By Brenda L. Holmes
John Munn has become an advocate for his wife, Nancy, as they face her illness together.
Four years ago, Nancy was diagnosed with Primary Progressive Aphasia (PPA), a rare disease that begins low in the parietal lobe and affects language skills and translation of speech. PPA is a sister disease to Alzheimer’s, but normally has an earlier onset. It usually hits people in their mid 40s or 50s.
John said he decided early on that he would learn as much about the disease as he could to become the best caregiver to his wife.
“Every year I go to a major workshop in Chicago for caregivers,” he said. “Northwestern University has done a lot of research and they share it at these caregiver workshops.”
He said attending the educational training has helped him to better understand the disease and be a better caregiver to his life-long love.
“It’s a unique and rare disease, so I can also call anytime I have questions,” John said. “If they don’t know the answers, they find people who do.”
Through his experiences with Nancy and information at the yearly workshops John has developed a concept called the Care Calendar.
“At first, I could easily leave the house for two or three hours or to sneak and get groceries for 20 or 30 minutes,” John said. “But it started getting more and more difficult.”
While at one of the Northwestern University workshops participants learned about an online calendar that could help caregivers create a schedule to organize helpers.
“I didn’t like it because it asked you to give out too much information like e-mail and phone numbers,” he said. “I didn’t want to ask them to give up their privacy.”
The first thing he did was to find a liaison between himself and the volunteers who would come in and give him a break.
“We have a friend of 50 or 60 years that said she could do it,” he said.
Louise Hoffman offered to help organize and call the volunteers. John calls her if things come up and he needs a little extra help and she arranges for his helpers to come on a regular schedule so he has “days off.”
The liaison is utilized so there are never any hurt feelings for guilt when helpers cannot help one day or another.
“Louise just calls them up and they help if they can,” he said. “If not, she just goes to the next name on the list.
“I have one day a week, Thursdays, where I have eight hours off. I know when it is so I can make plans. I really look forward to it.”
There are about 12 women on the care team at any given time. They often come to visit in pairs so they can chat and Nancy can hear their conversation and feel involved.
“We are so blessed,” John said.
He said he will often plan a breakfast or lunch with friends or family to get him out of the house. He is also part of the Men’s Service Group at Bartlett Chapel and takes time to participate in that.
“I think you should bring your care team together early,” he said. “In my mind, people on the team build a relationship and will be able to stay further into the process. You can’t wait until you are in crisis to build your team.”
At first, John said he felt guilty asking for a day off, but he’s learned that it’s good for both him and Nancy.
“Nancy enjoys the respite from me,” he said. “And I’ve really looked forward to planning what I’m going to do on Thursdays. One has to get away for a least a few hours weekly to recharge and rebound, even though it’s easy to say and difficult to do.”
Nancy’s diagnosis also encouraged John to join a local support group. He has become involved with the Caregiver Workshops at the Hendricks County Senior Center in Danville. There he became acquainted with Deanne Below, a staff member at Hendricks County Senior Services.
Below has asked John to share his concept of a Care Calendar at a workshop planned for 6 p.m. June 28 at The Hearth of Prestwick. There will be a free meal, along with adult day services offered.
To make reservations, call HCSS at 745-4303.
Editor’s note: This is the second in a three-part series on John Munn, who has become the caregiver for his wife, Nancy. The first story focused on the couple and how their relationship has evolved and is available online at www.flyergroup.com. The final article will focus on tips to being a better caregiver.