Dealing with the pain of caregiving.

One of the subject-themes for this issue of NURSING HOMES is "Pain Management." Reflecting on that and its relationship to the families of nursing home and ACLF residents, it wasn't difficult to think of all the "pain" felt by family members. It is generally not a pain that can be taken away with a medication, unless the trauma to the individual becomes so great that medical assistance becomes necessary. And that does happen. More often, however, it is a pain of the heart - the soul - the family history - that intangible part of our humanness that says, "I hurt" when someone we love has a major lifestyle change.

Just read your newspapers for documentation. Ann Landers has published several letters from families of residents expressing their pain and suffering. Sometimes it results from the guilt of placing a loved one in a care center. Sometimes it is because families do not understand the care given or how to get more information concerning that care.

A University of Florida researcher, Jane Myers, has authored a book, "Adult Children and Aging Parents," which addresses the struggle of children faced with the dependency of an aging parent. Frail elderly parents seek the comfort of their children and grandchildren, and this searching may result in much pain for the child and their teenage children. The reality of chronic illness affecting the elder parents brings added pressure on the adult children and their family's lifestyle. The generation gap widens.

"If elder care is a problem now - and it is - we had better find good, humane answers soon. If we don't, the future...will turn into a nightmare for millions of us," said E. James Morton, chairman of John Hancock Financial Services, which conducted a private study in 1989. In that study, "A vast majority of the employees questioned - 70 percent - admitted that taking care of elderly relatives or friends interfered with job performance."

How does one manage that kind of discomfort? That kind of pain? Women are more likely to be the caregiver. Their careers may be jeopardized as they struggle with work, family, and caregiving responsibilities. However, the Hancock survey indicated that executives are touched by this dilemma, as well: "...half of them are personally responsible for an elderly person now or have been in the past two years, and one out of every two executive reports being concerned about maintaining job performance."

The pain families feel, directly or indirectly is real. As we see our population aging, this dilemma needs to be addressed. Now.

For today, what can you do? As a family member, how do you deal with the painful discomfort of having a loved one in a care center? A letter from a reader a while back referenced her pain at the problems she perceived in the care given her mother: "What I write may not please you on every count, but I believe it must be said. I went to visit my Mother at a nursing home. She was left uncovered and naked while her bed was being changed. She was a very shy little lady and this embarrassed her...Mother said a lot of things went on after the lights went out. She did not tell what, because she was afraid to, but a lot of stealing goes on, too!"

And yet, in the same letter, the writer praises some aspects of the nursing home. "It was a good nursing home as nursing homes go. They had crafts for the patients, which was good." The writer realized her mother had lost some of her mental clarity, and so accepted she may not always have been right about what she thought went on "after the lights went out." But, families, you have an opportunity to help the care centers give better care by constructively letting them know what your concerns are.

Unasked questions create most of the discomfort felt by families. Every facility has someone for you to talk to. The administrator, Social Worker, Director of Nursing -- all are there for you. The days of retribution are gone. You should not be afraid to share your concerns with the appropriate person. Additionally, there are ombudsman organizations available in most states. This is an outside organization willing to listen to your concerns should you feel that the facility seems uninterested.

Another approach can be seen in a study begun in 1989 by two Ford Motor Plants in Louisville, KY. It has shown that a cooperative venture between management and labor can create a program which addresses the needs of families. Ed Hardesty, UAW Benefits Representative, said recently that this is the most positive newly added program for the benefit of workers. Employees and their immediate families have access to care as needed when trauma or illness occur. A Case Manager will visit the home, determine what the needs are, and arrangements are made to provide assistance in shopping, bathing, cooking, housework, etc. -- whatever is needed to keep the individual at home. The person must be unable to perform a minimum of two ADLS (Activities of Daily Living) such as eating, bathing, etc. This program also works cooperatively with Hospice in the event of terminal illness. Such assistance gives the working spouse the ability to stay on the job, knowing that the family member is at home receiving the care needed.

Since the program was implemented in 1989, about 30 some persons have used the service. One person had a stroke and has used the program for almost three years. The current system is in place until October of 1993. Mr. Hardesty said that GM is now planning a pilot program at one of their plants. It will be patterned after Ford Motor Company's project. This kind of cooperation is what the future will need!

If you know of OTHER unusually creative programs which address challenging changes in our lifestyles, we would be happy to hear from you.