What would you do if a disabling illness struck you or a family member? Ginny Masullo of Fayetteville got blindsided when her husband Nick was diagnosed with a fatal nervous system disease.
For others in similar straights, she’s written a guide. “It’s just a bare bones guide on how to do it all. Other books on this subject are full of stories, but it’s hard to pay attention to all that when you’re in crisis. All you can think is, ‘Oh, my God! What am I going to do!’”
“The Helping Wheel: A Handbook” presents a concise guide with templates for coordinating people, groups and services.
“Realize right away that you need help.” That’s her first piece of advice. “There’s no shame in it. Some part of our culture tells us to do it all by ourselves, but you don’t have to shoulder it alone.”
Masullo says it is important to overcome the reluctance to ask for help. A sick person may not want to ask someone to feed them. A caregiver may feel guilty asking someone to sit with the patient while they go to art class. Learning not to minimize needs is essential. And those needs will change.
Art therapist Buddhi Kling helped Masullo understand that. Kling said, “Forget therapy. You need help.” Kling suggested Masullo ask close friends to be her core support and start identifying needs.
“For a couple, the most immediate problem can be that where there were two people to do everything, now there is one. One person needs to do what two once did, plus what the other one used to do for him or her self AND a lot of new tasks. That loss (of the other person’s energy) is so overwhelming,” explains Masullo.
“Nick lost the abilities of daily living slowly. It wasn’t sudden, like the circumstances of an accident. Eventually, he couldn’t do anything.”
Masullo needed to keep working both for the income and to maintain health insurance. The Masullos also had a son about to go to college.
The core group met monthly. Nick became an active part of it. He had managed 50 employees so his organizational input kept things moving smoothly. Knowing he was still making decisions about his own life helped his outlook. Masullo says the focus went from, “How can we help Ginny help Nick,” to “How can we help Nick,” — which helped Ginny.
She says for the ill person and his or her family, it’s necessary not to have expectations about who can or will help.
“If someone says no, it’s not personal. People may have had experiences that make it hard for them to help or they cannot find time. Just move on and ask someone else. Keep the attitude that help will come and it will — from corners you yourself won’t imagine.”
Making the helpers comfortable became an art in itself. Outlining what people can do — transportation, shopping, household help or even personal aid — is the first step. It’s easiest to ask someone to do something well-defined. People like knowing the exact task, how long it takes and that it is something they can do well.
“Needs are endless, but a volunteer’s time is limited. Being specific in what you ask for helps people to feel satisfied that they met your need. Then they are more likely to come back.”
There were things to do at the Masullos’ morning, noon and night. One person might bring food, another could enter Nick’s dictation into the computer, others helped him into bed. The people who weren’t comfortable with hands-on jobs did other things.
Masullo’s handbook is intentionally short. She’s acutely aware that when trouble strikes, no one has time to read. In the handbook, there are charts to fill in with the things you already know that bring individual tasks to light. There are ideas for enlisting groups, organizations and services. It covers related concerns like how to apply for disability or to handle your work situation.