Welcome to Five and a Half Years: Caregiving for My Sister with Dementia. This is a memoir about my younger sister Peggy—who lived with early-onset Alzheimer’s Disease, frontotemporal dementia (FTD) and the very rare logopenic variant of primary progressive aphasia (PPA)—and about my own journey as one of her caregivers. Peggy died on March 6, 2024, just five and a half years after she was formally diagnosed. Our suspicions that something could possibly be wrong began only eight months earlier than that, when we first sought help for her emerging symptoms.
In telling my family’s story in this public way, I have a few goals. First, I hope my descriptions of Peggy’s early days (especially in the year or two pre-diagnosis) will be detailed enough to help others recognize if one of their own loved ones is showing signs of dementia, especially in the early mild cognitive impairment (MCI) stage when the most treatment options are available.
I hope that if someone you care about is beginning to develop Alzheimer’s that you’ll be able to recognize it for what it is, not just “normal aging” or a stroke.
Of course, every patient’s experience is different. There’s even an axiom that gets to the heart of this: “When you’ve seen one person with dementia, you’ve seen one person with dementia.” Alzheimer’s presents differently than FTD, and FTD presents differently than other types of dementia (such as vascular dementia) even though they may have many symptoms in common. Also, the timing of the progression of these diseases varies so greatly from person to person.
With Peggy, her diseases progressed blazingly fast, and I had to get up to speed just as quickly on what was going on and how I could help. Prior to her diagnosis in August 2018, I hadn’t read anything about Alzheimer’s or dementia and, since my sister and I both had full-time jobs in different cities, my opportunities to observe any of her symptoms initially was limited. I’m the type of person who keeps detailed notes when I encounter unfamiliar territory, so as soon as I heard her diagnosis, my research—and my amassing of resources—began.
I started by looking for articles and books that were the most applicable to my sister’s situation but later expanded my search to include a little about related diagnoses, once I learned that a person with dementia (PwD) could at some point experience “mixed dementia.” I always looked at symptoms and behaviors that I saw in Peggy and tried to match those up with what I read. Another invaluable resource for me was the Alzheimer’s Association and its social network ALZConnected, a community of fellow caregivers who have a lot of insights to share.
And so I hope that these resources, which I will be referencing in upcoming chapters, will prove as useful to you as they were to me. When I first began as my sister’s caregiver, I didn’t really know where to begin. But now that I’ve been through this experience once, from start to finish, I realize I’ve learned a lot, and now I want to share all that with you. Hopefully, my writing about Peggy and my experience, and the resources I’ve compiled, can serve as a roadmap for you to begin navigating your way through—or at least provide some breadcrumbs to help you make your way.
At the start, caregiving for a PwD might not be that challenging for you. It might be about just keeping your loved one occupied, and heard, and safe. Making sure they can attend their doctor appointments. Keeping connected with them and their changing moods. Networking with their doctors and healthcare staff so you are up to date on everything that’s going on.
Later on, you’ll need huge scoops of empathy, and a team to help—other family members, your loved one’s friends, your friends, care team staff, health aides, and more. Some people will need to step up to play more direct roles in your loved one’s care, but those not cut out for that sort of hands-on interaction can still help support your loved one, and you.
If you cast a wide net, you may be surprised who around your loved one—and who in your own life—may come through in a pinch, even if it’s just to act as a sounding board. I never made a decision about my sister without first consulting with all the people who had her best interests at heart, especially her oldest friends. But I also spoke to a therapist, and other loved ones who offered smart advice. So in the end, I always felt secure in my decisions and confident that Peggy was getting the best care. That was a boon for my own mental health.
Finally, another key piece of advice: If you’re starting on a caregiving path, please remember to take time out for yourself and practice self-care. I know this is easier said than done! Believe me, I know. But there are so many dimensions as to why Alzheimer’s is such a horrible disease, and this is one of them. I know that I would have reached total burnout very, very early on if I had not regularly taken time to rest and regroup with my partner. So remember to prioritize this!
And thank you for reading my story,
D
