In February of this year I interviewed and wrote the stories of well spouses who chose divorce as their means of coping with their spouses chronic illness. I tried to explain why some well spouses feel they have no choice except divorce. Sometimes both parties agree upon the divorce. Often it is the choice of the healthy partner and seen as the only way he or she can survive.
Recently, I had the chance to speak with these divorced spouses again. I asked them if there was anything a community might have done that may have helped their marriages survive and prevented them from seeking divorce. I’d like to share their perspectives with you.
One of the major problems leading to divorce seems to be the ill spouse becoming so self centered and totally oblivious to the chaos, pain and workload that is a natural result of illness entering a home; especially long term. Many of the well spouses felt that their partners’ self-absorption allowed them to totally abdicate any responsibility for their behavior toward their spouses and children.
Many of the divorced felt that if their spouses had made some accommodation to filling their needs and lessening the burden of the family through the illness, they may have made it through as an intact family. “Never getting what you ask your spouse for. Even if it is only to say ‘please’ and ‘thank you’ when needing something” or “asking instead of demanding” were a few of the small things mentioned by the divorced spouses that they felt might have made a huge difference, over the years, in the marriage.
The well spouses told me that their immense workload, their dead dreams, desires and needs were as invisible to their spouses as they were to the outside community. They felt that the community reinforced this invisibility by placing the total responsibility of the family on the healthy partner. “A community never expects anything from a sick person. They never will even ask someone who is sick how their partner or children are managing. And so they inadvertently tell the sick person that his family is not his concern. He should just be concerned with himself.” By doing that, they reinforce the detrimental self-absorption that can so damage a marriage.
Another major issue was the children. Children suffer greatly when there is chronic illness. They suffer by not seeing a normal relationship between the parents. This can affect how they form their own intimate relationships later on. They might have no positive models of mutual caring and giving to follow in their own relationships.
Sometimes there is emotional and verbal abuse, even physical abuse. Well spouses felt it was very important for their children to see homes where illness didn’t dominate their lives, or better yet see homes where it existed but life continued appropriately. They felt that as much as they appreciated people’s help with their spouses, they could also use times when they could get help being a normal family and doing family things together. This could mean even mother-daughter or father-son things with others, though that meant accommodating the sick parent.
Taking a father and son to daven was better than just taking the son. Accommodating a disability so that both parents can take part in children’s school performances and parent teacher interviews would go a long way to making the children feel “normal” and encouraging the ill parent to parent.
Chronic illness needs chronic chesed. Whether it is loss of a job and therefore loss of a sense of productivity as well as an income, making a house that accommodates the disability, helping with respite, or just adopting a family, the help needs to be consistent and not disappear after a short time. The illness never goes away. Sadly, it often gets worse.
The help needs to be proportionate. Finding a new job that accommodates the illness is far better than charity. Helping the person continue to live independently in his own home through accessibility helps him remain a responsible parent and spouse instead of someone who must receive instead of give.
Making sure that the family can continue to be part of community events as well as extending personal family invitations prevents a feeling of isolation. Picnics and outings can accommodate everyone, and invitations to Shabbos and yom tov meals may mean bringing the meals that you’re inviting them to share to their home because they can’t come to yours. All this is something a community and individuals can do to help the family survive as a family. But it must continue the course of the illness and adjust to the changes in the needs of the individual and family.
More of us need to step in when we see inappropriate behavior, whether it is between a couple or a parent and child. When we say nothing, we give that person approval to continue the behavior. How we interject ourselves and what we say must be done appropriately and rabbinic advice must be sought.
But once something is said, the parent or spouse can no longer continue to believe that everyone around feels they are being appropriate. In fact, it may be the first time they will realize what they are doing/saying. That alone gives them the choice to change.
In small ways and large, a community’s involvement can help a family get through a chronic illness intact and in this way may help to ward off divorce as the only solution. But this involvement must be long term- otherwise, you’ve only given the family a taste of what they their life could be like but isn’t.
You can reach me at firstname.lastname@example.org.