The Well blog on "The New York Times" website recently reported on a study of 515 patients who received diagnoses of brain tumors or multiple sclerosis from 2001 through 2006. Women in the study who were told they had a serious illness were seven times as likely to become separated or divorced as men with similar health problems. Over all, about 12 percent of the patients in the study ended up separated or divorced, but when the man became ill, only 3 percent experienced the end of a marriage. Among women, about 21 percent ended up separated or divorced.
Readers reaction ran a wide gamut, with a very large number of women and men finding the results "pathetic" and proof that men are "evil" or that "men can't cope." As a caregiver for the past thirty and more years, very little of the discussion was very helpful to me; after all 80% of the men stayed with their ill wives. Suggestions on how to increase that percentage would have been much more constructive.
A few posts focused on a suggestion by the authors of the studies; they felt men had more trouble coping with the demands of caregiving because they lacked competence and training to do so. In particular, studies by the Well Spouse organization indicate that "spousal caregivers require a different kind of support than other family caregivers, due to the involvement of intimacy in the relationship. [we] know that studies have found that of all family caregivers, spousal caregivers take the longest to self-identify; and of these, men take longer than women." The group agrees with the sponsors of the study that more support for spousal caregivers, especially at the time of diagnosis, might reduce the divorce and separation rate.
There are more sources of support now than there were 30 years ago when my wife's tumor became a part of our lives, but every care giver is well advised to find some sort of approach to (and if possible support in) the new role they choose to accept.
In my case, a documentary on public television was very helpful. A young husband was ill with a fatal cancer, and he was clearly focused on himself, his cancer, his hopes for recovery -- and other people made him "the star of the show." His wife cared for him and the film was remarkable in showing her deeply conflicted feelings: her love and devotion to his needs, her regrets at their lost life together, feelings of jealousy that others down graded her contributions, a desire that her husband would die so that she and their son could begin a new life, self hatred for her own feelings of betrayal and jealousy.
This insightful, well produced movie, helped me several times over the years as I faced many of the same sorts of challenges described by this young couple.
This excellent book will help any spouse, particularly any husband, who is called on to become a caretaker. It may suggest new coping mechanisms, more confidence, and less needless guilt.
Marriott is sarcastic and funny and he deals with the gut issues I've dealt with so many times over the years - emotional, financial and physical. I know I've had lots of nasty thoughts, lost my temper and immediately regretted it, felt isolated, friendless, frustrated with my own incompetence -- and baffled by why I was even trying to do a good job as a caregiver. I'm sure all that will occur again and again in the future, even after 30 years of experience.
As the Well Spouse concludes: "
The Selfish Pig's Guide to Caring offers understanding, comfort and assurance that you are not alone or insane or a bad person." I agree completely.
Robert C. Ross 2009