Chapter 9: Abroad, Just in Time

[TIMELINE: SEPTEMBER–OCTOBER 2019] By the time late September rolled around, we were ready to attempt the impossible—Peggy’s bucket-list tour of Italy and Sicily. Here are the highlights, and a few lowlights. [For all of the planning and research we did to make this trip happen, please see my travel logistics page.] Peggy really wanted to … Read more

Chapter 8: Living, Assisted

[TIMELINE: AUGUST–SEPTEMBER 2019] As my sister adapted to life in her new assisted living apartment, we were happy to observe in action a few of the different amenities the facility had to offer, such as the main dining room. That set-up worked out very well for Peggy. Meals were served three times a day with … Read more

Chapter 7: The Big Move

[TIMELINE: JULY–AUGUST 2019] In July, we learned that a spot had finally opened up for Peggy at our assisted living facility of choice, and we scheduled a move-in date of August 16, 2019. I hired a company, Caring Transitions, to help us set everything up. They were fantastic. We packed up her belongings in the … Read more

Chapter 5: Food Fights, Family Issues

[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

Chapter 4: Making Plans

[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

Chapter 3: Getting the Diagnosis

[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

Chapter 2: The Lead-Up

[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

Chapter 1: The Before Times

[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

Welcome

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