Supporting caregiving spouses
When we think of a typical family caregiver, most of us picture a middle-aged adult child—perhaps a member of the so-called Sandwich Generation, those taking care of both children and an elderly parent. Yet a recent study from the University of Washington revealed that today, many husbands and wives (the numbers of men and women are about equal) are serving as primary caregiver for an ill or disabled spouse. Said lead author Prof. Emilio Zagheni, “The extent to which spousal care is prevalent at old ages, 70 and 80 years old, was surprising to us. We expected to see more caregiving by adult children of their parents.”
And these spouses are providing care that is more hands-on and medically technical. In 2014, an AARP report, “Family Caregivers Providing Complex Chronic Care to Their Spouses,” showed that the majority of caregiver spouses are called upon to not only take their loved one to the doctor and help with personal care, but also to perform tasks that would be considered clinical in nature, such as wound care, operating durable medical equipment and using meters and monitors. And, said AARP’s Susan Reinhard, “Nearly three-quarters of the spouses they care for were taking five or more medications, which are not easy to coordinate. And some of these medications were administered in non-pill forms, including injections and infusion pumps, with greater frequency than one might expect.”
The health of caregiving spouses
Caregiving can affect the health of spouse caregivers, who find it hard to get enough exercise, eat well and schedule their own healthcare appointments. And a study from the University of British Columbia found that while people with a disabling illness are likely to suffer from depression, their caregiving spouses may be even more affected. Study author Prof. Christiane Hoppmann explained, “Being married for a long time is a very specific situation. It really ties your lives together. These findings show just how interdependent, emotionally and physically, long-term couples can become.” She describes the pattern that can take root in these marriages: “When people are depressed, they tend to want to stay at home—but that causes a spouse to stay home more too. That’s a problem, because when older adults stop being active—going for walks, socializing, shopping—they risk losing that functional ability.”
Caring for a spouse with Alzheimer’s disease or other dementia is especially challenging. These caregivers experience emotional distress at the changes in their spouse’s behavior and personality, and the resulting change in marital dynamics. A study from Florida Atlantic University also reported that spouse caregivers say the changes in communication are the most difficult and painful. These spouses may benefit by counseling to help them understand what’s behind their loved one’s behavior changes, and to develop management strategies that can help.
Making the transition into the caregiving role may be a gradual process; other times, an injury or sudden illness may thrust the spouse abruptly into caregiving. In either case, caregiver training and learning all they can about their spouse’s condition is vital. As active partners in their spouse’s care, they are advised to attend doctor’s appointments, and ask questions.
Research shows that spouse caregivers find it harder to admit they need help and to ask for it. When a married person is living with a disability, it’s expected that their husband, wife or partner will provide the care they need. But this care can become burdensome, especially when the caregiver spouse is living with arthritis, vision loss or other health challenges of their own. Couples should be reminded that their “in sickness and in health, forsaking all others” vows didn’t mean that they should forsake assistance! Getting help can enhance the care they provide, and in the process, protect their relationship as a couple. Where to begin?
Talking to other family members, especially adult children, can be the first step. Other family members may not understand what the couple needs, or they may hesitate to step in, fearing that they are intruding or interfering. This is a time when long-standing family dynamics may get in the way—and is a time to change them. Hold a family meeting sooner rather than later to come up with a division of duties and perhaps financial assistance that meets the couple’s needs. If these conversations are difficult (and they often are), a geriatric care manager or counselor can help.
Look into support services that are available in your community. Call your local senior services agency to get you started. Recognizing the vital role played by family members, most communities also have enhanced caregiver resources. The Eldercare Locator (1-800-677-1116 or www.eldercare.gov) is another good place to start.
Disease-specific organizations, such as the Alzheimer’s Association, the American Heart Association and the National Parkinson Foundation, offer assistance and education to help the couple understand and manage health challenges. These organizations also offer support groups, which can be a great way to get out of the house and connect with others.
Couples or individual counseling can be helpful at this time. Some couples report that caregiving brought them closer together, but many others say that this change in the marital dynamic put a tremendous strain on their relationship. Caregiving and illness not only offer their own stresses— they can also bring to the surface long-standing tensions and conflict. Many older adults hesitate to “air their dirty laundry,” but they should be assured that professional counselors are bound by confidentiality.
Arrange for care support in the home. When a person’s needs are medically complex, moving to a skilled nursing facility, memory care facility or other supportive living environment sometimes is the best choice. But most couples prefer to stay in their own house or apartment, and it’s important to know that support services can be provided in the home. Skilled nursing and rehabilitation care is available. And at a more modest cost, non medical professional in-home caregivers can provide assistance with personal care and grooming, incontinence care and transferring, always with the client’s dignity in mind. Home caregivers can provide housekeeping and laundry, meal preparation, assistance with medication management and transportation to the doctor and other medical appointments, and respite supervision.
These services support both the health and safety of the spouse who needs care, and the well-being of the caregiver spouse. The presence of a trained professional caregiver allows the caregiver spouse to continue their career and take time for other personal needs and interests—a time to recharge their emotional batteries.
Some couples hesitate to engage the services of home care, wondering if this will feel like an intrusion in their home. But many times, once they’ve had a professional caregiver to help out, they realize that this helps normalize their relationship. “I hate for Nancy to help me to the toilet,” said Jim, who is slowly recovering from the effects of a stroke. “But Archie—he’s our home care worker—is a professional. He’s used to it, and he always lightens our mood with his positive attitude.”
For More Information
Read the entire Family Caregivers Providing Complex Chronic Care to Their Spouses report on the AARP website.