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      Inside the Dementia
     Epidemic: A Daughter's
     Memoir

     
     
      On Wall Street Journal best seller
      list (May 1, 2015)

     


    One
    of Alzheimers.net's 2014 Top Alzheimer's Books for Caregivers

    Winner of the Memoir category of the 2013 Next Generation Indie Book Awards

    Winner of a Silver Medal in the Health/Medical category of the 2013 Readers' Favorite International Book Awards (and finalist in the Memoir category)

    Finalist, 2013 Eric Hoffer Book Award for Excellence in Publishing

    Winner of an Honorable Mention in the Life Stories category of the 20th Annual Writer’s Digest Book Awards 

    Finalist, 2013 Indie Excellence Book Awards

    Finalist, 2013 Santa Fe Writer's Project Literary Awards Program, Non-fiction category

     

       

     

     

    Inside the Dementia Epidemic: A Daughter's Memoir shares the lessons I learned over 8 years of caregiving at home and in a range of dementia care facilities. I describe not only what I learned about navigating the system, but how I learned to see Alzheimer's disease differently—not as a "long good-bye," as it's often called, but as a "long hello." Through caregiving, my challenging relationship with my mother was transformed, and I learned to enjoy and nurture her spirit through the last stages of dementia.

    Appendixes share facts about dementia that I wish I had known years ago, such as how to get a diagnosis of Alzheimer's disease; what medications are approved to lessen the symptoms of Alzheimer's disease; lesser-known risk factors for dementia; and possible antidotes. I include my favorite resources for caregivers, my source notes, and an index.

    Inside the Dementia Epidemic: A Daughter's Memoir is available in paperback and hardcover, as an e-book for Apple devices, the Nook, and Kindle, and on Kobo.

    Reviews and Testimonials

    Order the Book

    ______________________________________________________

    PHOTOS:

    The photo at the very top of this page is of my mother, Judy, in 2010, smiling up at Suzanne, a massage therapist I hired who specializes in bodywork for elders.  Suzanne massaged her hands, arms, upper back and legs, talked to her, and played music for her.  [photo by Jason Kates van Staveren]

    Right: My mother at her 75th birthday party in 2007, three years after she could no longer live alone. A few days after this picture was taken she fell, fractured her pelvis and needed more care than her assisted living facility could provide. I had to quickly research alternatives.









    In 1996, Judy and her grandson, Andrew, age 1, on the shale beach outside the cottage on the lake in Upstate New York where she lived by herself for 25 years. It's his first visit, and she's showing him the "big lake water" and how to draw on the flat rocks with pencil-shaped pieces of shale. Her worrisome behavior starts around this time, but as her daughter I don't realize what is going on until much, much later.

    Above: My mother, age 74, and I at the cottage in 2006 with her old miniature Schnauzer, Trinka. I can see the stress of those early caregiving years in my face and in my extra weight. Little did I know how much I would learn over the coming years.

     

     

     

     

     

     

     

    Above: Judy, age 79, and me in early 2012 at the nursing home Judy moved into in 2010. Mom lived with advanced Alzheimer's disease and vascular dementia until she passed away in late 2012, but until the end she often shared her lovely smile. 

     

    Join the fight to stop Alzheimer's by 2020:

        

     

    For caregiver support and resources, visit the Caregiver Action Network. (Membership is free if you are a current family caregiver):

                        

        The Purple Angel--a symbol of hope and dementia awareness

    Friday
    Jun142013

    When the End of Life Comes Quickly: Finding Support as a Family Caregiver

    My mother, Judy, passed away in December with advanced dementia, and looking back, I wish I had a “community of care” in place for myself before her sudden decline over four days. As caregivers we think so much about our loved ones’ quality of life that it’s difficult to think about what their death might look like, and how we might want to feel supported as caregivers during our final vigil.

    Over the 8 years I cared for my mother in my home, assisted living, a “memory care” facility, and a nursing home, I knew how important it was to reach out for support as a caregiver. My favorite source of support was the caregiver group at my local Office for the Aging. I thought I was well-informed and prepared for Mom’s end of life—she had a Living Will, and I knew she didn’t want CPR, a feeding tube, or other invasive procedures. I was taken by surprise, however, by the toll her last days would take on me physically and emotionally.

    One day in late November Mom was fine, holding my hand by the nursing home Christmas tree, and the next day she was sent to the hospital at 3 a.m. with difficulty breathing, diagnosed with congestive heart failure. It got worse quickly. After I fed her a pureed breakfast, she vomited and aspirated the vomit, which the nurses in the hospital could not completely suction out of her throat. By the time Mom arrived back at the nursing home she was in severe distress. It took two hours for morphine to ease her breathing and heart rate. (I’m still upset that the doctors and nurses in the hospital did not realize that Mom needed morphine before she was transported.)

    Over the next few days my husband Ben took time off from work to sit with me and drive back and forth between the nursing home and our two teenagers at home. A neighbor in our cohousing village sent out an email asking people to bring meals to our home (which they continued for a week after Mom died). A couple of friends came to keep us company in the nursing home and to say good-bye to Mom, but most of the time Ben and I were alone in Mom’s room. I was too exhausted to make a lot of phone calls or invite others to join us. Hospice, which I arranged as soon as Mom returned to the nursing home, could be there only an hour or two a day.

    Some of the nurses in the nursing home were compassionate and responsive, while others I had to chase down for morphine. I found it particularly difficult to know if what Mom was experiencing was normal or not—if I should worry about the foam in her mouth, the seizures, or the temperature of 105. In her last two days she seemed at peace, but my nerves remained on high alert. The night before Mom died I went home completely spent, and fell into a deep sleep while Ben stayed at her side until 2 a.m. At 8:00 a.m. I got a call that Mom had passed. We drove back to the nursing home to say good-bye.

    Being fully present at a loved one’s deathbed will use every ounce of your physical and emotional energy. Let others know ahead of time that you may need them to come and be with you, to hold your hand, offer a hug, bring food, or take your place at the bedside for a few minutes as you take a break. Perhaps a family member or friend could set up a phone tree for you (or a webpage on Lotsa Helping Hands) so you only have to make one initial call to alert your care community that another critical time for help has arrived. As you invite more friends and family members to support you in those final days, not only are you protecting your own health and energy, you are helping your loved one have a better death.

    Reader Comments (2)

    I went through a similar scenario before my husband and soulmate died...thinking I was informed and ready was a myth..even with my professional background. I am sorry for you, myself, and so many whose end of life is less than peaceful because in part of our medical system.

    June 15, 2013 | Unregistered CommenterMary

    Hi Mary. Thank you for writing a response to my blog post about end of life planning. I didn't see your comment until now, so please accept a belated thank you. Martha

    August 22, 2013 | Unregistered CommenterMartha

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