How many male caregivers do you know? Are they husbands, sons, extended family or friends? Are they caregivers to the elderly or to those with cancer, multiple sclerosis, dementia or AIDS? I am curious to learn more about who they are, what they do and what they tell us about being caregivers. My curiosity about male caregivers stems from my own personal experiences, three of which I would like to share with you.
I was diagnosed with multiple sclerosis when I was 28 years old. Four neurologists told me I would be in a wheelchair by the age of 30 and most likely dead by 35. Fortunately I was misdiagnosed and today I am very much alive, active and healthy. I look back at that time in my life and am thankful for my husband Bob’s help—especially when he carried me up our long flight of stairs to bed at the end of each day.
My father was my mother’s caregiver in her very early stages of dementia. He called himself “Lawrence Nightingale.” This title brought great laughter to our family as he willing went about his caregiving tasks. As his prostate cancer increasing took over his life, my brother-in-law Vince became a willing and very capable caregiver to my dad. It is because of these three men that I have great respect, gratitude and appreciation for men who care.
Caregiving has traditionally been a role filled by women. It was often seen as “women’s work” that was done by adult daughters or daughter-in-laws. But let’s be honest, not all women or all men are willing caregivers. Mark Stibich, PhD, in his article titled “Helping Men Be Caregivers,” speaks to the issue of “partner abandonment.” This essentially refers to when one spouse leaves the relationship after the diagnosis of a serious illness. Dr. Stibich cites a US research study of 515 men and women, of whom 11.6 per cent were “abandoned” (e.g., divorced or separated) after a diagnosis of multiple sclerosis or cancer. This broke down into 2.9 per cent of men compared with 20.8 per cent of women. Dr Stibich notes, “Men, in short, are much more likely to abandon their partners than women.”
Thankfully, however, many men actively and willingly help care for their loved ones. I was honoured to have the opportunity to chat with a few. These are men of character who have incredible dedication to their work. Let’s meet them now.
Richard and his brother Tom are both in their mid 70s. Tom is a diabetic and this is causing him to go blind. He no longer drives and even watching television is difficult. Three months ago his right foot was amputated at the ankle. Tom’s world is shrinking and depression is quickly setting in. Richard is now his brother’s primary caregiver. .
Richard takes his role as a fulltime caregiver very seriously. He does everything possible to make Tom’s life pleasant and safe. “Caregiving is full of extreme ups and downs. It is all the physiological issues that are 24/7, 365 days a year.” For the most part he does all the cooking, cleaning, shopping, driving and banking, while also attending Tom’s medical appointments. “Sometimes when I am overwhelmed, I step back and say—my frustration is nothing compared to what Tom is going through. He is my hero.” Richard is constantly amazed with Tom’s will to survive and his strength to fight.
Tom’s doctors advised Richard to let others help out more. They could see he was “burnt out.” It is only in the last few weeks that Richard has acknowledged he needs some help, a break and time for himself. “I really didn’t think about caregiver burnout,” he says. “I was just so focused on trying to take care of Tom that it never occurred to me to take care of myself. Once you ask for help, it comes. I now know that caregivers need to find a way to take a break and recharge their batteries. ‘Take a break, before you break.’”
Once Richard asked for help from others, it was quickly offered. He is now able to go bowling with his friends for a few hours each week.
Meet Mike and Vince Perna
These two adult brothers proudly care for their elderly mother, Lucia. Mike lives close by and helps with maintaining her home and administering medications, as well as being her chauffeur and translator when dealing with the medical community. Mike has the added responsibility of helping care for his grandchildren and elderly in-laws. Mikes struggles with the concept of paying for help for his mother. He believes that “Duty is duty and whatever time and effort I spend, I am very well compensated. Out of my simple and humble caregiving comes quite a lot: the satisfaction of past successes and the immense relief of knowing that I am doing the best I can do.”
Vince works full time but has arranged to live with Lucia during the week. This gives Mike a break and allows Vince to be with his mother and attend to her needs in the evenings and overnight. “It is my role, duty and responsibility to care for others, especially my mother,” he says. Vince is concerned about how they will all manage in the future. What will happen if his mother’s health continues to decline? What if she becomes really ill? He worries about all the issues to which he has no answers.
These two brothers know that it takes a team to care for the ill or elderly and that there are never enough helping hands. Their mother’s care and happiness are really the only things that matter. They are a good, trusting, loving team. Both men are proud to be caregivers. “There is nothing more rewarding than to care for someone you love,” they say.
“I just want to be there for her, to help out, to make a difference,” says Greg. His wife Lisa has just had her second mastectomy.
Cancer has turned their world upside down. “Nothing is normal, nothing is the way it use to be,” says Greg. “Our ‘new normal’ is totally focused on my wife, her health and her appointments.”
Greg has learned many things along this unwelcome family journey. Caregiving has forced him to stretch his abilities, energies and skills. “I continue to surprise myself with what I am able to do,” he says. “I am proud how well I am able to adapt to change.”
Although rewarding, Greg says caregiver can also be “overwhelmingly stressful. My brain is always working in overtime. I think about all the unknowns, all the things that didn’t get done today and all the things that need to get done tomorrow.”
Greg was fortunate to join a pilot program at Princess Margaret Hospital in Toronto called “Helping Her Heal,” which was produced by ELLICSR: Health, Wellness and Cancer Survivorship Centre. According to Jennifer Jones, PhD, associate director for ELLICSR, “The program looks at the worries and life adjustments that husbands of women with breast cancer experience, and teaches them skills to help the couple cope.”
Greg found real and lasting value from participating in the program. “It helped prepare me to be a caregiver and mostly let me know that I was not alone and that there are lots of men who are dealing with my issues,” he says. “We learned about the importance of taking time for ourselves and how to avoid caregiver burnout.” Greg will always be thankful for this pilot program and hopes similar programs will be developed to help other men.
As Lisa recovers from her second major surgery in less than two years and continues with other treatments, Greg’s strength of character is allowing him to embrace his caregiving role with passion and commitment.
Raising the profile of male caregivers
Richard, Mike, Vince and Greg have shared their issues and opinions with us to help raise the profile of male caregivers. It is important to acknowledge their roles and value, and the unique challenges male caregivers can face (see sidebars). We should all be very proud and appreciative for the time, efforts and dedication of all caregivers, men and women alike.