by Connie Cherba
Alzheimer’s is a progressive, irreversible, and fatal disease of the brain that causes problems with memory, thinking, and even behavior. It’s the sixth leading cause of death in the United States and affects 5.4 million Americans – most of them 65 or older. By 2050, that number is expected to triple to an astounding 13.8 million unless a cure or new treatment is discovered. Currently, the disease can’t be prevented or cured.
In 2015, more than 15 million caregivers provided an estimated 18.1 billion hours of unpaid care, spending more than $5,000 a year looking after someone with Alzheimer’s. As expected, the disease takes an enormous toll on caregivers as well as those who suffer with the disease.
Help is available. The Alzheimer’s Association is a nation-wide organization with an Iowa chapter headquartered in West Des Moines. Although the Association has expanded to offer a wide-range of services, it originally started with support groups.
“Here in Dubuque we sponsor a support group out in Asbury at the library,” said Alexandra Barton, Dubuque’s Program and Event Coordinator. “We train facilitators to run that group. It’s mainly focused on caregiver support, but we try to support everyone. It’s a time for caregivers to share, ask questions, and be there for each other.” The support group meets at the Asbury Branch of the Dubuque County Library at 3:00 p.m. on the last Wednesday of every month. Call (563) 581-1291 to RSVP.
In November, the Alzheimer’s Association, in partnership with Mercy Medical Center, will offer two, 90-minute classes focusing on an introduction to Alzheimer’s and tips on how to care for those with dementia during the upcoming holidays. The classes will be held at Mercy on November 11. Call 1-800-272-3900 to register for one or both of the free classes.
New in 2016 is the Association’s Hero Project, a support service that partners with Iowa’s Department on Aging to provide phone support for caregivers. “We’ve heard from caregivers that it’s very difficult to get to a support group in person, especially if they’re providing care in their home,” said Barton. “With the Hero Project, volunteers call to see how it’s going and talk about what they’re going through. They give out information on Alzheimer’s and what’s available in the community to help them connect with those services.” Enrollment is easy at 1-515-440-2722.
In addition to support groups and scheduled learning opportunities, the Association offers a 24/7 Help Line (1-800-272-3900), critical safety services to address the problem of wandering, a virtual library with access to the Green-Field Library (the nation’s most extensive Alzheimer’s collection), and advocacy to improve current laws, help enact new laws, and encourage federal funding for research, a critical part of the Association’s mission. For more information on what’s available from the Alzheimer’s Association, visit their website at Alz.org or call 1-800-272-3900.
The Northeast Iowa Area Agency on Aging (NEI3A), a private, non-profit corporation serving 18 Northeast Iowa counties, offers a variety of dementia services including Alzheimer’s information and referrals for family caregivers, family care consultations, monthly meetings of “Let’s Start the Conversation,” respite funding, chair and door alarms, and a lending library with dementia and Alzheimer’s literature. The NEI3A also offers a list of Northeast Iowa support groups on their website at: nei3a.org/our-services/dementia-services.aspx.
“Care for the Care Giver,” Dubuque’s newest Alzheimer’s caregiver support group, got off the ground in the spring of 2016 when Fr. Joseph Hauer of Resurrection Church asked Mike Blouin to help with a group to address the needs of caregivers whose loved ones suffer from dementia.
Blouin, a former school teacher, Iowa legislator, congressman, and president of the Greater Dubuque Development Corporation, knows firsthand just how devastating Alzheimer’s can be and how essential support groups are to caregivers. Blouin’s wife Suzanne suffered from Alzheimer’s for eight years until her death in March 2016.
Suzanne Blouin received her formal Alzheimer’s diagnosis from Mayo Clinic in the fall of 2008. “As soon as she got the Mayo diagnosis, she went into a depression, denial, and anger and never really came out of it until she was so far down the road she didn’t really know what was happening all that much,” said Blouin. “It hit her like a ton of bricks.”
The diagnosis was also life-changing for Blouin. The couple moved their retirement plans up a few years, and in September 2011, they moved to a condo in Florida. Caring for his wife was a full-time job for Blouin. “Alzheimer’s is life altering,” he said. “Everything kind of fades into the background by comparison. Nothing else is as important as getting through this.”
In April 2013, Blouin placed Suzanne in a care facility. “It was the hardest decision I ever made, but it was the best decision I ever made,” he said. “I knew it was the right thing – she would be getting 24-hours a day, 7-days a week care from people who were trained to care for her.”
Although he admits it was a “tough thing to do,” Blouin joined not one but three support groups. “The support groups saved my life multiple times,” he said. “The people were like family. We got so we could actually laugh with each other.
“When Fr. Joe called after Suzanne’s death, I wanted to be able to use my experience while it was all still fresh in my mind in a way that would be a help to other people,” said Blouin. So, he returned to Dubuque and got busy working to refocus a general illness support group already meeting at the church. “We wanted to zero in on dementia of all sorts and make the support group available to people community wide. There are over 10,000 in the metro tri-state area with some form of dementia, which means there are 15,000-20,000 caregivers out there.”
Blouin felt an urgency to get the refocused support group up and running – not just as a tribute to his late wife, but as life-saving help for caregivers.
“Some 52% of caregivers die first from anxiety, heart attack, tension, and depression – but not if they’re getting some kind of help,” he said. “Then that number just drops off the cliff.”
“Care for the Care Giver” meets at Resurrection weekly except for the week the Alzheimer Association has their monthly meeting in Asbury. Blouin points out, “There is a somewhat different dynamic between the Association’s meetings and ours – there’s more education on their side. We try not to overlap or compete. They serve a very good purpose, but we feel we get into more personal, emotional help.”
In addition to the caregiver support group, Resurrection offers a 12-member team ready to provide free, in-home respite care. Plans are also in the works for a trained team to oversee a “social club” to provide activities for those with memory loss while their caregivers attend the support group.
Blouin has some final advice for Alzheimer’s caregivers. “The thing people need to know is that they need this help,” he said. “No matter how strong emotionally they think they are, they’re not strong enough to do it alone.”
For more information on Resurrection’s “Care for the Care Giver,” call the church at (563) 556-7511 or check the church website at Res-DBQ.org/care-for-the-caregivers.
A Place for Friendship: Dubuque’s Memory Café
Dubuque’s Memory Café is where individuals with memory loss from Alzheimer’s or dementia and their caregivers can get together in a safe, supportive, and engaging environment. It is a social time and a friendly place where people can interact, enjoy life, find support, share, and celebrate without feeling embarrassed or misunderstood. A Place for Friendship encourages acceptance and enhances relationships.
The Memory Café movement started in the Netherlands in 1997 and has been spreading throughout the United States since 2008. It is an important contribution to the well-being of both persons with dementia and their caregivers, especially since people with dementia most often mention feeling isolated and alone. The Memory Cafe is for them and about them. It’s a place where they can feel welcomed and included and not have to worry about what anyone might be thinking. They can be themselves while meeting and making new friends who will be companions for them on this journey. Similarly, caregivers will find new connections and new friendships and new kinds of support.
A Place for Friendship: Dubuque’s Memory Café will meet once a month on the second Thursday from 10:00 a.m.-12:00 p.m. at Holy Trinity Lutheran Church located at 1755 Delhi St. in Dubuque. The dates for the remaining months of 2016 are November 10 and December 8. Coffee, tea, water, and seasonal snacks will be served. Games and newspapers will be available. There will also be activities and enjoyable presentations, including music, poetry, stories, singing, art activities, etc.
Dubuque’s Memory Café project is co-sponsored by multiple community organizations, including Cozy Corner Adult Day Services, Healing Moments Alzheimer’s Ministry, Holy Trinity Lutheran Church, Home Instead, Oak Park Place, and the Telegraph Herald. Other organizations are invited to participate.
For more information or to co-sponsor Dubuque’s Memory Café, please contact Catherine Basten at Cathy@Basten.us or (563) 451-5129.
There is no fee to attend A Place for Friendship: Dubuque’s Memory Café and pre-registration is not required.
Editor’s note: This article was provided by Rev. Dr. Jade Angelica, MDiv., DMin., Founder and Director, Healing Moments Alzheimer’s Ministry.