Posts Tagged ‘Relationships’
Expanding My Definition of Love
Love comes in so many magical guises. My journey with people who have Alzheimer’s has expanded and deepened my understanding of love. Here are some insights from others.
My friend Vicki always inspires and teaches me. She has early onset Alzheimer’s and her outlook is an embodiment of grace and spirit. She writes: “I have lost both friends and family members since I have dementia. Some people are just so uncomfortable that they just cannot bear to see me go down hill. I have lost a very good friend who just can’t seem to handle it. I know that these people love me but they do not have the emotional fortitude to see the daily loss. You will find out who really loves you when you get dementia because these are the people who will be there for you when you need them.” — Vicki Stoecklin, Kansas City, Mo, retired designer
The True Meaning of Unconditional Love
Linda Fisher is a tireless advocate and a caring person. Her words really move me. “Caring for my husband Jim taught me the true meaning of unconditional love. I became fiercely protective of him and learned to love him ‘as is’ without looking back on the man he had been or forward to the man he would become. My love for him continued to grow throughout the ten years of his dementia, as he became dependent on me to be his advocate in all aspects.” — Linda Fisher, Sedalia, Mo, retired office manager, Central Missouri Electric Coop http://earlyonset.blogspot.com Early Onset Alzheimer’s: My Recollections, Our Memories (2012)
The Full Range of Emotions
Kelly Sheet, founder of the SpunkyCaregiver, offered these deep insights: “I have learned that love transcends any words and appearances. When someone has dementia, love is shared through energy and feeling. You can be vulnerable with people who are living with dementia. And it is a relief to be so open. Day-to-day we are expending energy to protect ourselves from saying too much or too little or the wrong thing. The great gift of loving people with dementia is that you can let go of those ideas, experiment with what a full range of emotions actually feels like. Without being judged, you can laugh spontaneously at some goofy moment, dance with abandon or hold hands with a stranger. Loving people with dementia helps me to feel alive. The hundreds of seniors I have known over the years have really taught me how to love more freely.” — Kelly Sheets, Founder, Sisters, Or, www.TheSpunkyCaregiver.com,
Every person teaches us more about love.
Deborah is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Learning about Love through the Dementia Journey
This month, I’ve been asking myself and others, What have you learned about love from your dementia journey? Here are some of the profound answers:
I learned that it is redefined. I loved my mother as my parent, and then learned to love her as a child. And I would not trade that experience for anything. Pamela J. Van Ahn, Executive Director at Caring Together in Hope, Inc., Atlanta, GA
I have learned that love remains, even as memory fails. Long after your name is forgotten, there are still frequent glimpses of recognition that are very meaningful. The Alzheimer’s patient does not become “a different person”. They are much more “still there” than easily meets the eye. With Alzheimer’s disease, things that have emotional context are remembered the longest, and love is a strong emotion. Max Wallack, research intern in the Molecular Psychiatry in Aging Laboratory at Boston University School of Medicine, Boston MA.
I have learned so many lessons regarding love through my mothers journey with dementia. Here are just a couple of them. There are multiple levels of unconditional love. Each one is more precious and runs deeper then the next. “Letting Go” of our need to control is one of the most loving things we can do for a person with dementia and ourselves. Allowing a person with dementia to be in a loving respectful relationship, even if it might be with someone unexpected, is a gift to all and does not mean they love us less. Love runs much deeper than a name. We need to stop quizzing a person with dementia to check if they know and love us. A name has nothing to do with the bond and connection between two souls. Lori La Bey, Founder of Alzheimer’s Speaks , St. Paul, Minnesota, www.AlzheimersSpeaks.com
Deborah is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Appreciating the Power of Love
“How long have you been together?” the younger couple asked Ron and me.
“Twenty-two years,” we answered.
“Wow!” they said. They’d been in love for seven months and our decades-long romance must have seemed exotic and slightly unbelievable.
“What are the secrets of a good relationship?” they asked. “Please share your wisdom.”
First, Ron and I basked in the idea that two people believed we possessed actual wisdom! Then we shared our insights.
How We Learned about Love
Our insights came from growing as individuals and as a couple during our wonderful long relationship and from earlier relationships that had helped us become our true selves. We also learned from watching our parents maintain their relationships in the face of dementia.
When Ron’s father Frank was in a memory care unit, Ron’s mom Mollie told her husband, “I love you so much.” Frank replied, “Not as much as I love you!.” Those were some of Frank’s last words and that sentence stayed with Mollie through and beyond her grieving.
During my growing up years, my father was circumspect in declaring his love for Mom. But when she slipped into dementia, Dad showed me what a true romantic he was. He treated her like he was courting her; he showered Mom with compliments and kisses and frequently he expressed his love for her. Even when she could no longer talk, she still enjoyed her favorite foods—he faithfully fed her sliced strawberries and chocolate candies.
Love Me Tender, Make Me Laugh, Always Have My Back
My parents were my role models and I also learn an enormous amount from the couples I interview every week for the love story column I write for the Kansas City Star Magazine. Here are some of the qualities people most love about their life partners and spouses.
Loves me just as I am
Takes care of me/Always has my back
Makes me laugh
Shares my values/ Complements me
Works hard/ Is honest and reliable
Always puts other people first/ Always puts me first
Inspires me to be better/ Appreciates me
Love Lights the Way
Some months ago, Oprah had author, visionary and cultural mid-wife Jean Houston on her TV show. “What do you wish people knew?” Oprah asked Jean.
“I wish people knew how powerful love is,” Jean answered.
That was one of the grandest lessons from my journey with my mom through her dementia: the power of love. Her love lasted all her life, far beyond her memory of things and people. Her love was a spark that lit up her life and mine.
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The Marvels of Movement
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.
“What?”
“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:
http://blog.adta.org/category/creative-arts-therapy/
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Four Ways to Support Care Partners
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
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.
Share Memories
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:
Website: http://www.whencaringtakescourage.com/
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Four Riveting Reasons to Wield the Mighty Pen
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:
Nurture Yourself
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.
Jilt Perfectionism
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!
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Timeless Tunes that Transcend
“It’s really a very simple program, but the results are unbelievable. You watch the film Alive Inside and you think those are just the reactions they chose for the camera, but we really do see instant and unbelievable results from many of those we work with.” Linsey Norton
Barrick Wilson of Wichita, Kansas, uses music to connect with his beloved wife Kristi.
Kristi showed the first signs of dementia in 2004, when she was only 60 years old. She was diagnosed in 2008 and three years later, Barrick took early retirement so he could care for Kristi fulltime. There were plenty of tough times as Kristi’s disease progressed and music helped ease the issues. Often Barrick took Kristie for a ride and they’d listen to favorite songs as they tooled along.
“Bad, Bad Leroy Brown was one of her favorites,” Barrick says.
In the afternoons, they’d sit on the sofa and listen to Golden Oldies together, both singing along. Then Barrick learned about the Roth Project: Music Memories;” (which is similar to Music and Memory) and he signed Kristi up, working with the Central and Western Kansas office of the Alzheimer’s Association.
“I purchased a boxed set of Rogers and Hammerstein’s Broadway musicals, records her parents had listened to when Kristi was growing up,” Barrick says. “I included Jim Croce and Kristi’s grandmother’s favorite hymns.”
Barrick worked hard to develop a playlist that keyed in on Kristi’s emotional memories; volunteers from the Alzheimer’s Association helped load it onto an iPod. Then Barrick had the pleasure of sitting next to Kristi and reveling in her beautiful smile when she put on headphones and heard Some Enchanted Evening.
“The music is a calming influence,” Barrick says.
Kristi is one of a couple hundred people enrolled in the Roth Project through the Central and Western Kansas office of the Alzheimer’s Association.
“Our staff offers counseling services to care facilities and to families as to when and how to use the iPod, “ says Linsey Norton, the Association’s Program Director. “We also help care partners notice behavioral cues that allow them to reach for the iPod headphones instead of the anti-anxiety medication. We are working with chapters nationwide to help them develop iPod therapy programs for families in their communities.”
Music helped Kristi when she needed to transition to a memory care unit. The staff offered her headphones and her favorite songs several times a day. Kristi got up and danced when Leroy Brown came on.
Barrick is a pianist and has also incorporated the songs he used to play for Kristi when they were dating. During their courtship, he played the piano in her parents’ living room. Now he sits in the facility’s dining room, his wife by his side, and he plays I’m in the Mood for Love, If I Loved You and My Funny Valentine. These classic love songs transcend rational thought and create an engineering marvel, a bridge that connects Barrick and Kristi.
Barrick shares this advice for care partners:
- Find out as much about the disease as you can. Read, watch videos, become friends with the Alzheimer’s Association and listen to their advice.
- Take your time putting together a playlist that will trigger positive emotional memories for the person living with dementia.
- Be prepared to join the person with Alzheimer’s in her world. It’s like living in an improv theater; you don’t know what’s coming next.
- Take care of yourself. If you need help, ask for it.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Using Alzheimer’s Art to Lift the Heart
Art enables us to find ourselves and lose ourselves at the same time. Thomas Merton
“Alzheimer’s is scary and art isn’t,” says Marilyn Raichle of Seattle, WA.
Marilyn’s mother Jean discovered her inner artist when she was a mere 89-years-old. Jean had never painted before: when she was growing up on a farm, art was considered childish and frivolous.
Initially, when Jean developed memory problems, she didn’t turn to art. But after Jean’s beloved husband died, Marilyn took her mom to a painting class sponsored by Elderwise, a Seattle-based non-profit that focuses on creative and spirit-centered care.
At first, Jean thought the idea was stupid. But Marilyn noticed how happy her mom was after art class. And Jean’s paintings were good. To honor her mom, Marilyn put together a calendar featuring Jean’s work. So many people commented on the delightful, whimsical quality that Marilyn knew her mother possessed a special talent. She began printing greeting cards graced with her mom’s paintings. She uses the cards to raise awareness for Alzheimer’s.
“Art is a creative way to get people to think about Alzheimer’s,” Marilyn believes. “While the prevailing narrative about dementia tends to focus on sorrow, pain, and loss, my mother’s art tells a different story. One look at her paintings and you see a mind at work, inhabiting a life of creativity, purpose, and joy.”
The Art of the Artist with Alzheimer’s
“Mom is the happiest woman I know,” Marilyn says.
Her mother has been distilled to her essence and Marilyn enjoys being with her.
“Through this dementia journey, my mom has taught me to be patient,” Marilyn says. “She’s changed how I feel about Alzheimer’s and she’s allowed me to relax and not take things so seriously. Mom is teaching me about taking joy in life.”
Marilyn wants to make the Alzheimer’s conversation life affirming, to inspire people to think creatively about senior care.
Meanwhile, though Marilyn’s had a vibrant career working in the arts and organizing arts festivals, she describes herself as a “terrible painter.” She hopes to relax enough to be able to paint with her mom.
Her mom may be an excellent artist, but she is a humble woman. When Jean is praised for her artwork, she laughs and says, “I must have gotten this talent from your father’s side of the family.”
The purpose of art is washing the dust of daily life off our souls. Pablo Picasso
Visit Marilyn’s blog: www.theartofalzheimers.net
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Unwrapping a Halloween Surprise
Do you remember trick or treating as a kid, racing down the street, dressed as a superhero or a princess or a witch, eager for treats? When I was growing up, I loved the freedom and surprise of that holiday and I continue to love the scintillating spookiness and dramatic dress of the holiday. Here’s a story about a Halloween gift I received in a memory care unit. Click here if you’d like to watch a video of the story or read on, if you prefer the written word. Either way, I hope you’ll “treat” yourself right this October 31.
Warmly,
Deborah
My Caregiver’s Two-Letter Halloween Treat
On my mother’s last Halloween, her memory care unit held a party. Pam, the nurse, brought a basket brimming with hats, shawls, and scarves. Pam set a floppy white hat on Mom’s silvery curls and draped a lacy purple shawl over her shoulders. In her new adornments, Mom looked both puzzled and happy.
But during the “treat” portion of the Halloween celebration, which featured M & M’s and chocolate chip cookies, Mom’s smile was unambiguous. All her life, Mom had adored sweets and her Alzheimer’s had not dimmed her enjoyment.
Then small children paraded through the facility, dressed as princesses, witches, super heroes, and ghosts. Volunteers handed the residents wrapped tootsie rolls.
“For the children,” they said.
Mom smiled at the adorable kitty cats and pirates who chanted “Trick or treat,” in wispy voices, but she did not relinquish her hold on the sweets; she did not share her candy.
“Mom, would you like to give the children some of your candy?” I asked as my mother gripped her treasure.
“No,” she said.
No. The word floated through my mind and I gazed at Mom, my mouth open, my mind euphoric. Perhaps I should have been chagrined at her selfishness but instead I was thrilled that she had actually responded to my question. It was the closest we’d come to conversation in weeks. I laughed with delight. Mom laughed.
For that moment, we were two women, laughing at ourselves, laughing at life, simply laughing. For me, it was a most wondrous and unexpected treat.
*****
Please share one of your unexpected treats.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Four Reminders to Enjoy the Moment
Every week, I have the joy of interviewing a couple and learning their love story. We talk about where and when they met, what they like about each other, and how they stay connected during life’s chaos and challenges.
Recently, I talked to a couple who met in their late seventies. Both had lost their spouses and both were amazed to fall in love again. When I asked how they kept their relationship strong, she answered, “Because of our age, we know we don’t have that much time left to be together. We enjoy every moment of every day.”
Since that conversation, I have thought often about her words: What would it be like to truly appreciate every moment? What would it be like to completely appreciate each person I spent time with?
Being present and appreciative were two of my goals when I spent time with my mom in her later years. One moment, I felt connected, holding Mom’s hand, sitting right next to her while pointing out interesting pictures in a magazine, and the next moment her head would be lowered, her energy drained and I felt alone and sad. But of course, I wasn’t alone; I was right next to my mother, still holding her hand. My task was to enjoy that quiet minutes as much as the time that Mom was interacting with me.
“Enjoy every moment of every day.” These quotes echo that important reminder .
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.