What the Experts Say

By Nancy Carson, National Family Caregivers Association

Family caregivers provide support, love, and a hefty portion of help. Help to meet medical needs, help to manage logistics, help to enjoy life in the face of difficulty. But helping someone, especially a loved one, can be complicated. Family caregivers often worry about mastering medical information and learning specific skills only to discover that the real difficulty is negotiating how much or what kind of help their loved one will accept.

To find out what advice to provide to you and other caregivers, I spoke to a number of professionals, all of whom have a great deal of experience working with family caregivers, including: Barry Jacobs, PsyD, Associate Director of Behavioral Sciences for the Crozer-Keystone Family Practice Residency in Springfield, PA; Kevin Dougherty, Director of Programs at the National Capital Chapter of the National Multiple Sclerosis Society; Nancy Miller, an anthropologist and clinical social worker on the faculty at UCLA; and Deborah Warren, a clinical social worker directing several programs for the Community Services Board of Alexandria, VA.

The following suggestions are a compilation of what they had to say.

It is always much easier to give than to receive. Receiving makes people feel they are a burden, and this is a prime reason many people resist help.

As a family caregiver you need to demonstrate that giving care is meaningful for you, and that even though difficult, indeed at times exhausting and depressing, it is something that you choose to do. The reasons will vary from person to person. An adult child may be eager for this chance to repay a loving parent. A spouse may reflect on the history of a loving marriage and earlier shared difficulties. A parent of a disabled child may feel an overwhelming desire to give that child every opportunity possible to flourish.

Coming to agreement about giving and receiving care and assistance requires frank conversations. You need to explain what you are concerned about, why you personally want to help, and/or to bring in outside help, or why you need purchase supportive equipment. Your care recipient needs to express his/her thoughts and feelings about needing and getting care as well. Obviously if your care recipient cannot communicate in traditional ways the job is even harder, but experience tells us that closeness brings forth a level of understanding that comes from the depth of our being and can be extremely effective.

In giving help, it is best to begin from the recipient's perspective, with what is acceptable to your loved one, even if this is less than you think necessary. This creates a baseline, and may make it easier to adopt other caregiving practices if the disability or illness increases.

Always let your loved ones do as much as possible on their own, whatever their level of functioning. When a caregiver does too much, it usually increases disability, and makes the "patient" feel more beholden and depressed. It creates a downward spiral for both people.

Try to view the situation from the outside instead of the inside. What are the real needs of each person involved: yours, your loved one's, and also those of other close family members, especially children.

There is a lot to learn, and do, and worry about as a family caregiver. Ask yourself about your need to help. Where is your need coming from? What needs does the other person have? Both people will have to take a hard look, negotiate some agreements about care, and then renegotiate in the future. A potential conversation may begin, "I want to be here for you; it's important to me. Help me understand what I can do for you now that things have changed." I statements are important because they are less threatening than you statements. For instance, instead of saying what the other person must accept, try saying, "I know you want to be on your own, but because of your balance problems I am concerned for you," or whatever is the case. In this situation both people are honest, and each is owning his or her own need.

True agreement is the best solution because it respects the dignity of all parties. Of course, at some point a caregiver may have to act without the consent of the person needing care, if circumstances are truly dangerous, or reasonable conversation is not a possibility. But this should be a last resort.

Caregiving for kids requires a bit of a shift since the goal of parenting is influencing your child's future by helping to build his or her self-esteem, confidence, and independence. Kids reject help for a variety of reasons. Treatment can hurt. It can be uncomfortable or difficult, such as extended therapy or toileting assistance. In the case of teenagers, it can simply be inconvenient given the fact that teens want and need to test limits as they grow toward adult independence.

Whether caring for an adult or a child, some tasks are imperative and can't be negotiated. Taking medicine on the correct schedule must be done without exception. But others are important, but not imperative. This might be the exact timing of a follow-up visit to the doctor, or how long a therapy session actually takes. In circumstances where maintaining or building some degree of independence is important, consistency is the key, even though at times it is easier to do things yourself.

Giving choices can avoid showdowns. For instance, let your care recipient choose between taking his or her medicine now or waiting 15 minutes. Choices provide some level of control, and in lives in which control of many functions has been lost or never achieved, even having seemingly very small choices can make a big difference.

It's okay to complain along with your loved one. Sometimes when you both admit that the current situation is lousy you can diffuse arguments and even build a closer bond.

Some people simply will not be helped, and the harder you try the more rejection and criticism you get. For some people rejecting help may be a coping mechanism, to avoid the violation of everything s/he believes in. At times rejecting outside assistance can even be a way to keep you involved in their lives.

It is important for caregivers to recognize a loved one's motivation because it can help remove feelings of guilt and frustration that may well accompany the rejection of your help or ideas. At some point it is important to accept a loved one's nature and limitations. Sometimes it means understanding that the help you want and need to give may not always be desired or accepted.

Companionship may be much more valuable than actual help at some times. This is especially true in end of life situations when being present can do more than actual hands-on help.

A last piece of advice - you can only do so much and therefore your best is good enough.

Nancy Carson is a freelance writer and frequent contributor to Take Care! She lives in Alexandria, VA.