Recently I was delighted to learn the rest of the story from Wendy herself, as she contacted me to answer my question. As it turned out, her mother’s illness had progressed to the point that she needed to be moved to a nursing home. The piano recitals were no longer possible from the new facility, and the therapeutic ritual became another short but sweet memory in Wendy’s Alzheimer’s journey with her mother.
All dementia caregivers have stories to share, events in the progression of this devastating illness that have changed them profoundly. While these stories are all personal tributes to loved ones, there is a bittersweet commonality between them to which all caregivers can relate. Wendy was kind enough to share another of her stories with me, one she originally submitted to her local newspaper for Alzheimer’s Awareness Month. Thanks to Wendy for filling in the blanks and also allowing me to share her poignant story with others here.
Why do I support the Walk to End Alzheimer’s event sponsored by the Alzheimer’s Association each year? Because Alzheimer’s is a runaway train headed at full speed straight towards me and my siblings. I hear the train whistle blaring its approach in my dreams, but I cannot escape this train no matter how I try. Due to my family’s genetic vulnerability from a parent afflicted with Alzheimer’s, we remain helplessly tied to the tracks, unable to escape while dementia bears down upon us. There is no telling when it will arrive and how many it may hit, but from a family of five children it will likely find a target with one or more of us.
While on vacation, I had the chance to read Dignifying Dementia: A Caregiver’s Struggle by Elizabeth Tierney. First and foremost, this nonfiction book is a guide for caregivers offering all the nitty, gritty details of how difficult it is to personally care for a loved one at home through all the demanding stages of dementia from beginning to end. It is more than that, however, because it is also a beautiful love story.
Anyone seriously considering taking on the full-time responsibility of caring for a spouse, parent or loved one with any type of dementia should read this book for an insider’s look at the daunting challenges ahead. Not only are the odd symptoms and behavior of dementia sufferers explained, but also other concerns that caregivers may not think about as important in the earlier stages of the illness, like the extensive medical and personal supplies required, the need for a strong support network offering respite, the backbreaking labor and physical considerations, the importance of geographic location, weather emergencies and transportation issues. Dignifying Dementia offers a helpful guide so that caregivers might recognize potential problems in advance and prepare to eliminate future difficulties.
It was such a treat to participate in the Chicken Soup for the Soul: Family Caregivers book signing yesterday at Barnes & Noble as a contributing author along with Jean Ferratier. I want to thank the Springfield, Illinois Barnes & Noble for hosting this local author event, and I’d especially like to thank everyone who came by to see us over the two hours we were at the bookstore. Jean and I both had the opportunity to discuss and read excerpts from our stories. I feel so fortunate to have my story included in this book, and it was wonderful to talk with other caregivers and hear their feedback on my story. So many people shared their own caregiving stories, and it was a privilege to be entrusted with this personal information. Here are some photos that capture this special event celebrating family caregivers everywhere. Continue reading →
I just found out that one of my stories will be published in Chicken Soup for the Soul: Family Caregivers: 101 Stories of Love, Sacrifice and Bonding, and I’m pretty excited about it! The book will be released in March and include my story titled “Changing My Expectations.” I was just as thrilled to learn that another writer from my hometown of Springfield, Illinois named Jean Ferratier will also be featured in this same book with her story “Dry Her Tears.” What a coincidence that out of 101 stories, 2 of them are from writers living in the same city, especially a small city such as ours. Jean is also the person who encouraged me to submit a story for this book, so I’m grateful to her and happy we are both contributors.
Each year, November is dedicated as National Alzheimer’s Disease Awareness Month. It is an especially significant time for me to reflect on how this disease has changed my life. Anyone who has witnessed a loved one struggle and eventually succumb to dementia is forever changed by this gut-wrenching, heartbreaking, and incurable disease. By its very nature, Alzheimer’s will destroy you as it claims your loved one. It will chew you up and spit you out as you stand by, helpless to stop the progression and inevitable outcome.
The key to emerging from the devastation for me was to find acceptance by determining what I have learned from Alzheimer’s, and then to use that knowledge wisely, both to make me a better person and to help others when possible. I don’t wish Alzheimer’s on anyone, but I do continue to hope that what people find beyond the finality of Alzheimer’s will help them see more clearly and live more purposefully. This is what I have gained from my mother’s journey through Alzheimer’s disease.
Following are a few of the numerous events to be held in conjunction with National Alzheimer’s Disease Awareness Month.
The 16th Annual Memory Loss Conference takes place on November 7-8, 2011 in Springfield, Illinois, and I just registered to attend for the first time this year. I’m looking forward to this as an educational opportunity to learn more about Alzheimer’s disease and dementia from local authorities on the subject as well as nationally recognized experts. The first day of the conference is geared towards the general public, including persons with memory loss, family members, caregivers and others interested in issues related to memory loss. While I previously fell into both the family members and caregivers categories while my mother suffered through Alzheimer’s, now I’m simply categorized as others interested in issues related to memory loss.
I’m particularly interested in the following two sessions from the six offered on the first day of the conference:
The cost incurred by children who are caregivers for their elderly parents is both physical and financial according to the recent Wall Street Journal article Toll of Caring for Elderly Increases. The health problems associated with adult children caring for their aging parents while working and tending to their own families has been well documented: stress, depression, hypertension, diabetes, pulmonary disease, overuse of tobacco and alcohol, and lack of preventative health screenings for themselves. But caregiving has another serious cost, and it directly affects bank accounts by threatening the financial security of those who tackle caregiving duties, not only through lost wages, but also lost pension and social security benefits. The critical factor in this caregiving scenario is that these family caregivers are nearly all over the age of 50 themselves, and therefore do not have the necessary time to make up for their lost earnings before facing their own retirement and health concerns. With an estimated 10 million people over the age of 50 facing this daunting physical and financial predicament (the number has tripled since 1994), the future seems uncertain and dire, especially for women who are much more likely to inherit elder care duties for ailing parents. Continue reading →