Some weeks ago I wrote a blog on the Caregivers Journey pointing out that there was nothing harder or more complex in life than to tend to a loved one whose life is slowly and painfully draining away and that the caregiver- be it the parent, spouse or sibling- face difficult and in some cases incredibly painful choices. It was a paean to the caregivers- all of them- and an ode to their patience, their compassion and their inspiration. But I had forgotten that the patients too carried terrible burdens which they rarely shared with their caregivers. They had a dual burden – besides dealing with the sickness, they also needed to think about the future when they would no longer be around but their caregivers would be.
This plight of the patient was brought home to me most poignantly recently when a friend of many years fell sick and in a space of a few months had to be hospitalized. He had been a robust, gregarious person with an active social life when he was stricken with neuropathy, an undiagnosed disorder that left him a shell of his previous self and full of pain and despair. I would often find him slumped in his chair holding his head in his hands complaining and fearing that his end was near and simultaneously worrying about his wife of five decades.
There is little in literature or research to help the patient negotiate these treacherous paths. Most focus on the patient’s ability to handle the shock and to help him through the next stages of depression and acceptance. Few help him to deal with the caregiver who normally keeps a stoic mien and cheerful exterior during this entire period. In the early days, it is normal for the patient to settle his temporal affairs, ensuring that his wife and family are well provided for, the wills written and all the other affairs taken care of. But as the time of sickness stretches out, it becomes more difficult to deal with the emotional impact of the impending separation.
There are no guidelines here. Many attempt to deal with it by retreating into silences or into religious ritual. Others attempt to create deliberately or subconsciously a schism with their loved ones so that their absence would be felt a little bit less. It is the same as many wives who create a quarrel with their husbands on the eve of their long journeys, hoping that their anger would tide over the early days of the separation. Some patients become rude and abusive towards their caregivers towards the end with the same objective. This friends wife came one day to us in shock and dismay , “ He says he wants a divorce”, she cried, “ We have been married for over 50 years and now he does not even want to see me.” It was hard for her to understand that this was not a request for a divorce lawyer but a plea from a drowning man trying his best to alleviate the pain that his impending absence would cause in her life. He was trying, in these rude ill chosen words, to help her cope with life after his departure.
The classic process by which people allegedly deal with grief and tragedy, especially when diagnosed with a terminal illness or catastrophic loss is described in the Kübler-Ross model of- denial, anger, bargaining, depression and acceptance. Denial is usually only the first stage and offers a temporary defense for the individual. This feeling is generally replaced with heightened awareness of situations and individuals that will be left behind after death. Once in the second stage of anger, the individual recognizes that denial cannot continue. But because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy. The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the person is saying, "I understand I will die, but if I could just have al little bit more time...". During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual often becomes silent, refuses visitors and spends much of the time crying and grieving. This process allows him to start to disconnect himself from things of love and affection. It is an important time for grieving for him that he needs must go through. The final stage comes with peace and understanding of the death that is approaching. Generally, the person in the fifth stage will want to be left alone.
The patient and the caregiver are both going through this cycle of grief. But what we have not understood is that many times they – the patient and the caregiver- are in different stages of the cycle. While one may have progressed to depression and then acceptance, the caregiver may still be in denial. My friend seemed to have progressed through the entire grief cycle in these three months. But his wife of over five decades, who was his prime caregiver, was still in the denial stage and found it difficult to adjust to his varying moods. The final stage of acceptance is not only for the patient but also for the caregiver. Denying that life will go on even after the patient has passed on is normal for the caregiver. But the double burden of the patient is to ensure that the caregiver will find that life does still exist and that she is a part of it. The real question is how to make others accept the inevitability that they now have to countenance and deal with?
As for the end, one would hope that we would celebrate a life and not only its end. It should be a special day when people, who loved a person, get together and celebrate his life, happily, and remember the person as he was...alive, and vibrant. It should be like the Irish wake, where there would be lots of food and plenty of drink to be consumed, people should come and socialize and remember the departed person's life. This should not be a time for tears but a celebration of his life. But it should also be simultaneously a renewal and a new life for the caregiver.
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