Memory Walk will honor caregivers|
|The incomparable role caregivers play in the lives of those living with Alzheimer’s disease will be the focus of this year’s Alzheimer’s Memory Walk, now just a week away. |
The walk, a fund-raiser and educational program sponsored by the Alzheimer’s Association Greater Wisconsin Chapter, will take place Saturday, Sept. 14 at 9:30 a.m., beginning and ending at Johnson Electric Coil at Watson Street and Second Avenue. Registration begins at 8 a.m.
To gain visibility, the two-mile route will follow city streets, a departure from last year’s event that was held on the Spring Brook boardwalk and trail.
The honorary ribbon-clipper for this year’s event will be Mary Jo Ninnemann, coordinator of the Alzheimer’s unit at Kindred Eastview, who will be joined by other caregivers and families.
“Caregivers provide billions of dollars of paid and unpaid care every year and Mary Jo has one of the biggest hearts of anyone I know,” Amy Nigon, outreach specialist for the Greater Wisconsin Chapter, said. “She is such a caring and compassionate person. As so many more baby boomers are entering a greater period of risk for the disease, we will need many more people like Mary Jo to provide relief for family caregivers once their loved one needs to transition to a care facility, whether it be assisted living or a nursing home.”
In 2010, 83,494 Americans died of Alzheimer’s disease, the sixth leading cause of death in the U.S. and the fifth leading cause for those ages 65 and older. There are no survivors of Alzeimer’s, the adage states, “if you do not die from it, you die with it.”
But what those statistics do not include are the family members affected by the disease and who most likely serve as the day-to-day caregivers for those suffering from it.
Those caregivers, Ninnemann said, often end up with health concerns of their own due to the overwhelming around-the-clock responsibilities.
“We need to acknowledge them for their support and care,” Ninnemann said.
Alzheimer’s caregivers are oftentimes family members, usually a spouse, child or sibling who, along with the need to care for the person with the disease, must also adjust to a changing relationship.
In the case of a spouse, “it’s the loss of the person you wanted to spend the rest of your life with,” Ninnemann said. “It’s the loss of a relationship and you have to adjust to the change.”
Like the patient, the caregiver goes through a variety of wrenching changes, including denial of the need for more assistance at the very time when he or she should be reaching out for treatment and support. Conflicting feelings are common.
“The caregivers are dedicated to their patients and they don’t see themselves getting worn out,” Ninnemann said. “They remember the ‘until death do us part’ vows and there is guilt if they can’t provide the care.”
The Alzheimer’s Association offers regular series of support groups across the 52-county Greater Wisconsin Chapter to help caregivers work through the various stages of denial and guilt, provide support and offer respite, whether it be for an hour or two or longer.
“We take care of the patient, but we also end up supporting the entire family on this journey,” Ninnemann said. “We are here to work with them and to help.”
The support groups offer a a social outing, Ninnemann and Nigon explained, including a time to talk, laugh, and share stories, but they also are key in sharing the latest Alzheimer’s information and, occasionally, a well-earned shoulder to cry on.
“I’m a believer in cookies and treats,” Ninnemann said. “We say, ‘tell me about you’ not about the patient. Before long, we get you talking, and talking is the biggest stress reliever there is.”
Ninnemann said people often stay in the support groups long after their loved one has passed on to offer support and caring to others. And she makes regular follow-up telephone calls as well.
“When you come to a group, you’re very vulnerable,” Ninnemann said. “You’re walking into a group of strangers. I’m going to do everything I can to make you feel comfortable.”
Saturday will be a day to remember those who Alzheimer’s disease has taken, but also a day to celebrate the successes, and especially those who serve as the caregivers.
“This is a disease that can happen to anyone. It does not discriminate,” Ninnemann said. “The walk shows that we are here to support you because it’s OK that this has happened. Those people who have Alzeimer’s still have a lot to offer us.”
From left, Jo Lomprey, Mary Jo Ninnemann, Carrie Zelazoski and Amy Nigon review plans for next Saturday's Alzheimer's Memory Walk.
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