“It’s one thing when you’re already a parent but it’s another to be a parent of someone who raised you,” says Terence Peete, reflecting on what life has been like while caring for his mother over the past couple of years. Daisy, 87, is in the moderate stage of Alzheimer’s.
Peete says the signs of trouble came up one by one. “Prior to her official diagnosis, I had started paying her bills, as she wasn’t able to keep track of her debit card. She started repeating stories that she said. She would ask the same questions after they were already answered. She would enter lotteries from phone calls that were scams. When I was growing up she wouldn’t fall for stuff like that.”
Daisy resided independently in New York for many years before Peete and his wife Michelle relocated her to their Naylor Gardens home a couple of years ago. A single mother who raised two children, Daisy had traveled extensively and enjoyed an active social life. Now Peete is responsible for paying her bills, making doctor’s appointments, and attending to her personal needs.
Peete is among 40 million men in America caring for an ailing family member. Being the head of a household is one role many men are familiar with. But being in charge of the personal, financial, social, and medical care of a relative or spouse who was once self-sufficient is a game changer. More importantly it puts men in unchartered territory where they feel alone and helpless.
The Difference Between Male and Female Caregivers
Alzheimer’s hits African-American women disproportionately. Who is left to care for them? Spouses, children, grandchildren, extended family members, and friends. Male and female caregivers have a lot of common ground. They are both responsible for the care and well-being of a loved one who can no longer care for themselves. They are both put into this role suddenly. They both feel very unprepared for the task.
But for men there are a few unique twists. There is a tacit expectation for men to be strong and show no emotion. Although they may feel hurt to see their loved one in a vulnerable state or feel pressure to handle everything, men don’t always express their feelings about their situation. It can lead to resentment and depression.
Bathing and dressing women presents another challenge to male caregivers, particularly those who have never performed these tasks while caring for children. According to a report from AARP in 2010, 24 percent of male caregivers assist a loved one in getting dressed and 16 percent of them help with bathing. Alternatively, 40 percent of male caregivers pay health aides or nursing assistants to perform these tasks.
Ana Nelson, vice president of programs and services at the National Capital Area chapter of the Alzheimer’s Association, says the unexpectedness of being a caregiver is different for men. “Some of the earlier studies showed that males were experiencing some very unique challenges including the fact that male caregivers are more likely to say that they feel unprepared for this role. A lot of them said that they are uncomfortable in helping with personal care. Some of them say that they don’t want to ask for help.”
Self-care Isn’t Just for Women
Caregiving is not for the weak. Those who juggle the everyday tasks of providing for an indisposed family member may find that their physical and mental health is taking a beating. Self-care is an urgent step in caring for a loved one with Alzheimer’s.
It may seem selfish at first, but taking “me” time can restore a man on many levels. Keep the weekly haircut appointments at the barbershop. Have some family fun with your spouse or children. Enjoy a sports game with friends. Indulge in your favorite hobby.
Peete says that taking care of his own needs helps him deal with caregiving better. “One thing I learned as a caregiver is that you have to take care of yourself too. It can be physically and emotionally draining. As a caregiver, you have to find ways to maintain your own identity and do things for yourself.” He seeks refuge in a social group called Man Cave. “Every Thursday for three hours, we just get together and be guys.”
Nelson says that although male caretakers have been quiet in the past, the tide is slowly changing with the help of social gatherings. “Men tend to not open up about their feelings and fears and concerns. We know that it can increase their chances for depression. We know that about 40 percent of family caregivers suffer from depression. And if folks don’t ask for help it puts them at a higher rate for burnout. Men are realizing that it’s okay to ask for help. One of the ways they get help is through support groups. They’re joining non-traditional support groups.” Nelson adds that support groups that are geared specifically for men-only have a higher success rate.
Where to Get Help
One common concern for caregivers, male and female, is where to begin. An Alzheimer’s diagnosis does not have to mean the beginning of the end. It does mean that families have to adjust to a new normal. But what can you expect? How much will it cost? Where are the local resources?
The DC Office on Aging is a good place to start. It offers help with respite care, financial management, behavioral symptom management, and even social activities. Call 202-724-5626 for more information.
The National Capital Area chapter of the Alzheimer’s Association has an array of support services. Nelson states that they have specialized services to fulfill the needs of men. “We offer educational presentations for family caregivers. We offer a place for men to turn for support. We also offer care consultations to help families plan for care. Our care consultations have grown tremendously. One of the groups that has grown in popularity is the Memory Cafe. It’s a non-traditional group for people at all stages of the disease and their caregivers. It gives them a chance to meet with other people and socialize and just to enjoy each other’s company.” Call 800-272-3900 for more information or to connect with a navigator.
Family Caregiver Alliance offers state-specific information on services such as resources on living arrangements, government health and disability programs, legal assistance, and more. Call 800-445-8106 to speak with a representative.
AARP offers information for those who just don’t know where to begin. Peruse information on benefits, insurance, providing care, senior housing, and end-of-life care. Call 888-OUR-AARP for help.
For now, Peete and his wife enjoy spending time with Daisy. Whether it’s watching Judge Judy or participating in a family social gathering at the senior center or just listening to the Rat Pack radio station on the deck, the Peete/Mack family savors the quiet moments. The memories may fade but the bond never will.
Candace Y.A. Montague is the health reporter for Capital Community News.