Caring for the Caregiver

Caregivers are Heroes

by Patti Moore

Each and every person who unselfishly cares for someone, providing love and compassion in the midst of unrelenting daily chores and responsibilities, is a hero in my mind. In my work with hospice I have seen caregivers face the most horrendous of situations. Their loved ones (our patients) had physical symptoms like uncontrollable pain, continuous diarrhea, constant vomiting, and huge wounds with complicated dressings needing to be changed often. Or, caregivers faced the emotional pain of losing someone who they could not imagine life without, or the spiritual pain of feeling as if God had forsaken them, and still they continued on like solders on the front line.

I have watched people like this in awe. Regular people, who do this day in and day out, continually loving and caring, true heroes of our society. Never receiving recognition or awards, medals or scholarships. But who quietly do their caring, never expecting anything in return, except a smile or a hug or a feeling of satisfaction that their loved one is clean and dry and resting. Those are their rewards.

Caregivers are experts, all of them, in the art of giving. Of giving that most valuable gift anyone ever has to give---their time and their heart. Just because they never took a formal course on how to care for someone, they are, whether they realize it or not, an expert. They became an expert the day they said, "yes" to caring for their loved one. Maybe they don't recall that moment when they became the one in charge. Maybe it was a subtle shift or maybe it was a sudden blow like a stroke or a heart attack and their lives changed forever. Whichever the situation, they have taken on that most honorable of role, a caregiver.

Those who never dreamed they could bathe an adult in a bed, or change an adult diaper or roll a wheelchair around the mall, or any of the million small care giving tasks they do daily, are now experts; experts in the art of love in action. Not everyone is given this opportunity; it is not for the faint of heart. It is for the lion-hearted. And they are bearing witness to the completeness and wholeness of life.

A complete life is never without shadow, and some of the power in life comes from its shadow qualities. Shadows provide depth and interest in what cannot be seen. Life without shadow is bland and flat. Have you ever sat outside in the sun, especially at the beach, and at some point you just had to go for some shade-or for the shadows? For to stay in the bright sunlight all the time would be too intense. But never forget, shadows cannot exist without light. The wholeness of life is made of light and shadow. A complete day is darkness and light. And the living of life is made up of both the darkness and the light. Without one, we cannot appreciate the other.

In the powerful book Care of the Soul, by Thomas Moore he says: "Care of the soul is not solving the puzzle of life, quite the opposite, it is an appreciation of the paradoxical mysteries that blend light and darkness into the grandeur of what human life and culture can be." One must learn to appreciate the darkness and the light.

Fear is the biggest immobilizer on the earth today. Fear can be the single largest factor to the lack of creativity on earth. "I'm not good enough, I don't know enough, I am a fake and someone, sometime will find out so I'd better not even try or quit now". Fear and courage, fear and faith. Surfacing at times when we least expect it. Present within all of us, but can we find the strength to pull up courage and faith when the chips seem to be all down? And how does one do that? Eleanor Roosevelt said "You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You must do the thing you think you cannot do".

Moral courage is finding the strength to do the unpleasant when you know in your heart it is the right thing to do. Our founding fathers Thomas Jefferson, George Washington, Samuel Adams, and Benjamin Franklin had courage they had moral courage. Have we forgotten they could have been hung for treason if the British had won, if the people of these states had not banded together and said "yes, give me liberty or give me death" we would be singing Hail to the Queen rather than, the Star Spangled Banner. That is courage.

The wife who says, "I will care for my invalid husband, somehow, someway because he is my husband" has courage as well. Or the daughter who concedes she is no longer able to care for her mother and admits her to a nursing home has courage as well. Courage comes from someplace within us. It is there for all of us if we can hold fear at bay, long enough to allow courage to come to the surface. For each time you face something you think you cannot bear, your resolve and your courage becomes stronger, more real. Until one day you look in the mirror and say, "I can do this, I can get up each day, bathe and care for my loved one, clean, cook, shop, give medications, listen, comfort, organize, change diapers, wash dishes" and more, and more and do it all over again tomorrow and the next day and the next. Courage is saying: "Yes, I can and I will care for my loved one when everyone else says 'put him in a home'. " Or courage is saying: "Yes, I will be with you when you die because I am your friend and I will not allow you to be alone". With each "yes" comes new strength. With each "yes" come new discoveries of yourself, of the depths you never knew yourself capable of. With each "yes' comes peace. Courage is not just about fighting the bad guys. It can be about finding out you have a chronic illness and not letting the illness define you. It is about staying in charge of your own life regardless of the circumstances.

Courage is about finding the strength to face the soft under belly of fear and not being consumed by it.

In the wonderful book Tuesdays with Morrie the author Mitch Albom writes about spending each Tuesday with his old professor Morrie Schwartz and learning the last and greatest, lesson of life---the lesson of living until you die. It was about a man with Lou Gerhigs disease or ALS. His entire body would become helpless and eventually not have the muscle strength to breathe. However, Morrie had an outlook on life that was nothing short of miraculous.

When Mitch asked him about what he thought the meaning of life was, this man, who could not walk or move without help said: "Devote yourself to loving others, devote yourself to your community around you, and devote yourself to creating something that gives you purpose and meaning." And he goes on to say "Why do you think it's so important for me to hear other people's problems? Don't I have enough pain and suffering of my own? Of course I do. But giving to other people is what makes me feel alive. Not my car or my house. Not what I look like in the mirror. When I give my time, when I can make someone smile after they were feeling sad, it is as close to healthy as I ever feel. Do the kinds of things that come from the heart. When you do, you won't be dissatisfied, you won't be envious, and you won't be longing for somebody else's things. On the contrary, you'll be overwhelmed with what comes back."

This said by a man living in a body that no longer worked. Morrie had a faith that helped him transcend a non-functioning body.

Faith is an important aspect of being a caregiver. When I hired staff to work in hospice I would ask them if they had a faith or a strong belief system that would allow them to step into the "valley of the shadow of death" every day and not be consumed by it. Only those people with a strong faith lasted in hospice work. And I do not mean religion. Although for many people it is their lifeline. Believing in the dignity of a human life and respecting everyone, because we are all here doing the best we can with what we've got. We had staff members who were Christian, Jewish, Buddhist and those with a personal belief in a higher power in the universe that did not have a name. It did not matter what or who they believed in, what mattered was they believed they had some source of strength within themselves to draw upon when they felt overwhelmed.

Also caregivers should know their rights. Below is a copy of a Caregivers Bill of Rights found in "The Caregiver's Handbook" as referenced in the May-June 1997 issue of AARP's magazine, Modern Maturity. It states:

1. Caregivers have the right to receive sufficient training in care giving skills along with accurate understandable information about the condition and needs of the care recipient.

2. Caregivers have the right to appreciation and emotional support for their decision to accept the challenge of providing care.

3. Caregivers have the right to protect their assets and financial future without severing their relationship with the care receiver.

4. Caregivers have the right to respite care during emergencies and in order to care for their own health, spirit, and relationships.

5. Caregivers have the right to expect all family members, both men and women, to participate in the care for aging relatives.

6. Caregivers have the right to provide care at home as long as physically, financially and emotionally feasible; however, when it is no longer feasible caregivers have the obligation to explore other alternatives, such as a residential care facilities.

7. Caregivers have the right to temporarily alter their premises as necessary to provide safe and livable housing for care receivers.

8. Caregivers have to right to accessible and culturally appropriate services to aid in caring for aging care receivers.

9. Caregivers have the right to expect professionals, within their area of specialization, to recognize the importance of palliative (ease without curing) care and to be knowledgeable about concerns and options related to older people and caregivers.

10. Caregivers have the right to a sensitive, supportive response by employers in dealing with the unexpected or severe care needs.

Caregivers must remember their health and well-being is as important as the person for which they are caring.

My hope is that those people who so unselfishly care for others, discover their own strengths and courage by facing their fears. And in doing so, discover that the shadows don't always hold monsters ready to leap in the dark of night, and light always comes after the darkness, displaying the richness of life's gifts. And when they look in the mirror, they will see the reflection of a beautiful human being, an American hero who has learned to serve others with love and compassion.

Article reprinted with permission from the author, all other rights reserved by the author.

Patti Moore
President and Founder of
The Watershed Group
www.thewatershedgroup.com

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