Kudos to Guido Bible College and the Lodge at Bethany for the free workshop for caregivers, which they provided on Jan. 20.
It is hard to imagine a greater challenge for seniors and many others than the role of caregiver to loved ones who are seriously ill or disabled and need constant care. According to Dr. Larry Guido, there are currently more than 40 million caregivers in the United States, usually family members and often spouses.
Locally and regionally, some caregivers receive a measure of relief from programs administered by the Area Agency on Aging of the Coastal Regional Commission. One is a respite plan which frees caregivers from their duties for a time to deal with financial affairs, go shopping or just take a break.
Like other programs for the aging provided by the AAA, these are not known to some eligible recipients and there is never enough funding to cover those who apply. There is a waiting list. Funding for programs administered by the AAA comes from federal and state governments – primarily federal under the Older Americans Act – and others. Varying amounts and kinds of support come from county commissions. AAA staff persons secure additional funding from private and public corporations and local businesses. Typically, the needs are under-matched by available funds.
Community level efforts are greatly needed and the one provided by Guido ministries and Bethany is a commendable example. While it was not designed to intervene, it offered education, sharing and encouragement. Perhaps it can be repeated at another site for those who could not attend the first.
Might I suggest the Continuing Education facilities at Georgia Southern? Without cost to participants, of course. Several area churches could accommodate such a workshop, even organize one on their own.
No matter how loving the relationship, personal caregiving for a loved one in the home is a difficult – sometimes destructive – challenge. They can last for years. I know of several that endured for more than a decade.
There is the physical burden of lifting a disabled person into and out of beds, chairs, wheelchairs, toilets, vehicles, etc. There are devices that help in some situations, but dead weight is weighty. If the helper is also aging or otherwise handicapped, the difficulty is even greater.
We are not born knowing how to take care of fragile loved ones, nor are there courses in everyday schools on how to do it. We have to learn, mostly through "on the job training." Many of the things that must be done are not pleasant. Cleaning and changing an incontinent person – maybe several times a day – is unpleasant, unfamiliar and undesirable.
Raising children, we might feed them for a few months before reaching the finger-food stage, but that service might be required at every meal for years by a handicapped loved one. It is amazing how many small, unexpected things have to be done in the course of a day.
Repetition of the daily grind in a relationship of dependency and caregiving eats into both people. The patient chafes at helplessness or becomes more demanding. The caregiver feels the strain of physical labor, yearns for freedom from confinement by constant responsibility. Love cannot erase every hardship.
However, the greatest pain is not from heavy lifting or all-consuming duties but from the heart-breaking erosion of the body and often the very person of a loved one as the disease or disability takes its toll. Vitality slips away like sand through the fingers of a child. Sometimes that vitality is wrenched away from the body with pain, visible suffering. The caregiver usually is also being ground away.
Alzheimer’s disease and other types of dementia create a special kind of loss. They can transform the basic person of the patient. Communication breaks down, slowly at first but often completely. The loved one becomes lost, living but lost.
When they slip into a comatose state or die, others declare that it is a blessing. Perhaps it is for patients' survivors to feel loss, the culmination of long days, even years, of loss. It is hard to find blessings in watching the very person of one's beloved being whittled away by an inexorable, pitiless disease.
Some survivors do not survive for long. Virg took care of his wife for many years, first at home and then in a nursing home, where he spent each day with her. He took care of many of her needs there, including feeding her. He talked to her even after she no longer recognized him or responded to his voice.
Eventually, his health declined to the point that he moved into the nursing home, too. Soon after she died, he joined her in their burial plot. I can cite other examples of the destructive power of caregiving. In every case, the "second victim" would do the same thing all over again. For all of its challenges, caregiving is a loving thing that enlarges the heart of the lover.
Roger G. Branch Sr. is professor emeritus of sociology at Georgia Southern University and is a retired pastor.