By Sally Abrahms
Two years ago, my best friend became a caregiver to her husband as he went through ten surgeries for melanoma and a hip replacement—all in twelve months. Today he is well but she is not. This September, she was diagnosed with a rare form of cancer and they have switched roles: he is now the spousal caregiver.
“When you have a sick and well spouse, you are never going to be feeling the same things no matter how close you are,” she told me.
Providing care for a parent can be grueling and emotional, but then, it’s the cycle of life that parents get sick first. When it’s your spouse or partner, that cycle is out of whack.
They’re suddenly a patient, or someone with a serious chronic condition. That causes a special pain. I’m not speaking anecdotally: my sweet husband has three stents in his heart.
The obvious difference between caring for a spouse and a parent: dreams are dashed, or at least modified, along with the expectation of sharing more cherished memories. They’re suffering, but so are you.
Of course, when you are no longer in love with that person but still the caregiver, the situation can feel even more complicated and draining.
What a Well Spouse May Be Feeling
The caregiver spouse can feel ambivalence about their role. Along with profound sadness and caring are often other hard to admit feelings.
These may be:
- Anger and resentment (at the situation and even your spouse for getting sick and “ruining” your life or feeling it’s not fair that you’re in this situation)
- Impatience and frustration (“What about my wants and needs?” or “I’m sick of him/her being sick and needy.”)
- Guilt (when you enjoy, or make time for, yourself, love being “off duty,” or want it to be over)
A recent widow confided that she “had become a nurse, not a spouse.” For 16 years she cared for her second husband as he became cognitively and physically disabled. She was wildly jealous when she saw happy couples her age enjoying life and each other.
More “acceptable” feelings for a healthy spouse are: helplessness, constant worry, burnout and exhaustion, loneliness, stress and depression.
“You are in a very difficult position,” says John Schall, chief executive officer of the Caregiver Action Network, a national non-profit for caregivers and member of the Family Caregiver Council. “The sympathy of friends and the concern of healthcare providers are focused on your loved one, while no one is paying much attention to how you may be affected,” he notes.
It’s no surprise that a wife caring for her husband is six times more likely to suffer depression than a non-caregiving wife. Caring for a husband, wife or partner who has Alzheimer’s and other dementias—and may have forgotten your life together and you—is particularly devastating.
You can’t change the situation—wouldn’t that be amazing?--but you can find ways to cope with a sick spouse and your own angst. I asked experts and spousal caregivers for best strategies:
1. Focus on what you can do together, not what you can’t. It might not be the same thing you did before, but find ways to still enjoy each other’s company.
2. Be kind to yourself. Your feelings are perfectly normal. You are a good person trying your best.
3. Breathe. It really works! Take a meditation course or buy a book that has online meditations. (I like The Mindful Way Workbook and the downloads at wwwguilford.com/Teasdale-materials. The book also comes with an MP3 CD.)
4. Have an outlet to talk through your feelings. “You probably don’t want to express your anger, guilt or other negative feelings to your spouse,” says Schall. “Online forums where you can vent your feelings anonymously or ask questions of others in similar circumstances can help you from keeping all those feelings bottled up until they explode.”
5. Find ways to reduce your stress. That might be doing something that is fun, relaxing or meaningful. Exercising is a must! Terri Corcoran’s husband was ill for years with what they eventually found out was undiagnosed Fragile X Syndrome, a genetic disorder. What saved her, she says, is going out with friends (a professional caregiver stayed with her husband), seeing her grandchildren, writing online for the Fragile X and caregiving communities and getting deeply involved in her church and the national Well Spouse Association; it has local chapters around the country.
6. Don’t be a hero! Ask friends and family for help. Gail Hunt, CEO of the National Alliance for Caregiving (and Family Caregiver Council member), believes “the caregiving spouse is in a unique position to connect as equals with their spouse’s network, unlike when caring for an aging parent. The caregiver is doesn’t have to build a relationship with their spouse’s friends, family, and colleagues because it’s already there. Use it!”
Groups like CaringBridge let you set up a free website to send health updates to others and coordinate needed help. You don’t have to personally ask individuals—that can be hard. Tasks you need done will be on the site for them to sign up. Having a central place to update information also saves you time and lots of exhausting repetitive calls, emails and texts.
Your best bet for spousal caregiver resources is the Family Caregiver Council
. It offers a comprehensive list of organizations and associations that understand your feelings and issues. You will find strategies, support groups and solid advice.