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I’ve been doing my best to reduce my carbon footprint. The footprint I want to leave in world is not one that slogs through a landfill.

Which makes me wonder:

What footprint would you like to leave behind after your caregiving role ends?

Your footprint could be the calming words a friend told you during a difficult day. Or, an understanding about how relationships worked that kept you calm. Or, a warm memory you have of your care recipient, frail with disease, but still lively with spunk. Or, your footprint may be the book that strengthened, the gadget that provided, the support group that saved.

In ten years, when you look back and behind, what caregiving footprint will you see?

A new member of one of our online support groups recently wrote me with an interesting thought. “I think caregiving deserves its own diagnosis,” she said.

Hmm… So, I asked Donna, who has a M.S. in counseling and cares for her mother, to expand on her idea. My questions and her answers follow.

Caregiving: Do you remember inspiration for the idea of caregiving as a mental health diagnosis?
Donna: I don’t have a specific inspiration for the idea of a diagnosis for caregivers other than my own reaction to too much caregiving and too much grief. My idea of a caregiver diagnosis also comes from my graduate school project which covered the pervasiveness of sexism in our culture and from my work with neglected women. The stress that comes from caregiving causes many physical and mental difficulties; if PMS can be a diagnosis, why not “Caregiver Syndrome”?

The disciplines of neuropsychology and neurophysiology are part of the mind-body healing arts. It requires a Ph.D. to practice and Ph.D. doctors who are practicing usually perform testing services for social security, insurance companies, and the like. Researchers in that field study the physical and societal effects of stress-based symptomology, so it’s already a legitimate science currently in practice. I think they should step up to the plate to highlight the physical and mental fall out from the stress of caregiving. We have a glut of baby boomers on deck to receive caregiving services. If nothing is done to deal with the issue who will be around to care for the millions of soon-to-be elderly and sick? What will we do with them?

Our culture will have to make the jump to hyper-speed with regards to the complex understanding that we are all in this life together. America, and my family reaches back three hundred years, is still stuck in our frontier mentality that requires everyone to either pull a full load of weight, regardless of ability, or be left behind with no support. We are no longer a frontier community, we are now a cosmopolitan community, much like Europe, but we do not want to think like Europeans; we like our standards the way they are. Because our culture demands that doctors or lawyers are consulted for approval before we grant special status to anyone, a diagnosis for caregivers would fulfill that social requirement and lead to fixes we can’t yet imagine.

Caregiving: How would having their own a diagnosis help family caregivers? Is there a downside?
Donna: The societal structures would change. Medical and psych facilities would be forced to look at the minutia of the issue to decide the diagnosis. Looking at the minutiae would bring the issue into the public conversation.

If the symptomology were correctly recognized, it would be obvious that a caregiver cannot work at a job and caregive full-time, too. Even if a caregiver is not also working, a full understanding would bring to light just how disabling the process of caring for a sick or elderly family member becomes over time.

Statistically, caregivers die sooner than the receiver at a higher rate than in the general population. If the syndrome were accurately recognized, people could get state disability which would give them a year of paid time off, no guarantee of a job after a year, but that is quite a long time of paid leave to be used as the caregiver sees fit.

If caregiving syndrome were a recognized disorder then caregivers could get family medical leave for themselves, possibly state disability, possibly social security disability.* If we are going to require that people sacrifice themselves for a sick or elderly family member, we cannot simply leave them to suffer alone and unsupported. My idea of a caregiver diagnosis would not solve the entire problem, but it might offer some social structures that will help over time. The only true fix is for our culture to take our collective head out of our collective rear end and recognize that human frailty on the part of the caregiver is not a moral failing. Recognizing the disabling stress-symptoms caused by caregiving might result in the building of care centers that are homelike, well-run, clean, serviced by educated professionals and not minimum wage workers, and held to very high standards. A healthy society should not neglect families to the point that they must turn their entire lives over to the process of caring for the ill and the elderly, unless they want to.

There are sound reasons behind the adage, “A lawyer who defends himself has a fool for a client.” And, in medicine, a surgeon is not allowed to perform surgery on their family members. I think the reasons behind those concepts are obvious. Following this same logic, it is unreasonable to expect any person to gulp down their grief, fear, anger, past abuses, etc, and sacrifice their own well-being to the needs of a family member over long periods of time. It simply isn’t good for either party. The only thing standing in the way of a better outcome for care givers is will. I don’t see a down-side.

Caregiving: What symptoms would be present in order for a diagnosis to be given?

Donna: I think that a diagnosis tree could be determined based on presenting symptoms of malaise, depression or depressed affect, immune dysfunction, hair loss, high-blood pressure that was not present before caregiving began, weight gain that cannot be linked to other life style changes, chronic headache, chronic insomnia, chronic nausea, anger, rage, feelings of wanting to hurt one’s self or the care receiver, suicidal ideation, asignificant shift in personality. If a caregiver experienced at least five of the aforementioned health issues and is currently taking care of a sick or elderly family member, then that person could be reasonably said to be suffering from caregiver syndrome and could be at high risk for early death.

Caregiving: Based on these symptoms, would you be diagnosed? Why or why not?
Donna: Based on the above, I would have been diagnosed over a year ago.

What do you think? Do you agree?

*An individual can use the Family Medical Leave Act to care for an immediate family member (spouse, child, or parent) with a serious health condition. In addition, the U.S. Equal Employment Opportunity Commission has issued best practices for employers with caregiving employees and enforcement guidelines against unfair treatment of workers with caregiving responsibilities.

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I’m reminded of conversation many years ago with Mirca Liberti, co-founder of Children of Aging Parents, Levittown, Pa.. During our discussion, Mirca made, what I thought to be, a startling statement: Our aging relatives will never be happy.

I have to admit, I was taken back by that statement. But then she went on to explain.

Our aging relatives, she said, have known tremendous losses. They have watched many friends and family members die. They have experienced incredible physical losses, both in part to the aging process and as a result of illness or disease. They must now rely on others to perform duties and chores they had once done: grocery shopping, driving, cooking. We can only guess at the pain of these losses.

Sometimes, family caregivers can be wonderful targets for our care recipients. Care recipients need to express their own frustration and often take it out on the very person who helps them. Help from others is a constant reminder of all that they have lost and all that they will never regain.

More importantly, perhaps what makes you a successful caregiver–finding a good nursing home, or taking a regular vacation–will make your care recipient really unhappy. They took care of you–why can’t you take care of them? Why do they have to go to a nursing home? Or, they can’t take a vacation–why should you? They can’t have fun–why should you?

A care recipient’s unhappiness, depression and anger can dampen your caregiving successes. As you try to maintain a positive attitude, keep this in mind: As a caregiver for an aging relative, you are responsible for ensuring your care recipient is safe and well-cared for. You are also responsible for your own happiness. You can not make any one else happy. It’s impossible. Trying to make someone else happy will only make you miserable.

You, after all, doing the best you can. And, that’s why you are successful.

What do you think? Was Mirca correct? And, how do you view your success as a family caregiver?

Arrive everywhere loved.
–Mariah, wife of Ron Gladis, one of our 2009 Caregiver of the Year award winners

You probably have heard the expression: “You have to feel it to heal it.”

That, often, is easier said than done.

To feel our shame, we must feel safe. We might find that safety in a support group, in our journal or with a therapist or counselor (or all three). Whatever venues we pick, it’s important we choose to make the decision to heal. “In feeling it we give ourselves a fresh start to pull out our internal adult place,” says Dr. J. David Forbes, ABIHM, President-Elect, American Holistic Medical Association and founder/director, Nashville Integrated Medicine.

There’s an anger and grief attached to shame, which makes sense as I think about my father’s anger. Had he healed his shame, he would have tamed his rage. That old pain gets in our way of living a full life.

“Shame will only hurt you,” adds Dr. Eric Shapira, a clinical gerontologist. “Why pay rent to this stuff?”

We may believe that our parents, or our care recipients, hold the key to our healing. Didn’t they get us to this place? Often, though, that window of time has passed, Dr. Forbes says. We can grieve for the loss that our parents, or care recipients, can’t be an active part of our healing, that the time for them to fill our healing need has passed.

Instead, we can heal the kid inside us. “We are the parent for the kid inside us,” Dr. Forbes says.

We can get what we need from our own healing process, rather than holding out waiting for our care recipient’s approval or apology. The possibility exists that the approval or apology may come, but “the fact you want to feel better is your driving force,” says Anna Stookey, a psychotherapist specializing in health issues.

Everything is about doing something for ourselves, Dr. Forbes says, even as we may say we do so much for others. Sometimes the why behind doing for others actually serves something within ourselves. We may do so much for others, for instance, to avoid the conflict we imagine will develop if we say “no” to any and all requests for our time. By healing shame, we learn how to make better choices for ourselves, such as setting boundaries or making decisions based on our value systems, rather than someone else’s.

Laura B. Morse, a licensed therapist in private practice who works with African-Americans, often finds the biggest hurdle to healing is getting help. “Many have a strong allegiance to their parents and won’t talk about it. Out of loyalty, they feel they can’t disparage their parents. They also may say, ‘We survived slavery, we don’t need therapy.’”

Because healing the shame can mean walking into unchartered waters, a therapist or counselor can provide the guidance needed to avoid drowning. And, because the impact of shame showed up over time, losing the shame will take time, too. A therapist can help you tread through the waters of shame, help you keep your head above water, and help you keep focused on your landing place (The Land of Whole).

As you work through your healing process, Morse recommends detaching with love. You stay engaged in your caregiving role, but you detach to better care for both of you. When you detach, you can say, “This isn’t about me” which allows you to interact with your care recipient without playing the shame game. When you don’t engage, you provide a healthy environment for both of you.

A helpful question to ask yourself, Morse says, is: How has loving this person benefited you as well as hurt you? The question helps you find a perspective that allows you the room to feel the pain, while respecting the positives of the relationship. (We’ve included more tools you can use, below.)

Taking a physical break from caregiving also provides a much-needed objective viewpoint. “You will break the bond and you will feel better,” Stookey says.

Compassion, which leads to forgiveness, frees the shame. When we understand that our care recipients also act from their own experiences of shame, we can view their actions more objectively. “We can see that all of us respond from something that’s not healthy,” she says. “Our parents were not acting out of conscious malice. They were unconscious.”

You can see shame in a greater context, Stookey says. “We can observe what happened with compassion, rather than reaction.”

Stookey worked with a client who cared for his mother. When his mother became incontinent, the son said he wanted to scream at his mother: “I’m going to rub your face in this!”

His mother’s incontinence brought back memories of difficult years during his childhood. With the eyes of an adult and the help of a therapist, the son was able to review his childhood and see a scared young mother with seven children, three of whom were bed-wetters. The perspective helped him manage his response to his mother’s incontinence.

Recognize that past experiences with your care recipient may make some caregiving duties difficult. For instance, your younger siblings may have had a very different experience with your parents and can better manage the more intimate aspects of caregiving. Delegating responsibilities that cause triggers for you, but not for other family members or health care professionals, helps you stay emotionally healthy in your role.

As a family caregiver, you have tremendous resilience, Morse says. “Take some of that, turn it inward to use for your own boundaries and self-care.”

“Once we’re full, it spills out to others,” Dr. Forbes says.

Wouldn’t that be awesome? To be so full we can’t help but overflow. And, just think: We can do that for ourselves when we live our lives from today, rather than yesterday.

Tools:

Dr. Elizabeth Lombardo’s IDEA
Karol Ward’s Trigger Sheet

Part I: The Genesis of Shame
Part II: When Shames Shows Up in Caregiving

We took our discussion about shame live on Your Caregiving Journey talk show. Listen to our interview with Anna Stookey, who shares the power of healing from shame.

When I think of how shame can come to a caregiving role, I think of Jeannette, a woman I helped care for about 10 years ago. Because I haven’t had the personal experience of caregiving, I’ve taken on hired caregiving job as a way to better understand the role. (It’s not the same, but it has common elements.) Jeannette was the mother of my sister’s friends’ husband. She lived with her husband, Ted, in a large home in an affluent suburban home.

She had dementia, they said. I often thought, though, that her diagnosis was closer to acute depression. And, now, I believe her underlying condition was shame about her depression.

Ted didn’t understand Jeannette—at all. He often grew impatient with her. She became a wisp of a woman, a haunted body floating in her home. She barely spoke, rarely smiled. (Although she smiled as I dusted and vacuumed—she loved to watch me clean.) Even worse, she barely had a bowel movement. Ted hated helping her in the bathroom; he yelled, she kept it inside. It was a disaster waiting to happen.

As a program manager for New Jersey’s Statewide Respite Care Program, I helped Eleanor, who cared for her husband who had Alzheimer’s. Eleanor, an obviously doting and caring wife under normal circumstances, would become frustrated when her husband misplaced his teeth, a behavior resulting from the disease process. She would become so angry with her husband that she would slap his face and then scold him as if he were a child.

Lori Palermo, who cared for her father until his death, spoke about her caregiving regret on an episode of Your Caregiving Journey. When her father was diagnosed with COPD, she didn’t understand how painful and comfortable his condition was. Only after his death, and after researching the disease process, did Lori better understand what her father felt. During his last months, his family would ask how he was feeling. He would say, “Fine.” Did shame (rather than pride) keep him fully disclosing his pain to his family?

Shame, the stuff we stuck in the closet, can get triggered when we see our care recipients in a vulnerable position. “Shame is a state of mind that gets triggered,” says Karol Ward, licensed psychotherapist and author of “Find Your Inner Voice: Using Instinct and Intuition Through the Body-Mind Connection.” And, worse, we often carry on the harsh, humiliating voice of our childhood caregiver, Ward says.

For Ted, who cared for his wife, Jeannette, perhaps the uncertainty of his role, and the worry about looking inept, sprouted from his childhood shame. When he derided Jeannette about her bathroom habits, was he echoing a voice from his past? For Eleanor, her misunderstanding of the disease led her to believe she must be an authoritarian figure to her husband. Was she re-enacting her experiences with a childhood disciplining figure?

Shame changes us. Ward offers the following warning signs that shame may be in control:
1. Who we are in our normal adult life disappears.
2. We have a sense of low energy, we feel tension in our body.
3. We feel anxious and tentative.
4. We have irritability, sadness, tearfulness.

In order words: “When we try to function, we become dysfunctional,” says Dr. Eric Shapira, a clinical gerontologist.

“Family caregivers have a concept of what caregiving should look like,” says Dr. Anna Stookey, a psychotherapist specializing in health issues. “But, the truth is, it’s really difficult. And, often there isn’t support for those feelings that get triggered.”

If a spouse who was shamed is now the care recipient, the shaming may continue. “It’s not uncommon for an abuser to be an abusive receiver of care,” Stookey says. “The abuser may say to the family caregiver, ‘You’re not doing that right.’”

If we go to the arena of past shame, then we begin to regress. Time spent with our care recipients may feel like time spent traveling backward, as we reverse from an adult of 45 to a child of five. “You can’t care from the place of a five-year-old,” Dr. J. David Forbes, ABIHM, President-Elect, American Holistic Medical Association and founder/director, Nashville Integrated Medicine.

When we become entrenched in our place of shame, we may feel unable to take action, says Ward. We may question our decisions that we may normally make without hesitation. “We become our inner critic,” Ward explains. “We pick up and activate the voice (of our shamer).”

When we take on that shaming voice, we may later feel guilt for not controlling that shaming voice. Unfortunately, the guilt only adds fuel to the fire of shame, now forming a vicious circle. We all can relate to our embarrassed musings after episodes in which we behaved childishly. Why, we wondered, did we react that way?

A family caregiver at a support group had this realization, Stookey says:  Sometimes, caregiving is harder for the family caregiver than for the care recipient.

And, it’s really hard when we provide care from the place we were as children, still huddled hurt in a corner.

Resources
Shame: Secret Ally of Illness

Part I: The Genesis of Shame
Part III: Taking on Shame: How Healing Wholes Us

We took our discussion about shame live on Your Caregiving Journey talk show. Listen to our interview with Karol Ward about the intermingling of lives and shame in a caregiving experience on the player, below.

(Editor’s Note: This is the first part of a three-part series on shame and its role in your caregiving experience. In our first part, we look at the origins of shame.)

For you, it may have started with a comment or remark or a look. “Typically children are shamed when they wet their bed, get a bad grade on a test, are picked last for a team, or have an awkward physical appearance,” says Dr. Carole Lieberman, a psychiatrist on the Clinical Faculty of UCLA.

For mankind, it seemed to have started with Eve. “Shame goes back to Eve, who covered her body and felt shame about her sexuality,” says Dr. Doris Jeanette, a licensed psychologist, author of “Opening the Heart” and director, Center for New Psychology.

For me, shame probably started with my father, who shared his shame through an uncontrollable, and unpredictable, anger. My earliest memory of feeling that shame—that awful reaction that made me feel completely disconnected from my family—was pouring too much sugar on my cereal when I was about five or six. Oh, how I loved sugar on those drap, dreary and dull Rice Krispies! Oh, how that really rubbed my father the wrong way.

Shame. It’s powerful because it creates powerlessness. “It has aspects of humiliation with it. It builds a negative core belief about self,” says Karol Ward, licensed psychotherapist and author of “Find Your Inner Voice: Using Instinct and Intuition Through the Body-Mind Connection.”

My curiously about shame started this past March when I told my life and business coach: “I feel a lot of shame about a decision and do not want to share my decision with my friends.”

Which made me wonder: Where does shame come from? Is it learned? Is it one of our emotions? And, does shame get passed on? Meaning, do we inherit shame, i.e., did I take on shame through my father?

Shame is a learned response to our selves; with shame, we feel that we are broken, wrong, unwelcome.

Unhealed shame passes on to our children, says Dr. J. David Forbes, ABIHM, President-Elect, American Holistic Medical Association and founder/director, Nashville Integrated Medicine. “The core feelings of unworthiness translates to our behavior.”

The shame inside us can be quite frightening to feel because the feeling of shame—that there is something wrong with us—lies within our most vulnerable portion of our being. “If we don’t feel safe to feel that vulnerability,” Forbes says, “then we move to behaviors that will put up walls, which actually just bring us more pain.”

My father’s shame—his father left his mother when he was seven—was so deep that I thought my grandfather had died when my father was a child. We never spoke about my grandfather, which seemed to just scream a mystery to me.

“What happened to your father?” I blurted during one family meal when I was 12. “He died,” my father answered. My older sister, who always discovered the family secrets, set me straight when I was about 13. My father’s Virginian cousin, who hosted me for a Thanksgiving meal when I later lived on my own on the East Coast, added the flavor to the story: My grandfather had left while my grandmother, father and uncle attended a family event. They returned to an empty home and a note.

“We learn shame from someone else who puts their emotional repression on us,” Ward explains. “Their beliefs become our own.”

An unspoken and heart-breaking message behind shame is that your feelings are bad. “You learn to distrust your spontaneity,” Ward says. “You feel you can’t say anything right.”

Dr. Elizabeth Lombardo, psychologist, physical therapist and author of the upcoming book, “A Happy You: Your Ultimate Prescription For Happiness,” sees the effect of shame in her clients she treats for their chronic pain. Lombardo describes the impact of keeping in our shame like trying to stuff our closet. We keep putting stuff in a closet, filling it past its limit, so much so we have to press our body against the closet door to close it.

When we are children, our emotional closet is big—it can hold all the emotions we don’t understand or we are afraid to feel. As we grow older, our closet becomes fuller and fuller until stuffed beyond its capacity. Those emotions, often shame, must go somewhere. “We use energy to keep that stuff in,” Lombardo explains, “and that causes compromises in our immune system.”

And, sometimes we stuff our closets with thoughts and impressions whose interpretations do not serve us, especially when we are children. “Children are ego-centric,” Lombardo says, “and take on responsibility. They interpret a situation as being their responsibility and then they stuff it.”

How we think affects what we do and how we feel. If we interpret a situation as being our fault, we may decide we are not good enough or smart enough or attractive enough. These interpretations become our prescription glasses, Lombardo says. “These are the lenses you see life through. If you believe you are a bad person, you will see evidence that proves that.”

There’s an aspect to shame that involves self-recrimination, adds Anna Stookey, a psychotherapist specializing in health issues. We feel a lack of acceptable, so we become unacceptable to ourselves.

And, shame is shame rather than guilt because it has an aspect that involves self-recrimination, Stookey explains. When my father yelled about too much sugar on those Rice Krispies, my thoughts were: “I am bad because I don’t know how to put on the right amount of sugar.” And, even worse: “I don’t belong here, in this family.”

And, that’s the baloney of shame.

Part II: When Shame Shows Up In Caregiving
Part III: Taking on Shame: How Healing Wholes Us

We took our discussion about shame live on Your Caregiving Journey talk show. Dr. David Forbes helped us better understand the origins of shame; listen to our discussion on the player below.