AVON — Full-time caregiver John Munn helps his peers by offering advice.
Four years ago, John’s wife 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.
“Unfortunately, more people than ever before find themselves as a full-time caregiver to a loved one,” Munn said. “In the case of a long term illness, the primary caregiver encounters a commitment that often times is daunting.”
John has been very proactive with his wife’s condition and has created a team of people that help him be a better caregiver.
“At first, it can be most satisfying,” he said. “But as the illness progresses to around-the-clock care, and demands of hygiene, feeding, cleaning, dressing, and transporting, the word satisfying perhaps isn’t the accurate descriptor. Realize also, that in many, if not most, situations the caregiver is dealing with grief and profound sadness of losing the loved one they care so much about.”
He said rest and respite is of “utmost importance” to a caregiver.
“One has to get away for a least a few hours weekly to recharge and rebound to fight the fight,” he said. “It’s easy to say and difficult to do.”
“We all have friends that say ‘if there is anything I can do, let me know,’” he said. “Now ... how do you get the nerve to call on that person and say ‘I need a day off, could you take care of Mary for the day?’ It’s hard.”
He said the time off is necessary, even if it may seem selfish.
“So you find yourself trying to do it all,” he said. “You feel trapped with no light at the end of the tunnel. Nothing, just more work, more time, more giving of yourself.”
For these reasons, John developed a care team for Nancy. He shared his eight-step process with fellow caregivers at a workshop offered through Hendricks County Senior Services at The Heath at Prestwick.
The eight-step plan includes:
n Finding a team coordinator;
n Establishing the level of care that will need to be provided;
n Meeting with the team coordinator to establish expectations;
n Selecting team members;
n Having a team gathering;
n Setting up a schedule;
n Meeting with the coordinator regularly; and
n Setting the team in motion.
“It is preferable to select a non family member (as the coordinator),” he said. “The team can more easily discuss issues that may arise and members also will feel more comfortable when needing to decline a day or time that is not suited for their schedule.”
When choosing time away, John said it’s best to have eight consecutive hours instead of two hours here and there.
“It is suggested that the primary caregiver should have an eight-hour break per week for personal time off,” he said. “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.”
Having a large group of people on the team makes it easier on the coordinator to help fill time slots.
“Do not limit the number on your team,” John said. “The more, the better.”
He said gathering the volunteers together as a group is very important while building the team.
“Have the coordinator conduct the gathering as they are your liaison with the team,” John said. “You should inform the team as to the status of the patient, as well as discuss the health needs such as medications, hygiene requirements, abilities, and any inability of the patient.”
Among the discussions are the patient’s likes and dislikes when it comes to television shows, music, food, etc.
“Tell the team that food will be provided for lunch, dinner, snacks as the need presents itself,” he said. “Then make sure it is provided when they come. Make it a warm and comfortable gathering, rather than a meeting. Some team members may want to attend before they commit, which is advisable.”
John said he gave his team time to think and pray about the team prior to making a commitment. Then the coordinator set up the completed list.
After the team is set up and in place, be sure to keep a good line of communication between the primary caregiver and the coordinator, John said.
“Use the coordinator as your helpmate,” he said. “Let them do the work. You have enough to do.”
Editor’s note: This is the third article 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 the second was on the care team and how it works. Both articles are available online at www.flyergroup.com.