Caregiving – Your Options – Excerpt from the Book “Partners in Healing: Simple Ways to Offer Support

Caregiving – Your Options – Excerpt from the Book “Partners in Healing: Simple Ways to Offer Support, Comfort, And Care to a Loved One Facing Illness” The Paradox of Caring Your heart, like all other muscles and tissues in your body, has to be supplied with a continuous flow of blood, oxygen, and nutrients to stay alive. To accomplish this, your heart pumps blood to itself first—before sending it to any other part of your body—regardless of what’s going on anywhere else. It nourishes itself through your coronary arteries, which branch off from your aorta immediately after it leaves your left ventricle. With every beat, your coronary arteries redirect blood back into your heart, wrapping themselves all around its surface like the branches of a tree and penetrating deep into your heart’s muscle tissue to reach every cell.

By design, your heart is literally its own first priority. It has been since its very first beat and it will continue to be until its last. The paradox of caring for another is that you have to care for yourself first.

The Shadow Side of Caring The metaphor of the heart gets at the crux of the issues of caregiver burden and burnout.

Depending on the extent to which you affirm and care for your own needs, caregiving can be a blessed experience or an ordeal. It can bring personal satisfaction and deepening intimacy, or depletion and erosion of intimacy.

Being the partner of someone with illness can bring challenges for which you might not be fully prepared—challenges to your knowledge about how to care, to your time and energy available for providing it, and to your emotional resiliency if your loved one’s illness is long-term. Recent years have seen a great deal of attention paid to the health and adjustment of caregivers. The most extreme challenges are for people living with a partner with Alzheimer’s disease, advanced cancers, or other conditions demanding intensive daily attention or vigilance over an extended time. But there are many more conditions that may appear to be less obviously demanding, such as fibromyalgia, chronic fatigue syndrome, rheumatoid arthritis, multiple sclerosis, or others, which nevertheless can impact you in major ways.

Without adequate self-care, preparation, or support, the burden of adjustment for care partners can be considerable. One of the surprising findings of research is that their own distress may actually equal or even exceed that of the patient. How can this be explained?

Consider that one of the greatest sources of stress any person can experience is a lack of control—a sense of helplessness—in a difficult situation. Ironically, a seriously ill person may at least derive a sense of control from having concrete and practical steps to take, such as taking daily medication, having surgery, or other forms of medical intervention. All of this helps to

channel one’s efforts to get better and alleviate a sense of helplessness. The partner, on the other hand, may lack a comparable sense of concrete and practical steps into which to channel his or her energy. Partners who feel that they can only passively witness their loved one’s suffering, and that there’s nothing they can do to help reduce it or contribute to their loved one’s healing, are at the greatest risk of emotional distress.

Studies have found that partner distress manifests as mood disturbance (depression, tension), poorer health, and even lower immune function. A particularly revealing recent study at the University of Canada looked at the long-term health of the partners of cancer survivors who had received stem-cell transplants.

As you might expect, partners and survivors alike had more depressive symptoms, sleep problems, and sexual problems than the normal couples. Beyond that, however, the partners also had more fatigue and cognitive problems than the controls, and their odds of depression were nearly three and a half times higher Further, partners who were depressed were less likely than depressed survivors to receive mental health treatment, They also had less social support and lower ratings of marital satisfaction, less spiritual well-being, and more loneliness than either the survivors or the control couples. The researchers concluded that partners of stem-cell transplant patients experience similar emotional distress and greater long-term social costs than do the survivors themselves.

The point I want to emphasize here is to urge you to recognize the genuine vulnerabilities of being a caregiver and to honestly take stock of your true needs for support and self-care. As we will see below, attending to your own adjustment and well-being is a real and necessary contribution to the quality of your relationship as well as your loved one’s healing.

How Your Well-Being Matters What are the consequences of your own well-being for your partner? This is a very important question to consider, and the answer just might give you further incentive to seriously attend to your own needs.

Studies have demonstrated that there is a feedback loop between the two of you: caregiver distress can contribute to distress in the patient, which, in turn, may have adverse effects on the patient’s well-being, adding further to the caregiver’s stress. In her research, women whose partners were coping better coped better themselves, while women whose partners were having a harder time showed signs of poorer adjustment to their disease. She also found that each person’s level of distress seemed to predict the other’s.

Aside from the partner’s impact on the patient’s psychological adjustment, another theme in the research is that in life-threatening illnesses, partner adjustment may influence the patient’s

actual survival. For example, when University of Arizona researchers looked at what impact the care partner’s sense of confidence and self-efficacy might have on his or her spouse’s surviving congestive heart failure, they found that it trumped that of the patient. In other words, while confidence in both spouses contributed to survival, the partner’s confidence actually had stronger impact. Patients lived longer if their partner had a stronger sense of self-efficacy.

How could partner self-efficacy translate into better survival for the patient? In their analysis of these findings, the researchers surmised that partner self-efficacy was a signal of marital quality. In the introduction, I discussed the idea of intimate relationship in general having a “protective” effect that translates into better odds of patient survival. Indeed, such an effect is one of the great assets of a relationship, but now it appears to be modulated to some extent by the quality of the relationship. Since you and your partner are part of one system, if either of you runs into difficulties adjusting to the realities of the illness, those difficulties may affect the other as well as the overall quality of your relationship.

One of the ways that adjustment difficulties weaken marital quality is through conflict, and a large study has affirmed a connection between marital conflict and patient well-being. The Quebec Health Survey studied 7,547 couples living with one or more chronic health problems Patients who reported they had conflict with their partner had a more negative perception of their own mental health and reported higher psychological distress. This would seem to reinforce the idea of a loop between adjustment in either partner and patient distress, and as we know greater patient distress contributes to poorer medical outcomes.

Thus, beyond the general protective effects of being in a relationship, there is a continuum of relationship quality along which you as a couple can find yourselves, and where you are on this may even influence survival in life-threatening conditions. This principle was affirmed in a second study by the same team at the University of Arizona who conducted the earlier study on congestive heart failure. When they followed 189 couples for eight years, marital quality proved to be a significant predictor of patient mortality—to a larger extent than even individual patient factors such as psychological distress, hostility, neuroticism, self-efficacy,optimism, and emotional support.

My point in highlighting these studies is that as a care partner, your self-care clearly has consequences that extend beyond your own inner sense of well-being. Self-care is your path to resiliency, self-efficacy, and emotional well-being, all of which will affect your partner and the quality of the relationship between you.

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