Tag Archives: Relationships

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.  cut flowers

 

 

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

women photo albumReminisce 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. #

 

When caring takes courage

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/

Amazon: http://www.amazon.com/When-Caring-Takes-Courage-Compassionate/dp/1478730536/ref=tmm_pap_title_0?ie=UTF8&qid=1400634987&sr=8-1

 

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

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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 Emotionsimgres-1

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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Filed under Care Partnering, Caregiving, Communication, love, Relationships, Taking Care of Yourself

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.leroy brown

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.”

imgresBarrick 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.

imagesBarrick 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 LoveIf 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.

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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. alz art 3

“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.”

Alz art

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

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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.

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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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