Bringing Gezellig to Lives of Older Adults

Towards the end of his life, my father was left debilitated by stroke and vascular dementia. To keep his spirits high, I would find activities we could enjoy together, such as listening to music, singing and reminiscing. In looking back, those moments were magical and made us feel happy. 

-- Koko Kawasaki

Very recently, I learned about Gezellig Magazine, a digital publication filled with an array of creative activities for older adults and care partners to enjoy together. The brainchild of Debora Tingley and Patricia Ris, organizers of the Memory Care Café in the San Francisco Bay Area, Gezellig Magazine is visually beautiful and warmly inviting. Browsing through the pages, I was captivated by the contents. Needless to say, I'm delighted to share an interview with Debora and Patricia who discuss their magazine and their inspired ideas.

Patricia Ris and Debora Tingley

What inspired you to create Gezellig Magazine?
We wanted to create an extension of Memory Care Café, as thousands of people in San Francisco are living with memory loss but we could only reach a small, mobile segment of that group. Both of us have wanted to create a magazine as a resource for aging people, so it felt like a natural thing for us to do together. There are very few (if any) similar products available at this time.

What does Gezellig mean?

Gezellig is a very common Dutch word. It evokes a sense of good circumstances and feelings, a kind of coziness, friendliness and homeyness. Gezellig often means being with others, in good company. The atmosphere of a place can be gezellig, and a home can be gezellig. Gezellig Magazine aspires to bring this idea and feeling into day-to-day life. 

Where do you get the ideas for your wonderful activities?
This is one of our favorite things to do! Before we started the magazine, we found it very easy to come up with a year’s worth of topics and were able to outline our six issues in a matter of weeks! That flow likely has to do with our complementary strengths and our aligned passion for supporting care partners.

In terms of topic choice, we’re not so interested in traditional fare, but look for new activities that we’d like to do ourselves, or share with our parents and friends. Seasonal topics are important to bring the outside world in, and to help with awareness of the world around us. Of equal importance are new trends, contemporary approaches and hip topics. Our recent articles include creating personalized emojis and Be Your Own Radio Show Host, about making personal playlists, and these two examples reflect typical interests of our readers.

Nov/Dec 2016 Issue

Are there challenges in creating activities for elders and care partners to share together? If so, could you give some examples?

To appeal to our diverse audience, we created seven categories of activities to highlight different areas of interest. Within these categories, which are listed below, we offer as much variety as possible so that the activities may appeal to people from all walks of life. 

• GO: getting out and moving with a purpose
• WORDS: inspiring thoughts and actions with words
• BY HAND: easy, inventive crafts that inspire the heart and mind
• OUTSIDE: connecting with nature and life around us
• SENSES: treats for the senses
• DIGITAL: fun and simple ways to engage through the Internet
• FOOD: tasty, easy recipes to make together, chosen with current health trends in mind

Each magazine article incorporates various levels of participation. The Day of the Dead Calaveras (Skulls) making in our November/December issue, for example, offers both easy and more complex versions of the recipe. In addition, conversational material is included, in case the “doing” is not possible. In our free issue, we have an article titled Car List Poetry, about creating a poem. This activity can be enjoyed in a question and answer style, but it also lends itself very well to individuals composing their own poetry. 

Mary Beth, a reader from San Francisco, commented: "I loved the line poem about your Deux Chevaux. Lots of memories of hitch-hiking around France in those cars. Glad you put the front-door handle in the right place for the vintage I remember."

The main idea is to help people find what’s appropriate for them and not put them in a box about what they can or cannot do. People experience good days and bad days, and cognitive challenges (especially) vary greatly in one individual from day-to-day. That’s why we create our activities with the highest possible level of participation in mind, along with adaptations for specific needs woven in. The challenge is figuring out how to present options for different levels of ability in a way that is clear without discouraging people from trying something outside their perceived abilities and/or comfort zones.

What are some initial responses to the magazine? 
Here are a handful of testimonials straight from the readers:

"What a wonderful magazine Gezellig is! It looks beautiful, it is very user friendly, full of inspiring articles, ideas, outings and games and I wish we had a similar magazine in the Netherlands. A must read (and must subscribe!) for anyone who is a caregiver or family member or a senior who wants to stay active and enjoy life!" – Nanette R., Amsterdam

"This magazine takes minutes to read but gives you hours of ideas for great conversation, outings and activities…The content is well thought through and presented with purpose. I would recommend it to Elders and care partners alike." – Sean M., Sebastopol, CA

"Gezellig allowed me to engage with my parents through a very entertaining, portable and interesting platform. I felt like we were really doing something together—and not just sitting around the TV! Thank you Gezellig for your creative product!" – June K., Santa Rosa, CA

How can people contribute ideas they may have? 

We welcome contributions from readers and also from professionals. For example, healthy cooking expert Rebecca Katz generously contributed one of her favorite soup recipes, Moroccan Carrot Soup from her most recent Clean Soups cookbook. An article on making this soup is included in our current November/December issue. (Note: A link for the recipe is included at the end).

For readers, we have an invitation at the end of almost every article to share thoughts, send pictures of what they’ve created, or to send us their ideas through our gezellig community webpage. In January 2017, we will have a forum where care partners can share lifestyle ideas with each other--another opportunity for readers to take the helm and create a real, gezellig community to thrive in!

A heartfelt thank you to Patricia and Debora for their commitment to the wellbeing of older adults and for the passion, creativity and joy they bring to Gezellig Magazine. Dear blog readers, it's the perfect time of year to create a gezellig atmosphere with loved ones, so be sure to visit gezelligmagazine.com. Here are two fantastic recipes from the current issue for you to try:
Moroccan Carrot Soup: http://bit.ly/2fHfj1O
Day of the Dead Calaveras: http://bit.ly/2fnY4ihb 

On the Topic of Robots at The Legacy Film Festival on Aging

Left: Robot Dog. Right: Alice Cares.

As a graduate student, I conducted a literature review on the subject of robots as caregivers for older adults. A few professors thought this topic was controversial and would not support my paper. Even with the proliferation of robotics technology, the idea of using robots to augment the caregiver shortage is often met with ambivalence. On this subject, two robot-themed films were featured in the 6th Annual Legacy Film Festival on Aging (LFFoA): Robot Dog, directed by Drea Cooper and Zackary Canepari, about an aging (presumably childless) Japanese couple and their beloved robotic dogs, and Alice Cares, directed by Sander Burger, on a Dutch pilot study pairing Alice, a social 'care-bot', with older women who lived alone. In both films, robots provided companionship and helped decrease feelings of loneliness. In addition, Alice encouraged healthy behaviors and inspired social interactions between its users and other people.

After the screening, I co-facilitated a discussion and Q&A with Victor Wang, an MIT-trained roboticist and researcher. The interactions between the subjects and robots in the films were mainly positive, and many LFFoA audience members found the films and discussion interesting and educational. A few, however, expressed concerns, and even disapproval of the idea of robots as caregivers. I was not surprised that some people would find the idea distressing, as I found similar opinions among professors and classmates regarding my literature review topic on robots and caregiving.

Concerns often revolve around fears that reliance on robots would lead to elder neglect, or that robots would gain too much control over people. Robot technology is far from being perfect, but it's fair to say that having human caregivers does not guarantee that older adults would always receive the best care. Geriatrician Dr. Louise Aronson states many caregivers are overworked, and supplementing care with robots may reduce neglect and abuse. From a logistical standpoint, Johan Hoorn, the researcher from the Alice robot study, states that there won't be enough people to provide care for the global aging population. Utilizing robots, therefore, may become a necessity.

Left: Alice Cares. Right: Audience discussion with Victor & Koko. 

Many of our beliefs are shaped by our cultural environments, and until recently, caregiving was provided solely by people. It's no wonder that many older adults are uncomfortable with the idea of receiving assistance from robots. In contrast, the Japanese are enthusiastic towards the use of personal robots. Author Christopher Mims suggests that Japanese share the cultural belief that everything has a soul, which was also mentioned in Robot Dog. This may partially explain why older Japanese do not seem as distressed over the use of caregiving robots. Personally, I see myself utilizing robots in older age and wonder if my attitudes stem from my Japanese heritage and from growing up in a technology-dependent environment? In addition to receiving practical assistance, a robot's cool impartiality appeals to me as I imagine it would not care how old I am, what I look like, or be irritated by my personality quirks. It would not lose patience if I become forgetful due to memory changes, and it would not take things personally if I'm in a foul mood and should utter unkind words.

Quite possibly, robots may help fill the caregiver shortage in the coming years. Nevertheless, it is always critical to include older adults in the entire process of creating robotic products so they can be active participants rather than passive recipients of technology. In looking back at the LFFoA, the films on robots and older adults stimulated honest conversations about ways to support our aging family members and to think of our own needs as we age. As always, I applaud LFFoA for featuring thought-provoking, socially relevant films on aging. I'm grateful for having had the opportunity to be part of this unique event!

Enough of Shaming, Let's Create Community

The number one thing caregivers can do for other caregivers is to say 'you are not alone.' -- Alexandra Drane

Earlier this week, I read an article on nextavenue.com titled, When You Are Shamed for Moving a Parent into a Care Center. Author and gerontologist Rachael Wonderlin wrote of caregivers being harshly criticized for placing loved ones into long-term care communities. This article resonated with me because I was a caregiver for my late father and also made the difficult choice of moving him into a care home. I had hoped relatives and friends would be supportive of my decision. Instead, they were outraged and accused me of being an unfilial daughter. 

Together with the staff, we wished Dad a happy birthday.

At first, I tried to care for Dad at home, but his dementia worsened and he became debilitated due to multiple strokes. As Dad's care needs increased, many challenges arose including these examples:

• Dad lost mobility in his legs yet he would often jump out of bed and land on the floor at night. Incidentally, putting rails on the side of the bed did not work.
• We then placed a mattress on the floor, but he would wiggle off and bang his head on the wall or furniture as he attempted to maneuver his body. 
• Dad developed difficulties with swallowing but would refuse to eat soft, pureed foods and often threw plates on the floor in anger while blaming Mom for his situation. 
• Dad became agitated every night and would yell and bang on the walls until daylight. Me, Mom and Phu, my husband, took turns through the night to stay with Dad to soothe him.

I developed chronic insomnia, Mom had fainting spells due to blood-pressure spikes, and Phu sometimes fell asleep at the wheel during his 40-minute commute to work. We hired caregivers to assist Dad, but we could not afford round-the-clock care. Needless to say, I opted to find a long-term care home as Dad's safety became the biggest concern.

As we moved Dad into a care home, we were shunned by family friends. Even so, I continued to do my best to ensure that Dad's quality of life would not be compromised. It was by no means a perfect situation, but Dad's condition stabilized as he ate balanced meals and received the support he needed from a warm, caring staff. In addition, my parents' relationship improved as Dad began to express appreciation for Mom for the first time in over 40 years of marriage. I had also become closer to Dad, as I visited him daily to keep him company.

Say Cheese!

Since Dad's passing in 2010, I've earned a Master's in gerontology and learned about resources and information available for family caregivers. As I reflect on my experience, I firmly believe that caregivers need understanding, encouragement, and a caring community of friends and family. Guilt and worry come second-nature to many of us, so please stop the shaming and offer a helping hand or a shoulder to lean on!

On the subject of long-term care facilities, I recently had an opportunity to share my tip for family caregivers on the Association for Long Term Care Planning (ALTCP) website. ALTCP is a nonprofit organization providing free information, resources and expert advice on planning for long-term care -- what a great service! Here is the blog post: 20 Experts Talk: DOs and DONTs When Visiting Mom and Dad at the Long Term Care Facility. It was an honor to be included among caregiving experts I trust and respect. Together, we are all part of a wider community supporting caregivers who unselfishly look after their loved ones everyday.

Is Independence Overrated?

Mom as a young lady.

Have realistic expectations for the kind of help you are seeking
Express your needs simply and clearly
Let others know you are there to help them as well
Praise your pals for their assistance and pat yourself for asking for help

-- Acronym for HELP by Dr. Deborah Serani

Recently, my husband and I returned from a short vacation and found Mom to be in a very grumpy mood. She stated that she pressed the wrong button on her remote so she could not get the television to work. In addition, the heater wasn't strong enough to keep her living room warm so she was freezing. All in all, Mom said she had a miserable week.

I asked her why she didn't call her friends, many of whom live within walking distance, to help figure out her television and heating dilemmas? Many of her friends also have children who live close by, within 5-10 minutes, who could resolve her issues in a pinch. Mom quietly uttered that she didn't want to be a burden to anyone. Though I wasn't entirely surprised by her comment, it made me wonder why Mom might choose to be miserable when her friends would be happy to help her.

This episode made me recall an earlier experience of Mom's friend who refused to accept help from friends and family as she faced cancer. Struggling physically and financially, she didn't want to be a burden and thought she could manage on her own. Sadly, the situation did not end well. Both Mom and her friend's experiences made me ponder why it's so hard to ask for help. There seems to be an element of shame involved in admitting we need help, but why?

Psychologist Dr. Deborah Serani discusses various myths that keep people from asking for help, and one particular myth that stood out is that asking for help makes us look vulnerable. There is also the stereotype of the frail elder that exists in society, which combined with the myths of needing help, that might make some older adults hesitant in asking for assistance. Mom's situation might also include some cultural expectations she has for me as her daughter (but we'll save this topic for another time).

In light of this situation, I try not to be too harsh with Mom. Having been raised to not be a burden to others, I may also face similar dilemmas in the not-so-far future. Rather than wondering why other people don't ask for help, however, I think I will muster up the courage to start asking for help more often. Knowing that most people enjoy supporting others, I resolve to be open to receiving help when I need it. I welcome your views on this topic. Do you think independence is overrated?

For the Sake of Love

As always, The Legacy Film Festival on Aging gives great food for thought on the multi-faceted nature of aging. This past festival was certainly no exception! Of the many thoughtful offerings, the documentary Mimi and Dona was the most unforgettable. The story is about Mimi, a devoted mother and lifelong caregiver to her 64-year old daughter Dona who had been born with an intellectual disability. At 92, caregiving was becoming too exhausting for Mimi and she had to make difficult choices to protect both herself and Dona. Filled with both heart-warming and heartbreaking moments, there were many teary-eyed viewers in the audience (myself included) who were deeply moved by the unshakable mother-daughter bond.

I continued to think about this story for days afterward, and it brought back many different memories of my dad, including the period before his physical and cognitive decline. Deeply worried about his unmarried daughter, Dad would give me money whenever I visited. I refused the handouts most of the time, but would eventually give in due to his insistence. When I found out that my parents had financial struggles, I scolded Dad for being irresponsible in giving me money. As I recall the hurt look on his face, I now realize Dad wanted to protect me even though he needed protection himself. 

In seeing Mimi's willingness to sacrifice her own wellbeing to care for Dona, I have greater appreciation for my dad's deep, genuine love. This recognition has been a powerful experience, and perhaps the reason why my eyes were flooded with tears during the viewing. I'm grateful to director Sophie Sartain for sharing the beautiful, personal story of her family, which is a universal love story transcending cultural barriers. Kudos to the Legacy Film Festival on Aging for hosting yet another unique, socially relevant event!

NOTE: Mimi and Dona is scheduled to air on public television in November, please check for listings!

Left: Me and my dad on my wedding day. Right: Chatting with Sophie after the viewing. (Photo: Phu Trang)

Caregiving and Cultural Expectations

"I am in between. Trying to write to be understood by those who matter to me, yet also trying to push my mind with ideas beyond the everyday. It is another borderland I inhabit. Not quite here nor there. On good days I feel I am a bridge. On bad days I just feel alone."

-- Sergio Troncoso, Crossing Borders, Personal Essays

Recently, I had the unique opportunity to share a personal experience regarding sibling conflicts in caregiving on OurParents.com. This experience led to my reflecting on cultural differences and expectations regarding the care of aging parents. I grew up in an immigrant household where I assumed responsibilities for grown-up tasks from a fairly young age, including translating business documents and accompanying my parents to their medical appointments. I often felt overwhelmed by my role as a broker between the Japanese and American cultures as I had yet to master English. 

As a child, I didn’t think about cultural differences; I simply wanted to fit in with my American peers who seemed to have the freedom to explore their childhood. I now realize that my experience was not unusual, and that there were many other children from immigrant families who shared similar situations. We didn’t have discussions about our circumstances and therefore, I thought I was in the minority. Like myself, other children from immigrant families may have wanted to be accepted and to be seen as "normal" American youth.

For children of immigrants, challenges become greater in adulthood when aging parents require more care. Due to language barriers and cultural needs, immigrants have fewer relevant resources to rely upon as they age. Thus, it is not uncommon for adult children to provide care for aging parents while juggling careers and raising their own families. In large families, caregiving may seem less daunting because tasks can be divided. Even so, having siblings does not guarantee that the caregiving process would be easy as circumstances vary.

My family and relatives on a boat ride

In American society, there seems to be a growing awareness of caregivers’ needs and conversations about supporting a diverse aging population. Things are far from being perfect, but I am hopeful that sensible options can be created to respect the needs of aging immigrant parents and their adult children in the coming years. My mother is 87 years old, and we are fortunate that she still drives, exercises daily, and enjoys various activities with her friends. Nonetheless, I know that things may change and that I would eventually assume greater responsibility to assist her (willingly, of course)! Fortunately, studying gerontology and working with aging-related organizations will be useful, as I now have more knowledge and resources to support Mom in a culturally-sensitive, caring manner.

Thanks for reading this post. Would love to hear your ideas and experiences on this subject.

Grateful.

Gratitude is the key to unlocking a more open and rewarding perspective on life. Feelings of appreciation are always accompanied by the elevation of one's state of life and the broadening of one's perspective. And, the more our life expands, the more profound our sense of gratitude becomes, to the point where we can feel appreciation even for the problems we face in life. -- Daisaku Ikeda

Awhile back when I was a caregiver for my father, I noticed that some people would show their support by sympathizing with my plight. “Oh, it must be so hard for you.” “I’m sorry that you have to endure this.” “How horrible that your father is no longer able to walk nor care for himself.” “You look tired, you poor thing!”

Alternatively, others congratulated me for encountering struggles, and encouraged me to win over my obstacles. Initially, I wanted sympathy and felt comforted by those who felt sorry for me. As I overcame my internal challenges, I found that sympathetic remarks, though well meaning, hindered my growth. In my weakness, I sought a “cushion” to protect me from reality, but I came to realize that the idea of security is an illusion. The truly compassionate were those who were strict and urged me to plow through my difficulties. Furthermore, those who criticized me turned out to be my “best friends” because their words aroused my determination to create a happier life for my family. Likewise, Nichiren states, "...it is not one's allies but one's powerful enemies who assist one's progress ('The Actions of the Votary of the Lotus Sutra,' WND-1, 770)."  

My little ones!

On this Thanksgiving Day, I am grateful for my husband, my mom, my late father, my feline “babies,” my friends, Sensei, my Buddhist practice, health, and an opportunity to further my education. I am especially grateful for the hardships I’ve had as a caregiver: the lonely, sleepless nights; uncertainty of my father’s health; family conflict; financial hardships. I’m most appreciative, however, to those who shunned me and accused me of being an uncaring daughter. Believe it or not, the harshness of some peoples’ attitudes became nourishment for spiritual growth.

"The struggles we face might range from the apparently mundane (summoning the energy to take out the trash or to write a letter to a relative) to the vast (campaigning to ban nuclear weapons), but the essential challenge is the same. It is to overcome our own weakness, fear or inertia in a given moment and take action for the sake of the happiness of ourselves and others (SGI Quarterly, July 2006)." With this sentiment, I am sincerely grateful to you for visiting my blog. Have a wonderful Thanksgiving, and enjoy every moment!