Lyndy Downs, California, USA
Caregiving for someone with dementia is like traveling a long and winding road with endless challenges along the way.
My journey began around the age of twelve when I became a caregiver, alongside my mother, to the other three members of our family–my father, sister, and brother, all of whom had Huntington’s Disease (HD). Back in the late 1970s and early 1980s, not much was known about this devastating disease which I was also at risk for. It is a hereditary neurodegenerative disorder similar to that of late-stage Alzheimer’s and their care needs become complex and increasingly difficult.
I watched my once gentle father gradually lose all sense of reason and self-control; so much so that he was eventually placed in a state hospital by the time I was twenty. That same year, I lost my sister and just a few short years later my brother succumbed to complications from HD.
By the late 1990s, my mother and I were all that remained of our family of five. I had also gone through testing to find out that I was not a carrier of the dreaded HD gene and by the age of thirty-three my turbulent life had settled. I married and was blessed with three sons; life seemed almost “normal”.
Many people told me that I should write a book about my life growing up around HD. While I had contemplated the idea, it wasn’t until later that I decided that it was time to share my story, because my caregiving journey, as it turned out, hadn’t finished.
My dear mother, who had spent so much of her life caring for, and advocating on behalf of, her family and others with HD, was diagnosed with Frontotemporal Dementia. At a conference, I heard it referred to as the “beast” of all dementias. I soon understood why: the social, outgoing, loving, independent, smart woman I had known all my life (my rock in many ways) gradually became confused, reclusive, suspicious, combative, and completely unable to care for herself.
Caring for my mom had become too difficult for my stepdad who had health issues of his own, so I began attending doctor’s appointments and assisting in the ongoing struggle to get her to shower, eat properly, and engage in life. Eventually, they moved in with us.
Not only had my caregiving journey restarted, but it took on a whole new dimension. This time, I became the primary caregiver and was confronted by a plethora of old and new emotions including love, joy, anger, sorrow, hardship, frustration, guilt, anxiety, and redemption.
I wrote His Strength In Me, because, over my 30+-year caregiving journey, I learned that despite my early years of not acknowledging God’s presence, strength, and provision in my life He was there nonetheless.
I have known what it feels like to be drowning in my endless sea of despair and doubt, yet saved by miraculous moments of strength and an assuredness that could only come from God. He had provided for me and our family in so many ways and at just the right time. It wasn’t until the second phase of my caregiving journey that I learned to look for the blessings that were hidden amidst the daily emotional and physical struggles. I realized that my life of caregiving for family members with HD and dementia, though difficult, was the life God intended for me.
I hope that by sharing my experiences and those of my mother (as illustrated in my mother’s journal entries), others will find that they are not alone regarding the ongoing battles, emotions, and feelings that accompany caring for loved ones suffering from devastating diseases. I pray that my story will help you to recognize and embrace His strength in you.
Author’s Bio:
Lyndy Downs has over three decades of experience as a caregiver to her father, sister, and brother all of whom were afflicted with Huntington’s Disease, and then later as a primary caregiver and advocate to/for her mother who suffered from Frontotemporal Dementia. She is a retired special education teacher with a Bachelor’s Degree and two credentials in education, as well as a Master’s Degree in Special Education for the Severely Handicapped. In addition to having served locally as a board member with the Huntington’s Disease Society of Los Angeles for a number of years, she has also volunteered with other various non-profit organizations, and serves in ministries at her home church. She is a wife, mom and “Mimi” (aka grandma). For more from Lyndy, check out her periodic blog entitled, More of Him, less of me located at lyndydowns.com.
Follow the Author’s Socials:
Instagram:
https://www.instagram.com/lyndydownsauthor/
Facebook Blog Page:
https://www.facebook.com/moreofHimandlessofme/
Facebook Author Profile Page:
