Advances in science and medicine have increased the average American’s lifespan from 54 years in 1920 to almost 80 years today. This, combined with the aging of the baby boomer generation, has made caregiving and support for those battling chronic illnesses and conditions an issue far more common than in past generations. Psychologist and psychotherapist Tamara McClintock Greenberg addresses today’s caregivers in her new book, When Someone You Love Has a Chronic Illness: Hope and Help for Those Providing Support, which offers explanations for the complicated feelings and behaviors that caregivers encounter and offers pragmatic strategies for caregivers as they assist their loved ones in times of need.
Why this book now?
TMG: Medical technology allows physicians to diagnose and treat illnesses that have previously gone undetected. This is great news, but we’re faced with an uncertainty about longevity that is unprecedented. How long will we live? Are we going to remain healthy? Will we need help at some point? How much money do we need to prepare for a longer life? These are questions we will all have to address.
Many more people are living today with chronic illnesses and conditions that would have once proven fatal. What has this meant for the friends and family members charged with helping their loved ones?
TMG: One positive aspect is that it gives us a chance to think about the meaning of relationships. When someone we love becomes ill, it’s a great opportunity to let people know how much we care. On the other hand, it can be very scary to think about and cope with the reality that loved ones can develop disease. Family members and friends, particularly formal caretakers, can be overwhelmed and forget to take care of themselves.
You devote an entire chapter to the idea of how to discuss a chronic illness. What do you say (or not say) to a loved one with a chronic illness?
TMG: Talk may be cheap, but when it comes to illness there can be a big price tag related to errors in communication! What we say and how we say things does matter. It’s not easy, however, to know what to say. We can get so caught up in our own anxiety that it’s easy to blurt out things that may not be helpful. My main suggestion is to be present and try not to say something that can be construed as offensive. Things that fall into the not-helpful category are comments like, “Well, everything happens for a reason” or, “I’m sure you’ll be better off because of this.” It’s often more helpful to let the person who’s sick guide the conversation. If he or she is talking about how difficult their situation is, validate that illness is hard and scary. It’s also OK to not know what to say. In this case, we can say, “I want to say something helpful, but I just can’t come up with the words.” Being genuine and sincere can be very soothing.
What do we need to know about dealing with doctors?
TMG: Many doctors are extremely empathic; however, there are limits in terms of how sympathetic they can be. This is due to the competing demands many physicians face these days. And let’s face it, navigating the medical system is pretty taxing. Visits with doctors should be treated like a business meeting. Patients should try to have advocates at appointments and should have an agenda. Think about what should be accomplished in the meeting and write these objectives down. Also, plan questions in advance and, if possible, see if you can get the questions to the doctor ahead of time. The role of being a patient is a vulnerable one, and I always encourage people to take control in whatever way possible (through organizing questions and goals, etc.). This minimizes anxiety and also encourages people to think about what they need from physicians.
You cite denial as a critical issue to address. Why?
TMG: Denial is extremely common and understandable. However, denial can jeopardize relationships. People who are sick cope better when they know people care and are supportive. People who witness illness can feel helpless and scared as well. It’s important to show up emotionally, in whatever way possible. Paradoxically, this can decrease the sense of helplessness that we feel.
What are the common mistakes caregivers make?
TMG: The biggest mistake I’ve seen is when people “care too much.” By this I mean neglecting one’s own needs. Those of us who care for others are simply not as effective if we don’t take care of ourselves or we let guilt get in the way of self-care. When my mother was dying, a family member offered to take over part of my “shift.” I initially wondered if it would be OK if I were to take a few hours off, but then I reminded myself that I would be more present if I spent some time away. I only left for five hours, but it turned out to be a very healing afternoon. I had been trying to get a new mobile phone but hadn’t had time to do so where I live. I not only bought my new phone but the person who sold it to me had recently been in a similar situation with his mother who was dying. I serendipitously had an amazing conversation with someone who knew exactly what I was going through! I returned home feeling rejuvenated and supported. I was more present with my mother and my family.
What are your thoughts on a caregiver helping a loved one deal with pain?
TMG: Pain is a very complicated issue, and I genuinely feel that those of us who are not in pain cannot ever really understand what people with pain go through. It’s a common misperception that medications cure or take away pain. Medications dull pain, but the pain sufferer still has to cope with discomfort. Caregivers can help people in pain by encouraging them to be as independent as possible. For example, it can be tempting to offer to do something for someone who is in pain. However, it’s often better to see if the person in pain can complete certain tasks for him or herself. Let them ask if they need help and try not to assume that they’re totally dependent.
Avoidance is a common issue. Why do people so often avoid loved ones who are ill?
TMG: We avoid people who are ill because illness makes most of us anxious. This is completely normal. However, avoidance cheats us out of opportunities to express our concern for someone we love. We can conquer avoidance by confronting our own anxiety. We can ask ourselves what is driving our anxiety and realize that when we avoid people, we may be missing out on meaningful connections.
Who should read this book?
TMG: Anyone who has been impacted by illness should read the book. Uncertainty about longevity is the new normal in our time. Preserving and enhancing relationships is a key part of emotional and physical health. Coping effectively with illness is important for people who are ill and those who surround them.