By Jennifer Tinkelenberg–
Frank, a San Francisco resident, is a caregiver for his mother Gundi, who lives on the other side of the world in Berlin, Germany. Through the help of technology and a very supportive local community near his mom, Frank is able to care for her long distance. Now Frank is looking for his caregiving community in San Francisco, which he hopes to find this fall at the 2024 San Francisco Walk to End Alzheimer’s on Saturday, October 19 (https://bit.ly/3MPrFkY).
Saving a Life
Gundi was raised by a single mother in Germany after World War II. An only child, Gundi was afraid of everything and was constantly bullied. As a young woman, she met a man whom she thought she might love and got engaged. Just before the wedding, she decided she didn’t want to get married. Her mother informed her that not getting married wasn’t an option and the couple were wed.
“My mum never learned how to love herself,” said Frank. “When I was a kid [my parents] had a love/hate relationship. [My] connection [with her] was always easy, I always laughed and smiled, and my mother put all the love in me. My mother saved my life, she took me away from my father. My father wanted me to not be a gay teen. He would have talked me into hating myself.”
Finding the Love
In 2016, Frank moved away from Germany to San Francisco. There he became a tour guide for German-speaking tourists. San Francisco is also where Frank met his partner, Brent. One day, after Frank got off the phone with his mother, Brent commented that Frank was screaming at his mother and how angry Frank sounded.
Frank was able to take a step back and realize that Brent was right. From then on, Frank changed the way he connected with his mother. He started asking her questions about her life. Frank said, “I suddenly listened to her, I took her as a real woman with a story and background, not just my mom.”
For the next three years, Frank did everything he could to bring love into his mother’s life. “I taught my mother love in every way possible and I saw it was working,” he said. “She let go of the anger for my father, she let go of the anger of her life. She had never traveled. I took her everywhere. I took her to New York; I took her Hawaii; I went with her to Disneyland. For three years, I showed her the world.”
In 2020, Gundi was diagnosed with cancer, and then in 2021 she received a dementia diagnosis as well. Frank reflected, “Once the hate was gone and there was a huge corner not filled; love was there and love cannot fill everything and suddenly the dementia filled that place.”
A Caregiving Community
Frank is the primary caregiver for his mother despite living half a world away. He has an amazing support system of friends who have become family. One friend in particular, Inge, does the bulk of the caregiving for Gundi and communicates her needs to Frank in his absence. In addition to Inge and other friends who check on his mom regularly, Frank has also set up a camera system in his mother’s house.
Thanks to the time difference, as Frank is ending his day, Gundi is just waking up. He wishes her a good morning as she starts her day. Each morning is filled with caregivers coming to get her ready for the day and take her places, such as adult daycare. Then, as Gundi’s day comes to an end, Frank’s day is just beginning. While he and Brent drink their morning coffee, they’re able to virtually tuck Gundi into bed each night.
Dancing With Mom
Now that Gundi is in the later stages of the disease, Frank travels to Berlin every three months. “You can’t get back that time,” said Frank. “I want to see her, it’s very important to me. [I used to] ask her about her childhood, but she can’t answer [those questions] anymore. Now I’m connecting with her through ABBA [the music group]. I dance with her all the time.
“We dance and we laugh and [we tell] dirty jokes. Our biggest connection is humor. Sometimes I feel like we’re really in the later stages, every time [I leave] Germany I have to say goodbye to another version of her. [But] whenever there is humor and music it’s like, oh, there’s my mother.”
Walk to End Alzheimer’s
In 2024, Brent and Frank attended a networking event where the Senior Director for Walk to End Alzheimer’s – San Francisco was in attendance. Brent, who had been introduced to the organization a year before, thought Frank might like to connect with the Alzheimer’s Association® and introduced him to the Senior Director. This was Frank’s first connection to the organization and to learning about Walk to End Alzheimer’s.
The Alzheimer’s Association Walk to End Alzheimer’s® is the world’s largest fundraiser for Alzheimer’s care, support, and research. This inspiring event calls on participants of all ages and abilities to join the fight against the disease.
Finding His Community
Frank and Brent signed up for Team Aviva In-Home Care (https://bit.ly/4d6C2f1) and are looking forward to their first Walk. “I have a support network in Germany but I don’t have one in America,” said Frank. “The most important thing is having a community and [I’m looking forward to] getting to know other people who have friends who have dementia. A support network is the most important thing. I love learning about people’s stories; we can only learn from each other.”
Be Patient
Alzheimer’s caregivers frequently report experiencing high levels of stress. It can be overwhelming to take care of a loved one with Alzheimer’s or other dementia, but too much stress can be harmful to both of you.
Frank remembers when he first found out about his mother’s diagnosis. He went through a range of thoughts and emotions:
• fear;
• not knowing how to help his mom;
• wanting to know everything;
• wanting to be perfect;
• feeling like he was the only person who could help his mom;
• convinced he was doing everythingwrong;
• feeling overwhelmed and wanting to quit.
“Be so patient with yourself and [the person living with the disease],” said Frank. “You cannot control your emotions. You can get therapy; you can get educated; find a support group; get advice; go to a group you can talk to. Surround yourself with knowledge and with what is possible right now.”
Frank not only considers himself a tour guide for tourists but also now, for his mother, navigating her through her new life. “It’s like
Alice and Wonderland. Your parent is now in Wonderland,” said Frank. “Think of yourself as the gatekeeper and helping your loved one guide through this land. It can be wonderful, scary, and magical. It can leave you in tears and laughter [when you] see the magic in everyday life. That’s what [people living with dementia] mostly react to; magic, music, and love.”
For more information on caregiving or to find an education program or support group, call the Alzheimer’s Association’s free 24/7 Helpline
at 800-272-3900
You can join Frank and Brent’s team, Team Aviva In-Home Care (https://bit.ly/4d6C2f1) or start your own team for Walk to End Alzheimer’s in San Francisco. This year’s Walk will take place on October 19, 2024, at Pier 27 on The Embarcadero. For those reading this who are not in or near San Francisco, you can find a Walk near you by visiting https://bit.ly/3Zsszvp
Jennifer Tinkelenberg is a Senior Communications Specialist at the Alzheimer’s Association of Northern California and Northern Nevada.
Aging in Community
Published on September 19, 2024
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