In 2004, my father was diagnosed with Parkinson’s-related dementia and a few months later, my mother with Alzheimer’s disease. That was the year I became a caregiver. While my parents did not reside with me, I was still intimately involved in their daily care for the next 4 and 5 years. Traveling down that rabbit hole of dementia with my parents was difficult and sad. I watched helplessly as this disease steadily and ruthlessly chipped away at their brains, one memory at a time. That said, it was also a time of considerable personal growth for me. I learned to parent my parents with patience and compassion, caring for them much as they had cared for me as a child so many years before. Interspersed with the challenges were times of fleeting lucidity as well as moments of poignant tenderness, which I still remember and cherish, even today. These are moments I would have missed forever, had I not been a family caregiver.
According to the Alzheimer’s Association’s 2015 Facts and Figures, 85 percent of unpaid caregiving help for older adults in the USA is provided by family members. Women make up two thirds of that number, and over half of women caring for people with dementia are taking care of parents.
How many people actually plan on being an unpaid caregiver? Whether it is a spouse, parent or well-loved aunt, it is unlikely that most of us will ever anticipate the reality of wearing the label “caregiver.” As the boomer population continues to age, the number of unsung heroes caring for a family member is on the upswing. According to the report, *Caregiving in the U.S. 2015, there is currently an estimated 34.2 million American adults caring for a loved one 50 years or older.
Caregiving can be overwhelming, both emotionally and physically, bringing with it a myriad of emotions, all of which I experienced at one time or another, including frustration, helplessness, anger, sadness, depression, and guilt. The experience can also be lonely. At times I remember feeling like I was on a deserted island, with nary a person who really understood what it was like.
While speaking at a caregivers meeting recently, two women approached me afterwards to share their stories. One woman told me that her spouse with Alzheimer’s is slowly becoming more than she can handle, but her children are insisting that she keep him at home. The other woman suspects that her elderly father who lives next door to her is showing signs of dementia, but he flatly refuses to go to the doctor. They were both searching for answers. Like growing old, caregiving is not for sissies.
I sensed in these two women what experts label caregiver burnout, a very real phenomenon and the number one reason why it is imperative for all caregivers to recognize the importance of self-care.
If you or someone you know is experiencing the below symptoms, I encourage you to please make time to see a doctor.
- Social withdrawal
- Poor concentration
- More susceptible to illness
*Caregiving in the U.S. 2015 – A Focused Look at Caregivers of Adults Age 50+ was published by the National Alliance for Caregiving (NAC) and the AARP Public Policy Institute.
Over the past several months, four other authors from across the country and I have crossed paths, all of us affected in some way by Alzheimer’s disease/dementia. Two watched both their parents’ memories disappear and one is a nurse who was a caregiver for those affected. Another is a granddaughter that was forgotten by her beloved grandpa, and the other is experiencing the disease himself.
For the month of November, the 5 of us have joined together together in recognition of both National Caregiver Appreciation Month and National Alzheimer’s Disease Awareness Month to acknowledge those family caregivers who are unsung heroes. From each other, we learned that all of us felt compelled to write our books, eager to make a difference…hoping that we might make the pathway for others traveling this road a little less painful and lonely.
Check out this commentary for more information on these great books!
Vicki Tapia, long-time lactation consultant and published author of numerous lactation articles, found her energies redirected to the other end of life when both her parents were diagnosed with dementia in 2004. Her diary documenting their journey resulted in the publication of Somebody Stole My Iron: A Family Memoir of Dementia, a 2015 finalist for the High Plains Book Awards. The mother of three grown children and eight grandchildren, Vicki lives with her husband and Mini Schnauzer in South Central Montana.
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