A Place for Mom’s first Camp Reveille winner, Deborah Keys, recently released her first book, which discusses a daughter’s reality of caring for her mother who suffers from dementia.
Navigating dementia and caregiving can be difficult, not to mention emotionally exhausting. When A Place for Mom asked caregivers to submit essay entries into the Camp Reveille “Rest and Recharge” Caregiver Getaway Contest in 2012, Debbie’s honest, yet optimistic essay that discussed her caregiver role for her 83-year-old mother spoke to the judges. Being a naturally bubbly and delightful lady, this former English teacher’s words were charming and positive, despite her extremely frustrating situation. Needless to say, Debbie impressed judges with her entry, and she now offers an intimate and even humorous account of her caregiver experience to share with others.
Debbie discusses her inspiration for her book:
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“I have kept a journal for a good portion of my life for the big and important kinds of things. After my mom moved in after her dementia diagnosis, I realized there was a tough journey ahead and that I needed an outlet — and to find humor in even the challenging situations. This journal made me realize how important it was to share these stories and situations with other caregivers who might feel like they are alone and need to realize that they need to take their own advice.”
Ms. Keys Camp Reveille venture and community interaction with other caregivers made her realize how many people were dealing with dementia themselves. She chose to relay her “mama stories” and found that many could relate. It was through the sharing and finding humor in even the most difficult situations that helped her persevere her mother’s disease.
A common problem amongst Alzheimer’s and dementia caregivers is that they feel depressed and emotionally wrought watching their loved ones transform before their eyes. As disease progresses, they often don’t know their loved ones. Debbie’s unique book title, “Why Do You Think I Call You Mama?” came from a conversation that Debbie had with her mother, Derlene, when Derlene no longer recognized her daughter. Instead of getting frustrated, Debbie approached the situation with humor:
“Mom had a pretty cute sense of humor that even came through when she was in the throes of the disease. One day while in my care she commented that her family ‘had not checked on her in awhile.’ I chose to approach the situation lightly and play along with the conversation by asking mom ‘who her family and children’ were. She listed off my brothers and then noted, ‘There’s a girl, Debbie,’ which was when mom realized that I, the person speaking with her, was her daughter. After all, there was a reason I called her Mama.”
Debbie’s title brings up both the irony and pangs of the disease that is disheartening for caregivers. The notion that even when the disease-sufferer no longer knows their family, there is comfort and familiarity among family. Debbie’s book reminds us that even when there are bad days, levity and perspective can help.
“Caregivers need to know that they are not alone and that others are going through the same heart wrenching experiences. You don’t always hear the humorous stories, but these stories provide encouragement.”
Debbie’s experience at Camp Reveille helped her recognize the need for caregivers to rest and rejuvenate themselves. She remembers how supportive Joan Lunden was to the camp attendees.
“Joan was so very kind to everyone and was very accessible to everyone at the camp. I was very impressed. It seemed to me that she and her staff were the caregivers for the camp attendees. The variety of activities, from yoga and exercise to sitting on the deck soaking up the beautiful ambiance, helped provide some much-needed down time. The food was delicious and the time a gift. The time I enjoyed most, though, was talking to the other caregivers and sharing stories. I wrote my book to offer other caregivers these stories and the realization that there are others’ in the same situation.”
Debbie notes that in order to give care to another person, it is essential to be emotionally, physically and spiritually replenished. If you are totally spent in any of these areas, compensating for the lack only depletes the other areas that much faster. After all, you can only give away what is yours to give.
She discusses how her experience at Camp Reveille was refreshing, renewing and replenishing. Hearing about the frustrations and stresses of other caregivers validated her own feelings of frustration and stress. “Knowing we shared common caregiving experiences — from wandering to finding mail in the freezer — was a huge relief, at least to me. Camp Reveille provided a non-judgmental and safe environment to try activities that stretched my mind, body and soul. From the evening campfire on the first night to the farewell dance party on the last night, your days and nights are filled with whatever you need to rest and recharge.”
Debbie’s spirit was renewed by walking by the lake, strolling through the serene woods and sitting on the deck breathing in the beautiful scenery while catching up on her journal. Camp Reveille not only offered rest, but also gave Keys perspective.
“The vast number of caregivers in America is growing daily,” she relays. “Camp Reveille helped put faces to some of those numbers to translate from head knowledge to heart knowledge. There is a difference, and my hope is that my book reaches and helps others.”
Debbie’s intimate recount of her caregiving venture in her book offers some tips and tactics for other caregivers. She comments, “The bizarre behavior is not unusual when people suffer from dementia. It is not the person you know and love. It is the disease speaking. Caregivers need to recognize this.”
A few main points in Key’s book include:
Keys also offers some practical caregiving tips and advice:
“There were many small things I learned over time that helped me in my caregiver role. For example, I covered all the TV buttons on the remote when I left in the morning. That way mom could only touch volume and channel. I also left her a small jar with banana and peanut butter for snacking as leaving out containers and boxes would create a mess. I put the coffee on a timer for mom as I knew she liked her coffee, and I locked my bedroom door. By providing fewer distractions and controlling the situation, it helped mom enjoy her day in a more controlled environment.”
Key’s book, “Why Do You Think I Call You Mama?” also stresses the importance of getting away, for an evening or weekend. Keys notes that it does take planning. “I’d get my brother or friend to come watch mom and would leave them dinner prepared — because I wanted them to come back… I also would leave a 3-ring binder titled, “Taking Care of Mom” with medications, insurance and all the necessary information for the person left in charge. That way, if anything happened, the person left in charge would have all necessary information.”
Debbie feels that her book offers a means to pass on encouragement and compassion to other caregivers. “I want to validate the emotional struggles and experiences of caregivers, and I hope my book offers some good advice and levity from someone who has been there.”
Deborah Keys is a retired junior high teacher who became a full time caregiver for her mother who was diagnosed with dementia. She wants to encourage, inspire, and provide comic relief to caregivers and wants anyone — especially caregivers and families — who reads this book to feel emotionally validated and comforted and hopes you find useful the tips and tactics she offers.
In her leisure time, Deborah enjoys cooking, reading, playing the piano, entertaining, and traveling. She graduated from Stephen F. Austin State University with a B.A. in Education and now resides in Texas near her family.
Debbie would be happy to mail anyone an autographed copy for $14.00 ($12.00 for book and $2.00 for postage). Readers can also connect with Debbie at: firstname.lastname@example.org.
When her own mother does not recognize her, a daughter is faced with the reality of how dementia has stolen her mother’s mind.
Deborah Keys offers readers her intensely personal journal entries of caring for her mother on a daily basis. With honesty that’s intimate, humorous and raw, Keys shares nitty-gritty trials and triumphs, provides tips for caregivers, while also highlighting a common journey where loved ones can find community, solace and ultimately peace.
Those whose loved ones have descended into dementia, or who care for them, will find help, hope and understanding in this one woman’s story.
Has Alzheimer’s disease or dementia affected you or your loved one’s life? Share your story with us in the comments below.