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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.

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    ______________________________________________________

    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

    Entries in cognitive decline (1)

    Monday
    May142012

    Sample: Ch. 20: Slowing Down

    After dinner on a Tuesday, I walk the three minutes it takes to get from our house to the large building in the center of our community that serves as a meeting space.

    Thirty of us are here to listen to a presentation about how to support Rita, our one resident living with dementia. Rita has grown harder to understand, and over the past couple of years most of her neighbors have shied away from her, including me. Karen, a neighbor who leads the presentation, trains family caregivers and paid caregivers nation-wide in compassionate, person-directed care. Her father also had Alzheimer’s disease. Beth, another neighbor who has helped Rita’s children coordinate her care long-distance, joins her. A third neighbor and presenter, Adele, has spent a great deal of time with Rita as one of what they call her “care partners.” I’m excited to learn all I can from these women and to perhaps share some of my own experiences.

    “Instead of trying to change the behavior of someone living with dementia,” Karen suggests, “focus on shifting your own expectations or shifting the environment. Look at what works now, their strengths rather than their limitations, and build on those.”

    Adele tells us, “If Rita says something that doesn’t seem to make sense, try to find something that works with it. It’s like a puzzle. You don’t need to have a deep conversation to have a deep connection. Relax with it and don’t worry about it.” I think I can try this. I already try to work around my mother’s odd choice of words.

    “Affirm their reality,” Karen says, “and creatively re-direct them if you need to steer the person away from insisting on something that isn’t a good idea.” Beth shares an example:  If Rita wants a third serving of ice cream at a community meal because she doesn’t remember how much she’s already had, Beth doesn’t try to reason with her. She tells her “We’ll have ice cream at home.” Rita says, “Okay,” and within a few minutes forgets all about it. 

    Have I bent the truth with Mom? Not too often. Instead I try to explain reality as I see it, repeating myself over and over as she forgets what I’ve said. I resist lying to her to make things easier, not only because Mom is not yet that difficult to deal with, but also because I’m used to our honest relationship. Part of me worries that if I start bending the truth with Mom she will catch on and no longer trust me.

    Karen explains that non-verbal communication is very important to people living with dementia. Talk to them at eye level, she says. I wonder if that’s why Mom’s physical therapist and nurse at Woodside crouched in front of her wheelchair to talk to her. I always lean over in front of her, never crouch or kneel, because of my arthritic knees.

    Convey respect, she says. Use a low-pitched voice. Stay calm.

    Karen talks about affirming the reality of people living with dementia. “If they tell you the sky is green, the sky is green. Don’t try to change their perspective.” Do I correct my mother when she says something that’s clearly incorrect? I’m not sure. I could try harder to validate Mom’s ideas and feelings. 

    “Paraphrase what she’s said,” Karen suggests. “Reflect back what you’ve heard to clarify your understanding of it.”

    Adele admits that paraphrasing can be challenging. “When I’m talking with Rita it’s complicated. I have to think all the time.”

    Yes, I find it hard sometimes to follow Mom’s train of thought. I have to concentrate, listen hard. I believe this is one of the main reasons why people avoid talking to those with dementia—the puzzle of their mixed-up language. It helps if you know the person well enough to guess what they are reaching for.

    “One of the things I love about spending time with Rita,” Adele says, “is that I can just be myself with her. Sometimes we worry that we have to act a certain way with people or they won’t like us. With Rita you don’t have to worry about what she thinks of you, because she’s not thinking about you!” She laughs.

    Karen agrees: “It’s freeing.”

    “And when I’m with Rita,” Adele adds, “she helps me slow down and notice so many wonderful things around us. She’ll stop on our walks and study a leaf, or point to a bird in a tree. I call my hours with her ‘the church of Rita.’”

     

    The next day, a Friday, I visit Mom and carry with me what I learned the night before. I decide to see her after work not out of my usual worry and sense of duty, but simply to sit with her, to slow down and enjoy together whatever pleasure we can find.

    Outside, as we sit in the courtyard together, I think of what Karen said last night about helping people with dementia feel useful; often people living with dementia are asked to do very little, to always receive care instead of giving care. I look into my mother’s eyes and say, “Mom, I could really use a hug.”

    “Sure, sweetie!”

    We hold onto each other a long time. I take her hands in mine.

    “You have such strong hands,” I say. “They’re slender but strong.” We lean toward each other, our faces a foot apart. 

    “So do you,” she says as she smiles and caresses the freckles on my forearm. For a moment we look into each other’s eyes.

    “I love you,” she says. 

    “I love you, too.” Though I’ve forced myself to say it before, this time I mean it. I feel calm and relaxed, not wary and ready to flee.

    Mom says, “The two of us…have come…a long way.”

    I smile and squeeze her hand. “Yes, we really have come a long way.” Is she remembering what we used to be like together, how hard we’ve worked over the years to grow closer to each other? I want to cry when she says this. Does she really remember all those years, or is she just saying something polite that she might say to anyone she’s known a long time?

     “Let’s keep going…in that…direction,” she says. She’s still smiling and looking deep into my eyes.

    With this, I think she really does know what she’s saying. And that’s all I’ve ever wanted─“to keep going in that direction.” I want us to grow closer, if only by annoying each other less and enjoying each other more.

    “Yes, Mom, let’s do that. I’d like that.”

    It’s too late to work out any lingering resentments between us, as Mom can’t remember the specifics of our conflicts. So I see no point in hanging on to them. The long-distance affection my mother and I used to share years ago through our letters and phone calls—the affection that, in person, cooled within minutes—now holds steady, for the most part, through our short visits together, warm and full. 

     

    A few moments later, though, Mom starts to squirm. “I’d like to…go in. I think I need to go…” and she points to her crotch. 

    I’m surprised that she can feel the need to go to the bathroom, as lately she hasn’t seemed aware of her bodily needs, but I quickly stand up, circle her around and wheel her back inside to the bathroom in her room. Her new roommate, Edie, is not there, but I see a baby doll on the foot of Edie’s bed. I point it out to Mom. I’m surprised, amused, a bit creeped out. The tiny doll, swaddled in a receiving blanket, looks like a newborn with its red, wrinkled face.

    Standing ready to catch her if she falls, I watch Mom as she lifts herself out of the wheelchair, grabs the walker, and walks stiffly to the toilet. This is the first time I’ve helped with her Depends, the first time I’ve helped her do more in the bathroom than enter and leave. I worry that she’ll feel embarrassed, but she seems quite comfortable.

    When she finishes on the toilet, I grab a dry pair of Depends folded over the handrail next to us on the wall. They look way too big for Mom but I figure they’re better than nothing. I remember reading online that if you are changing someone’s Depends, do so from behind so they can’t see what you are doing and you preserve their dignity. Mom doesn’t seem at all concerned about her dignity. Nevertheless I stand a bit behind her as I lean down to tuck the front half of the Depends through her thighs (“Excuse me, let me just pull this through”), then reach around in front to pull them up to her navel. I fasten the sticky tabs, and Mom pulls up her pants.

    “I don’t like these much,” she says, and I guess that she means because they’re cumbersome, not because she objects to the idea of wearing protective undergarments. The more time I spend with her, the more I can intuit what she means. She zips up her pants, I point her toward the sink and the soap dispenser, and she slowly washes her hands. I remind myself to be patient. I crank down a paper towel and she meticulously dries her hands. “There’s the waste basket,” I say. “Yup, right there.”

    I watch closely as she shuffles with her walker to her wheelchair. I suggest that we go for a ride down the hall to the vending machine: I’ll buy her a candy bar. 

    “Sure!”

    I push her around a corner, down a hallway I doubt she has ever seen.

    Mom twists in her seat to look back at me. “I’m nervous. I don’t know…what’s at the end…of where we are going…and where we came from.” 

    With her words I inhale a sharp breath, and stop for a moment in the empty hallway. All I can do is touch her shoulder. “Don’t worry, Mom. The staff lounge is just down here. We’ll get some candy, and we’ll come right back.” 

     

    Read Appendix B: "Medications Approved to Relieve the Symptoms of Alzheimer's Disease"

     

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