Stan Goldberg’s Lessons for the Living won the London Book Festival’s Grand Prize in 2009 and was featured in Best Buddhist Writing of 2010. A private therapist, clinical researcher, and former San Francisco State University professor, he lives in San Francisco. He was named Hospice Volunteer Association’s Volunteer of the Year 2009 and his website is www.StanGoldbergWriter.com. Here he talks about his book Leaning Into Sharp Points.
What’s involved in caregiving?
Family caregiving is probably one of the most difficult activities human beings can engage in. The relationship is one in which someone you love says "I can’t do some things by myself anymore and I need your help to survive." In many ways it parallels the dependency of an infant on a parent, but is significantly more complex. Instead of the infant’s unquestioning acceptance of dependency, you have an adult who once was independent and understands that she probably will always be reliant on another person until she dies. To be a caregiver of someone who may depend upon you for their continued existence or relative comfort until they die is an incredible responsibility.
Is there anything I can do in my caregiving that will ease my grief after my loved one dies?
Grief comes in two parts. One is the gut-wrenching sadness we feel when the emotions engendered in us by a loved one are absent. It not only happens when a loved one dies, but often occurs during caregiving when cherished activities or interactions no longer occur. This part of grief is the price we pay for living a full and meaningful life. But the second part of grief — regrets — is something we can avoid. I often hear from caregivers after a loved one has died, "I wish I had said (or done) . . ." It’s an emptiness that is difficult to fill because it’s too late. It’s also something that can be easily avoided by not waiting. Saying and doing things that ease a loved one’s acceptance of a chronic illness or ease their death minimize caregiver regrets. You did that you could to serve. Minimizing regrets — from the simplicity of sitting rather than standing when talking to a loved one, to giving permission to die — reduces the severity and duration of grief.
How do I deal with those feelings of resentment?
Almost everyone — if they are honest with themselves — harbors some resentment for the person they are caring for. If there isn’t any resentment, my guess is that the involvement with the person needing care is minimal or superficial. Caring for another person involves sacrifice, ranging from giving up going to a cherished event, to a life lost that once was fulfilling. Our DNA is not programmed for the 24/7 care of another person. Even Mother Teresa, late in her life, questioned her caregiving abilities and commitment. The more we push away the feelings of resentment, the less effective we become in helping our loved one. Whether our involvement is voluntary or obligatory, hidden resentment erodes our effectiveness as caregivers. Pulling these resentments closer to us — leaning into these sharp points — and admitting they exist is the first step in addressing them and finding ways of minimizing the effects they have on us and the loved ones we serve.
How do I begin the conversation of how much my loved one has meant and how much he or she will be missed?
We often wait to tell someone how important they have been to us. Reasons range from embarrassment to believing expressing thanks to someone signals that their death is imminent. Unfortunately, waiting to express how important a person have been and still is, can be disastrous. Life for someone with a chronic or terminal illness is fragile. It’s never too early to express thanks for what a loved one has given you. Ideally, it should be done on a daily basis long before a loved one becomes ill. But with too many people, it’s often assumed that their loved knows how much they are appreciated, even if phrases such as "I love you," or "Thank you for all you have done," are never said. Possibly, but hearing the words, especially when someone realizes they are on the path to dying is very important. It says to them, "Someone thinks I’ve done good and that my life matters." There are many things that can ease the burden of a chronic illness and the inevitability of a terminal illness. Few are as important as knowing you made a difference in someone’s life.
How do I ask for forgiveness for unskillful acts and words?
The simplest answer is, you just do. But understanding why it’s so hard to do that may make it easier to do. Few people like admitting they screwed up. We don’t like to express it to those we may have hurt, and often we even try to hide it from ourselves. Most people want to appear competent, caring, and knowledgeable. There often is a vested interest or agenda in presenting an image that we want others to believe. Over many years, we may have developed a list of defensive mechanisms that protect us from people who are quick to criticize and reluctant to praise. Not asking for forgiveness from them might make sense given the circumstances. But things are very different with someone with a chronic or terminal illness. What I’ve seen is that as someone approaches their own death, most or all of their hidden agendas disappear and what’s left is an honesty and appreciation of others that is mind-boggling. Asking them to forgive your unskillful act or words is not viewed as an opening to attack you. Rather, it almost always is accepted with gratitude and understanding. You’ll find it a healing experience both for yourself and your loved one.
How do I balance my loved one’s needs with my own?
Often people think that balance means I get a little of what I want and so do you. I guess it can work, but both parties may focus on what was lost rather than what was retained. I think a better approach is to look at each situation and think about how both the caregiver and the one being cared for can benefit. For example, after a stressful morning of caregiving a person may need an hour to nap. They can try to take care of their need by saying one of two things. The first is "I’m exhausted for changing your bed linens three times this morning. I need to sleep or I’ll fall down." Although it’s an honest and legitimate feeling, it’s expressed in a way that says to a loved one, "My need is greater than yours." But if it’s expressed a little differently the needs of the caregiver and the loved can be met. For example, "I’m exhausted and I need to sleep or I won’t be able to care for you well this afternoon. Is there anything I can do for you before I nap?" Slightly different words and conveyed in a way that addresses the needs of the caregiver and the one she’s caring for.
How can I accept abuse from someone I’ve devoted my life to?
It’s not unusual for a person who has given up her life for the care of a loved one to be the recipient of undeserved abuse for what a loved believes is inadequate care. For some caregivers, the criticism says to them, "I’ve failed at providing care." It’s been my experience that caregivers do the best they can given the circumstances of these very difficult situations and there is no reason to feel guilt. Other caregivers look at abuse as a sign of ingratitude for all they have done. Regardless of why the feelings occur, many caregivers don’t realize that the world they live in is very different from that of someone who knows he will never get better or will soon die. People with chronic and terminal illnesses look at everything through the eyes of the illness. It’s not your loved one who is criticizing you, but rather the illness that is robbing them of that caring part of their soul you’ve come to be behind their words and actions.
How do I give permission to die to someone who is part of my life?
Giving permission for a loved one to die may be the hardest thing you’ll ever do and also the greatest expression of your love. As someone approaches active dying, we can often see them struggle to not leave. Their determination to remain alive may be related to a reluctance to die because of their own needs. However, it’s been my experience that many try to stay because of their belief that family and friends need for them to stay. They painfully struggle to remain alive knowing the inevitability of their condition. When family and friends convey to them that they are ready to accept a loved one’s death, the needless and painful struggle mercifully ends.
Why isn’t spirituality and religion enough to give my loved one a peaceful transition?
As a general rule, I’ve witnessed easier deaths for people whose lives have been guided by spirituality and/or religion than those who found no place for it in their lives. But for some, even the presence of spirituality or religion wasn’t enough to ease their deaths. Although "forgiveness" from a spiritual being may be enough to sooth the guilt of unskillful past acts for some, for many others, it isn’t a substitute for receiving forgiveness from those they hurt.
How can I accept my loved one’s changing personality?
Life in the best of times is fraught with instability. Wonderful jobs change while remaining positive, grateful children may continue to be grateful although the form of their gratitude may change with maturity. Change is easier to accept when the boundaries are still within what we want to happen. Chronic and terminal illnesses stand our understanding of what life should be on its head. The illness a loved one experiences is not confined to just his physical being. Psychologically, he is constantly adjusting to becoming someone different. Someone, he would prefer not to be. The effects of a chronic or terminal illness are global. A person’s identity changes as those things he cherished are stripped away. Just as there are few options whether or not to have the illness, there are few options when it comes to how the illness shapes personality. The first step in accepting a loved one’s changing personality is understanding that the changes are inevitable and not something he is choosing to become.
How do I deal with the fact that I may be a compassionate caregiver and my loved one will still die?
We live in a society that is consumed with "fixing" what’s broken or replacing what can’t be fixed with a new and improved model. But death is one of those things that can’t be fixed nor replaced. For many caregivers and physicians, death is viewed as the enemy rather than a part of living. But if we accept death, just as we accept birth, it becomes something that’s just another inevitable part of life, just as is childhood, adolescence, middle age and senior citizenship. Once we view it as part of a natural progression of living, being a compassionate caregiver means doing what is possible to ease a loved one’s transitions. There is no fixing of what can’t be fixed. Rather, caregiving becomes an exercise in serving.
How is it possible not to lose your identity and mind with long-term caregiving?
Since one’s identity is partially determined by your role in life and what you do, your identity will probably change if you are a long-term caregiver. You may not have an option for retaining it. But you can choose what it will morph into by understanding the emotions or feelings that have been lost when you assume the role of a caregiver. For example, some people give up very rewarding careers to care for a loved one. For financial or other reasons, they may not have a choice whether or not to continue in their job. But they can try to identify what it was about that job that was rewarding and look for other ways of satisfying those needs. The person who managed people when she headed a department relished her ability to organize the efforts of others toward achieving a goal. When she began caring for her husband with Alzheimer’s, she resigned. Without her supervisor role, her identity changed. Understanding what she lost allowed her to look for other activities she could do from home that tried to satisfy her "organization" needs. She met them by volunteering to manage outreach efforts from her home through computing. Did it replace the feelings she had when working? No. But it was significantly better than dwelling on what she lost.
Interview provided by New World Library, publishers of Leaning Into Sharp Points.