Chances are, if you're reading this, that you're already a member of the more than 22.4 million households involved in caregiving. Becoming a caregiver is a personal evolution and identity in itself.
Sometimes you settle in to the role gradually (Mom is less independent), and other times the shift is practically instant (Mom had a stroke). Regardless of how you come to be a caregiver, most of us are pitched into the responsibility untrained and largely unprepared. But there is help.
Remember high school English and the words of the English poet and clergyman John Donne: "No man [or woman] is an island"? Well, you shouldn't be either. You need the physical and emotional support of others, especially if you're the primary caregiver. You get that support by reaching out to family and friends—in essence, by building bridges between the islands.
These bridges are crucial if you want to thrive in your caregiving role. As Gloria Cavanaugh, president and chief executive officer of the San Francisco-based American Society on Aging, observes," Caregiving is one of the most challenging tasks a person can take on, especially if the situation lasts for more than a few months. You can't do it all yourself. You need help, and lots of it."
As a caregiver, you're going to develop a whole new set of skills, not the least of which is reaching out to others. It may feel uncomfortable at first, but with practice, it will build courage and self-confidence.
Perhaps you want to ask for help, but you don't know how. You can learn. Consider it a caregiver's rite of passage.
Your immediate assignment is to figure out what sort of support your loved one needs right away or in the very near future, and what services you, or possibly community agencies, can provide. That way, when you approach other family members for help, you can be very explicit about which tasks they might take on. And you may feel more comfortable asking for their help once you see just how much you're doing and what remains to be done.
You'll need to assemble a caregiving to-do list. Experts recommend following these steps to organize the support you need:
Write down everything— including household chores, transportation, personal finances, and tasks of daily living (such as dressing and grooming)—with which your loved one currently requires assistance. Gather as much input from your loved one as she's able to provide.
Determine how often each task must be performed, getting as specific as you can. For example, your loved one may need a hand with mowing the lawn every week or paying the bills once a month.
Gather information about caregiving resources in the community, such as Meals on Wheels, transportation services, adult day care, and respite care. Remember that many agencies and organizations exist for the sole purpose of aiding caregivers like you.
"Contact just one office to start," Cavanaugh advises. "The person there can direct you to other places as necessary. You can make a lot of valuable connections with very little time and effort."
Once you know what various agencies and organizations can offer, go back to your caregiving to-do list, and mark which tasks they're able to take on, such as phone check-ins or grocery delivery. Be sure to keep contact information for everyone you've dealt with, in case you have additional questions once you've consulted your family.
Make plans to share your list with your loved one and with other family members and friends who make up her caregiving circle. This might best be done at a family meeting.
However you decide to move forward, you'll know you've done your homework, thoroughly researching community resources and all of the services they provide. You've done everything you can without your family's involvement. Now all of you must decide on your respective roles in your loved one's care.
A family meeting allows all those who might want a say in a loved one's care, including the loved one herself, to gather for a frank discussion of the person's circumstances and needs.
Attendees have equal opportunity to express their opinions about what needs to be done, by when, and by whom. If the meeting achieves its purpose, everyone will pull together to support the primary caregiver and ease the physical and emotional demands of giving care.
There is no "best" time to arrange the first meeting. Some families choose to convene before a loved one requires considerable support, so they can plan ahead. But for many others, a medical crisis forces the issue. Even then, experts say, getting together can help organize caregiving efforts and maintain family harmony.
Invite everyone who is affected by a loved one's situation, family members as well as close friends (with your loved one's approval, when possible). If some people can't attend in person, make arrangements for them to call in on a speakerphone, so they can hear everything that's being discussed. Another option is to go online. Today, many families conduct meetings in private chat rooms on the Internet.
Don't forget your loved one, whose attendance at the meeting is especially important. If the person is hospitalized but able to take part, you may want to make arrangements to gather at the hospital (though in that case, you might need to limit the invitees to just immediate family).
In the event that your loved one can't participate because of cognitive or functional impairment, hold the meeting anyway, then report back to them afterward. Provide options that encourage her to make decisions about her own care, to the extent that she is able.
If anyone in your family chooses not to take part in discussions, don't try to force the issue. Just keep the person in the loop as best you can, without asking anything of her. For the first meeting, keep your expectations realistic.
If you're not comfortable running a family meeting on your own, or if family members can't agree on certain aspects of a loved one's care, consider asking a third-party professional to step in on your behalf. Potential facilitators include the family cleric, a psychologist, a social worker, or a geriatric care manager.
The National Association of Social Workers (www.socialworkers.org) can provide a referral to a qualified social worker in your area. You can contact the organization by writing to them for a directory at 750 First St., NE, Suite 700, Washington, DC 20002-4241.
To find a geriatric care manager in your area, get in touch with the National Association of Professional Geriatric Care Managers (www.caremanager.org), which also offers a referral service. Write to them for a directory at 1604 N. Country Club Rd., Tucson, AZ 86716-3102.
As your loved one's situation changes, and the family meetings continue, all of the participants can decide for themselves how and when they want to contribute to the person's care. Everyone, that is, but your spouse, whose level of involvement is pretty much dictated by your own. And that can take a toll on even the healthiest of marriages.
While spouses promise to care for one another in sickness and in health, that vow generally doesn't apply to the in-laws. Still, you need your partner's understanding and support, perhaps now more than ever. How do you get it? These strategies might help.
Explain that caring for your loved one means a great deal to you, as does sustaining your marriage. From the outset, promise you'll make every effort to minimize the impact of your caregiving responsibilities on your relationship.
Discuss your spouse's role in the caregiving. Some partners feel comfortable pitching in with caregiving tasks. Others prefer to remain in the background, picking up more responsibilities at home to ease the burden on their spouse.
If you ask your spouse for help, be very specific about what you want: whether it's making dinner on Monday nights or doing the laundry once a week.
When your spouse does lend a hand, be sure to express your gratitude— sincerely and often.
Make plans for just the two of you. If no one in your family can take over the caregiving responsibilities while you're gone, arrange for your loved one to stay overnight in an assisted living facility. Many such facilities offer short-term respite care.
If caregiving responsibilities are causing a significant rift between you and your spouse, think about consulting a family therapist, marriage counselor, or cleric. Any of these professionals can help the two of you resolve your differences and strengthen your relationship.
Your caregiving role will affect everyone, including your children. Involving them in the caregiving process can help them understand the situation and help allay their fears. Arrange a special meeting just for them, where you explain in general, nonjudgmental terms the issues that have come up and any decisions that have been made so far.
Reassure your children that while your loved one's need for care will change their world, you'll do all that you can to keep their lives as normal as possible. This lets them know they're important, and often that's all they want to hear.
Don't Feel Bad about Feeling Bad
When running through their preflight safety instructions, flight attendants warn passengers: "If you're traveling with someone who needs assistance, put on your oxygen mask first, then help the other person." Why? Because you can't help anyone else if you're struggling yourself.
It's a principle that ought to apply in caregiving too. The reality is, most caregivers focus on their loved ones' needs to the exclusion of their own. While their devotion is admirable, they don't realize that they're setting themselves up for debilitating guilt, anger, depression—and, all too often, burnout.
Studies have shown that the mind and emotions can influence physical health for better or for worse. This is why coming to terms with the powerful emotions in a caregiving relationship is so important. By acknowledging the normalcy of feeling bad, you actually help yourself feel better. In turn, you have more confidence in your ability to give care, which is good for you and your loved one.
To locate support groups in your area, start by looking in the blue pages of your telephone directory in the "Guide to Human Services." You'll see listings for groups as well as for your Area Agency on Aging, which may have additional leads. Alternatively, you can find your Area Agency on Aging through the Eldercare Locator at (800) 677-1116, www.eldercare.gov.
Other organizations in the US that offer referrals to support groups and/or general support for caregivers include the following:
Children of Aging Parents: (800) 227-7294, www.caps4caregivers.org
Family Caregiver Alliance: (800) 445-8106, www.caregiver.org
National Family Caregivers Association: (800) 896-3650, www.thefamilycaregiver.org