She’s an architect in her early 50s who never dreamed she’d become a full-time caregiver for her husband of the same age. Before his diagnosis of leukemia, he was a vigorous, energetic person who ran marathons. Still, he needs extensive help to navigate his treatments — which have already involved chemotherapy, radiation, a bone marrow transplant and lengthy periods of hospitalization.
The architect is keeping her promise to care for her husband, a vow she doesn’t regret. Yet three years into the caregiving, and having lost her job in the process, she says the emotional toll is overwhelming.
“What’s awful is that because I’m spending nearly every waking hour meeting my husband’s needs, I’ve become tremendously isolated. From time to time, my friends offer to relieve me. But my husband refuses to let anyone else care for him,” she says.
The architect not only worries about her mental health. She also fears an erosion in the quality of her marriage, which has been strong to date.
“Because we’re close, my husband considers me his safe place to vent all his frustrations. I understand and usually acquiesce. But when my rage builds up inside, I blow,” she says.
Given the aging U.S. population and longer lifespans, more people now live with chronic conditions that require care. Family caregivers provide the equivalent of $470 billion in unpaid care each year — and 10 percent of that is provided for spouses.
“Under the pressure of caregiving, it’s not uncommon for the relationship between husband and wife to fall apart. But that doesn’t have to happen,” says Dr. Diana Denholm, a psychotherapist and author of “The Caregiving Wife’s Handbook.”
Denholm married a man 16 years her senior, and a month after proposing, he was diagnosed with colon cancer. He survived the cancer but went on to develop congestive heart failure, which led to a heart transplant and many other serious medical issues. All told, she cared for her husband for 11 years before his death.
Fully 60 percent of caregivers are women, and Denholm says it’s especially “tough stuff” for a wife to care for her husband. To cope, she urges wives to face their emotions directly.
“If you don’t, they’ll bleed into your care of him, possibly damaging both of you. If you’re angry, don’t be mean or passive-aggressive. Find healthy ways to release your anger. In confidence, share your strongest emotions with a close friend so those emotions don’t eat you up,” she says.
Amy Goyer, an expert on aging and families for AARP (www.aarp.org), says too many spousal caregivers sacrifice themselves at the expense of their own well-being and health.
“We have to take care of ourselves. That’s not selfish. It’s practical. We don’t expect our cars to run on empty. So likewise, we have to have little tank fillers of our own,” says Goyer, author of “Juggling Life, Work, and Caregiving.”
Here are a few other pointers:
• Safeguard your relationship.
All caregiving relationships, including those between grown children and their aging parents, are challenging. But Denholm says it’s especially difficult for spouses to keep their relationship strong.
“As married partners we have our own identities and roles. These are threatened when one person becomes a caregiver for the other, which challenges the whole relationship. It’s not uncommon for the relationship to fall apart,” she says.
With the best of intentions, for example, a caregiving wife seeking to be helpful might begin to spoon-feed an ill husband, even though he could continue to feed himself —albeit with difficulty.
“To the extent possible, try to keep your roles intact. You have to be careful not to protect the other person too much,” Denholm says.
Also, keep up activities that you’ve long enjoyed as a couple—like watching funny movies on Netflix or listening to a music streaming service such as Pandora.
• Adjust your view of success.
Rather than approaching caregiving as a goal to be attained, it’s helpful to remember that caring for a loved one is an ongoing process with challenges and setbacks along the way. This can be particularly true if a partner is facing a life-threatening or incurable condition.
“As caregivers, we have to adjust our goals and views of success,” Goyer says.
Caregivers are like those facing strong, incoming ocean waves. Each wave poses a challenge yet there’s always another coming.
“Being resilient is being successful,” Goyer says.
• Protect your mental health with breaks.
Goyer says it’s critically important for caregivers to pull away from their responsibilities from time to time, if only to call a friend, walk around the block, take in a film or grab a cup of coffee. Also, it’s often beneficial for caregivers to take up an artistic pursuit such as painting or another hobby.
Many caregivers feel guilty about taking breaks to pursue activities they enjoy. But Goyer says such feelings are misguided because breaks are restorative for all concerned.
“Even Mother Teresa took breaks,” she says.