5 Exercises You Can Do Before Getting Out of Bed
Toni Silva, October 2017
As caregivers, we often feel exhausted or stiff getting out of bed in the morning from the intense responsibilities of caring for another person. At times, we might even feel pure exhaustion from not getting a full night’s rest. This is when a little exercise can help.
How we feel physically has a direct influence on our day. Physical activity will generally bring on positive feelings and a more positive outlook. By starting with small movements as soon as we wake up in the morning, we can get our blood flowing, generate warmth, and build energy.
Below are FIVE “go to exercises” that will take your spine through each plane of movement while strengthening supporting muscles. The gentle moves will increase energy, build strength and improve flexibility so we feel less stiff and able to conquer the day ahead. To begin, we must put aside a few extra minutes in the morning. This daily exercise routine can be completed sitting at the edge of the bed in 10 minutes or less.
(Be sure to get your doctor’s approval before beginning any exercise regimen. Use caution, if you have a diagnosed spinal injury).
Start by sitting at the side of your bed with feet touching the floor, bed frame, or place a stool under your feet. It would be beneficial to do 5 sets of each exercise. You may consider increasing repetitions as you begin to feel stronger.
1.Seated Cat/Cow: Hands on thighs with elbows reaching out and away from body. Inhale: lift your chest to the ceiling. Exhale: round your back with chin toward chest and pull navel into your spine rounding your back. Repeat.
2. Head turns: Sitting upright with hands relaxed on thighs. Inhale: Look straight ahead. Exhale: Turn your head to the left. Inhale: Return to center. Exhale: Turn your head to the right. Inhale: Return to center. Repeat sequence by alternating lead sides each set.
3. Side Bends: Hands on bed beside your hips. Inhale: Lift your right arm Exhale: reach overhead side bending to your left. Inhale: Return right hand above right shoulder Exhale: return right hand next to hip on bed. Repeat on the left to complete one set.
4. Seated Twist: Inhale: lift your arms up to lengthen both sides of your waist, Exhale: rotate your ribs to the right taking your left hand/arm across your right thigh and turning your chest, shoulders and head in the same direction. Stay for a full inhale while lengthening taller and exhale. Return your gaze forward and unwind the body. Repeat twist to left with right hand/arm across your left thigh to complete one set.
5. Knee Circles: Inhale: raise your right foot off the floor as you lift your right knee toward your chest with hands on back of thigh or holding onto bed. Imagine you’re drawing 3-5 circles with your knee on the wall in front of you while activating abdominals (pull naval to spine) and lengthening your spine upward. Reverse the knee circles. Place right foot down and repeat knee circles on the left side to complete one set.
Now, feel the changes in your body as you stand up and seize the day!
DISCLAIMER: This blog offers health and fitness information and is designed for educational purposes only. You should not rely on this information as a substitute for, nor does it replace, professional medical advice, diagnosis, or treatment. You should consult your physician or other health care professional before starting this or any other fitness program to determine if it is right for your needs. Do not start this fitness program if your physician or health care provider advises against it. If you experience faintness, dizziness, pain or shortness of breath at any time while exercising you should stop immediately. The use of any information provided on this site is solely at your own risk.
"What Japan Can Teach America
About Family Caregiving"
Barry Jacobs, August 2017
One after another, three young social work students stood up and tearfully shared their experiences of growing up caring for grandparents with dementia in their family homes. Later, a middle-aged physician talked with pride about frequently visiting his still-healthy, 94-year-old mother to support her choice to live in her own apartment. These were prime examples of “filial piety”—the millennia-old, ingrained tradition of devotion to elders—that I had anticipated.
But there was much I didn’t expect. A social work faculty member ruefully described the growing phenomenon of adult children who had moved to the big city for jobs and no longer wanted responsibility for their aging parents, alone and isolated in their home villages. Such careerists had divorced themselves morally and emotionally from their parents, leaving it up to local government to tend to them.
These were the sharply contrasting attitudes about eldercare that my wife, Julia L. Mayer, Psy.D., and I heard during a recent visit to Japan. We had been invited to give lectures on aging and resilience at the Kanagawa and Tokyo campuses of Tokai University as part of a year-long celebration to mark the founding of the university’s Faculty of Health Management, an ambitious, interprofessional program of professors, researchers and clinicians from a broad array of medical and social sciences. The divergent sentiments we heard at our lectures offered lessons—and perhaps a glimpse into the future—for America’ aging families and caregivers.
This was my first trip back to Japan since I spent a college semester there in 1979 to study its Confucian culture. I found much that was still familiar to me, including the country’s sometimes jolting blend of old traditions—such as its love of tatami mats and hot springs baths—with the ultra-modern—such as uncannily efficient subways, ever-present vending machines and green tea Kit Kat bars. But the Japan I knew from nearly 40 years ago has gone through an extreme demographic shift because of increasing life expectancies (now 4 years longer than in the U.S.) and decades of low birth rates. (There are supposedly more pets than children in Japan today and more diapers sold for adults than babies.) It is now far and away the most rapidly aging nation in the world with about the same population as when I was last there (120 million) but triple the proportion of people over 65—over a quarter of the population. That number is expected to rise to an astounding 40% by 2060. U.S. senior citizens, in contrast, now comprise 15% of our population and will top out at only 20% in 2030.
Japan has been whipsawed by its demography and is consequently experiencing contradictions and ambivalence about eldercare. In the 1990s, many Japanese women were overwhelmed with caregiving and work duties; reports of caregiver abuse of older relatives began to rise. The government responded in 2000 with a mandatory long-term care insurance program for all Japanese over age 40, as well as the introduction of such community-based services as case management, adult day care centers, and home companions. Today, the tradition of “sansedai kazoku” (three-generation households) still exists among 60% of the populace. But, according to a 2014 Pew Research Center survey, 87% of Japanese think aging is a “major problem” for the country (the world’s highest percentage) and only a third of them believe that families should bear the “greatest responsibility for the elderly.” (Thirty-six percent think it’s the government’s job.) There have been more and more highly publicized cases in which family caregivers murder the parents they’re caring for and then commit suicide. Filial piety, it seems, is on the wane.
What can Americans learn from Japan’s struggles? Here are two thoughts:
When the number of aging citizens reaches certain thresholds, societies must respond with increased services: If there was any country whose long tradition of family values would have sustained its commitment to eldercare, in my mind, it was Japan. But the sheer volume and needs of the old began to crush even stalwart Japanese. Its government responded accordingly and appropriately. When America’s aging “problem” increases in the next 15 years, will our local, state and federal governments respond with the same compassion and thoughtfulness? I hope so but am concerned. As with Japanese society, there will be dire consequences for U.S. individuals and families if we don’t devise and pay for the right supports.
When governmental supports are put in place, family commitments change: Because of Japan’s long-term care system, including increasing numbers of residential facilities, more Japanese feel entitled to have the government support their aging parents. That is a radical departure from Confucian tradition. Could the same happen in the U.S. if our long-term system was greatly expanded? Would Americans have less compunction about walking away from a perceived caregiving “burden” if they knew that the safety net for their parents was actually safe and strong? I don’t know the answer but expect that, as our caregiving systems necessarily change in the next two decades, our family values will, too.
Barry J. Jacobs, Psy.D. is a clinical psychologist, family therapist and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. He is the co-author (with his wife, Julia L. Mayer, Psy.D.) of AARP Meditations for Caregivers—Practical, Emotional and Spiritual Support for You and Your Family (Da Capo)
Meet the CCI Ambassadors
Liz Kitchens, May 2017
My passion is to build a community of support for caregivers but not
In a way that is most obvious. Certainly supporting caregivers and their care partners with their physical needs is critical. What my family foundation, The Pabst Foundation, seeks to nurture is emotional support for caregivers and their families. We support The National Center for Creative Aging's program, The Creative Caregiving Guide to do just that-- emotional and social support for caregivers.
I am proud that Diana Silvey from The Winter Park Health Foundation is a key ambassador in this effort. Thank you Diana for all you and the WPHF do in our community!
Meet the CCI Ambassadors: Diane Silvey, Winter Park Health Foundation
I recently met with Diana Silvey, Program Director at the Winter Park Health Foundation. Full disclosure, Diana is a dear friend, and someone passionate about health issues facing older adults and their families. Diana moved to Florida ten years ago to work at the Foundation in part because she valued their mission statement: to make a positive difference in people’s lives by creating the healthiest community in the U.S.
Diana also values place-making, which is creating public spaces that promote people’s health, happiness and wellbeing. She gave me a virtual tour of what will be The Center for Health and Wellbeing due to open in Winter Park, Florida in late 2018. This public space, inspired by nature, will feature gardens and social gathering areas. This center is the result of collaboration between the Winter Park Health Foundation and Florida Hospital, and will offer medical offices, physical therapy and rehab services, a healthy café, teaching kitchen, and an interactive resource space dubbed the Healthy Living Experience. The Center will also be the new home of the Peggy & Philip B. Crosby Wellness Center YMCA, with plans for it to become a medically integrated fitness facility.
But those are just the overall details of this place. Let me try to describe the vision of this space as explained by the architect, Turan Duda. A common theme of the center is the number 7. There are seven gardens ranging from a meditation grove, providing a corner for meditation and reflection to beds of edible herbs and vegetables.
Keeping with the theme of 7, the project focuses upon the Seven Dimensions of Wellness. These dimensions include:
* Intellectual wellness, being open to new ideas, creative thinking, learning and seeking out new challenges
* Physical wellness, caring for the body for optimum health and functioning
* Social wellness, building relationships with a positive social network
* Spiritual wellness, finding meaning and purpose
* Vocational wellness, seeking a career or other work that is interesting and fulfilling
* Emotional wellness, having a positive attitude, self-esteem, sharing a broad range of emotions with others in a positive manner
* Environmental wellness, awareness of interaction with the environment and the community
Seven is the number of completeness and perfection (both physical and spiritual).
The number seven is prevalent in nature -- we have seven continents, seven oceans, the rainbow has seven colors, there is even Seven Wonders of the World. Not only is the number seven important to this design concept, so is the Golden Ratio.
As a clay artist, I have read about the golden ratio as it relates to nature and design. Turan Duda has employed the Golden ratio (an age-old mathematical concept) in his design of the Center for Health and Wellbeing. There are countless references in nature (the leaves on a tree and the spiral of the seashell) and art – The Parthenon, Mona Lisa, and the Last Supper. When followed, the effect is peaceful and calm, subliminally pleasing to the viewer/listener.
With more and more individuals seeking ways to age with vitality, this Center will be the first in the nation offering wellness, fitness, and medical care all under one roof, potentially changing lives and enhancing wellbeing. This space is the epitome of place-making- creating public spaces that promote people’s health, happiness and wellbeing. I, for one, can’t wait for the opportunity to enjoy this space.
"Angry Caregivers’ Misguided Blame"
Barry Jacobs, April 2017
“What made you decide to end your marriage?” I asked the exasperated 42-year-old woman in my office.
We were having one of those post-op individual psychotherapy sessions shortly after the couples therapy I conducted with her and her husband had failed. Our bid to save her marriage had gone poorly from the start. A year ago, her husband had had a major heart attack that killed 40% of his heart muscle and left him weak and highly anxious. Every time he felt chest pain in the months afterwards, he was convinced he was having another heart attack and repeatedly called 911 to carry him out of his workplace on a stretcher. (No further heart damage was ever detected in the emergency room.) As a consequence of these disruptions, several different employers had fired him in quick succession. During our couples sessions, he pleaded with his wife to be patient with him until he found a position that suited his now diminished physical abilities and he regained confidence in his health and safety. But she eyed him coldly and expressed no empathy—only anger.
“I’m tired of working and working and working,” she complained to me during our individual meeting. “I have to take care of the house and do hair and everything. And he just doesn’t do anything. I’m tired of him saying he can’t do things.”
“But don’t you think his heart condition has changed what he can do?” I responded.
She shot back with rising irritation, “No. It’s all mental. He’s never been able to keep a job. Not since the beginning of our marriage 17 years ago. And he’s just trying to use his heart now to manipulate me to take care of him. But I won’t let him do that anymore.”
Her view of him was as unshakeable as it was unforgiving. They separated soon after. She wound up starting her own small business and eventually marrying an older, affluent man who catered to her. He crashed on friends’ couches for a few weeks before moving into a homeless shelter. He only got back on his feet when he found another woman to take him in.
So what’s wrong with this picture? He was a lousy provider, in all likelihood, who’d made her feel victimized for nearly 17 years. She had every right to decline being re-victimized as his put-upon cardiac caregiver. Some would call that karmic justice.
But what happened here, in my mind, wasn’t simply an illustration of a bad relationship history undermining the willingness to make sacrifices on another’s behalf. She attributed malice to her husband’s intentions. At the same time, she trivialized his disabling heart functioning and resultant anxiety. It was as if she believed he was a malingerer and sociopath who willfully interpreted his chest pains as heart attack symptoms just to ride the ambulance and get out of a day’s work. To me, this was a distortion of the medical reality. Worse, it was a kind of character assassination that amounted to kicking a man when he was already down.
This happens in family caregiving in more subtle ways all of the time. Think of the emotionally distant adult daughter who avoids dealing with her father with dementia because he had always been mean to her when she was growing up. She perceives his yelling now as more of his old orneriness and not the agitated protests of a diseased mind. Or consider the wife of a lung cancer patient who blames him for ruining his life and hers because of his heavy smoking. Not every one of these family members will sever their ties with the care receiver when the time for caregiving arrives. Some will keep their distance and give little. Others will give lots but do it with an edge of resentment while assuming a bossy, morally superior stance.
This kind of blaming may feel right. But I think it’s misguided. Ill-used caregivers are entitled to walk away but do themselves no honor assuaging their guilt through being vindictive toward the newly vulnerable. That turns caregiving into a grudge match which compounds the suffering of the already disabled care receiver. It precludes any possible joy in the caregiving. It impedes real understanding of and empathy for the present predicament. We need to carefully distinguish the clinical symptoms of aging and illness from the past’s negative emotional legacy or risk conflating the two. Heart attacks needn’t prompt attacks on the heart.
"The Arts As A Beacon of Hope"
Liz Kitchens, March 2017
I’m a big fan of the National Center for Creative Aging (NCCA). Their mission statement says they are dedicated to fostering an understanding of the vital relationship between creative expression and healthy aging. Anyone who has engaged in even a cursory read of the Be Brave. Lose the Beige blog knows I’m a huge proponent of creative expression. Studies have demonstrated participation in the arts promotes physical and mental health, particularly among aging adults.
I was fortunate enough to attend the launch of the Creative Caregiving Initiative at the Arts and Wellness Symposium last fall in Orlando. The NCCA has developed an online caregiver toolkit. The toolkit contains artistic exercises for caregivers and their loved ones. Part of the focus is respite for the caregiver. This was the brain-child of Margie Pabst, of the Pabst Foundation for the Arts. She says, “The life of a caregiver is often filled with isolation, loneliness, stress and depression with patches of sunlight and hope. We saw the arts as a beacon of hope.”
While this initiative is targeted primarily to caregivers of family members with Alzheimer’s and other cognitive disorders, I see its application for caregivers of all shapes and forms.
As Baby Boomer women, it feels like we have been caring for others our whole lives. We are truly the “tweener” generation, sandwiched between parenting our adult children and tending to aging parents. I know my mother cared for me and loved me but I’m not sure she took hoisted my emotional traumas on to her shoulders in the same way we do with our children. Or perhaps, we just did not share them in the same way we have encouraged our children to share theirs. We looked them in the eyes all those years ago and said things like, “you can tell me anything. “. In many instances we would have gladly assumed their cares rather than witnessing their struggles.
My daughter recently underwent a very real trauma. While intellectually I know the experience was more difficult for her, I don’t know if it could have been that much greater considering the extent to which I felt her pain. Living in another state made access more difficult so there were many telephone calls, plane trips, Face-time sessions, and any other means of communication.
Creativity was an integral part of our care exchange. A shopping cart at Michaels Craft Store was loaded with clay, buttons, paint, and canvasses.
An entire day was devoted to creating. It really did not matter what, it was the process of creating. Hallmark holiday movies accompanied our sculpting and scrapbooking.
My family room assumed an art studio with bits of paper, Fimo clay, and glitter strewn about. So what! Cleaning only took minutes. The process and products will last in our hearts forever.
"Pain and Acceptance at the End
of Caregivers' Hopes
Barry Jacobs, March 2017
“You are treating her like she’s a piece of meat,” Tony was shouting angrily at me. I hadn’t the power to change the care his 62-year-old wife was receiving in my hospital’s intensive care unit—for the past two years, I had been their psychologist, not nephrologist—but, for the moment, I became the embodiment of all Medical Authority. “She just lies there, unconscious and horribly swollen. You don’t do anything for her except stick her with more needles.” The look on his face then shifted slightly from accusatory to imploring. But I couldn’t save her.
His wife, Elena, had been bedbound in their tiny apartment in suburban Philadelphia for at least five years because of chronic, severe back and knee pain. She’d become confined there as the result of a series of personal and medical missteps—or, put another way, lack of steps. Once she’d entered middle age and her girth thickened, her joints had started aching because of the increased weight they supported and she consequently walked less. As she’d walked less and took to her “sick” bed more often, she burned fewer calories but never adjusted her diet and consequently gained more and more weight. Taking handfuls of pain pills every day didn’t relieve her joints and propel her off the mattress; instead, they only sedated her into a supine stupor in front of the TV. And the long-term narcotic use gradually took its toll: Her kidneys and other organ systems were now shutting down.
Tony was her devoted enabler. He’d waited on her slavishly, bringing her favorite foods, sitting bedside with her every day for hours to watch TV and listen to her steady complaints. He owed her, he felt, because she had stuck with him through his wild drinking years until he finally sobered up. He’d paid her back by sticking with her through her retreat from the world and now he was still sticking with her in the hospital, like he thought he was supposed to do. He would plead with the doctors to make her whole. He would utter lengthy beseeching prayers during sleepless nights in the armchair in Elena’s ICU room. But he could see that none of it was working. He was frightened for her life. He was afraid he was letting her down.
My job, it seemed to me, was not to try to persuade her medical specialists to make hail-Mary efforts for Tony’s sake. Neither dialysis nor multiple meds were working. My job was to convince him that Elena’s condition had taken a discernible turn. Family psychiatrist John Rolland of the Chicago Center for Family Health has written compellingly about the phases of illness—acute, chronic, terminal—and how hard it is for patients and families to switch their expectations and actions from one phase to another. We all believe at first that our ailments have a cure until some professional tells us that our condition is chronic and that we will have to learn to live with managing the symptoms. We are all lulled into believing that life with that chronic condition will go on and on until the end hits us shockingly like a sucker punch. This is the hard stop on hope.
“Tony, I’m worried that Elena won’t make it,” I said quietly. He stiffened and said, “No,” but the word sounded more resigned than forceful as if he knew that protesting wouldn’t change anything. We’d worked together for two years and he trusted me. By stating the inevitable first, I was giving him permission to begin thinking about the possibility of her death without feeling guilty. “You’ve been a very good husband to her for a long time,” I went on. And then to suggest a way he could continue to be good to her, I said, “I think it’s time to talk with her doctors about considering hospice.”
“Yeah, well, we’ll see,” he said gruffly. Over the next few days he continued to push her physicians to try new interventions as if defying what I’d said. But our short exchange had a started a process. He didn’t want to accept that she was in the terminal phase but he now knew it. When the doctors themselves approached him with the suggestion of taking her off of life supports, he acquiesced. She died a day later.
In our initial meetings in the months afterwards, he was still angry at her doctors and at what he saw as an uncaring world. But time passed and anger abated and he began to allow himself to feel relieved of the burden of caring for her without also feeling guilt for getting rid of her. “You were a good husband,” I kept telling him. With time, he came to see that that didn’t mean preserving her life, but accompanying her through its vicissitudes, termination included.
"Engaging during the Dementia Journey
One Story and Six Tips"
Deborah Shouse, March 2017
My satchel was packed with potential connectors, not the electrical type, but the emotional, engaging type. I had a sheaf of favorite poems, an Audubon bird book, a list of songs Mom and I liked, some bright red Mardi Gras beads, several colorful scarves, and some paper and markers. I was eager to see what Mom might fancy and I felt prepared for any creative impulse. But as usual, my mom surprised me. When I walked into her room in the memory care community, she was sitting on the bed, fiddling around with a blanket. She smiled and held out her hands. I sat beside her, held her hands, and smiled at her. She laughed. I laughed. She made a little funny face. I mirrored her. I followed her lead until she suddenly gripped my fingers and closed her eyes. I closed mine, but kept sneaking peeks at her. She was asleep, a lazy smile on her face, so I closed my eyes and rested with her.
Spontaneity and surrender were two of the many lessons my mom taught me during her dementia journey. I loved preparing for our time together, cobbling together ideas to engage us both. Sometimes we sat quietly, leafing through magazines. Other times, I sang Mom show tunes. Still other times, I simply went with the flow and enjoyed Mom’s energy and spontaneity.
My mom has since passed away but her spiritual and emotional gifts linger on. When I visit friends who are living with dementia, here are a few ideas for connecting.
• Choose a quiet space relatively free of distractions.
• Select a time of day when you both have lively energy.
• Bring a project (or projects) you’d both enjoy.
• If the person is shy about creative projects, issue a low-key invitation, such as, “Want to help me with this project?”
• Allow the activity to unfold at its own pace, offering support as necessary and
encouragement along the way.
Enjoy the process.
• If the activity doesn’t go as planned, don’t worry. Go with the flow and relish your time together.
Deborah Shouse is a writer, speaker, editor, former family caregiver, and dementia advocate. Deborah’s latest book, Connecting in the Land of Dementia: Creative Activities to Explore Together, features dozens of experts in the field of creativity and dementia. These innovators share ideas that engage the creative spirit so you can continue to experience meaningful moments of connecting. Deborah and her partner Ron Zoglin raised more than $80,000 for dementia programs by donating all proceeds from her initially self-published book, Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey, to dementia based non-profits. Central Recovery Press has since published an updated version of Love in the Land. To learn more, about Deborah and her work, visit DementiaJourney.org
"Keeping Connected Throughout
the Dementia Journey"
Deborah Shouse, February 2017
As my mom’s dementia deepened, I wondered how I could stay connected with her. Mom and I had enjoyed discussing family issues and books, going to movies, and watching birds. But with her increasing memory loss and restlessness, I realized we would have to forge a new relationship.
Research shows that the part of the brain involved with creativity and imagination outlasts the rational part of the brain, so there are limitless opportunities for engagement. Our new relationship was built of activities such as singing, leafing through magazines, touching flowers, listening to music, cooking together, and laughing.
The benefits of doing creative activities together include more energy and socialization, reduced anxiety, and chances to express yourselves in new and meaningful ways. Increasingly, studies show that painting, drawing, and other arts and crafts reduce the risk of cognitive impairment. Additional activities such as music, movement, gardening, and social interactions strengthen the body, brain, and spirit.
Here are some easy ideas to increase creativity while staying connected and having fun.
Tune into Singing
Singing was one of the ways I stayed engaged with mom during her journey. I always felt happy after singing together. Now a study from Dr. Teppo Sarkamo in Helsinki, Finland, explains why. Dr. Sarkamo’s research found that “regular musical activities can have an important role in maintaining cognitive ability — enhancing mood and quality of life for people living with dementia. These activities also promote the well being of care partners and offer a beneficial leisure activity for both partners.” Dr. Jytte Lokvig, from Santa Fe, NM, facilitates sing along groups in memory care communities. She believes that music is a doorway to creating connections. “Even when I do an art activity, I start with a few songs to knit us together,” she says. Bringing singing into your daily life is a simple way to connect with yourself and with the person you’re caring for.
Cook up a Connection
Cooking is another wonderful way to connect and create together. As her husband Charlie moved deeper into dementia, Elizabeth Miller bought a cookbook from his teenage years, the 1960s. They read through the recipes and highlighted the ones Charlie remembered his mom making. Then, with Charlie as her sous chef, Elizabeth made dishes such as chicken cacciatore, tuna casserole, and spaghetti and meatballs. They invited Charlie’s childhood friends over for a meal and talked about old times
while they chowed down on Johnny Marzetti Casserole.
Working together in the kitchen offers a low-stress way to accomplish a task and relive family and food memories. People want to be useful and creating meals for and with someone meets that need.
Here are some tips:
• Use the foods, the preparation, or the occasion as a catalyst for conversation. Encourage stories and ask open-ended questions.
• Look for seasonal recipes or foods that have delicious aromas, interesting textures or that evoke good memories. Some examples include baking holiday cookies, preparing cinnamon rolls, mashing potatoes, or cranking ice cream.
• Even if the person living with dementia can’t help prepare the meal, he can still enjoy sitting in on the action and the conversation. Having the experience is more satisfying than sharing any dish of food.
Nurture with Nature
“People with dementia often feel a sense of calm and connectedness when they’re outdoors,” says Claire Craig, PhD, co-author of Creativity and Communication in Persons with Dementia: A Practical Guide. “When people are not grounded in their natural surroundings, they can feel disoriented and confused.” Claire sees the outdoors as a place to unite art and nature. Many people relate to the seasons through gardening, farming, and lawn care. Many relish walking or sitting outside, feeling the fresh air, seeing majestic oaks or fragrant pines, breathing in just bloomed lilacs and crimson roses, watching squirrels and hearing lyrical birdsong. “Look at your outdoor space as an opportunity,” Claire advises. “Ask yourself, ‘How can we make this space our own?’ Think of projects you can do as a team. Consider building something simple out of wood. Glue it together if you don’t want to use nails. Decorate planters with paints or paste on shells, tiles, pebbles, mosaic pieces, and more.” Poetry rocks, literally. Claire guides people in gluing short poems, inspirational sayings, or copies of favorite photos onto smooth rocks, then varnishing them. They will fade with the weather but make lovely gifts or garden accents. She also suggests painting rocks. To create a spontaneous outdoor art gallery she pins copies of photos on a clothesline and discusses them as they flap in the breeze.
Weave Activities into your Daily Routine
A good activity should be easy, mutually pleasurable, appropriate for ability, age, and gender, imbued with some meaning, and have no deadline and no pressure. Simply incorporate them into your daily routine and you’ll enrich your time together.
Deborah Shouse is a writer, speaker, editor, former family caregiver, and dementia advocate. Deborah’s latest book, Connecting in the Land of Dementia: Creative Activities to Explore Together, features dozens of experts in the field of creativity and dementia. These innovators share ideas that engage the creative spirit so you can continue to experience meaningful moments of connecting. To learn more, about Deborah and her work, visit DementiaJourney.org
"Creative Living Is a Path for the Brave"
Liz Kitchens, February 2017
I took my creativity crusade on the road a couple of weeks ago. I was invited to conduct two workshops at The Myositis Association’s annual conference in New Orleans. Myositis takes many forms- Lupus, RA, and severe muscle weakness, to name a few. Art As A Beacon of Hope, the first session I conducted, was designed for patients with autoimmune disorders. Caregivers Living In Color addressed issues facing caregivers of loved ones suffering from these debilitating diseases.
Even though I do not suffer from an autoimmune disorder I wanted to convey my passionate belief that having an illness or caring for someone who does, does not have to doom one to a poor quality of life. Creativity is obviously not a panacea, but it is helpful. A Dose of Creativity, documents the benefits of creative engagement among aging adults- fewer doctors’ visits, the need for less medication, memory enhancement, fewer falls, a sense of belonging, “a second chance at life” according to one of the budding artists in the documentary.
Laura Holson, in a New York Times article entitled “We’re All Artists Now”, wrote:
“Our best selves are merely one doodle away. Where once drawing and other painterly pursuits were the province of starving artists or simply child’s play, unlocking one’s creativity has become the latest mantra of personal growth, career success,
This article talked about how creativity has the same holistic benefits as a weekend at the Canyon Ranch Resort and Spa (and much cheaper, I might add). The Mayo Clinic recommends the health benefits of painting and ceramics. A four-year study found that people who took up creative endeavors at middle age suffered less memory loss.
I came to the conference loaded with statistics and suggestions for creative coping techniques. As is often the case, though, I was the one walking away feeling enriched. I carried home stories about acute pain, muscle inflammation and weakness, negative reactions to medications, falls, even death. I listened to the stories of spouses describing their multiple roles and responsibilities and having little to no time left over for their own pursuits. A young husband became emotional describing how he missed physical intimacy with his wife of only two years. The “toys” people have bought to help them function- motorized wheel chairs, bidets, vans with special lifts. But what I was most moved by was the obvious love and devotion between patient and caregiver. I heard a sweet story from one husband who said his own creativity had actually increased since the onset of his wife’s illness. He cuts out fabric for her as she is no longer able to squeeze a pair of scissors. They have become closer than even before her illness due to these shared activities.
I was struck by the bravery. The fact these attendees showed up to the conference was brave. They aren’t settling for a diminished life. As the name indicates, Be Brave. Lose the Beige advocates bravery. Not necessarily the kind of bravery required to climb a mountain or parachute from a plane. It’s the little every day heroics, like choosing to own your own life rather than allowing circumstances or others to own you.
Elizabeth Gilbert, of Eat Pray Love fame, has written a new book entitled Big Magic, Creative Living Beyond Fear. Gilbert referenced a poet professor who said the following to his budding writer student:
“Do you have the courage? The courage to bring forth this creative work? The treasures that are inside you are hoping
you will say yes!”
Elizabeth Gilbert goes on to write:
“The hunt to uncover these treasures- that’s creative living. The courage to go on the hunt in the first place- that is what separates a mundane existence from an enchanted one. A creative life is a bigger life, an amplified life, one that is more interesting. Creative living is a path for the brave.”
I was honored and happy for the opportunity to meet real heroes this weekend.
You can visit Li’z blog here: http://bebravelosethebeige.com/2016/09/19/creative-living-path-brave/
"They Put Me In Places"
Barry Jacobs, January 2017
“They take me—take me and put me in places,” my 86-year-old mother says again. She stammers as if unsure how to describe her baffling experience. Her deeply lined face has a look of discomfort and dread. “Various towns and facilities,” she says haltingly. Then, after a pause, “A shtetl. A kind of shtetl.”
The “they” she is referring to are the nursing home personnel whom she doesn’t particularly trust, even after a year of residing here. She often bridles at their directions and suggestions. Perhaps she specifically means the certified nurses’ assistants about whom she constantly complains for their rough and infantilizing treatment.
Her reference to “shtetl”—a Yiddish term for the small Jewish towns of pre-Holocaust Eastern Europe—is more interesting to me. Her parents came from such a place on the Bug River in eastern Poland and raised my mother and her two siblings in a 6-story walk-up in a poor, heavily Jewish neighborhood in the south central Bronx in the ‘30s and ‘40s. My mother then moved over her lifetime to a succession of Jewish “shtetls” in Queens, Long Island and South Florida before landing in this Jewish nursing home outside of Philadelphia near my home. In my opinion, she has never left the shtetl and now never will.
As a clinical psychologist specializing in geriatrics and family caregiving, I know how one is supposed to respond to a loved one’s confusion due to dementia—with calm, good cheer, and tolerance. As I’ve pointed out to many of my family caregiver clients, becoming upset and trying to correct some bizarre or paranoid idea rarely creates cogency. Instead, it tends to provoke more agitation and therefore more confusion.
But the son in me, bothered by my mother’s bewilderment, can’t simply humor her. “You’ve been here the whole time,” I tell her. “They would have to tell me if they were moving you somewhere.” My mother just looks at me blankly. “If they took you somewhere,” I ask her, “then how did you get back here?”
“I don’t know,” she at first responds. But then she adds, “I took a bus.” I look at her slumped in her wheelchair, knowing she hasn’t been on public transportation for years. It’s folly, though, for me to think that I can re-orient her with mere facts or logic.
Later on, when we call my brother on my cell phone so that she can speak with him, she repeats the story of being moved to various places. I can hear him trying to re-orient her by asking her why they would keep moving her. She responds by saying, “Different strokes for different folks,” one of the cliché phrases she now sometimes uses that have no meaning in and of themselves but which she repeats as a face-saving measure for not knowing what to answer.
There is no end to the confusion. She tells me sometimes about seeing people who have been long dead. She asks me if her parents are still alive. “Of course not,” I say too brusquely. “Really?” she asks, astonished. I shouldn’t be taken aback by her astonishment—it’s the nature of the disease—but I always am.
On the car ride home, I muse about the hour spent trying to sort out what is going on in her muddled head. Could there be some meaning behind her delusions? To be moved without her consent from place to place, as she believes, is to feel a constant state of dislocation and vulnerability that well captures the lost-ness of advancing dementia. There is uncertainty and fear, helplessness and hopelessness, and an awareness of being unmoored.
To believe you are being moved to shtetls conjures other associations for me—and not the ebullience of Tevye in “Fiddler on the Roof.” My mother may have lived in increasingly Americanized versions of Eastern European villages her whole life but she always wanted to escape the ignorance and impoverishment of her parents’ past. There is no leaving that shtetl now (not even by bus). There is no avoiding that sense of being at a cultural and spiritual dead-end. No more middle-class striving. No more embrace of high aesthetics and world travel. No more fancy dresses and sparkly jewelry. Her experiences of today are conflated with memories of her mother’s modest house dress, her father’s aching hands from his work as a window washer.
I’m not sure how to help my mother now. She drifts in her mind to strange and familiar places. I follow, providing what little company, comfort and direction I can.
7 New Year’s Resolutions for Hopeful Family Caregivers
The six-and-a-half years that I’ve been caring for my aging mother would seem like a blur of appointments, pills, and thrown-together meals if not for periodic times to reflect. The new year is one such vantage-point. How am I doing? I ask myself. How are we doing? I ask her. What gumption, luck, and juggling are needed to manage the emotional, medical, and financial challenges in the months ahead?
The year is best approached by all family caregivers with hope, the anticipation of positive gratification, and firm resolve. That takes specific resolutions and goals. Here are some of mine for 2017:
I will strive to see the forest for the trees: There is so much to do as a caregiver each day that it is easy to get caught up in the tasks at hand and lose sight of the greater mission. But caregiving is not about checking off chores on an endless to-do list; it’s about making personal sacrifices on behalf of someone you love. When I’m preoccupied with getting through to my mother’s doctors or directing her aides or filling out forms, then I feel mostly frustrated. In the coming year, I hope to keep focused on the positive reason I’m doing what I do—to help my mom live as well as she can.
I will aim for joy, not bitterness: Over the years, I’ve been irked at times by critical family members and aggravated by professionals who don’t listen well and give impractical advice. But I keep reminding myself it’s the small moments that are sustaining. If I can get my mother interested in looking at old photos and sharing family history with me, then that’s a victory. When she smiles, I smile and the day has some sweetness.
I will learn to better compartmentalize: This seems to me the key to emotional wellness—to be present where we are at any given moment. I don’t want to be awake thinking about what happened at my mother’s doctor’s appointment or worrying about work when I’m with her or ruminating about Mom when I’m with my wife and kids. I have to develop thicker walls between the different parts of my life. I have to learn to fully inhabit each room when I’m there.
I will connect with those who are responsive: A truism of family caregiving is that some of the people who we expect to help us don’t, while others who we don’t expect to step up do. Rather than being disappointed with those who failed us, it is better to focus on those who supported us. I should strengthen my connections with those relatives, neighbors, work colleagues, and fellow caregivers who have cared, commiserated, and pitched in.
I will make my requests for help more specific and concrete: Another truism is that “Not all help is helpful.” Lots of well-meaning people tell caregivers, “Let me know if I can ever be of help.” But those undefined offers of assistance generally amount to nothing. People are much more likely to give help if the ask is as tangible—and do-able—as possible. In 2017, I plan to reach out to others with very specific requests for discrete tasks within given time-frames.
I will practice self-kindness: I have great expertise at finding fault with my own caregiving. It’s being kind to myself—appreciating that I’m doing the best that I can, however imperfect it often is—that is the bigger challenge. Beating myself up degrades my morale but rarely leads to improvements in my performance. I want to see myself positively for who I am—a son who tries.
I will be open to transformation: My mother is gradually becoming more limited in her abilities to think and express herself clearly. She is now mostly wheelchair-bound. These changes mean change for me, too, and not just in taking on more tasks. To really be with her, I have to be more patient and compassionate. When she is afraid, I have to reassure. This is growth that can only make me a better and more caring person.
More challenges are coming in the next year. I can’t say I’m ready for all of them.
But I’m willing to adapt, muddle forward, and learn.
How to Maintain & Find Happiness While a Caregiver
Research from multiple areas like psychology, medicine, and immunology, have shown that caregiving can be extremely stressful - so stressful in fact that our physical and mental health can be impacted negatively. However, keeping a healthy balance for caregivers is possible with the help of a few tools to manage the stress. The field of positive psychology has investigated techniques and published the research that can help caregivers experience peace and happiness amid the challenging task of taking care of a loved one.
Chronic stress takes a toll on the body by activating the production of various internal chemicals that can end up causing parts of our body to work less efficiently, in particular our immune system, digestive function, and our ability to think clearly. This is due to the chronic activation of part of our peripheral nervous system that controls the “fight or flight” reaction known as the sympathetic nervous system. Its counterpart, the parasympathetic nervous system, calms everything down and is known as “rest and digest”. Every day these two parts of the peripheral nervous system work together just like a car, sometimes you need the accelerator and other times the gas. When under stress sometimes we overuse the sympathetic nervous system, and it has the same effect as when you can’t take your foot off the gas pedal! Your system just gets over used and likely to get worn out much quicker. The solution is to put on the break by activating your parasympathetic nervous system. How can you do this?
1. Control your breathing.
This one trick can cheat the whole system. If you tell your body to slow your breathing, it has no choice but to relax. This is the first step in taking back control.
2. Keep an open mind and a sense of humor, and try to practice gratitude.
Having some confidence and the ability to laugh can help you get through a tough moment and maintain control of how you feel, no matter what anyone else does. Searching your mind for any positive that happened in the day actually trains your brain to focus less on the negative events and starts building your ability to experience some peace in any situation.
3. Stop with the unrealistic expectations.
The expectations we put on ourselves and others set us up for disappointment. First recognize that you have no control over someone else’s medical diagnosis and behavior. Walk away, let conflict pass and get back to breathing. Second, you are allowed to say no – to your family, to your friends and to yourself. Do only what you can comfortably fit into your schedule and energy level. If you think a task will take two hours, give yourself four and recognize it's the only thing you may do that day. Sometimes giving yourself permission to let go of how things “should be” and accepting them simply as they are can make all the difference in the world; bringing you peace in the middle of chaos.
Recommended readings “Why Zebras Don’t Get Ulcers” Robert Sapolsky; “The Happiness Advantage” Shawn Achor; “The Upward Spiral” Alex Korb.
I am a native born Floridian. I have endured more than my fair share of insults from smug, sometimes even cocky inhabitants of other states/countries. We have been criticized for our apparent lack of seasons, our proximity to amusement parks, our perceived inability to count election ballots, and for the inordinate number of amphibians and reptiles lurking along our shorelines. Sloughing off these slights, I’m here to boast about my community and the fact Central Florida is at the forefront of a movement within the health care industry, one involving creativity and wellness.
A couple of weeks ago I was lucky enough to spend time with fascinating people from arts organizations, caregiving agencies, colleges, philanthropic organizations and foundations, and national advocacy groups. Most of the participants (myself included) are ambassadors for a Creative Caregiving Initiative launched last year by the National Center for Creative Aging (NCCA). The Center developed an online Creative Caregiving Guide, the purpose of which is to create a community culture where arts and wellness are accessible to everyone. This kit, designed by master artists, contains creative modules intended to provide small moments of care and creativity for caregivers and their loved ones.
The focus is respite for the caregiver and quality of life for the patient. This was the brain-child of Margery Pabst Steinmetz, of the Pabst Foundation for the Arts. She says,
“The life of a caregiver is often filled with isolation, loneliness, stress, and depression with patches of sunlight and hope. We saw the arts as a beacon of hope.”
I admit to being a Margie Pabst groupie. Caregiving is her passion. Margie is a blogger; host of Caregivers Speak! a live online radio show; author- Enrich Your Caregiving Journey and Words of Care; and President of the National Center for Creative Aging. She believes creativity is at the crux of caregiving.
Margie is also on the Board of the Atlantic Center for the Arts. The Atlantic Center for the Arts is a totally cool artists-in-residence center nestled on a 70 acre ecological preserve in New Smyrna Beach, Florida. Even a single visit to this oasis can result in a drop in blood pressure it is so lovely and calming. Largely due to Margie’s influence, ACA has launched a Community Arts and Wellness Initiative focusing on connecting artists with patients and caregivers. I love the fact ACA is using the Creative Caregiving Guide to help all age demographics, from residents at the Ocean View Nursing and Rehab Center to homeless high school students.
Atlantic Center for the Arts
Arts and wellness programs are being introduced in medical schools at Harvard, Cornell, Columbia, and (thanks to Margie Pabst Steinmetz) at the University of Central Florida’s new medical school. They are finding that engagement with the arts is helpful in brain injuries, PTSD, and Alzheimer’s. Studies are finding emersion in the arts makes for better, happier and more empathetic doctors.
I have confessed in previous posts to being a creativity evangelist, so convinced am I of the potential life changing capabilities of creativity. I’m happy to have met Margie Pabst who is this description on steroids. She is proving that even a little creative thinking can have seismic changes in our community.
||A Stepson Reconsiders
a Long-Held Resentment
A lot of blended families don’t really blend: the new “relatives” at first try to join together, but then they quietly distance themselves, however awkwardly, as differences and conflicts emerge, even as they try to pretend otherwise. My stepfather, Steve, and I made no such pretense—we were enemies from the start.
He entered my life when I was a cocky 16-year-old, about a year-and-a-half after the death of my own father from brain cancer. Steve was 45 at the time, and had already suffered a lifetime of tragedies, including the death of his mother when he was 6, 18 months of hard combat behind enemy lines in the Korean War, and the jolt of discovering his first wife in bed with another man. He was fixed up with my mother by mutual friends, latched onto her quickly, and held on tight, with no interest in dealing with her impudent children, especially the oldest son (me), who resembled the beloved husband for whom she still grieved.
I resented him from the moment I saw him. He was short and stocky; my dad had been tall. He was loud, opinionated, and boorish; my dad had taught me that only posers prattle on. He drank too much; my dad barely imbibed. For my mother’s sake, I spoke cordially to him, when I had to. But as we sidled past each other in the narrow hallways of the house, barely grunting acknowledgment, I saw an unwanted intruder with a hard, insolent stare. He saw a sneering, long-haired punk.
We might yet have found ways to bond. I loved riffing on my electric guitar, and he had a gifted musical ear, which allowed him to play any tune on the piano or banjo. He could fix anything, rewire the house, and put in new plumbing—skills I would’ve liked to have learned. But we remained caricatures to one another—usurping stepfather and disapproving stepson, Claudius and Hamlet. Even after I’d gone away to college and a productive adult life, tensions between us never eased. Greater distance helped us avoid overt conflict, nothing more.
On some level, I could see how my mother enjoyed caring for this moody, half-child man who could be both the joking, bragging life of the party and the needy, morose sulker in the corner. Steve worshipped her; she suckled him. When he turned 65 and insisted they retire and move to a South Florida gated community so he could play golf three times a week, she gave in, moving a thousand miles away from me and my growing family. To help him ward off his periodic depressions, she planned annual world excursions for them: Danube river cruise, African safari, Thai forest trek, Australian bush tour. For two decades, it seemed my most frequent communication with her was by postcard, with little contact with him. He was a curt voice on the phone before handing the receiver to my mom.
Then, as often happens when families enter the phase of late life, illness and reduced economic circumstances thrust us together to learn to relate differently. As he entered old age, Steve could no longer balance the checkbook, express himself intelligibly, or recall events. My mother long denied his progressing dementia—protectively speaking and remembering for him until eventually she took him to a neurologist for the dreaded diagnosis and futile meds. As his disease became worse and my mother became overwhelmed, I grew concerned about her health. Then she shocked me by calling me at work one day to ask me to send her $30,000 immediately to pay off debts. I’d been clueless that they’d lived too high for too long; their posh Florida condo and those exotic trips had cost them. Instead, I persuaded her to file for bankruptcy and, at my wife’s suggestion, for the two of them to move back up North to live in an apartment a mile from our Pennsylvania home so that we were near enough to help. We were now going to be a caregiving family.
I approached this change anxiously. We hadn’t lived in the same city for more than 25 years and didn’t know each other well. Even though what I knew of Steve I didn’t like, I still had the sense that caring for frail older adults was the right thing to do. I wanted my teenage children to learn that family value and I thought I owed my mother my help. Besides, having already written a book on caring for aging parents, I found it impossible to turn away from the challenge in real life.
The Steve who stepped off the plane in Philadelphia from Florida was a shrunken, weaker version of the man I first met.
His face was still cast in a mask of mild disdain, but his eyes now darted about uncertainly. As he walked, he shambled and swayed. On that first night, he tripped on the front step on the way into my house, hitting the paved walkway hard and ripping deep gashes in his thin, bony elbow and shin. As I quickly picked him up under his arms and propped him back on his feet, I could feel his ribs and how emaciated he’d become. He was light as a child. For the first time in my life, I had a feeling of sympathy for him, even admiration. He didn’t complain about pain or gape at his profusely bleeding wounds. While literally in the hands of his hated stepson and unable to hide his vulnerability, he still tried to maintain his dignity by keeping calm and holding his head up.
Life over the next year became organized by caregiving routines. My wife and I provided dinner for them three times a week, drove them to doctors’ appointments, picked up groceries. My mother fussed over and comforted Steve. Because he was no longer capable of stringing more than a few words together, Steve and I didn’t talk any more than we ever had, but his steady decline also peeled back his personality’s defenses—the Korean War vet gruffness, the smirks and condescension—exposing a raw, elemental openness. As I straightened up around their apartment or prepared lunch, I’d catch him watching me intently from his armchair with the wide-eyed, beseeching look of a curious 3-year-old. When I’d speak to him directly, he’d now smile back at me broadly with the rapt ardor of a puppy dog obeying the alpha male in a way I found both astonishing and disconcerting. The poles of our relationship had become unmoored. leaving me unsure whether this radical change was just an artifact of dementia or genuine gratitude.
Then things went rapidly downhill. Steve began wandering about the apartment at night in confusion while my mother slept too deeply. On several nights, he got out his toolkit and tinkered. One morning my mother woke to find he’d disconnected the faucets from the sinks and removed the metal protective plates from the electrical outlets. She feared he’d do something even more dangerous without 24-hour supervision. Though anguished and guilty, she decided to place him in a local nursing home.
I had mixed feelings about this. The part of me that was still invested in hating him thought, Just desserts. The bastard had it coming for a long time. But another part of me was softening toward him, wondering what this terrible diminishment must be like for him and what was going on in his failing mind. He’d lost so much in his life, then gained stability and comfort with my mother, only to now lose that, too. On my many visits to the nursing home, I’d watch him sitting at a table in the crowded and noisy day room of the dementia unit, staring blankly, getting thinner and more fog-bound with each passing month. His face—gaunt and impassive with numerous red sores and flaking skin—now prevented me from discerning his thoughts or emotions. To my surprise, that frustrated me. I couldn’t easily dismiss him as my damn stepdad; I felt sorry for him.
About two years after he’d moved to the nursing home, Steve died of sepsis due to bed sores. It was ironic to me that, of all the people in his 81 years of life, it was left to me, his most distant relation, to organize his funeral. On a hot July day, I led a group of 20 family members and friends on foot from the cemetery reception area to the plot where his ashes were to be buried. One by one, cousins and nieces stood at his graveside and told stories of how caring he was, how sensitive and attentive, how his humor lightened their lives. I stayed off to the side, feeling as wooden and hollow as the small, polished box of his cremains that I tightly held. Who was this man they were talking about? I didn’t know.
In the three years since, I can’t say I’ve actually grieved for Steve with any sadness or longing. Still, there’s a gnawing sense of having missed something important to my own identity. I’ve realized that for most of my adult life, I’ve thought of him as my foil, my anti-mentor, without really knowing the person against whom I pushed.
In the front closet in my mother’s apartment, I came across two dozen large photo albums of their exotic and expensive trips and began taking them down, one by one, to look at pictures of the life on the road he’d most enjoyed. In some, he looked young and virile and handsome—a good athlete, as my own father had been. In others, he beamed from some English castle tower, or struck a gallant pose on the Great Wall of China, or held my mother’s hand tenderly in some Italian square. I discovered that he was both well-organized and sentimental. The photos were put into the albums with great care and with labels of time and place handwritten in a steady, neat print. In some of the albums, I found he’d included trip diaries with enthusiastic and detailed descriptions he’d written of restaurants where they’d dined, sights they’d seen, and traveling American couples they’d befriended. These albums held no evidence of the aloof and disdainful man I’d experienced. Instead, here resided a big-hearted lover of life.
To my great surprise, the albums also included many photos of me and my wife and children at various places and times. They had the same neat labeling and care. Had he taken secret enjoyment in being with us, too?
So for nearly four decades, Steve and I knew—or didn’t know—each other, never advancing beyond the adversarial roles into which we first fell. Yes, I was and am the loyal protector of my father’s memory. But couldn’t I have still broken the ice with my stepfather? Why didn’t he? It’s only now, as the resentments that fueled our disconnection fade into the past, that I find myself embracing the process of trying to understand him and acknowledging the part of myself forever intertwined with him.
This blog is excerpted from "Intimate Enemies" by Barry Jacobs. The full version is available in the November/December 2016 issue, The Next Big Thing?: Psychotherapy and the Virtual Revolution.
||Caregivers Speak Blog:
Finding Your Inner Chutzpah!
By Bonnie Friedman
Advocating for a loved one who is ill requires many things – time, attention and perseverance to start. Diplomacy and respect are other essential ingredients. But effective advocacy also requires a strong dose of chutzpah, that wonderful Yiddish word
blending personal guts and gumption. I have been advocating for my husband Bob for more than a quarter century through multiple hospitalizations and illnesses. One thing I have learned is that my role is as important as the doctors and nurses in ensuring he gets the best medical care. Acting on that knowledge means working with medical professionals as an equal, trusting my instincts and speaking up when I have questions or think something is wrong.
Lucky me! I was born with a chutzpah gene. But not everyone is so fortunate. Some are overwhelmed by the bureaucracy of a hospital or the complexity of our health care system. Others feel intimidated by medical professionals who speak in technical
terms that are hard to understand. Still others think doctors are gods who should not be questioned. But making sure your loved one gets the best medical care requires the full involvement and participation of a family member or very close friend, especially when the patient is hospitalized. Doctors are busy, often forced to practice medicine by the clock. Nurses are routinely overworked and understaffed. Health care can be fragmented, and electronic medical records are no substitute for good communication. One of the most important jobs of the advocate is connecting the dots – asking the right questions, paying attention to details and making sure that the entire medical team is on the same page. Taking up the charge requires confidence. That can start with basic research to better understand the patient’s condition and be poised to ask smart questions.
Keeping good notes and staying organized helps the advocate pay attention to details and follow up on questions or concerns. Doctors don’t always communicate well with one another, and nurses are sometimes left out of the loop. Issues can fall between the cracks, and misunderstandings can affect patient care. A well-informed advocate can help keep communication flowing. Advocates who are strong, persistent and professional get a better response from doctors too. Acting with diplomacy
and respect means you are more likely to receive them in return.
When you put it all together – education, organization and perseverance – confidence in your role as an advocate can grow. The more you do it, the better you get at it. Start by believing in yourself. Remember, you know the patient better than anyone else in the hospital.
Think about a time in your life when you felt confident about your role – perhaps at work or in a community or other organizational setting. Draw upon your strengths, life experiences, street smarts and common sense. You can apply that sense of assurance to your advocacy role. Practice asking questions or making your case in advance. If you’re still not feeling confident, be prepared to act the part, knowing even a shaky start is better than no start at all. Before you know it, you will have
some chutzpah of your own.
||The Caregiving Dilemma
By Elaine A. Malec, PhD
For most families, there will come a time when one of the family members need help. Maybe it is as simple as picking them up from a medical procedure where they were told they can’t drive. Maybe, it is helping them move in to a new home. Helping family member is what families do. Helping is not something that changes the relationship, it’s part of being in a relationship. Except when it comes to caregiving.
Caregiving takes the primary role a person has in the family and requires it to change. For example, a daughter grows up with her mother being the “parent” and all the expectations that come with that role. A mother is the daughter’s role model (for better or worse) on what it means to be a woman and a spouse. As the daughter becomes an adult, the relationship between the mother and daughter becomes stressed as each tries to develop a healthy adult relationship with the other. This transition isn’t always smooth and it doesn’t end when the daughter turns 18 or even when she marries and has her own family. What happens when a daughter becomes the primary caregiver for her mother is the relationship dynamics stall out. Caregiving requires the daughter to limit how much she is willing to stress the relationship in order to gain her own independence and to get the validation from her mother that she is indeed a grown woman. A daughter must become her own person. She needs her mom to accept her as a separate person in order for the relationship to be fulfilling for both. How does a daughter insist that her mother treat her like an equal when her mother needs the daughter to be her caregiver? How does the daughter focus how to become her mother’s equal, when her mother is frail or ill? Instead of the mother and daughter continuing to work towards becoming equal adults in the relationship, the roles become reversed and the daughter becomes the mother, or at least takes on the role of providing care for her. In most cases, the role of caregiving becomes all consuming. The natural dynamics between mother and daughter are put aside and the focus is on how the daughter will fulfill the duties and responsibilities of caring for her mother’s growing needs.
In order for the mother and daughter to address this dilemma, they need to recognize the toll caregiving can take on their natural progression through this mother-daughter dynamic. They need to continue to have time together outside of the caregiving responsibilities. Keeping mutual interests up, whether it is conversation about gardening or going to the theater or watching a movie together, a mother-daughter relationship needs to be continually nurtured so both feel it is still satisfying. The daughter also needs to rely on her mother like good friends rely on each other. Often daughters who are caregivers do all the problem-solving and don’t feel it “right” to rely on their aging parent. However, this reluctance can rob the mother of feeling like she still has value.
Without a doubt, caregiving within a family can make a real change in the primary roles people play in a family. This change can prevent the natural evolution of these relationships and erode the health and meaning of them. However, there are ways to keep relationships from becoming one dimensional.
Elaine A. Malec, PhD on Margery's Radio Show - CLICK HERE
||Vanessa Jones Briscoe, PhD, MSN, ARNP
Department Chair, Aging Studies
College of Health Sciences
Daytona Beach, FL
Hi my name is Vanessa and I have some exciting information to share; thanks to the National Center for Creative Aging (NCCA) initiative. I am the Department Chair of Aging Studies at Bethune-Cookman University (B-CU) located in Daytona Beach, FL. Our students graduate with a Bachelor of Science Degree in Aging Studies; and are compassionate and anxious to help older adults as they move into their career path of gerontology.
We started an intergeneration project; called Time-Out Respite Program (Time-Out). Students are matched with a hospice client to provide “companion care” and relieve the caregiver during their assigned visits. Time-Out had a positive impact on clients, caregivers and students. Students reported forming meaningful relationships with their families and noted better understanding of the strengths of older adults as well as the challenges they face at end-of-life. They (the students) were always seeking ways to engage their clients in meaningful activities.
Meanwhile, B-CU initiated another out-reach to educate Caregivers in our community. And as luck would have it, I became an Ambassador for the NCCA Creative Caregiving Guide (launched nationally in October, 2015). The NCCA Creative Caregiving Guide© is a FREE, web-based and community-shared resource specially designed for both family and professional caregivers of adults who live with Alzheimer's disease and related cognitive disorders. This tool (I thought) would be perfect for my students to interact with their clients in the Time-Out program and the Caregivers in our community. The leadership of the NCCA has agreed to help us put our plans into action at the stage play “Forget Me Not”. The performance is Saturday, May 14, 2016 at 2:00 pm. The play will be held at B-CU Performing Arts Center. For more information call 202-349-3803. Please join us for the kick-off and be prepared to have a “Good Time”!
Gary Glazner on the National Center for Creative Aging: Creative Caregiving Guide©
One of the projects that I am most proud of participating in is the National Center for Creative Aging (NCCA): Creative Caregiving Guide©. In conjunction with my interview on eCareDiary with Margery Pabst, who is a dear friend and the Board President of the NCCA, I want to look at the Creative Caregiving Guide© through the voice of a caregiver, the author Rebecca Solnit. A leading and well-loved non-fiction writer, she is probably best known for her essay “Men Explain Things to Me.”
Link to Creative Caregiving Guide©
I am participating in a book club and we are reading on the theme of memory. I was intrigued when she introduces her mother, who is the first stages of memory loss, in the opening chapter of the “The Faraway Nearby.”
Solnit’s writing on dementia and her relationship with a loved one is among the best I have read. Anyone going through the caregiving experience with a parent, partner, friend, neighbor will benefit from reading, “The Faraway Nearby.”
“She became a geriatric delinquent, prone to lashing out and running away. We tried to forestall her solo expeditions by talking her on a long walk every morning through the pleasant residential streets with their burgeoning flower gardens. Then the rest of my conversations with her were chaotic or perilous, I talk to her mostly about the colors of the houses and about irises, honey-suckle, nasturtiums, passionflowers, sunflowers, morning glories, and the other plants we passed on those walks.”
You can almost feel the warmth a fragrance of the spring air filled with a blaze of color. Solnit does two things here that relate to using arts with a person navigating memory loss that are at the core of the Creative Caregiving Guide©. The first is she stays in the moment by focusing their discussion and attention on what is in front of her and her mother. Second she steps outside of their normal routine to spend time together on the walk.
The Creative Caregiving Guide© is about being in the moment and carving out a little time from the things we have to do each day when we are caring for each other.
For me as the founder and Executive Director of the Alzheimer’s Poetry Project I started jumping for joy when I read, “As I was writing this I went to see my mother, and a little way into trying to be with her in the era past when she would murmur more than an occasional word and I would only rarely understand it, I remembered that I had a copy of Rilke’s Dunino Elegies with me and read three of them to her. In one of them were the words, ‘what we’re now striving for was once/nearer and truer and attached to us/ with infinite tenderness. Here all is distance/ There it was breath… It was a good way to keep talking and I listened too, and the familiar lines became more fiercely elegiac, more stern and wild spoken aloud.”
Solnit gets to the heart of the Creative Caregiving Guide©, when she writes about using poetry as a good way to keep talking and how she also listened deeply to the words. All of the lessons in the Creative Caregiving Guide© are communication tools and a way to be together. For us to see, hear and listen deeply to each other.