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, … Read more
[TIMELINE: MAY 2019] May saw the end of our relative peace as an immediate family. Peggy developed enteritis, and was prescribed antibiotics. Her doctor also instructed her to drink Gatorade (for the electrolytes), eat yogurt, and otherwise stick to a soft diet during her recovery. But our brother Les was angry about these choices, since … Read more
[TIMELINE: JANUARY–APRIL 2019] The first couple of months of the year were almost normal. My sister’s mood was mostly calm, and the mediation agreement we signed with our brother the previous November continued to hold. My partner Jon and I were still rested from our European vacation. The concerts we attended by The Men They … Read more
[TIMELINE: 2018] Once we knew something was wrong with Peggy, we spent the first half of 2018 putting the pieces in place to get her tested and diagnosed. My sister was lucky in that she had great medical care through Kaiser, particularly after we replaced her primary care physician. That first doctor had said Peggy … Read more
[TIMELINE: 2016–2018] At the beginning of January 2018, I had the luxury of knowing next to nothing about dementia or Alzheimer’s Disease. Of course I’d heard of them, but I thought Alzheimer’s was mostly something that happened to very old people, and I figured it was mostly about just becoming forgetful. I’d never even heard … Read more
[TIMELINE: 1960–2015] My sister and I always got along very well, even though personality-wise we were really different. We had a strong relationship, and that became even more important later on because she trusted me to do all the right things for her. That trust was vital. As a caregiver, you have to have that … Read more
