Posts Tagged ‘Relationships’
Creating Community for Optimal Aging
Even before my parents moved from Memphis to live near me in Kansas City, they were part of my social circle. We always invited friends to family holidays and I often hosted gatherings when my parents visited. I wanted them to know my friends and vice versa. When they finally moved because of Mom’s increasing memory issues, they had a small community of people who already knew and cared about them.
So I was very interested when I read Martha Stettinius’ thoughts on Aging in Community. Martha lives in a co-housing setting in New York and knows the benefits first-hand. I wanted to share some of her insights.
From Martha Stettinius, author of Inside the Dementia Epidemic: A Daughter’s Memoir
How does aging “in community” differ from aging “in place”? And how can we age “in community” no matter where we live?
Many boomers have witnessed their parents’ struggle with long-term care and they want an alternative to aging by themselves at home and overtaxing family members, or to being placed in a large facility. They seek a network of mutual support among friends, family, and their community, a network that allows them to help others now, and receive help in the future.
Aging in community can mean living in an intentional community such as in cohousing, or within a network of neighbors who volunteer to help each other, such as the Beacon Hill Village in Boston. Building this community means finding or creating the places and relationships that can sustain us as we grow older and sticking by friends who are living with frailty, dementia, or a disability.
I have lived in cohousing with my family for 16 years, and believe that if we age in community we are more likely to remain healthier longer, stay in our own homes longer, and appreciate the gifts of giving and receiving care. We are more likely to accept our vulnerability and understand that asking for assistance and companionship is not a weakness.
We can also age in community in a facility, if it respects and empowers both elders and professional caregivers and fosters close relationships between staff and residents.
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Martha’s ideas resonate with me and remind me to be present for friends, family, and neighbors who might need extra assistance or support.
For more about Martha’s work, visit her website at www.insidedementia.com
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Taking Care of Yourself by Reaching Out
“I’m too busy to even begin to think about doing anything more – even reaching out.”
When I read Yosaif August’s blog, I really identified with this sentence. Yosaif is the author of Coaching for Caregivers: How to Reach Out Before You Burn Out.
Here are some of his words of wisdom:
“When we’re exhausted or on overwhelm, how do we begin thinking about doing anything beyond what we’re already doing? And reaching out certainly sounds like a major bit of doing.
“But, I’d like you to consider the idea that reaching out is not just another item on a ‘to do’ list. It’s on a different kind of list, a ‘to be’ list. This item on the list is about being connected. About being receptive to the web of connections that can make our tough times much more endurable and our better times much more enjoyable.
“Take a few moments and imagine yourself being open to receiving the love and support that is flowing towards you. Try this even if you don’t quite believe it right now. Relax into it. Imagine your antenna beaming out, letting people know you are in receptive mode. Relax into it.
“Opening up more to love and support is a great way of taking care of yourself.”
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I was lucky; during my caregiving journey with my mom — when I was too exhausted and shy to reach out for help — a dear friend reached out to me.
When Maril asked, “Can I go with you to visit your mother?” I felt like a flutter of angels had gathered around me.
“Really?” I asked. “You want to see Mom with me?”
She did. I prepared her for our visit, describing Mom’s various moods. Maril did not seem shocked, worried, or afraid. I told her about walking into the sometimes chaotic energy of the locked Alzheimer’s unit. She simply nodded as if this were an ordinary occurrence, which, for me, it was.
The day of our visit I felt lightness inside; I was eager to share my secret world with my friend.
When we arrived, Mom was sitting at a table in the dining room with a magazine in front of her. She looked pretty and serene and she smiled when we came in. We sat next to her and Maril took her hands.
“How are you Fran?” Maril said, looking into my mother’s eyes.
“Well I you know the scatter of it all,” my mother answered.
“I do know the scatter of it all. How are you getting along here?”
“Like a diamond in the sky,” my mother said.
As I listened as my mother and my friend talk, I was proud of my mother’s poetic and eccentric answers, proud of the way she engaged in the conversation. And I was grateful that my friend was able to listen to her words and intuit their deeper meaning.
“I enjoyed seeing your mom,” Maril said, as we drove home. “I’d like to go again with you sometime.”
The visit was a huge gift for me. Seeing Maril engage with and appreciate my mom reminded me of my mother’s many talents and facets. This knowledge later helped me get through those moments when my mother seemed faraway or lost. My friend reminded me — there are so many ways to carry on a good conversation. All you need is attention, intention, and love.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Turning Remembering into Caring
“I am sitting here now as you doze, not in case you remember me, but because I remember you.” Sitting with Grandma by Gail Rixen, from the book Beloved on the Earth: 150 Poems of Grief and Gratitude
So many times I sat with my mom in the activity room of the Memory Care Unit, sharing stories of my life. I gazed at her but no longer hoped she would look at me or pay strict attention to my what I was saying. I simply let the flow of words, the depth of our share history and the steadiness of my love for her connect us.
Recently, I was touched by this post written by Michelle Remold in Lori La Bey’s fascinating blog, Alzheimer’s Speaks. Michelle’s story offers another look at the beauty of using remembrances of a shared history as a way to connect.
“We would visit my grandpa every weekend. Even when he slept, we would spend at least an hour sitting with him and would reminisce about things he used to do with us. We would even send him postcards when we went on trips, not so that he would remember us, but to show that we were thinking about him.
I didn’t go visit him in hopes that he would remember me, but instead because I remembered him and visiting was a way to be with him and to relive the moments and create new memories. Even when he no longer knew who I was, I would run to him, take his hand and we would walk together. Even as I got older, whenever I would talk to him, he would smile. I would sit with him and tell him about my week and everything that was going on. There is no doubt in my mind that deep down he knew me although I never was hopeful he would remember my name. I remembered him in a way that would never be replaced.”
“We do not remember days; we remember moments.” ~Cesare Pavese, The Burning Brand
To learn more about Alzheimer’s Speaks, please visit: http://alzheimersspeaks.wordpress.com/
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Eight Ways to Spark Up Communications with a Person Who has Dementia
Some days when I visited, I tried everything to get Mom’s attention and communicate with her. Of course, I tried talking. When that didn’t interest her, I gazed into her eyes or waved my hands to pique her curiosity or touched her arm to let her know I was there. I know how challenging it can be to have meaningful communication when someone is deeply forgetful and I am most grateful for this excellent article by Karen Love. Karen is a founder of CCAL, a non-profit national consumer advocacy and education organization.
Here are excerpts from Karen’s article:
Did you know that spoken words only account for 7% of communication? The remaining 93% of communication is conveyed through body language, vocal tone and pitch. Communication style becomes especially important when someone in your life is living with dementia.
Here are a few tips for better communications:
Stand at eye level in front of them so they benefit from seeing your body language and facial expressions. Slow your speech down because their brains process information more slowly.
Don’t interrupt: take time to listen to the person’s response. If they are especially stuck on a word, kindly supply the word and see how they react. If they don’t appear to want the help, let them manage on their own.
Ask one question at a time and ask questions that require simple yes or no answers. For instance, “Do you want scrambled or fried eggs this morning?” instead of “How would you like your eggs this morning?”
Where possible, supplement your communication with visual cues. Smile often, not only because it conveys warmth and caring, but also because smiling can make you feel better too.
Touch is a powerful communicator. When used positively, touch can convey caring and warm feelings. It only takes a moment to offer a pat on the shoulder or a gentle hand squeeze.
Phone calls are especially challenging for someone who has dementia because the only communication cues they receive are words (7%) and vocal tone and pitch (38%). Limit phone conversations to a minute or so and say something positive like, “I was thinking of you and just wanted to call and say hello.” Consider using Skype or another one of the visual software methods on a computer, tablet or iPad to communicate.
Spend time together in companionable silence. It can be exhausting for someone living with dementia to continually process communication. Sit across from the person or at 90 degrees so they can easily see you.
Lastly, be aware of how you are communicating and whether it is having desirable results such as smiles, nodding, and looking contented, happy, or relaxed. If not, review your style to see if you should adjust an aspect of your technique.
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To learn more about Karen and her organization, please visit: http://www.ccal.org
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Seven Secrets for Creating a Care Partners Support Group
“Kindred Spirits are not so scarce as I used to think. It’s splendid to find there are so many of them in the world.” — Anne of Green Gables
Recently, Ron and I were honored to share stories and ideas with a dementia-focused caregiver support group at Hallmark Cards. Every month, the group welcomes a guest speaker and discusses an interesting aspect of caregiving. The group shares resources, caregiving ideas, family challenges and more.
“To learn how others have managed challenging experiences is so very valuable,” says Gini Toyne, RN, MBA, from Creative Care Consultants, who facilitates the group.
Gini contributed to these tips for creating a monthly support group:
Find Kindred Spirits
Find one or two people who share your situation. Ask them to meet you for breakfast, lunch or coffee.
“Believe me,” Gini says, “when you start sharing and troubleshooting, the group will quickly grow in size and value. You will be amazed at the number of folks who will want to join in. “
Agree on Group Goals and Behaviors
Agree on a regular meeting time. Be flexible: meet by phone or Skype when meeting in person doesn’t work. Agree on a facilitator, who’s dedicated to keeping the group focused and on-topic and who makes sure everyone is heard.
Create a Safe Space for Sharing
Create a safe and confidential atmosphere; agree that you’ll keep all comments and stories confidential and that you’ll listen to each other with openness and empathy. Agree to share ideas and avoid offering unsolicited advice.
Share Caregiving Journeys
Initially, invite group members to tell their caregiving story. Ask someone to write the stories down, so when a new member joins, they can read about the others.
Discuss Challenges, Issues, and Concerns
Ask members to keep a journal of challenges. Invite them to bring one question, challenge or concern to the each gathering. Discuss each person’s issues, managing the time, so everyone has equal chance to be heard.
Share Resources
Save time for questions and discoveries, so members can ask for advice and share resources.
Celebrate and Acknowledge The Journey
Take time to appreciate the energy, innovation and attention each member is offering to their loved one.
Share pieces of wisdom and moments of joy and connection.
Deborah Shouse is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.
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Sharing Stories and Songs
“To love a person is to learn the song that is in their heart,
And to sing it to them when they have forgotten.”
~ Arne Garborg
At our recent Alzheimer’s performance at the Isidro Ayora Hospital in Loja, Ecuador, we shared stories and ideas and learned how these health care professionals were dealing with clients who had dementia. 
One nurse described her close relationship with an elderly client. “I feel like I’m a partner with the family in caring for her,” she said.
“I’m interested in integrating more kinds of therapies, such as music and art therapies, into our care,” a doctor commented.
“I’m looking for ways to reduce the stress of being a caregiver,” another member of the team said.
We had a lively and meaningful conversation and we were impressed by their dedication and caring.
If you have tips for reducing the stress of being a caregiver, we welcome your comments and we’ll share them with our friends in Ecuador and elsewhere.
myinfo@pobox.com
816-361-7878
Follow us on Twitter: @DeborahShouse
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What I Have Learned about Love: Moments of Indelible Beauty
The canoe slips through the narrow passageway just as the sun touches the water. As we round a corner, we spot a black-capped heron, poised for fishing, elegant with its delicate feathery head plume, powdery blue beak and long ivory body. He stares at us for a moment and then lifts his grand wings and disappears into the groves of elephant ear trees. Though we see him for only a few seconds, his beauty stays with us throughout the day.
So many times, when my mother was deep into her Alzheimer’s journey, I rounded a corner and had a glimpse of her true depth and beauty. Then, like the heron, she disappeared into her own personal forest. But the image of her shining face and the excitement of the momentary connection remained with me.
This month, I’m going to write about one of my favorite topics—love. I’m asking myself, “What have I learned about love by knowing and caring for people who have Alzheimer’s?” I welcome your answers to that question.
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Five Ways to Make Valentine’s Day Special for a Loved One with Dementia
My parents liked to celebrate Valentine’s Day with dinner and dancing. Years into my mom’s Alzheimer’s journey, my parents’ love hadn’t diminished, but my mom’s capacity for going out to dinner and dancing had drastically decreased. I saw how blue my father was—one more event he had to give up, one more change in the woman he loved—and I searched for alternatives that might cheer him up. Here are a few things we tried:
Look for a favorite thing. Seek one simple pleasure your loved one might enjoy. Mom loved potato soup and chocolate and fresh strawberries. These were part of our celebration.
Nurture yourself: include your own favorite thing. Bring yourself into the celebration and include something that makes you happy. I brought foods my father and I both liked as part of our little party.
Pick several ways to express your love. Poetry, music, gifts, flowers, and photo albums—you can use any of these resources as a catalyst to talk about your feelings. Dad and I sang Mom old show tunes and love songs, music she really enjoyed. Mom adored Shakespeare; we had a couple of sonnets on hand. She and Dad had once created a beautiful flower garden; Dad brought her a single red rose.
Take joy in the simple act of expressing yourself. Being with my mom was a chance to really practice the mythical “unconditional love.” Mom couldn’t tell me she loved me. During one Valentine’s Day celebration, she fell asleep while I was holding her hand and talking sweetly to her. But there was a comfort in expressing my love and I kept on talking.
Celebrate love in all its glorious guises. During their long marriage, my father had walked into a room millions of times and often, Mom had been busy and hadn’t particularly smiled or remarked. But with her dementia came a deep dependency on Dad. When Dad walked into a room, my mother’s face lit up. My father basked in that light. The sparkle in my mother’s eyes was the new, “I love you, darling.” The light said everything my mother could no longer say.
Deborah is the author of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey.