Jan Schein was just 39 when her husband, Dr. Jay Schein, was diagnosed with multiple sclerosis. Although the Northwest Baltimore OB/GYN functioned well for some years after the diagnosis, in 2002, he was forced to retire because he could no longer perform surgery.
“There was a gradual decline,” recalled his wife. “First, we made the decision he couldn’t drive, then he couldn’t grasp knives. This man who used to tie one-handed surgical knots couldn’t tie his shoes.”
The doctor’s life wasn’t the only one that changed dramatically. His wife became his full-time caregiver.
According to the Well Spouse Association, an organization that provides peer-based emotional support to husbands, wives and partners of people with chronic illnesses and/or long-term disabilities, the United States is home to an estimated seven million spousal caregivers. Known among themselves as “well-spouses,” they live lives they never would have imagined and, in most cases, would not have chosen. But many soldier on, aided by an immense well of inner strength and a handful of support organizations, some of them based in the Jewish community.
At the time of her husband’s stroke 12 years ago, things were on the upswing for Carol Cohen of Columbia. Having become deaf at 22, she had recently completed her doctorate in social work and had received a cochlear implant that enabled her to hear for the first time in decades.
“I was looking forward to my new life,” recalled Cohen.
But before she was able to enjoy her newfound freedoms, her husband, Herschel Cutler, suffered a massive stroke that left him paralyzed and unable to speak. Cutler recovered some faculties later, but immediately following the stroke, Cohen felt entirely unprepared for the challenges that lay ahead of her.
“When your spouse has a stroke, you feel its shock waves. Stroke is often terrifying, and you may feel unprepared to cope with its immediate effects or its long-term consequences,” wrote Sara Palmer, Ph.D., and her husband, Dr. Jeffrey B. Palmer of Johns Hopkins Medicine, in their 2011 book, “When Your Spouse Has a Stroke: Caring for Your Partner, Yourself and Your Relationship.” “But despite your lack of experience or preparation, you are likely to be the first one called upon to respond, make decisions and provide for your spouse’s care. You will probably assume the role of primary caregiver and begin a course of on-the-job training.”
That was the experience of Judi Snyder, whose husband, Howard, had a stroke in 1999, when she was 39 and he was 47. Their three children, two boys and one girl, were 12, 9 and 4.
“Everything happened very quickly,” said Snyder. “I didn’t know what questions to ask. I had never been here before.”
A second stroke shortly after the first took a further toll on Snyder’s husband. Today, 15 years and countless therapy sessions later, he is able to walk with a cane but suffers from aphasia, a brain injury that makes it difficult for sufferers to express themselves verbally and sometimes to understand written or spoken language.
What spouses such as Snyder experience, especially when there are children living at home, is that in addition to advocates and caregivers, they may also become the bread winners in the family or have to relinquish or delay long-term career and educational goals. Most well-spouses experience financial strains due to exorbitant medical expenses and loss of income from a spouse who can no longer handle a job.
Absorbed in all of their responsibilities — merely coping, chief among them — well-spouses can easily feel alone, said Joe Honsberger, senior manager of therapy services at Jewish Community Services. There are resources available in many cases, and people should know that social workers are willing to help.
“It’s always important to talk with someone one-on-one when something like this occurs,” explained Honsberger. “[Talk with a counselor about] what life was like before, what’s it like now, and what does it look like going forward.”
Having someone such as a counselor to talk with is especially valuable once a caregiver is over the initial shock of a spouse’s illness or disability.
“The effect on me is that I’m socially isolated,” said Ben Dubin, whose wife, Esther, has early onset Alzheimer’s disease.
Esther’s decline has been rapid; she hasn’t spoken for the past two years, said Dubin. For the past five years, Esther has required in-home care 12 hours a day, seven days a week. She can’t manage any of the activities of daily life, can’t stand up and has lost half her body weight. She is mostly unresponsive.
Dubin is grateful Esther’s sister and niece and a group of his wife’s friends continue to visit her every week.
“They try to make themselves known, by repeating old stories, but it’s getting harder and harder,” said Dubin. Otherwise, “it’s a lonely life.”
Snyder said she and her husband categorize people as “B.S.” (before stroke) and “A.S.” (after stroke).
“Friends from before the stroke are still around, but they’re not in our daily lives,” she said. “I did feel hurt and angry at first, but it’s difficult. They just can’t handle it. I’m not angry anymore.”
Jan Schein described going through the traditional stages of grief, even though her husband is very much alive.
“If I were a widow, I’d have closure,” she explained. “But in this case, there’s an extended grief period with no end in sight. When you get past 10 or 12 [years], it really wears you down. You have to let go of the dreams of what will be and the memories of what was. You have to realize this is a different person. And when it’s your spouse, you’ve lost your partner. Yet, he’s still there.”
These days, Jay Schein uses a walker and has braces on both legs. He has limited use of his left arm and increasing cognitive difficulties including a decline of his executive functioning skills. He is still able to handle his own self-care so he doesn’t qualify for home health care. However, his wife doesn’t leave him alone for more than a few hours because she is afraid he may have an accident.
“I try to come up with activities when he is home because it is important for his health that Jay keeps his brain and legs moving,” said Jan Schein. “Yesterday he went to day care and came home and told me that he made an art project by cutting up leaves. It’s like having your kid come home from day camp. It’s like the whole house revolves around his illness.”
“You have to accept that the person you married is here, but not here,” added one 56-year-old spouse married to a stroke victim who requested anonymity to protect the identity of his family. “My wife has done an amazing job of rehabbing, and to look at her you might not think there’s much wrong with her. But cognitively, she’s like a child. I miss communication the most — all the things a typical couple shares.
“You take one day at a time getting to know and love this new person,” he continued. “We were looking forward to being empty nesters, going on vacations, traveling. That’s gone. It wasn’t in the cards. My kids ask me ‘Why don’t you go on a cruise?’ I don’t know if I want to go on a cruise watching all of the healthy spouses having a good time.”