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.”