Coping Strategies of Caregiving

About the author, Lela Shanks.

An independent scholar and national lecturer, Lela is a graduate of Lincoln University School of Journalism in Jefferson City, Missouri. She was the in-home caregiver for 14 years for her husband, Hughes, who died peacefully in her arms in 1998. Lela is the author of "Your Name is Hughes Hannibal Shanks: A Caregiver's Guide to Alzheimer's," published by the University of Nebraska Press in 1996, and Penguin Books in 1999. Lela produced two documentaries on Alzheimer's Disease for public access television in 1989 and 1990. Having been a civil rights activist in the 1960s, Lela also speaks on African American history through the Nebraska Humanities Council. She and Hughes were married for 50 years and have four children and eight grandchildren. Lela has lived in Lincoln, Nebraska, since 1965.

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Four years ago my husband, Hughes, was diagnosed as having multi-infarct dementia, a condition caused by a series of small strokes, A second diagnosis called his condition Alzheimer's Disease. By any other name, Hughes, at 70, needs 24-hour care.

Statistics tell us there is a high casualty rate among caregivers because of the emotional stresses involved. Studies also show that the determining factor of the outcome physically and mentally for the caregiver is the caregiver's attitude and approach to life. How does this make a difference? What are these emotional stresses and how do we cope with them?

The emotions most frequently associated with care giving are our so-called negative emotions since this is a job most of us do not want and did not choose. Rather, we are chosen. These negative emotions include: anger, rage, hate, resentment, bitterness, guilt, shame, embarrassment, fear, anxiety, depression, sorrow, self-pity, grief, impatience, blame, et cetera. The starting place for coping strategies for me was:

GET INFORMATION
I read everything I could find about this condition. I wanted to know what I could expect. What the stages are. I wanted especially to understand why my husband acted as he did. Why he hid things? Why he couldn't remember things? Why he didn't know me? This information continues to help me understand his behavior and helps to relieve some of my resentments, anger and anxiety. Understanding his behavior helps me to accept how fragile and vulnerable and needful he is.

ACCEPTANCE
Acceptance of what we cannot change, living in the past and dwelling on what might have been only feeds depression and self-pity. One author calls self-pity, preserved hate. Acceptance of the present reality opens the door to previously unknown creative solutions.

I have had to accept that the person I knew as my husband is now gone. I no longer argue with him trying to convince him of what his mind can no longer comprehend. When I give up this person who was my husband, it seems I found him on another level, one close to his heart and to his soul. Emerson said, "We dare not let our angels go, not knowing that archangels will walk in." In an atmosphere of acceptance, anything is possible.

BE RESPONSIBLE AND TAKE CONTROL
Some financial stress and anxiety can be relieved by getting a durable power-of-attorney. It may be necessary to change the names on bank accounts, trust, titles, etc. If your spouse should no longer be driving, face it. Do whatever is necessary. Some spouses turn to the Motor Vehicle Department for help. If you don't know what to do, don't just stew and complain. Consult an attorney or go to Legal Aid. Above all, accept now that you are the person in charge.

DO NOT MAKE PROMISES
Some care receivers will try to control the caregiver into making promises about the future, such as: "promise me you will never put me in a nursing home." This is manipulation and should be seen for what it is, despite circumstances. No one can manipulate us without our permission. Making promises about the unknown entraps us, while keeping all options open reduces stress.

EXPLORE AND FACE THE WORST POSSIBLE EVENTS IN YOUR FUTURE
The death of your loved one, being left alone, bankruptcy, your own hospitalization, et cetera. Discuss these possibilities with family, lawyer, doctor, a counselor, et cetera. Go to Social Services. Inquire about Medicaid. Don't take anything for granted. Visit nursing homes. Check nursing home ratings with the State Health Department. DO NOT BE TIMID. Good preparations now can help negate any future guilt. Don't let foolish pride stand in your way. Few of us have enough savings to pay extended nursing home costs.

USE RESPITE CARE REGULARLY FOR EXTENDED BLOCKS OF TIME
Day care is usually based on income. USE IT, or pay someone to come in so you can have meaningful time away from care giving. It may be self-defeating to hoard for the future when you desperately need respite care today. You can not wait for your loved one to give you permission. It is also wise to avoid being a martyr.

DEVELOP AN EMOTIONAL DETACHMENT FROM YOUR CARE GIVING
This is an evolutionary process and won't happen all at once. Our level of acceptance will determine our level of emotional detachment. Detachment relieves self-pity and blame, and releases us from taking our loved one's actions personally.

TRAIN YOURSELF NOT TO REACT
We are not puppets on a string. Each of us has our own mind. The one power over which we have full control is our freewill. It is up to us alone to determine how we shall act, regardless of our circumstances; how we shall feel, and how we shall use our energies. We decide whether we shall be angry or sad, or whether we shall laugh.

MAINTAIN A SENSE OF HUMOR
Some caregivers see no humor in their loved one's life. On the other hand, although a loved one may be terminally ill or incurable, this does not dictate that all of life shall be doom and gloom for the caregiver. Life is not one dimensional. Life is a whole made up of many parts, with care giving and illness and death only parts of the whole.

BE FLEXIBLE, WILLING TO LEARN A NEW THING--A NEW WAY
Be open to change. The marvelous quality about us as human beings is our ability to adapt and to grow at any age. Sometimes flexibility is needed to change our physical environment. When I awoke one morning to see my husband peering over me asking, "Who are you?" I knew it was time to move to another bedroom. Painful, yes. But pain can also make us stronger and wiser.

GET A SUPPORT SYSTEM
Get a support system in addition to your family. Our children have their own pain and rage to deal with. Once I stopped dumping on my children, they felt a freedom to ask questions and offer solace in their own time. Someone unemotionally involved with the patient is best as a sounding board. Being honest about our feeling is essential to coping.

BE SURE TO EXERCISE--BOTH KINDS
Be sure to exercise both kinds, the exercise of our faith and exercise of our body. One writer says: "Exercise is to the body what prayer is to the soul.

IN SUMMARY: Our interior wells are infinite. Our negative emotions can be transcended. The choice is ours.