I speak of my personal experience of 2years care giving to my mother who had kidney failure. My two siblings and I experienced the effects of the disease. There were loving times including some in the midst of health traumas, and there were other times of frustration, fear and despair. My mother demonstrated great courage, perseverance and love in the face of overwhelming setbacks. Shortly after being diagnosed with Chronic Kidney failure, she died on August 7th 2006. I would like to bring out the aspect of family support.
In his book “Integral Psychology” Ken Wilber said “once you decide you have to talk, the problem is to whom? The loved one is probably not the best person to discuss some of your problems with, simply because they often are your problem.....”
In our case, my mother was the bread winner of the family being a single parent, she would try and make us feel that all was well but we knew that her health was deteriorating, we had no source of information whatsoever and our aunts, uncles were nowhere to be seen. I believe they did not know how to deal with the situation at hand. We were on our own, three children with no support.
Family support can be achieved through:
Building on relationships
This may be done through developing independent interests including activities outside home and separate from patient. Sitting in the house and visiting the hospital, develops monotony, gloominess and a sense of depression to the care giver.
Reality, need for truth and sensitivity
Once kidney failure occurs, it is no longer a feared future event. It has happened.
The well family members may sometimes make the physicians’ job harder because they often cope through harmful denial also called “optimism” e.g. we wanted to believe that all was well even after the doctor’s report. We hoped that everything was going to be “fine” and remain “the same”, little did we know we were providing a stage for my mother to deny the truth that her kidneys had failed.
Psycho therapeutic issues
We would tell others that we were doing well and had developed ways to cope with our difficulties. This was however not true for I was often close to tears. This is because our energies had been absorbed by her illness. It should not be assumed that the interests of the well family members are subordinate to that of the patient as this may increase the already substantial risk that a family break up may occur. At the end of it all when my mother passed on, we had to learn how to grow out of that phase and let go. You slowly come to terms that things have changed, that certain foods that were cooked due to her diet no longer had to be bought, sleeping through the night quietly, having no form of anxiety whenever you open the door as you return home that you anticipate bad news is “gone”.
Caregiver training
The caregiver is vital in helping care for the patient. For this reason, caregivers need to know how to provide basic care to ensure the patient is comfortable and safe in the home. Not knowing what to do, this brought frustration to everyone most of the time, this affected our social lives as children. It was a painful moment, had we known what to do to tackle everyday challenges we would have been better placed to assist my mum.
Share good times with the patient
As the patient gets weaker, symptoms increase and communication may become more difficult. My mum could get completely absent-minded not knowing who is who. As a result we used to sing to her, hymns from the golden bells book which she really loved. Whenever she would hear ‘blessed assurance’ she would have a smile on her face. This gave both her and us a sense of peace.
Show care and concern to the patient
Families make tough choices. My brother who had just completed high school used to cook my mum lunch take it to her in Kenyatta hospital for lunch, come back to the house cook supper for my sibling and I who were in school and go back to Kenyatta for evening visits. I am not able to say where the strength came from to do this for the two months that she was admitted but I now know that each one of us has Grace given to us by God to walk through difficult decisions.
Emotional and spiritual assistance
As families accompany a loved one in an end-of-life journey, everyday you see your loved one fading away and in a way it keeps you prepared for the day that there will pass on. Prayer and fellowship gave us a beam of hope and finally when the time came; it was less painful to accept what had happened.
Financial assistance
Families often have financial concerns brought about by their loved one’s extensive illness. Well wishers and some of my mother’s friends helped in clearing the hospital bills.
Spouses and other family members who care for patients with kidney failure have a variety of physical, emotional and spiritual needs that have not yet been adequately well thought of.
They need separate, distinct consideration.
Therein as we hope to develop a strong foundation for family support, emphasis should be highlighted on the caregiver as the support. As I conclude, I wish to stress that at the end of the day, it is my health, my life, making it my responsibility.
Afya yangu, Maisha yangu, Wajibu wangu!
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