Will I Be Next?

Memory Cafés Serve Comfort & Laughter to Community

Memory Cafés Serve Comfort & Laughter to Community

It’s been 12 years since Alzheimer’s disease ended my mother’s time on earth. I miss her every day, and there is comfort in the words of Morrie Schwartz (Tuesdays with Morrie by Mitch Albom), “As long as we can love each other, and remember the feeling of love we had, we can die without ever really going away. All the love you created is still there. All the memories are still there. You live on—in the hearts of everyone you have touched and nurtured while you were here. Death ends a life, not a relationship.” Truth is, the older we get, the more precious are our memories. Once gone, what would we pay to get them back? Tragically, Alzheimer’s disease robs its victims and their families of the most tenacious grip onto their memories, and ultimately – of the very presence of their loved ones. THE CONCEPT OF ‘MEMORY CAFES’ The idea of Memory Cafés originated in the Netherlands in 1997, then spread to England in 2000. The first Alzheimer’s Café in the United States started in 2008 in Santa Fe, New Mexico. Today the number of memory cafés in the US is well over 200 and growing. Memory cafés are a safe haven for people experiencing early stage dementia, mild memory loss, or cognitive impairment, while offering concerned family members a hopeful connection to others in the larger dementia-care community. “It’s a group of people coming together and having a good time,” said Susan McFadden, Ph.D., one of the founders of Fox Valley Memory Project. Susan is a gerontologist, professor emerita in the psychology department at the University...
Dementia-Friendly Communities: The New Front Porch

Dementia-Friendly Communities: The New Front Porch

Bemidji, Redwood Falls, Mankato, Paynesville, Chippewa Falls, Fort Atkinson, Watertown, Green Bay… What does this list of communities in Minnesota and Wisconsin have in common other than their interesting names? They have all been on a mission to make their communities dementia friendly.  When I first heard about this growing movement, it took me by surprise. Not because I question the merits of their goal, but because the word “dementia” is front and center here. There is no code word used- no softening of the term. The the use of the word itself in the designation is progress! At the heart of this endeavor is the goal to foster a better quality of life for people with dementia and their caregivers. It also allows people who are in the earlier stages of the disease to potentially maintain their independence for a longer period of time, which benefits them and their families. It provides support for them and their caregivers when they are out in the community. All of these communities, like so many in the country, are experiencing increasing numbers of people with dementia living in their midst. These numbers are expected to continue to increase. Alzheimer’s alone (the most common form) is expected to rise 40% over the next decade, to 7.1 million from 5.1 million in the U.S.* A dementia-friendly community is one in which a person with dementia is able to do normal activities, such as go to the grocery store and do some shopping, go to the bank and make a deposit, or go to a coffee shop and order a latte’, even if they...
1500 Points of Light

1500 Points of Light

Before movies, we looked to the sky for stories. In the cast of constellations, we knew of relationships, pursuits, and transformations. We could tell when it was time to plant, which direction to travel, and what hardships may lie ahead. In the northern hemisphere, the approach of winter made each day darker and colder than the last, and it seemed as if the sun may disappear forever—until the appearance of Virgo “The Virgin” in the sky gave hope. And true enough, little by little, the sun and light returned. Death averted! Now with our winter holidays, we celebrate multiple miracles of light. The candles on the Hanukkah menorah commemorate when the menorah in the Temple of Jerusalem stayed lit for eight unlikely days during a time of liberation. Diwali is an ancient Hindu festival of lights that begins in the darkness of an autumnal new moon. And Christmas lights represent, among other things, the star of Bethlehem during the birth of a savior. All light rituals are re-enacted by family and community, and the repetition reminds us, in a beautiful sensual way, that hope triumphs over fear. The true story of Will I Be Next? is also about hope during a dark time. Alzheimer’s disease, already the 6th leading cause of death in the U.S., is predicted to triple in incidence by the year 2050[1]. There is no cure yet. The lights in this story are the human research subjects who offer their bodies and minds for a better future. Alone, each subject has little impact. But there are 1,500 people in the WRAP study and thousands more in...
Who Cares for the Caregiver?

Who Cares for the Caregiver?

By Jean Wentz, Production Assistant November is National Family Caregivers Month, with the theme focusing on respite. I’m a caregiver one day a week for Colette Kolstad, a woman in the advanced stages of early-onset Alzheimer’s. She celebrated her 67th birthday last week. Ten years ago she was forced to retire from a thriving and successful career teaching, coaching, and being the first female athletic director at Preble High School in Green Bay. I didn’t know her then. I’ve only been helping with her care for the last two years. By the time I came on board through the caregiving agency, she had already had the seizures that robbed her of most of her ability to talk, walk, and participate in meaningful activities. Her husband, Jerry Olbrich, whom she happened upon relatively late in life, is devoted to her. He has been, and still is, her primary caregiver. They have no children. With the high level of care that she needs, many people are amazed that he has not put her into a skilled care facility. Early on, Jerry took advantage of any resources he could find that would not only provide the best care for his wife, but would give him some respite as well. Shortly after diagnosis, he enrolled her in an adult day program at Curative Connections three days a week. The specially-trained staff there led brain-stimulating activities specifically for people in the early stages of Alzheimer’s and other dementias. She made new friends, got to sing, dance, do crafts, and a host of other activities. This gave Jerry the freedom to run errands, go to...
Take a Step

Take a Step

“A journey of a thousand miles begins with a single step.”  — Confucius Alzheimer’s disease is becoming so widespread that it seems to touch almost every family. It’s easy to throw up our hands helplessly and accept the status quo. But September is World Alzheimer’s Month, and people around the globe are raising awareness and funds for a cure to Alzheimer’s disease. Leading the charge is the Alzheimer’s Association with its Walk to End Alzheimer’s. The first steps of Memory Walk® were taken in 1989 with nine chapters raising $149,000 from 1,249 walkers. Fifteen years later (in 2014), 600 communities across the U.S. held the Walk, and over 450,000 people participated and raised over $67 million! These annual walks have inspired many others to hold awareness and fundraising campaigns as well. Independent from the Alzheimer’s Association are other Alzheimer’s organizations, foundations, and care facilities that sponsor walks, runs, golf outings, fashion shows, and many other activities. Some individuals have even pledged to walk or run across America for Alzheimer’s, including Jack Fussell, who is on his second trek from Georgia to California. He took his first single step 1191 days ago and, at the time of this writing, has logged 14,370 miles and raised $33,082. So, what is the money actually used for? According to their website, donations to the Alzheimer’s Association: * Help families across the country by continuing to provide and enhance programs focusing on education and support. * Advance critical research studies into methods of treatment, prevention and ultimately, a cure. * Speak up for the needs and rights of those facing Alzheimer’s through our public...
Why?

Why?

My mother was diagnosed with Alzheimer’s in the spring of 2001. My father called me earlier in the year saying she was having trouble completing her sentences – she could not remember the words she wanted to use. I made the 40 minute trip to visit and saw for myself. We knew something was wrong, but we weren’t sure what it was. It got worse. We took her to see a neurologist who had her complete a short memory test. She answered only about half of the questions correctly. That was shocking to both of us. While it wasn’t definitive, the neurologist told us it could be Alzheimer’s or another form of dementia. Later the suspicion was confirmed when an MRI showed her hippocampus (the part of the brain that is involved in forming, organizing and storing memory) to be small – much smaller than it should be, a telltale sign of Alzheimer’s. That summer my dad and I went to a class on Alzheimer’s at the local hospital, so we could learn more about the disease. That’s also where I learned about WRAP. Dr. Mark Sager gave an overview of the disease at one of the sessions and he also talked about the study. Not long after that, I signed up and began traveling to Madison every two to three years to be tested. The seven years of my mother’s decline and eventual death from Alzheimer’s disease was one of the worst things my family and I have ever been through. A little more than two years after my mother’s death, I got an idea. Because of my...