Normally, Thanksgiving was my favorite holiday, a time our family gathered together at my Kansas City home. But that November, my stomach clenched at the thought of our traditional Thursday evening meal.
My mother had Alzheimer’s and the holiday would be different. I felt alone but of course I wasn’t: there were 15 million family/friend caregivers helping the five million Americans who have dementia.
I’d been through my initial storm of denial and grief. I felt I’d been coping well with Mom’s diagnosis, focusing on offering my father extra support and trying to flow with Mom’s now spotty memory and personality quirks. But a pre-season sadness invaded me in October and I found myself dreading the alleged festivities. How could we have our usual holiday dinner, take our after dinner walks, play Scrabble and Hearts and Charades without Mom’s participation? How could we enjoy going to movies and plays when Mom was having trouble focusing and sitting still? And how would Mom react to the situation: would she feel uncomfortable and out of place? Would Dad feel protective and anxious? And more important, what would we have for dessert! Mom was legendary for her chocolate and butterscotch brownies, date crumbs, and bourbon balls. No store-bought cookies would compare.
As I stewed over the prospect of a depressing Thanksgiving weekend, I remembered the vows I had made: I had promised I would try to stay connected to Mom throughout her Alzheimer’s journey. And I had promised to see the gifts and blessings and fun in the experience.
So I began thinking: if the holiday is going to be different, why not concentrate on making it different in a creative and connective way? Here are some ideas I used to make the holiday work for me.
- Acknowledge my feelings of loss and grief. I wrote them down and shared them with a few friends. Just expressing myself made me feel stronger.
- List what I would miss most during the holiday season. My list included cooking with Mom, eating her brownies and rum balls. I asked my brother, who’s a terrific baker, to make some of our favorite sweets and I set up a place in the dining room where Mom could sit next to me while I chopped mushrooms and peeled potatoes.
- Create an activity to give our holiday a new focus. We created a simple holiday scrapbook called, “The Little Kitchen that Could,” complete with a family photo shoot and a playful script.
- Appreciate my blessings. We started our Thanksgiving meal by asking everyone to name one thing he or she was grateful for. I continued my gratitude practice throughout the holiday season, either alone or with others via telephone and social media.
- Take extra good care of myself. I treated yourself as I would a friend who’d suffered a deep loss.
- Set up a lifeline. “I’m worried about melting down,” I told my friend. She urged me to call anytime for encouragement and reassurance.
These six steps helped me enjoy my holiday and appreciate my mom just as she was. Our holiday was “different” but it was also wonderful.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
Dancing is like dreaming with your feet! ~Constanze
During my mom’s dementia journey, movement often inspired and connected us. Here is one of those magical moments, excerpted from my book, Love in the land of Dementia: Finding Hope in the Caregiver’s Journey. The story is set in my mom’s memory care unit.
Rochelle, the activity director, sticks in another tape and soon Stardust is playing.
“Let’s dance,” she says, motioning everyone to stand.
Mom looks up and I offer her my hand.
“Want to dance?” I ask her.
“Want to dance?” I repeat, making a swirling motion.
“What else,” she says, standing up.
My parents have danced to this song many times, my mother coaxing my father onto the dance floor. I hold hands with Mom and move back and forth to the music. She laughs and does the same. I twirl her, and she walks around in a jaunty little circle. For a moment, her energy and charm have returned. I feel like I have found my long-lost mother. If my father were here, he would not be surprised. He is certain she will return to him and takes every word, every gesture of affection, every smile as a sign of hope.
“Hope is everything,” Dad told me just last week. “I find something hopeful and I milk it for all it’s worth. If it doesn’t work out, then I search for something else. Otherwise, I am in despair.”
I twirl my mom again. It is actually our first real dance together …
I loved my dance with my mother for the deep connection it gave me. My friend Natasha Jen Goldstein-Levitas reminds me of the other benefits of movement. Natasha is a Philadelphia, PA based Registered Dance/Movement Therapist (R-DMT) and Reiki Practitioner who does heartfelt and creative work with those living with dementia. She writes: “Among the creative arts therapy modalities, dance/movement therapy (DMT) offers the opportunity for individuals to express themselves, regardless of functional level. DMT engages the sensory systems and stimulates the physical, emotional, and cognitive areas of functioning. This movement is also a wonderful outlet for care partners.”
Samuel Beckett sums this up, He says, “Dance first. Think later. It’s the natural order.”
To read Natasha’s blog, please visit:
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
I wasn’t quite sure I wanted to lie on the floor on that large piece of white paper, but my first grade teacher did not give me a choice.
“Debbie,” she commanded, pointing sternly to the butcher block paper stretched on our school’s aging linoleum. Gingerly, I lowered myself to the ground, moving my arms away from my sides as instructed. Then two classmates traced around me with crayons. Our assignment that day was to draw in our features and our clothes. In essence, we were to clone ourselves using only primary colors.
Years later, at a self-exploration workshop, I again had to pour myself onto a sheet of paper and allow myself to be outlined. This time I was to draw or write in fears and beliefs along with accomplishments and dreams. This was definitely more fun than grade school and infinitely more challenging.
Just recently, I read about a “blank slate” exercise that I really liked. The booklet You Can Help Someone Live Fully With Dementia: A Guide for Family and Friends, suggests that we take an outlined profile and write down all the ways we might help a person living with dementia enrich his or her life.
I really resonated with this exercise. I also thought this was a beautiful idea to do for friends and family as well. How meaningful to think about ways to improve the lives of those close to us.
This brief book, which is accompanied by an inspiring DVD, offers simple tips to help us increase emotional connections during the dementia journey. Ideas include being enthusiastic and encouraging, thinking creatively when suggesting activities, focusing on the individual’s desires and strengths, and adopting a “no wrong way” spirit.
This succinct and compassionate guidebook reminds us of the importance of being guided by those who are living with dementia. The authors, Karen Love and Elia Fernia, are advocates who are making a difference in dementia care throughout the country.
Karen Love and Elia Femia, PhD are gerontologists and nationally known experts in dementia care. They are the co-founders of FIT Interactive, LLC. fitkits.org
For more information about living fully with dementia, please visit the Dementia Action Alliance www.thedaanow.org
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
We all know that wrenching feeling of wanting to support our friends who are immersed in being care partners but not understanding how best to help. Many of us know the feeling of being exhausted care partners and not knowing just how to ask for the help we need.
Mara Botonis, author of When Caring Take Courage, created a list of meaningful tips, captured in a note to friends from a care partner. I really appreciate her empathetic yet practical outlook and wanted to share a few of her ideas with you.
The Present in the Present
I so appreciate you wanting to help me, I don’t always have time to read a book, watch a movie, or accept your generous invites to restaurant meals or spa treatments. The best gifts save me time and energy and are a treat I can enjoy at home without arranging care. I would love a visit that includes a pre-made dinner we can share. Any of these thoughtful gifts would lift my spirits: a CD with my favorite songs, a favorite dessert or snack, a chance to play a favorite game with you, a soft cuddly blanket, or fresh flowers.
Write me a note or an email. I can’t always talk on the phone or devote the time I’d like to an in-person visit. I’m usually only “free” to socialize when my loved one is sleeping and even then, I am alert to his needs. If you write to me, I can read it when I have time to truly enjoy it.
Reminisce with me. I willingly and lovingly put another person first for most parts of my every day. Sometimes I feel like big parts of me get lost so please remind me of our earlier times together. You may be the only one I get to do this with.
Please Stay in Touch
You don’t have to worry about saying or doing the right thing. I don’t always know what that is either. Please just keep trying. Don’t avoid calling or coming over because you may be feeling uncomfortable or unsure. I feel that way too sometimes and I’m here every day. Please don’t forget about me. I’m still here. I still love you. We still need and want you in our lives. Please reach out. There isn’t any way you can interact with me that would be unwelcomed or wrong. Just keep trying. #
After thirty years working in healthcare throughout the United States, Mara’s life was forever changed when a close family member was impacted by Alzheimer’s.
Please visit her website:
I have to say, I wasn’t really in the mood to read a memoir about the Alzheimer’s journey. But a friend recommended The Long Hello and I sat down to leaf through it. Four hours later, after both tears and laughter, I had completed the lyrical journey, an artful weaving of rational recall and poetic pouring. I could see and feel Cathie Borrie, the author, and I felt I knew her fanciful, magical, distracted, needy, exhausting, interesting mom. Cathie’s honesty and her ability to capture the intricate connections inherent in this dementia journey were like walking a familiar road through a mysterious jungle. This book is a burst of beautiful writing anchored by deep poignancy and meaning.
I also really enjoyed Martha Stettinius’ Inside the Dementia Epidemic: A Daughter’s Memoir. Meeting Martha and her mom on the pages of her searching memoir was like rediscovering old friends. I identified with Martha and I was also caught up in her story. I was moved by her struggle to truly care for and take care of her mother, while still preserving her soul and her family life. Martha did a great job of creating a compelling and readable story, while offering a wealth of practical tips and resources.
Several weeks ago, I wrote about my first visit to an Eden alternative home, the magical Sierra Vista in Santa Fe. The founder of Eden Alternative is Dr. Bill Thomas, who is one of the pioneers in making dementia care more home-like and person centered. His book, Life Worth Living: How Someone You Love Can Still Enjoy Life in a Nursing Home – The Eden Alternative in Action, is rich with ideas for care facilities. Home care partners can use his concepts to make their household even more creative and welcoming. As a bonus, Atul Gawande wrote about Dr. Thomas, in his fascinating book, Being Mortal. You’ll be inspired by Dr. Thomas’s innovation and his tenacity.
It’s not often that you read a book about dementia care and laugh. But when Mara Botonis wrote about carefully laying out supplies for a creative arts project, only to have her loved one staring out the window, then studiously plucking lint from his sweatpants, I had to laugh. I could see my beautiful mom doing exactly the same thing. Mara’s book, When Caring Takes Courage: A Compassionate, Interactive Guide for Alzheimer’s and Dementia Caregivers, is all about making the most of our moments together. Mara knows about dementia from her career in senior living and she has taken the personal dementia journey with her beloved grandfather. She orchestrated the book to make it easy for the exhausted care partner to problem solve and get instant help. She offers activities and projects for a range of abilities and situations.
What books are spurring you onward these days? I’m immersed in writing my new book, tentatively titled Creativity in the Land of Dementia, so I’m focused on the topic in all its forms. The great news is that there are so many amazingly imaginative people out there, making the world a more connective and creative place for those living with dementia, their care partners, family, and friends. Which means, making the world better for all of us.
Wouldn’t it be lovely to nourish and nurture ourselves at the same time? My friend Lisa Everett Andersen is a clinical pharmacist and a board-certified clinical nutritionist. She believes how we eat impacts our nutritional well-being. Her ideas have helped me maintain my energy and savor my food, even when I’m stressed and certain I have no time to spare.
- Give thanks. Scientific studies show that blessing the food has a physical impact, raising its vibrational energy level and improving the way you receive the nourishment. Before you take a bite, you can give thanks to the plants and animals, and to those who grew, harvested, and prepared the meal. You can also honor yourself and give thanks for your own role in procuring, preparing, and serving.
- Sit up straight. No one wants a kinky digestive tract! Proper posture takes away the twists and turns and aids in digestion.
- Make the most of your dining (or snacking) experience. Slow down and bring your attention to the food. Notice its color, texture, and aroma. Take a bite, hold it in your mouth, and truly experience the taste. Of course, the primary reason you eat is to get energy to the cell’s mitochondria. But you also eat for pleasure. Chewing your food well is a crucial first step for digestion and a great source of pleasure. When the food is on your tongue longer, you better appreciate its deliciousness and you are sooner satiated.
- Boost Your Flagging Energy with a Shot of H2O. When your energy falters and flags in the later afternoon (or even sooner), dehydration is the most common culprit. Get out your purified water and drink deeply. This magical liquid doesn’t just lift up your energy—it also hydrates, cleanses, detoxifies, and alkalinizes your body.
For more about Lisa and her work, visit obrienrx.com/
“Did you remember to pack my medication?” I ask Ron.
We are sitting in our dining room, eating breakfast before taking off on a trip to the Black Hills.
“I did,” he says, swallowing the last bite of his omelet. “Do you need any right now?”
“Maybe just a small dose.”
Ron dashes upstairs to his secret cache of very important stuff and extracts the vital substance. He returns and hands me a small chunk of rich dark chocolate. This is my self- prescribed treatment for many of life’s challenges, both at home and on the road, including craving sweets, sour stomach, homesickness, and worry.
For years, I’ve felt dark chocolate is important. But I didn’t understand how vital it really is until my brother Dan generously sent us a copy of Rebecca Katz’s new creation, The Healthy Mind Cookbook. Rebecca is an accomplished chef, author, national speaker, and director of the Healing Kitchens Institute. In this intriguing cookbook, she includes a glorious piece of prose she titles The Culinary Pharmacy, where she cites brain boosting foods and their healthy properties. The triumphant sounds of the Hallelujah Chorus seem to envelope me as I read the words “Dark chocolate” in her healing list. Avocadoes, cashews, mint, lemon, peaches, and strawberries, are among the other fabulous foods that boost our brains while managing to taste delicious. I am so impressed with the Culinary Pharmacy and with Rebecca’s friendly recipes that I reach out to her, to see what simple tips she has for busy care partners.
Though she is in the middle of a book tour, training a new puppy, and meeting a book deadline (her newest book on Soups is coming out in 2017), she graciously agrees to talk to me. Her father lived with dementia and the topics of brain healthy eating and using foods to engage with people are very dear to her.
First I give her a short quiz, which she aces.
“Guess what section of your book I read first?” I ask.
She ponders for about two seconds, then says, “The Sweet Bites section.”
“I earmarked the Chocolate Cherry Walnut Truffles,” I confess.
“I took these truffles with me when I testified in front of a White House committee on dementia and food,” she says. “I wanted people to understand that we all need to experience healthy and flavorful foods.”
She tells me how preparing and cooking interesting foods together can help care partners stay engaged and connected. (For more details on that interview, please wait patiently until October 2016, when my new book on dementia and creative arts emerges. I’ll feature experts on cooking, music, gardening, storytelling, arts, and more!)
After a heartfelt conversation, Rebecca makes a very sweet gesture. She invites me to include the famed Chocolate Cherry Walnut Truffle recipe. She also gives me a tip for instant gratification.
“Instead of cooling the chocolate mixture for two hours before roll them into truffles, you can stick them into the freezer for 15 minutes. (After they are rolled and ready to eat you can store leftovers in the freezer)” Which is just what Ron and I do. And they are absolutely so healing and mouthwatering that I am considering adding them to my emergency “medications” list.
CHOCOLATE CHERRY WALNUT TRUFFLES
MAKES ABOUT 20 TRUFFLES • PREP TIME: 15 minutes • COOK TIME: 21/4 hours or 15 minutes if you place the chocolate mixture in the freezer.
My dad, Jay, had this delightful habit; whenever you told him something that struck his fancy, he’d
roar, “That’s FANTASTIC!” and gleefully clap his hands for emphasis. This was doubly true if you
told him he was getting chocolate for dessert. Jay never met a piece of chocolate he didn’t like, and
I have a feeling that just hearing what’s in these truffles—dates, cherries, and walnuts, smothered
in chocolate, rolled in coconut and curry—would’ve given him cause to offer up a standing ovation.
Studies suggest walnuts may boost memory, while chocolate, as we all know, is the ultimate mood boosting
agent. One bite of this dessert and you’d be hard-pressed to feel any stress.
2 tablespoons boiling water
2 ounces dark chocolate
(64 to 72% cacao content),very finely chopped
1/2 cup walnuts
1 tablespoon unsweetened cocoa powder
1 cup pitted and halved Medjool dates
1 teaspoon vanilla extract
1/4 cup finely diced dried cherries
2 tablespoons shredded coconut
1/4 teaspoon curry powder
Stir the boiling water into the chopped chocolate and let it stand for 30 seconds. Using a small whisk, stir until the chocolate is completely melted and glossy. Coarsely grind the walnuts in a food processor, then add the cocoa powder, dates, vanilla, and 1/8 teaspoon of salt, and process for a minute. Then add the chocolate mixture and process until smooth, another minute. Transfer to a bowl and stir the cherries into the chocolate mixture.
Cover and chill for approximately 2 hours, in the refrigerator or 20 minutes in the freezer until firm. On a plate, mix the coconut, curry powder, and a pinch of salt. Scoop up approximately 2 teaspoons of the chilled chocolate mixture and roll it into a smooth ball between your palms, then roll it in the curried coconuts to coat. Repeat with the remaining mixture, then place the truffles in an airtight container and chill thoroughly before serving.
COOK’S NOTE: If you want to give the truffles a golden hue, toast the coconut in a 300°F oven for 10 to 15 minutes. For a more distinctive taste, add another ¼ teaspoon of curry powder.
To learn more about Rebecca, her books, speaking, and to get great tips on healthy foods, please visit her website at Rebeccakatz.com
Psychologist Don Wendorf wrote Caregiver Carols: an Emotional, Musical Memoir to help other caregivers cope with their feelings and to help himself. Writing was cathartic for Don and it offered him insight and understanding into his caregiving journey. Don says, “I always encouraged my therapy clients to keep a journal and I have now experienced for myself just how helpful this is. The whole endeavor of creating something is very life-giving and essential.” Here are a few tips for caregivers from Don:
Take care of yourself the best you possibly can. Do as much as you can that nurtures your body, soul and mind. Exercise like a fiend. Go out with friends. Do creative stuff. Feed your faith. Avoid burnout at all costs. Seek out, accept and ask for even more help than you think you need or want.
Reach Out for Feedback and Support
Rely on people you trust to give you feedback about how you’re doing and if you’re looking burned out. They may be able to see what you can’t or won’t. Talk to other caregivers who know this path and use local or online support groups. Express your feelings to others and let them support and comfort and care for you. Man, it feels good.
Let go of perfection and forgive yourself and your caregivee when you goof up, which you ARE going to do.
Explore and Express Your Emotions
Look beneath your anger and see what layers of emotion it may be covering up: anxiety, ambivalence, fear, sadness, resentment, helplessness, hopelessness, depression, remorse, guilt, regret, loneliness, neediness. I think the biggest for me was GRIEF: I was slowly losing the love of my life. Express your feelings. There is absolutely nothing unmanly about it and you are then less likely to use anger as a blanket emotion. So, Caregiver Guys: Man Up!
I started my gratitude practice as my mother was wading into dementia, as a way to stay connected, compassionate, and sane. The more I notice the good things, the happier I seem to be. I really resonated with this blog from my friend Karen Rowinsky and I wanted to share it with you.
Making a List of What’s Going Right
From Guest Blogger Karen Rowinsky
Can’t catch a break?
Nothing seems to be going your way?
If you are having one of those days, weeks, or months, this tip is for you.
Instead of reciting to yourself, or others, the list of events that are stressing you out, try documenting the things that are going right.
Start with real things that are going right like:
- Even though my head hurts, my feet don’t.
- I don’t know where the mortgage payment will come from but at least no one in the family is sick.
- My spouse is really getting on my nerves but at least I know he or she will be there in a pinch.
- Stress at work is getting me down but it’s not raining and I can get outside for a breather.
Once you have gotten some “at leasts…..” on your list, then begin adding things that are positive or funny:
- I have good friends.
- My dog loves me.
- I have food to eat today.
- I’m having a good hair day.
- No one has “unfriended” me on Facebook lately.
I’m not making light of your troubles. I am suggesting a way that you can get some relief during a time that is challenging. Self care even for a few minutes is better than none. #
Karen Rowinsky, LSCSW, is a licensed clinical social worker.
I met Mary O’Malley when I interviewed her for an article in Natural Awakenings Magazine. She inspired me then and she continues to inspire me. I am honored to share an abridged version of her post with you.
Trusting The Loss Of Your Identity
From Guest Blogger Mary O’Malley, author of What’s In the Way IS the Way
A friend of mine lost her husband about a year ago. She was his caretaker for many years, and before that, she cared for her ailing parents. She feels like she doesn’t know who she is anymore and is trying to figure out what she is supposed to be doing next. She feels like her identity has been taken away. I believe just the opposite is happening. Life has taken away the caretaker role so she can get to know who she really is.
I too have experienced what it is like to have the old identity ripped away. It feels like a butterfly whose wings are wet and cannot move. Often times our self-worth is tied to how much we accomplish or how much we can get done. When part of our identity is taken away from us, it is painful and scary. And our poor little mind goes crazy because it has always found a sense of safety through the illusion that it is in control. The mind is a tool for maneuvering through reality, but it is not reality.
I believe Life is preparing us for being birthed back into the vast spaciousness of who we truly are. But, it can be confusing and scary for the ego. As the Tibetan Lama Chögyam Trungpa Rinoche says, “If there were no confusion, there would be no wisdom. Chaos should be regarded as really good news.” When we lose a part of our old identify, there can be so much confusion and grief that it feels like death. But, actually something new is being born. Remember that, although birth is wonderful, it is not neat and pretty. A human birth has pee and poop and blood, and it is painful. So it is important to do our Lamaze breathing, whether we are birthing a child or Life is birthing us! We can resist this process, or we can recognize that Life knows what it is doing as it takes this away and that away.
The next time you feel challenged, try asking Life for help by saying, “Help me through this passage, and show me how to see what you are showing me so I can be healed to my core.”
To read the entire blog, visit: http://www.maryomalley.com/2015/04/05/trusting-the-loss-of-your-identity-2/
To be further inspired by Mary and her work, visit: http://www.maryomalley.com/books/