The picture is a familiar one: two young people standing in front of a minister, a priest, or a justice of the peace, repeating marriage vows. The exact words may differ, but one particular phrase common to most ceremonies consists of five little words: “in sickness or in health.” Decades later, that promise will take on added significance, especially for the millions who are serving as primary caregivers for chronically-ill spouses. Experts on caregiving agree that the challenge of being both spouse and caregiver is the biggest test these marriages will ever face.
The Emotional Turmoil is Harder than the Physical Labor
This article first appeared at Considerable.com one year ago, written by reporter Sally Abrahms. She spotlighted a couple named Joe and CJ who have experienced the challenges of caregiving firsthand. At age 60, Joe was in such great shape that he actually undertook a bike ride from Virginia to Oregon. But 8 years later, in 2016, Joe suffered a stroke. Then came more strokes, followed by leukemia
“Joe is still loving and caring and has a great sense of humor, but he’s not Joe and that’s scary and painful,” his wife CJ told Considerable. “The physical work of caregiving makes me tired, but I can get over that. It’s the emotional turmoil of watching my husband be different than he had been, and seeing the change in this vibrant man who I love so much.” CJ has since written a book about their saga called One Pedal at a Time.
More than 4.6 Million Spousal Caregivers, Says AARP
According to the most recent AARP report on caregiving in the U.S., published in 2020, there are nearly 42 million people in America caring for someone 50 and older. Based on the report, 11 percent of those caregivers, more than 4.6 million, are spouses, a figure that has risen by nearly one-third since 2009. Spousal care lasts an average of nearly 5 years. “With people living longer,” says the Considerable article, “[those numbers are] expected to grow.”
Part of the reason involves sheer demographics, as the oldest Baby Boomers reach age 80 in the next few years. Another big factor: the expected rise in cases of Alzheimer’s disease. Today, 5.8 million Americans live with Alzheimer’s; by 2050, that rate is slated to triple, says the article.
A Major Change in the Marriage Relationship
Caregiving is tough enough, experts say, but when it’s your beloved husband or wife, the burden can seem overwhelming. “In addition to all the usual challenges that come with caregiving responsibilities, it’s also a big change in the marriage relationship,” John Schall, CEO of Caregiver Action Network, told reporter Abrahms. “There are new issues of dependency and it can get in the way of intimacy. The marriage dynamic has to adapt to a new normal.”
This is particularly true when there’s a significant age gap. “Those who married older spouses may find that a 15-year age difference that didn’t matter in their 20s and 30s can seem huge when one is 65, and the other, 80,” the Considerable article says. One wife who spoke with Abrahms cared for her husband, 16 years her senior, for 11 years. “When a spouse dies it’s horrible but it’s over,” she said. “When the spouse has a chronic condition or all of a sudden something serious happens, it is an ongoing ordeal. The couple doesn’t know what to expect from each other. It totally changes the game from what it was. There can be excruciating loss.”
The Burden of Spousal Caregiving Puts a Strain on Health
We checked the AARP report and found that fully 97 percent of spousal caregivers consider themselves as the primary providers of care. That can mean primary responsibility (or, often, sole responsibility) for helping a spouse in and out of bed, helping them dress and eat, even accompanying them to the toilet and shower. This is usually on top of household chores formerly handled as a team, like grocery shopping, paying bills, and home maintenance. Spousal caregivers also find themselves managing medications, coordinating outside care, and scheduling and driving to doctor’s appointments.
“That stress and exhaustion can take a toll,” says the Considerable article. The AARP report provides some perspective. “Caregiver self-rated health seems to have declined during the past five years,” says the report. “Alarmingly, the stress associated with caregiving may exacerbate declines in health that occur with age.” AARP data say that 20 percent of caregivers describe their health as fair or poor. Among solo caregivers, that figure is 27 percent.
Admit You Can’t Do It Alone and Seek the Help You Need
The Considerable article suggests that it’s important for spousal caregivers to be honest with themselves. “If you’re caring for your spouse, it’s normal to feel conflicted emotions, experts say — everything from guilt to resentment to anxiety and even jealousy of other happy couples.” Abrahms offers these suggestions on how to cope, along with links to outside organizations (these are edited for length):
- Focus on what you can still do as a couple.
- Find the right outlets. “It’s normal to feel resentment, but you have to avoid taking out anger on your spouse,” Abrahms writes. The Caregiver Action Network can link you to resources near you. Reach out to a pastor or priest, a sibling or a close friend.
- Ask for help. “You will often need to take the initiative,” Abrahms writes. Frequently, friends and neighbors don’t offer to help because they don’t know what you need.
- Promote independence. “No adult likes to feel dependent, so give your spouse whatever control they can handle,” Abrahms recommends. Voice-enabled smart-home devices can give your loved one the freedom to turn on the lights, play music, change the TV channel, lock the door, and more.
You’ll find more helpful tips for spousal caregivers here at the website of Caregiver.com.
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(originally reported at www.considerable.com)