Karekoona-Würzburg, Germany
I watched with sadness and weakness the program on CNN Africa Journal- “Where have all parents gone” on 19th July 2006, "AT TIMES I wished I could escape from the program. It focused on Kenya and how the Grandmothers have taken over the role of caregiving, it reflected the real situation in Sub-Saharan Africa which is a major victim of the AIDS epidemic. It vividly reminded me my volunteer days with AIDS victims in 2003 in Botswana, Tanzania and Zambia.
"There are times when I feel irritated with horrible documentaries, and then I get disgusted with personalities in the affluent world where I apparently reside who make fun out of it. I feel like a failure when I do not cope well." Im sure there are many who would share my concern, In this article I urge that caregiving is fundamental and should be respected, it isn't particular to the less developed world but it is universal.
The news of terminal or chronic illness can be devastating to family and friends. "At the time of diagnosis every family feels alone. They may not know anyone else who has had this problem," says Jeanne Munn Bracken, in Children With Cancer. They are also often "numb and disbelieving," as Elsa was when she found out that her one of her grand daughters had HIV in that same Documentary. My self when my mother was ill, I felt sick and a hollow feeling" in my stomach.
Family members and friends may suddenly find themselves thrust into the role of caregivers—providing for the physical and emotional needs of the one who is ill. They may have to prepare nourishing meals, supervise medication, arrange transport to the doctor, entertain the patient's visitors, write letters for the patient, and much, much more. Often such activities are crammed into an already busy schedule.
As the patient's condition deteriorates, however, the work of caregiving becomes even more demanding. What might this include? "Everything!" Washing and feeding her, helping her when she vomits, emptying her urine bags." One caregiver in Botswana in 2003 once told me that, had a full-time job, she had to care for her ailing mother. She eventually had to choose between her Job and caregiving, the latter was her priority, unfortunately when I called her in 2005 she told reported to me the death of her beloved mother!
My conscience tells me that the quality of the care that the patient receives will depend to a large extent on the well-being of those providing the care. Yet, the feelings and needs of those who look after the sick are often overlooked. If caregiving merely resulted in sore backs and strained shoulders, it would be difficult enough. But, as most caregivers will confirm, the care is provided at enormous emotional cost. Traditionally in Africa parents were caregivers but the AIDS epidemic has overhauled the custom- parents are gone as the documentary suggested- grandparents have taken over the task of caring for innocent young AIDS victims.
Caring for a seriously ill loved one particularly one with HIV/AIDS can be a very frightening experience. The caregiver may be afraid of what will happen as the illness advances—perhaps even afraid of the death of his loved one. He may also fear that he will not have the strength or ability to meet the patient's needs.
Elsa describes the reason for her fear this way: "I was afraid that I might hurt Betty physically, thereby adding to her suffering, or that I would do something that might shorten her life."
"Grief is a normal experience for people coping with a loved one who has a chronic illness," states Caring for the Person With Dementia. "As the patient's illness progresses, you may experience the loss of a companion and a relationship which was important to you. You may grieve for the way they used to be."
A caregiver to an AIDS Victim may wonder: 'Why did this have to happen to me? Why don't others help? Can't they see I'm not coping well? Can't the patient be more cooperative?' At times, the caregiver may feel very angry about what seem to be growing and unfair demands made on him by the patient and by other family members.
The one providing the care may bear the brunt of the patient's own frustrations and anger. In the book Living With Cancer, Dr. Ernest Rosenbaum explains that some patients "may at times experience rage and depression that will seek as their target the nearest available person . . . This anger is usually manifested as irritation over trivial matters that in normal times would not even concern the patient." Understandably, this can put added strain on the frayed nerves of the loved ones who are doing their best to look after the patient.
Maria, for example, did commendable work nursing her dying friend. On occasion, though, her friend seemed oversensitive and jumped to wrong conclusions. "She would be very cutting and rude, embarrassing loved ones," Maria explains. How did this affect Maria? "At the time, one seems to 'understand' the patient. But on thinking it over later, I felt rejected, angry, unsure—and not inclined to show needed love."
A study published in The Journals of Gerontology concluded: "Anger has the potential to mount to a high level in caregiving situations [and] sometimes results in actual or contemplated violence." The researchers found that almost 1 out of every 5 caregivers feared he might become violent. And more than 1 in 20 actually did get violent with his patient.
"Feeling Guilty"
Many caregivers are plagued by feelings of guilt. Sometimes the guilt comes on the heels of anger—that is, it was evident in that African Documentary, they feel guilty because they feel angry at times. Such emotions may drain them to the point that they feel they can't go on.
In some instances, there is no alternative but to have the patient cared for in an institution or a hospital. This can be a traumatic decision that can wreak havoc with a caregiver's emotions.
Whether the patient is hospitalized or not, his loved ones may feel guilty that they are not doing enough for him. Said –Amani,one Tanzanian Old Friend of Mine, There may also be concern over neglect of other family responsibilities, particularly if the caregiver spends a great deal of time at the hospital or must work longer hours to help pay for mounting bills. "I have to work to help with the expenses," lamented one mother, "yet I feel guilty because I can't be at home for my children."
Obviously, caregivers have a desperate need for support, especially after the death of the one cared for.
"My most critical responsibility [after a patient's death] . . . is to alleviate feelings of guilt in the caregiver, which often go unspoken," says Dr. Fredrick Sherman, of Huntington, New York.
It is my opinion that such feelings should be exposed and shared with friends, If these feelings remain unspoken, they could be damaging to both the caregiver and the patient.
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