Bereavement Article

Challenges and Gifts of Professional Caregiving

Elaine Tiller, M.Div.

Like a pebble thrown in the water, grief has many ripples that keep going and going. We who work in long-term care and end-of-life settings must work on all of the ripples of our grief. This is the major challenge for us as caregivers.

In order to continue being productive workers in end-of-life care settings, we must learn how to manage our own grief and loss. And not only to manage, but to grow, change and develop through all of the loss that we see, experience and integrate. If we work in an environment where we confront loss and grief daily, we either learn to do our own grief work or we don't last in the position or environment. But how do we do this--how do we meet this challenge?

One important way is to cognitively and emotionally understand each of the levels of grief that we confront so we do not lump them into one large bundle that is impossible for us to work through. I want to outline four levels of loss that we deal with hourly, daily, weekly or monthly, depending on our work setting and personal lives.

The first level of loss is our own personal losses. We have deaths in our families, we have divorces or the end of other important relationships; we have children marry or go to college, and the many other losses that the rest of the world has.

We must learn professionally to set these aside in order to concentrate on the persons we are working with--to hear their losses and needs rather than our own. Our training helps us learn to do this, but it also takes personal and professional discipline on an ongoing basis. Professionally we must do this setting aside.

However, we need to find ways in our personal lives to work on these losses-- to do our own personal grief work and to integrate our losses into our lives to be whole people without whatever and whomever we have lost. We hold the precious memories, but build a new life separate from those persons and things we grieve. We must take time for ourselves to do this hard work. Give ourselves permission to do the grief work that will lead once again to wholeness and health.

The second level of loss is the illnesses and eventual deaths of our carereceivers. We are daily caring for persons who are not going to get well in the normal sense of the word. We care for them in order to make each minute, hour and day better for them, but we do not work for "cure" in the way our societal health system thinks of enabling persons to get well.

We are caring for the most vulnerable and frail persons in our health care system who continue to deteriorate even as we work to help them and their families'lives to be as good as possible physically, emotionally and spiritually during this journey. They and their families rely on our expertise as they face the deterioration and the journey that ends in death. We grow close to them and they touch us as we touch them. Then they die, and we lose the relationship both with the patients and with the patients' families.

The third level of loss is the "in your face," constant and absolute reality of death-- not as a intellectual concept but an emotional, physical, spiritual and intellectual reality. The more we are around deterioration and death, the more death is part of our lives moment by moment. We can not pretend it away, pray it away, or hold it at bay. We must either fi nd ways to incorporate the constant reality and fi nality of death into our lives or we stop working in end-of-life care. We must do this over and over, sometimes many times each day and other times daily or weekly, but it is over and over if we are to survive and even thrive in our work settings.

The fourth level of loss is the constant certainty that my own death could come at any moment and/or the death of my child, my husband, my wife, my partner, my mother, my father, my grandchild. When we see all ages dying, we know for certain and without question, that we and anyone we love could die at any time. No one is assured of a future beyond the moment even though we all live as if we are.

My view is that, at any given time, we can be working on our grief on all four levels, or on one level or two or three, and, of course, these change because of our own personal circumstances. If we can sort out these levels for ourselves, then it becomes more manageable for us to work on the levels that need to be worked on at any given time in order for us to grieve, to grow, to change, to thrive and to fi nd fulfi llment, satisfaction and even joy in our work. But this is not something we do one or two times. We do it over and over and over and over again.

We know the gifts we receive from our work are many and well worth doing the work to make these gifts possible. The gifts are things like: We are intensely aware of the preciousness of life--not just generally, but moment by moment, which pulls us to living those moments as best and as fully as we can. We experience through our patients and families an intensity of love and tenderness and gentleness (and sometimes the opposite of these) which gives us glimpses into what we want to build for ourselves and what we do not want to build for ourselves. We are allowed and privileged to journey on sacred ground with patients and families at such a fragile, personal and vulnerable time for them.

One of my co-workers used to read the first chapter of a book and then the last chapter to see if she wanted to read the in-between-chapters. After working in hospice for the last 10 years, she no longer needs to do this. Now she reads the book from cover to cover and enjoys all of the moments. She related this to her hospice work which has taught her to cherish each moment, each day, each week--not just the big moments. She doesn't have to know the end to enjoy the in-between. So our professional caregiving challenges us to personal and professional growth, if we can do the internal work we need to do to manage all four levels of grief.

How do we do this? I think the answer lies in self-care and fi nding ways to comfort ourselves. The dictionary gives the following defi nition of the word comfort--to soothe or console, as someone grieved; to strengthen greatly; to give strength and hope; to act to ease grief and suffering; to bring solace and relaxation; to lessen pain and discomfort.

There is nothing more important than self-care to keep our whole selves healthy as we do the end-of-life work of giving, caring, sharing, loving, growing, and changing. No one can do it for us. Others can certainly help us and will, if we allow it, but we must learn to comfort ourselves and ask for the help we need from others along the way.

For each of us self-care will be different. I cannot tell you a recipe for selfcare for you, because my recipe will not be right for you. Components of selfcare are often music, long showers/baths, massage, therapy, working out at the gym, reading, artistic endeavors, praying, meditation, yoga, reading, gardening, sleeping, going to the mountains or beach, cooking, baking--and many, many more. What is important is that we consciously give thought to what brings us joy, what brings us growth, what allows us to grieve, heal, be enriched rather than burdened by our work and experiences. One way to reflect on your needs for self-care and how to meet these needs is to think about the following:

• What are the activities that bring you comfort?
• Who are the people that bring you comfort?
• What are the things that comfort you?
• Where are your comforting places?
• What are your comforting thoughts?
• What are your comforting foods?
• What brings you comfort physically?
• What brings you comfort spiritually?
• What brings you comfort mentally?
• What brings you comfort emotionally?

Just as understanding and identifying the levels of grief we live with helps us to manage them in healthier, more helpful ways; so also understanding and identifying how to comfort ourselves, take care of ourselves, helps us to manage to do this better as well. In summary, if we are to grow and develop and thrive in end-of-life care, we need to understand and work on our grief issues at a variety of levels. We also need to diligently work on comforting ourselves--on caring for ourselves--each and every day.