Support for Spousal Caregivers

CureToday.com, Special Issue 2008
by Melissa Knopper

In the chaos and intensity that surrounds a new cancer diagnosis, everyone tends to focus all of their care and concern on the patient. Too often, medical staff and relatives forget to stop and ask the family caregiver how they are doing.

 

While caregivers tend to brush their own needs aside, experts warn that completely selfless devotion can backfire. A study in the Journal of the American Medical Association found that elderly caregivers have a 63 percent higher mortality rate than their peers. And new research highlights the importance of the caregiver's well-being. It turns out, the health and mental outlook of the caregiver can impact a cancer patient's survival and quality of life.

Take a look at some of the typical "side effects" cancer caregivers tend to experience:

Depression
A study in the Journal of Clinical Oncology showed women who cared for their husbands who had prostate cancer experienced depression at twice the rate of the cancer patients themselves. Caring for someone full-time can lead to feelings of panic, despair, and isolation. And after the initial crisis of diagnosis, surgery, and chemotherapy or radiation, there's a lingering worry that the cancer could return. Reach out to friends and family, online chat groups, and support organizations to help reduce the feelings of isolation.

If after talking with friends and family or trying exercise and other stress reduction techniques doesn't help , it may be time to see a therapist or talk to a doctor. This may be the first time you have ever felt truly depressed, but there is no shame in asking a professional to help pull you out of it.

Insomnia
Getting up in the night to care for a sick person, offer pain medication, or just listen for changes in breathing can wreak havoc on normal sleep patterns. Sometimes this wakeful type of sleep can become a habit and leave caregivers exhausted during the day. Other times, caregivers may find themselves wide awake in the middle of the night, feeling overwhelmed by fears and worries.

To overcome insomnia, sleep experts suggest everything from guided imagery and relaxation techniques to acupuncture and even warm milk, which contains a sleep-inducing compound called tryptophan. Cutting back on late afternoon coffee breaks and boosting your exercise, especially yoga, can also help caregivers sleep better. Sometimes it helps to write down your worries, and release them for the day, before heading to bed. If all else fails, it may be time to talk to the doctor about a non-addictive sleep aid.

Stress/burnout
The constant stress of caregiving can make you more vulnerable to getting sick. Stress can make your back and shoulders tense, and lead to more aches and pains than usual. Experts at the Family Caregiver Alliance remind us to listen to the airline attendant who says to put on your own oxygen mask before you help someone else. That means taking a look at your stress level as a caregiver and trying to prevent burnout before it hits. Make a list of what triggers your stress right now. Then make another list of steps you could take to reduce that stress. As former First Lady and caregiver advocate Rosalynn Carter says, you can't be much help to your sick relative if you don't take care of your own needs”both physical and emotional.

Experts who study the art of caregiving offer the following common-sense solutions to help caregivers manage their stress and refuel:

Find meaning. American Cancer Society researcher Youngmee Kim, PhD, calls it "benefit finding." Other researchers label it a "sense of mastery." If you can take your experience with cancer, even as a caregiver rather than a patient, and learn from it, you will have less depression and anxiety. Cancer caregiving can help you find more meaning in your life and focus on the right priorities into the future. How to better develop this sense of mastery? Work on your personal growth. Participate in an art therapy workshop for cancer patients and spouses, buy a new journal and write your way to the answers, talk with a counselor, or lean on your faith.

Others delve into the cancer diagnosis, trying to learn everything possible about the patient's condition. This gives caregivers a sense of control and helps them to be better patient advocates. If you accept your role as caregiver, and approach it like a professional, it can be a very empowering experience.

Reach out. Support from family and friends is key. Everyone knows this, but it's not always easy, especially for caregivers who live in remote rural areas. Advocates at the Well Spouse Association got around this barrier by sending "round robin"-style letters to caregivers who lived in isolated settings and couldn't make it to a local support group. Caringbridge.com is another nice resource for family members who are scattered around the country but want to stay close. Otherwise, support groups for cancer patients and caregivers are pretty easy to find through local hospitals and the American Cancer Society. Join one. It makes a huge difference to feel you're not the only one going through something hard.

Take offered help. As the primary caregiver, you may bump into a friend or neighbor who asks, "What can I do to help?" Veteran caregivers offer this suggestion: Always keep a list in your pocket. That way, you can pull it out and sign them up to sit by your relative's bedside so you can get out for a nice walk, attend religious services, take a yoga class, or get a massage. For other shy types, there are websites such as Lotsa Helping Hands that allow caregivers to set up a system with calendars and online organizing tools so friends and family can jump in and help without even being asked.

If friends or relatives are not available to step in for a few hours, hire someone, or find adult day care. The U.S. Administration on Aging offers a national database of elder care providers, called Eldercare Locator.

Communicate. Most often, when a person is diagnosed with cancer, it's the spouse who takes over the caregiving. American Cancer Society research shows husbands and wives can affect each other in profound ways in this new relationship (as patient and caregiver). And it goes both ways. First, they discovered wives hold themselves up to impossibly high standards as caregivers. They get stressed out, try to do too much, and rarely make time for themselves. The study showed this had a negative effect on the husband's ability to heal. Instead, the husband absorbed these negative feelings and felt guilty about putting his wife through so much.

Meanwhile, the ACS study found male caregivers also affect their wives, but in a different way. A group of women with breast cancer said their husbands would try to ease their worries and fears by minimizing them and offering "quick fix" solutions. While the husband wanted to help, the wives perceived this as an uncaring attitude. Most of the women said they just wanted someone to listen and give them a hug. As a result of this study, the ACS may soon offer a special course for male cancer caregivers that will teach empathic listening and open communication.

With everything they have to do in a day, caregivers often neglect basic health maintenance. Sometimes caregivers get in the habit of putting themselves last. If that's the case for you, try thinking of it a different way”if you can see it as giving a gift to the person you are caring for, it might be easier to make time each day for good nutrition and exercise. Caregiver groups offer the following reminders to help caregivers take better care of their personal health:

> Make sure you add some fruits and vegetables to your diet each day.

> Eat three meals a day, and guard against weight loss.

> Stay hydrated.

> Take a daily multivitamin.

> Shoot for eight hours of sleep per night, when possible.

> Exercise or go for a walk every day, even if only for 10 to 15 minutes. Studies show exercising four times a week helps caregivers sleep better, prevent heart disease and high blood pressure, and stave off depression.

> Line up help so you can keep your regular appointments for dental cleanings, health screenings, and annual check-ups.

> Get a flu shot so you don't get stuck being too sick to be a caregiver or put your loved one in danger of getting sick themselves.

> Make room for humor. Keep in touch with friends who make you laugh; rent a funny movie now and then.

> Keep up with social groups, such as a book club or a softball team. These are important ways to combat stress. Schedule regular times to socialize with friends and family.

As a caregiver, it's common to get so absorbed in your new role that you lose your own identity. Neglecting your personal needs is easy to do, but avoiding this common pitfall is key, both for the patient™s well-being and your own. Remember, you are still a person in your own right and it's not shameful to care for yourself before turning back to your caregiver duties. In fact, it's one of the most important ways you can help another person.

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