Serving as a caregiver for someone you love is one of the hardest things any of us will ever do. But when the caregiver is also the spouse, the experience is particularly devastating. This article just published by Kaiser Health News, written by columnist Judith Graham, shines a revealing spotlight on the pain of caring for a husband or wife in decline, and we think it’s a helpful read, both for those who may find themselves in that place one day and for empathetic friends and family members who want to ease their burden.
Caregiving and Marriage Can Leave the Well Spouse Overwhelmed by Stress
To illustrate the situation, Graham cites the case of a 68-year-old man named Larry, caring for his wife, Deborah, ailing with COPD – chronic obstructive pulmonary disease. “For a dozen years, [he] didn’t find it especially difficult to care for his wife,” Graham writes. “But as her illness took a downward turn, he became overwhelmed by stress.” Larry told Kaiser Health News that he was “constantly on guard for any change in her breathing.” He said he experienced the same kind of alertness that a combat soldier feels, waking up at the slightest movement. “I don’t think I got a good night’s sleep for five years,” he told Graham. “I gained 150 pounds.”
Over time Deborah’s COPD worsened and she was also experiencing heart failure. “Deborah was taking 24 medications each day and rushing to the hospital every few weeks for emergency treatments,” Kaiser reported. As his wife became weaker, Larry found it hard to stay in the room with her because he couldn’t stand to watch Deborah suffer. Deborah finally passed away in 2013. As another grieving husband told Judith Graham, when a spouse goes through a long period of decline, “we lose our best friend, our love, our future. But your children, friends, relatives – they don’t get it.”
Caregiving and Marriage Can Shake Even Healthy Relationships to the Core
According to the Kaiser article, even strong marriages are “shaken to the core when one spouse becomes sick or disabled and the other takes on new responsibilities.” And experts point out that the longer a couple has been married, the harder it is to rewrite all the expectations that have guided the marriage for decades. The National Institutes of Health published a comprehensive analysis of 168 studies of caregiving, and the researchers found that, “Compared to adult children who care for their parents, spouses perform more tasks and assume greater physical and financial burdens when they become caregivers.” Spouses are more likely to experience depression and marriages are far more likely to undergo significant strain when a spouse is also a caregiver.
When a couple experiences a serious illness, emotions run high and communication becomes “problematic,” says Graham. “Husbands and wives feel disoriented and uncertain about how to respond to each other.” Especially early on, illness tends to “heighten emotion and short-circuit communication.” On top of the internal stresses, there is the significant problem of isolation. “We often hear about family members who won’t get involved or are overly critical of the well spouse but never pitch in or visit,” said one expert in caregiving. “And then there are lifelong friends who drop out of the picture.”
Caregiving and Marriage: More Than Half of Caregivers Are Flying Solo
According to research published earlier this year on the Health Affairs website, more than half of all spousal caregivers are doing the difficult work of taking care of a husband or wife alone, receiving no help from children, family or friends, with no access to paid home health aides. As a result, the Kaiser article states, marriages are undermined as illnesses worsen and emotional connections are lost. “The well spouse can go from being a partner and a lover to a nurse and a caregiver, which is an entirely different kind of relationship,” one caregiver told Judith Graham. Sometimes as spouses deal with the emotional strain, “[they] can become distant as they struggle with feelings of loss, fear, and, frequently, misunderstanding and anger.”
Given the devastating impact caregiving can have on marriages, Graham asks the central question: “How can older couples navigate these challenges and protect their relationships – an essential source of comfort and support – when illness strikes?” In the Kaiser article she offers these suggestions:
- Reset expectations. Beyond facing what has been lost due to illness, focus on what remains intact. “Figure out what you can do together and what each of you can do separately,” says Graham, replacing more active pastimes with activities you can still enjoy, such as reading or cooking together. The important thing is open communication as you find ways to respect each other’s needs.
- Divvy up responsibilities. “Couples need to retain a sense of balance in their relationships, to the extent possible,” Graham writes. You might create a list of household tasks, then divide them up according to each spouse’s physical abilities.
- Include the ill spouse. Don’t relegate the ill spouse to a passive role. “To the extent possible, set boundaries around caregiving and maintain reciprocity in the relationship,” the article says. “When joint activities are no longer possible, just being with someone can express closeness and solidarity.”
- Expand your network. “If friends and family members don’t seem to understand what you’re going through, find people who do,” Graham advises. Support groups and church friends can be a vital source of care when families aren’t in the picture.
- Make meaning. At some point, experts say, you’ll need to find a way to embrace your identity as a caregiver. For many this involves focusing on concepts such as marital fidelity and mutual commitment to their spouse, “in sickness and in health.” Over time the caregiver can begin to see his or her role, not merely as a set of daily duties, but as an expression of love and compassion. As one caregiver told Graham “Measure success by how well you connect, love and feel loved.”
Don’t Overlook Your Need to Plan for the Future
Whether or not you’re serving as a caregiver, it’s imperative that you look ahead and plan for your own retirement future. The best way we know of to start the planning process, or to take it to the next level, is to join Rajiv Nagaich at one of our highly popular LifePlanning Seminars, where you’ll learn how to put all the pieces of the retirement puzzle together in a way that protects your assets and keeps you from becoming a burden to those you love. For a calendar of seminar dates and locations, visit our Live Events page and register for the seminar of your choice. There’s no cost and no obligation – and it will really open your eyes to a better way to prepare for retirement. Age on!
(originally reported at www.khn.org)