An estimated 54 million people in the U.S. are taking care of an elderly or chronically ill loved one, according to the National Caregiver's Association. Some care for a spouse, some for an aging parent. Jane Miller (we've changed her name to protect her family's privacy) cares for both, and she knows first-hand the stresses caregiving can place on a relationship.
About five years ago, Jane began traveling from her home in the Northeast to Florida, sometimes staying as long three months, to care for her 87-year-old mother, who has suffered several strokes. "I would stay with her and fix meals and take care of the house so she could live alone," explains Jane.
Double duty
After arriving home, Jane started noticing changes in Bob, her boyfriend of 15 years. He would forget conversations, which progressed to his becoming lost while driving around the corner. After an initial misdiagnosis, doctors determined that Bob had Stage 2 Alzheimer's disease.
"Some days, he just sits and stares," Jane says of Bob, who is no longer able to drive, but can complete simple tasks such as making a sandwich or using the microwave. Just leaving the house to run an errand requires Jane to leave written reminders for Bob, to let him know where she is. A list of contact numbers is always by the phone, and Jane even has to keep a key handy in case Bob accidentally locks himself into the bathroom.
"There are so many things you have to do that people don't give a second thought to," she muses.
About a year ago, the couple moved to a Florida retirement community so that Jane could care for her mother and her boyfriend at the same time.
Relationships are forever altered
While some stress is to be expected, Jane says caring for a parent has completely changed the relationship she has with her mother. "I love her dearly, but she's difficult to take care of," admits Jane. "We used to be very close. We'd dress alike and call each other sister."
These days, according to Jane, affection has been replaced with downright hostility. Jane admits she's considered walking away, but says deep down, she knows her conscience and faith would prohibit it.
"It used to be horrible. But that's the way life is, and you learn you have to let some things go. You can't carry all the monkeys on your back," she says.
Jane's pragmatic attitude comes from the multitude of caregiving workshops she's attended over the years. When she first became a caregiver, Jane went to as many as possible - attempting to soak up as much information as she could. She says sometimes the stress was unbearable. "You learn to let go. Life used to be very fragile, and I can't afford that because I didn't like the person I was becoming. People kept telling me, ‘You need time for yourself,' and I realized I really do. I won't be able to take care of Bob or my mom if I don't take care of myself."
Jane tries to have some alone time each morning to garden and read her Bible before starting her caregiving routine. Each month, she attends a caregiver support meeting and takes a ceramic class. "If I didn't have time alone, I'd be too stressed out," she says.
A therapist's perspective
"Clearly, care for parents or an ill spouse is extremely stressful," notes Karen Sherman, Ph.D., therapist, professor and author of Marriage Magic! Find It, Keep It, and Make It Last.
Not only is it important for caregivers to have alone time, they also need to be able to share their feelings through a support system. "Really let your feelings come out," she urges. "Don't feel guilty about expressing them. Don't keep emotions pent up."
Thankfully, Jane believes her boyfriend's illness has actually brought them closer together, although she's still coming to grips with Bob's slow deterioration. "He always tells me he loves me, and I tell him all the time I love him. I don't want him to forget that. At the end of the day, he always says ‘thank you.'"
While illness has strengthened the bond between Bob and Jane, it's not uncommon for the stress of caregiving to tear couples apart. Communication has to be a priority, according to Sherman.
"If the person you are caring for is your spouse, try to have open dialog about how this new situation has impacted your relationship for each of you. This will be bonding. Make adjustments in your activities so that you can still have time with one another," Sherman says.
Despite the stress and strain – both physically and emotionally - Jane wouldn't trade in her caregiving experience. "I never realized how long and lonely the walk would be, but it's well worth it," she says.