironically, much of my 32-year career in human services involved advocating for others but I hadn’t been assertive for myself until that pivotal day. Everyone had an excuse for why I was forgetting things. My job was stressful. My learning disability left me without a “back-up” system. Menopause had caused anxiety and depression, which can interfere with memory. Normal aging. Some conversations aren’t important enough to remember. But I knew something was truly wrong.

After months of blood tests, brain scans and four specialists I finally got confirmation to what I knew all along. Each doctor told me that the next one would confirm a diagnosis. It wasn’t until I asked the fourth one outright that I was finally told. It felt like no one wanted to be the bearer of bad news and kept passing the buck. It still took me advocating for myself the way I used to for others that the memory clinic neurologist explicitly stated, “You have Early Onset Alzheimer’s.”

Despite the hard news, it was also a relief because I had a name. By that time I had already had to leave my career, had my daughter take over most of my finances, and had to start adapting my daily activities.

The day I got diagnosed I scheduled an appointment to complete my will with a lawyer and to revise my Advanced Directive with my primary care physician.

I let my family, my best friend and only a couple other people know. Otherwise, I kept it a secret, like it was something I should be ashamed of. I was afraid others, including my small circle of the informed, would question every decision I made. I would need to take care of the reactions of others. I would be less. Alzheimer’s is a condition that leads to a series of losses and humiliations and by telling others I would have to face them publicly as well as cope privately. And with the pandemic it was easy to hide.

Now the pandemic is coming to a close and my deficits are mounting. I’m hoping that going public in this way will lead to a greater understanding and commitment to support individuals with my condition. So far Alzheimer’s has taken many things from me. I never know whether I will remember a conversation or a visit with another person. I contend that this is the key cause of my anxiety. It can be rather nerve wracking when you don’t know whether you will remember something, regardless of its import. I often don’t trust myself. I need much more alone time yet caregivers are told to keep me engaged. I feel a lack of purpose despite having activities to do. I have a hard time standing up for myself or what I know to be right for fear I will automatically be dismissed. I have word recall problems. Sometimes I ramble on. Sometimes I have a hard time making my point. I can no longer correct my vision with glasses because the problem is that my brain no longer sees clearly, not just my eyes. The constant mildly blurred vision causes near daily headaches. I have difficulty doing paperwork that used to be easy and something I helped others with.

I fear all of my judgments for the last several years will be questioned despite how mild my condition was and that I made all serious decisions for myself and others with a team.

The latest humiliation is having some difficulty with basic problem solving and completing a task I have been doing since I was about 10 years old. I keep wondering what will go next, how bad will it get, and how quickly will that bad come. The Alzheimer’s Association hotline has been kind and supportive. Family and my best friend have been kind and supportive. But of course, no one can answer those fundamental questions. No one knows the answer.

The final indignity, is that Death with Dignity is not available to me. So this letter also serves as a plea to the medical and legislative community. By the time I am within six months of my physical death, my dementia will have progressed so far that I won’t be considered able to make my own decisions. I will be too young to have a guardian appointed for me. I won’t be able to avail myself of the options I could have if this was cancer or congestive heart failure. And while I can make a rational, thoughtful decision of how and when I want my life to end I am denied the option of making a plan with professionals and family to be enacted when I cross a certain line of incapacity.

Imagine not knowing who your children are. Of needing full-time personal care and attendance. Of wandering out, lost, into the Vermont cold when no one is noticing. That last one really scares me. I think many would find these outcomes, especially when only in their 50s, as undignified and unreasonable to endure.

I have cared for people through their last moments of life and I felt proud to support their decisions, whether to maximize the length of life or to choose not to. I just wish that I could get that same support, but Alzheimer’s is robbing me of that as well. My rights as a citizen of Vermont are another loss of self for me to endure with this disease.

I don’t need sympathy. I am hoping that since I am known to quite a few as a helping professional in this community that my words will be listened to. I am grateful for the career I have had. I am grateful for my family. This letter will be letting many friends know for the first time about my condition. Please let it be a catalyst for people to truly listen to one another when they say something is wrong. I am working towards being matter of fact about my condition with myself and others. So to those that know me, I hope this gives them the opportunity to process and accept without needing to do it in front of me, for their sake and mine.

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