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Supporting Spouse Caregivers

Couple sitting on the couch

Every Valentine's Day, we see news stories about couples who are celebrating their 50th, 60th, 70th and even the occasional 80th anniversary. Our longer lifespan can translate to increased longevity for marriages as well.

But living longer means that we are more likely to develop chronic health conditions such as heart disease, diabetes, arthritis, osteoporosis or Alzheimer's disease. For today's married couples and domestic partners, the "sickness" part of "in sickness and in health" can last for many years. 

Many spouses today are caring for a husband or wife with chronic health conditions. These husbands and wives are often called upon to perform hands-on care tasks that were once the exclusive province of medical professionals. These responsibilities, combined with the change in the couple’s relationship and the loss of emotional, financial and physical support when a husband or wife is ill, put caregiving spouses at greater risk of developing their own health problems.

In 2011, researchers from Pennsylvania State University and the University of British Columbia evaluated the emotional and physical histories of 1,700 older couples, compiled over the course of 15 years. The participants ranged in age from 76 to 90, and many had been married for more than 40 years.

The relationship between disability and emotional health is already well-established. So it was not surprising that the seniors in the study who had the highest rate of depression were those with health problems that lead to functional limitations, such as the physical inability to climb stairs, pick up objects, cook and shop.

The researchers next examined the well-being of the caregiving spouses. According to Prof. Christiane Hoppmann from the University of British Columbia Department of Psychology, the well spouses also experienced depression—often to an even greater degree than their disabled spouses. Hoppmann says, “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.”

Hoppmann 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. It's that old saying, use it or lose it."

Spouse caregivers find it harder to ask for help

Experts urge caregivers to seek help. However, the barriers to accepting support are greater for caregiver spouses than for adult children serving in the same role. Kathryn Betts Adams, professor of social work at Case Western Reserve University, studied the spouses of husbands and wives with dementia and found that they need encouragement to take care of themselves. Adams said, "Caregivers have a long exposure to stresses and losses from the dementia and fatigue that comes from caring for their spouses, so they experience fewer positive emotions. Some may have feelings of guilt about participating in activities with friends or in the community when their loved ones are no longer able to do so."

Spouse caregivers are also less likely to discuss the problems they are experiencing. The traditional reticence to violate the privacy of the marriage may cause them to bottle up their feelings of stress, frustration and grief. This in turn affects their health and strains their marriage all the more. Support groups, therapists and geriatric care managers can provide a safe outlet.

Professionals may also help with tough decisions about the best living situation for the couple. Some couples choose to move together to an assisted living or continuing care community, where the disabled spouse can receive assistance. When the ill spouse's needs are medically complex, nursing home care may be the best choice. Nursing home social workers offer counseling on ways the couple can stay connected.

Support for caregiving spouses at home

Today, most seniors who are dealing with the challenges of chronic illness prefer to stay in their own homes. The U.S. Agency on Aging reports that living with a spouse is a primary factor contributing to the success of remaining at home. Community services such as adult day care and senior transportation are available to help. And for many families, in-home care is the key ingredient to allow their loved one to be safe and well cared for at home. In-home care addresses many of the challenges caregivers face:

Caregiving spouses are at risk for stress and caregiver burnout. In-home care provides respite and assistance to give caregivers a break, offering the peace of mind that allows them to truly relax while taking time for themselves.

Caregiving changes the dynamic of a couple's relationship. Hiring a trained, professional in-home caregiver "normalizes" the couple's routine. When a trained caregiver provides assistance with personal hygiene tasks, such as bathing, grooming, toileting and incontinence care, the couple can spend more time doing things they enjoy.

Caregiving impacts the well spouse's career. Many husbands and wives retire early in order to provide care. But as seen in “Financial Planning Tips for Working Caregivers in the December 2011 issue of Caring Right at Home, this may not be the best choice. In-home care can be a cost-effective way to allow well spouses to continue their jobs.

Caregiving is physically difficult for family caregivers. Caregiving is hard work, especially if the spouse is also dealing with health problems or the normal changes of aging. In-home caregivers are trained to perform taxing tasks such as bathing, transferring between bed and chair, and wheelchair assistance. The caregiver can also help with housekeeping, laundry and other household chores.

The home may not be safe for the spouse who needs care. An in-home care agency can perform an assessment of the home, and suggest or provide equipment and modifications to adapt the home for the person's needs and make caregiving easier for their spouse. The in-home caregiver then continues to ensure that the house is clean and free from fall hazards.

The ill spouse may need skilled medical services. Spouses often feel unprepared and unsure when performing medical care tasks. And many tasks should be left to professionals. Depending on state law, skilled nursing care can be provided in the person's home.

Learn More

The Well Spouse Association offers information and support groups for partners of chronically ill and/or disabled people. The motto of the WSA is: "If one is sick, two need help."

The New York Times recently examined the way spouses handle the intellectual and emotional changes resulting from head injury in "When Injuries to the Brain Tear at Hearts."

When seniors marry in later life, one or both spouses have probably been married before, and have adult children. See "Late Life Remarriage: Stepfamilies Make Caring More Complex" to find out about this often challenging dynamic.

For more information on topics related to home care and healthcare, visit our Home Care and Healthcare Advocacy group on LinkedIn.

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Right at Home, Inc. is a national organization dedicated to improving the quality of life for those we serve. We fulfill that mission through a dedicated network of locally owned, franchised providers of in-home care services.


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