Rabbi Richard Address, who leads Congregation M’kor Shalom in Cherry Hill, N.J., has written and spoken extensively on the loneliness of spousal caregivers. He believes that congregations have an important role to play in providing support for well-spouses.
“We hear it all the time from congregants [who are well-spouses]: ‘You have no idea how lonely I’ve become,’” said the rabbi.
Address believes the issue will become more and more prevalent as baby boomers age and medical advances cause people to live significantly longer. Judaism, he argued, needs to adapt to that reality.
“It is time for our community, in light of the revolution in longevity and the blessings of medical technology, to seek a new Jewish legal term that with love and care can better describe this elongated state of life that so many of our loved ones now endure and that so many will come to experience,” Address wrote in “The Uncertain Path: Emerging Issues for the Caregiver,” an article that appeared in the 2012 book, “Broken Fragments: Jewish Experiences of Alzheimer’s Disease.”
While some spouses cherish the extra time spent with a husband or wife who no longer works and has a more relaxed schedule, others find caring for a chronically ill and/or disabled spouse at home is simply not possible. For some well-spouses, placing their husband or wife in a nursing home is a better choice.
“Some people choose to leave their marriage, some divorce but still care for their spouse, others are 110 percent hands-on,” said Schein. “It’s not for me to judge. I don’t live in their lives. This was the choice for me.”
When it comes to providing day-to-day help, organizations such as the Jewish Caring Network — a local group that, among other projects, runs the Tikvah House next to Johns Hopkins Hospital — offer free services such as nursing care, medical supplies, hospital visitation, meals, cleaning and laundry assistance, day and weekend respite retreats for caregivers and a range of services for children.
But as for well-spouses’ need for social outlets, “it’s a challenge,” admitted Sara Palmer. “Caregivers have to set limits as to how much time they need for themselves and how much they need for connections with others.”
At JCS, Honsberger urged caregivers to go online to find support groups and other resources. He said that one of the most important things well-spouses can do for themselves is to find others going through the same things they are.
“If they’re feeling angry at the spouse, they need to be with others who understand and can help them to feel it is OK to feel angry sometimes,” he said. “Or they need to know it’s OK to go out with a group of friends. … They need to have a life outside of being a caregiver.”
Schein reaps a tremendous amount of happiness from the well-spouse group she co-leads in Northwest Baltimore. She discovered the Well Spouse Association several years ago at a time when her sadness had become “overwhelming.”
“I had to find socialization and have my own life,” she said. “Being so attached to his illness was strangling both of us.”
In addition to its support groups, the Well Spouse Association offers phone groups, mentoring, an annual conference, weekend respite events and access to the association’s online forum, website, blog and chatline.
“For the first time, I was reading things [on the website] that were so familiar to me,” said Schein, whose group meets monthly at a café in Pikesville. “I went on my first respite weekend in February 2010. I met these strangers at dinner, and I couldn’t understand why they were smiling and laughing. It hit home then that it was OK to have fun. Just because Jay couldn’t participate didn’t mean I couldn’t.
“I didn’t have to feel guilty,” she continued. “One of the biggest problems we face is survivor’s guilty.”
Other support groups, though, welcome couples. Snyder noted that the people she and her husband met at a stroke support group at Lifebridge Health remain their closest friends.
Meeting them “was more than a relief, it was like finding soul mates,” said Snyder. “Sometimes when you can say [what you’re feeling] out loud to someone and they say, ‘Absolutely, I know what you mean,’ it makes a big difference.”
Dubin belongs to Schein’s well-spouse group as well as a local group affiliated with the Alzheimer’s Association.
“I like that I can say whatever I want and not worry about it getting out of the group,” said Dubin. “Some of what we do is educational, and sometimes I talk about my experiences and maybe someone else can learn from me. Mainly it’s a social outlet, and I don’t have to go to dinner by myself.”
Dubin, whose adult daughter Rachel was born deaf, has long been active in the Jewish disabilities community in Baltimore. Dubin said that clergy at Baltimore Hebrew Congregation have visited during his wife’s illness, and Schein likewise said that having the support of her synagogue community has meant a lot to her.
Snyder, an active member of Beth El Congregation, said she also finds a great deal of support at her synagogue.
“Even to this day, if I go to services or an event, a lot of people ask how Howard is doing,” she said. “It doesn’t seem rote. I think they really care.”
While having young children to care for in addition to a chronically ill spouse can be especially difficult, Schein was quick to note that children can also be a source of happiness for well-spouses.
“The kids are my greatest blessing,” she said. “I raised my kids without ‘happiness ever after.’ They grew up with reality — how you cope and adjust to the curve balls.”
Snyder, as well, was teary-eyed when recalling what her children went through as they adjusted to the “new normal” after her husband’s stroke.
“I’ll never forget David saying he was ‘the man of the house now.’ He was only 12. And Sophie missed her dad reading to her. Ben doesn’t remember much about his father before the stroke. Thank goodness for videos.”
Every year on the anniversary of her husband’s stroke, “we celebrate life,” she added. “I’m not trying to paint a picture like everything is rosy. We’ve had lots of tough days, but I can’t be negative.
“I am so sorry this happened to him,” continued Snyder. “No one would ever want to have a loved one go through this. But I am lucky to have been with this man. He’s brilliant and funny, and I enjoy his company a lot. I can go to bed at night knowing I’ve done all I can and that I will continue to do so because Howard’s worth it.”