HUNTLEY – Catherine Ennis will say that one of the most important things she’s learned in nine years as a caregiver for her husband is that, from time to time, she has to not be a caregiver at all.
There is no wiggle room here. She has a group of friends who she goes to quilting classes with twice a month. They don’t talk about Jim. At home, when her help is around, Ennis slips into a quiet room and sinks into a comfortable chair by a bookshelf. Or, when it’s nice, she will fall out the back door, enjoy the flowers and let the fountain soothe.
Like a growing number of people, Ennis has chosen to take on the role of primary caregiver for a loved one. Her husband, Jim, has Lewy body dementia, a disease that resembles Parkinson’s and Alzheimer’s.
Since the recession, more and more people have made the decision to become caregiver for an adult family member, partner or friend suffering from a chronic condition or disability. The AARP’s Public Policy Institute estimated that in 2007, the economic value of that care equaled $375 billion. By 2009, the figure had reached $450 billion – $18.8 billion in Illinois.
Family Alliance Inc., an adult care center in Woodstock, has seen that change on a local scale.
“We noticed that several years ago when the economy kind of tanked, when we had that downturn, people were coming to us later in their illnesses,” Director of Strategic Advancement Cheryl Levinson said.
Though direct care is their primary service, one way the center has adapted with the trend is to hold support groups for caregivers, who often deal with a range of emotions.
The number one topic of discussion at Family Alliance caregiver support sessions: not how to care for your loved ones, but how to care for yourself.
The sacrifice made by caregivers can naturally feel like a burden, yet those feelings can cause guilt, Levinson said.
In the beginning, for the sake of appearances, Ennis would hide the extent of her husband’s symptoms. It took time to let that go.
“I think the best thing I did for myself was to start talking,” she said.
Ennis in time redefined her activity with her husband. She says a key to caregiving is to find new ways to have fun and be together.
For the Ennises, that means making dinner together – Jim cleans the snap beans. Or quilting – Jim holds the fabric.
Jerry Havemann, of Huntley, puts bluntly the frustrations he felt during his time as a caregiver for his wife, Maria, who died earlier this year of ALS.
“We both shared with one another from time to time that this is very much like being in prison,” he said.
ALS, also known as Lou Gehrig’s disease, took the Havemanns’ son first in the fall of 2008. Maria had been diagnosed with the same disease a year and a half earlier.
It gradually took her arms and hands, rendering her unable to eat, put on her makeup or scratch her nose by herself. Then went her legs, weaker and weaker until she was in a wheelchair.
The more it progressed, the more they both sacrificed. He hired the lady who’d been helping a woman with Alzheimer’s across the street, who was there a few hours for three days a week in the beginning. Then it became eight hours, then five days. As time went on, Havemann himself felt more and more like he should always be around.
“You just don’t feel good about leaving her alone with someone,” he said.
The two fought at times, both later realizing it was the disease they were truly angry with. Still, there was beauty in the way they redefined their time together.
He installed a lift on their motor home and got Maria a smaller wheelchair to allow her to navigate its cramped interior, allowing continued travels. They still went out to dinner. They watched her Chicago Bulls and played dominoes, though someone else moved Maria’s pieces.
“After more than 40 years of marriage,” Jerry Havemann wrote in a letter to the editor in the Northwest Herald, “we fell in love all over again.”