Blogger James Russell Cares for Daughter with Younger Onset Alzheimer’s

James - Russell - Blog

James - RussellBy James Russell

My blog, Nevertheless Dementia, We Persist, began in January 2020 to record my daughter’s life with Alzheimer’s disease in an Aegis Living facility in Seattle. She and I are supported by love channeled to us from our family and many of Lynne’s friends. I am a 79-year-old who retired as Dean of Business and Computer Technology at a community college in 2001. My wife, Karen, and I quickly moved to Wenatchee, Washington to enjoy many outdoor and community activities. We moved to Redmond in 2018 to better care for Lynne and her sons. My wife died in September 2019, two months before our 56th anniversary. I moved to an apartment two blocks from Lynne to give her better support and began the blog in January.

The blog consists of stories about the care she’s had since then. She is a fun loving, high energy, empathetic person, so we had fun participating in Aegis and family activities. We like the community she lives in, even though residents are at least twenty years older than she is. She considers them her people and told her sister she’d found a new purpose in caring for them. Staff involve her to help provide care. I join her when she can fit me in. She has participated in more activities than any other resident in a facility with 124 apartments. She walks with friends to women’s strength classes at a nearby gym where she presses in the heaviest weights class.

My blog reports the impact on both of us since the beginning of the Covid-19 lockdowns. Lynne, the caregivers and I have adapted as her condition has declined from Alzheimer’s and her isolation with little exercise. She currently resides in secure memory care with the diagnosis of severe dementia. I’ve recorded the times we enjoyed and times we despaired. Times when care was exemplary or insufficient. Times when I was effective or when I failed.

Readers are friends of Lynne and mine who want updates because they keep us in their minds and prayers. Some share similar experiences with relatives or friends. It gives them an ability to encourage and support us through the highs and lows. They appreciate ideas on the ways we stay connected, such as video chats, Facebook Portals, or even talking with her out her third story window. They are inspired to send her books and notes and visit when they can. They admonish me to be more effective at being Lynne’s advocate with the staff at assisted living. They give me suggestions for Lynne’s care such as foot baths, sandals, and a cat. They encourage me to take care of myself, even lifting me up as a saint or an angel – those are firsts. Finally, they give me the forbearance to pour out my feelings as my own therapy.

I am also writing a memoir about my family’s experience with Alzheimer’s over four decades, beginning with my mother, Lynne’s Grammy Helen. Our children were adolescents when Grammy Helen lived with Karen and I, Lynne and her younger brother and sister when Alzheimer’s first disrupted my mother’s behavior. They watched her decline into assisted living until it was too hard for them to visit her. Our family experienced dysfunction during our children’s upbringing, but we eventually reunited.

Lynne’s Younger Onset Alzheimer’s diagnosis in 2017 when she was forty-eight terrified our family with the personal ramifications for her, me, Karen, her younger brother and sister, Lynne’s three sons, and my son’s two daughters. Though our family has been fractured and uprooted and has disagreed about her care, we have stayed united to support each other. My memoir should be a testimony to the strength a family can provide, even amid dysfunction and disagreement.

My main focus is our family. As the father of my family’s fear and brokenness, my primary goal became not only keeping the family united, but also committed to supporting each other and for better care for Lynne. We have been blessed, because many of Lynne’s friends joined us to wrap her in loving care.

The family has healed those fractures and restored the joy in our united, loving and confrontational family. My audience is aimed at people who want to read a narrative memoir of four generations of one family and friends and learn more about Alzheimer’s.

About the Author

I am a seventy-nine-year-old widower with three children and five grandchildren. My wife died in September 2019 in our 56th year of marriage. My education includes a BA, MBA and PhD in business and management.

In 2001, I retired after a career in business, community service and education, ending as a community college Dean for business and computer technology. After publishing and editing academic articles, my professional and personal interests in writing evolved to writing weekly newspaper columns for Douglas County, The Empire Press and the Wenatchee Business Journal. I’ve published articles on outdoor adventures for The Good Life of NCW. I wrote and told children’s stories for First United Methodist in Wenatchee, a couple of which were published.

After my wife died, I moved to an apartment in Seattle across the street from the assisted living facility where my daughter lives.

In addition to my blog, I am writing a memoir based on the impact Alzheimer’s has had on the members of our family. My daughter is not the only family member affected. Years earlier, when our children were adolescents and she was living with us, my mother was diagnosed with Alzheimer’s. Our family has been both terrified and united through the struggles we have had with this disease. Writing has been cathartic for me and helpful for our family and friends. My hope is that it will also be informative and helpful for other families devastated by Alzheimer’s.

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2 Responses

  1. Thank you for sharing this. You have survived some very hard difficulties and sadness with equanimity. I hope, pray that with Carol’s help you will find peace and happiness. You deserve it!

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