Thursday, February 14, 2008

Compassion for All Concerned

The Webster dictionary defines compassion as “sympathetic consciousness of others’ distress together with a desire to alleviate it.” Compassion is at the heart of what we do as caregivers but it is also the area where we get most confused.

What happens when your patient has a disease that has no cure? What happens when grandma refuses your help and insists on sitting alone in her chair day after day despite your best efforts? Is it ever compassionate to say “No, I can’t do this for you. You’ll have to try to do it yourself.”? When is it compassionate to put family caregiving down altogether and hire a case manager or use a care facility for the bulk of the care?

Very often in my work as a caregiving consultant I find myself asking the same kinds of questions. How can I help this person who seems to refuse my every suggestion? What can I do for this person whose problems seem so big I can’t even imagine a solution? What do I do when a person is begging me to help them avoid the pain of the only thing I know will make their situation better (using psychotropic medications, facility care, or accepting their patient’s impending death). Most of the time all I can think of to do is to simply sit with them and help them cry.

The one thing I’m sure about is that compassion needs to apply to all people involved. If the caregiver is not compassionate with themselves they can’t make truly compassionate decisions for someone else.

Lately, I’ve had a rash of caregivers who are in much worse condition than the people they are caring for. In their desperation to keep their patient from experiencing the disappointments, frustrations, and unavoidable sorrow associated with living a life with disability and loss they have put themselves through far greater pain and suffering. Is this really compassion?

To avoid pain is to avoid life. Avoiding feeling one’s feelings leads to addiction to alcohol, drugs, sex, food and TV. It’s a form of suicide and, in the most extreme circumstances, can literally lead to one’s death. Yet, ironically, in our society we think it is a form of “compassion” to focus all our attention on helping ourselves and others avoid difficult feelings at any cost. Rather than grieve our losses, move through the pain, and make decisions from a place of what makes sense, we medicate ourselves into a “happy” place and do whatever we can to keep things the same.

When a caregiver sacrifices it all so a loved one can refuse to be helped by anyone but her, she has chosen to impoverish her own being. A person who was rational and truly coming from a place of love and compassion for others would never expect someone they love to destroy his/her life in order to help them avoid developing relationships with more people who could help. A person who was truly being compassionate to themselves would never allow someone to treat them like that. They would say, “I’m sorry, Dad, that’s not possible. These are the options we really have. I’m sorry you feel badly about that. What will make this easier for you?” THAT is what compassionate care really looks like.

It takes courage. It takes knowing what your limits and boundaries really are and facing the fears and grief related to not doing what others have come to expect you to do. It takes knowing what you need for your own well-being and having the ability to say, “This is no longer negotiable.”

In reality, allowing yourself and others to be disappointed IS the best choice for all concerned. It allows people to see things as they are. It helps people accurately evaluate what needs to be done without the superhuman (and unsustainable) efforts of Super-Caregiver getting in the way. Super-Caregiver is really only human. We all have physical and emotional limitations and when we go beyond those limits eventually there’s always hell to pay. When we surrender to what’s actually happening—not only to our care receiver but to ourselves—we will always make the best choices. And sometimes those choices involve facing great loss and pain.

Sometimes the only rational thing we can do is help each other cry. This is NOT how we wanted our lives to be! This is NOT the sweet end of life we always dreamed of for our relatives! This is NOT working out the way we thought it would! And when we finally let go of the struggle to make life be what it is not, and our grief and tears are finally vented, we look up and see the world through new eyes. The old unworkable solutions can now be discarded and new choices can be made. They’re not the choices we thought we’d be making. They’re not the choices our relatives and friends might think we should make. But, they’re the best choices we CAN make given the reality of where we are today. To bravely go where we never wanted to go before, with the intent of making this choice be the best we can make it be, is the most compassionate decision a person can make.

The previous blog was an excerpt from The Spiritual Journey of Family Caregiving. Buy the book at

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