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I was standing at a crossroad. Turning one way and then another way. The future of two people depended on which path I would follow. On the one way I envisioned permanent illness, frustration, helplessness and financial difficulties. On the other way I saw stability, security, freedom but also guilt and loneliness. There could be no compromise.
It began after forty-five years of a good marriage. My husband retired at the age of sixty-two and we had fifteen more happy years together. Then his behavior started to become very erratic, there seemed to be no physical problem, it was mostly mental, so he was referred to a psychiatrist. After a few visits the doctor advised Micael to consult a neurologist with the explanation that the way he crossed his legs and his gait as he walked down the hall looked abnormal. The diagnosis was Parkinson’s disease. We knew very little of this devastating disease and Micael’s physical condition at that time was good so we hoped for a miracle and continued on with our lives as before until gradually symptoms became evident. His mental condition became worse because evidently there were changes occurring in his body that his mind was subconsciously rejecting. He became very unsteady on his feet, he fell several times and his bodily functions were slowed.
He became very restless, always wanted to travel and continue to function as before, then when we reached our destination he insisted on returning home immediately. It was embarassing to visit with friends because he always broke up the company too early.
Parkinson’s is a progressive disease without a known cure, Micael knew this and would not accept his predicament. He fought his physical condition constantly as if he could fight off the sickness as he had eliminated other unpleasant experiences in his life but this one was not under his control. As his muscles deteriorated it became impossible for me to care for him alone so I hired a male nurse. After two days the man walked out, he said he had never before come across such a difficult and uncooperative patient. A friend recommended a female nurse who had helped her through an illness, fortunately Reddi was available and came into our house like a whirlwind and took over. As strong-willed as Micael was, she almost overpowered him, but not quite. He insulted her, wanted to throw her out of his house and refused her help, he could not understand why I could not care for him myself. When he knocked Reddi down to the floor one day her husband said she could no longer work for us, but Reddi was very professional, she understood his illness and said that she had become so fond of me that she could not leave me alone with him.
His physical condition worsened very rapidly, we had to tie him to the hospital bed or he would try to leave it and then injure himself. Of course this was humiliating to him so he became even more desperate, even sneaky as he invented all kinds of excuses to disobey instructions and disobey Reddi. He was admitted to a hospital for a short time, they of course could do nothing for his condition so the doctor suggested that I should place him in a nursing home if I could not care for him in his own home. The medical profession could only prescribe pills which did nothing for either his physical or mental situation. Very little compassion was offered.
I kept him at home with the nurse and a substitute on her day off until one morning when I was alone with him, I became desperate and called the VA hospital and asked them if they could help. They asked questions about the problem and said that if I had his honorable discharge papers from the United States military service, they would accept him as a prospective patient. He was examined there, of course there was very little that they could do for that illness, only repeat the former treatment and hope for relief. So he was sent home and Reddi and I suffered through this terrible time. Then one day Micael blacked out for a minute, I called a friend and we took him back to the VA hospital. As we placed him in the car he was dead weight.
When I visited him the next day I saw a sign over the bed with three letters on it, I asked the nurse what it meant, she answered, “Nothing to be given by mouth,” which meant that Micael would have to receive nourishment through a tube in the nose because the muscles in his throat had constricted and he would undoubtedly choke if fed by mouth. This symptom had been evident. Even water could not be swallowed. When the doctors placed the tube Micael refused it and pulled it out, a feeding tube into his stomach was recommended, this would require minor surgery so I signed the consent form for this procedure. He returned from surgery with nothing accomplished because his internal organs had deteriorated so they would have to perform more extensive surgery in order to place the tube. My consent was required again for a dangerous operation.
So now I stood alone at the crossroads. My sons thought that this must be my decision, mine only. From my difficult previous experience with Micael I knew that I could no longer care for him in his own home, even with a nurse. The situation would be even worse now that he would have to be force-fed, so I would have to place him in a nursing home indefinitely where he could receive professional care. His heart was strong, his mental capacities although erratic were otherwise normal. He would be aware of his situation while he existed as a vegetable, unable to walk, incontinent and helpless. I knew his independent nature would not comply with such conditions.
On the other hand he could not live without nourishment. I discussed the situation with more knowledgeable people than myself, with doctors, rabbis and family, but I alone had to decide my husband’s future. When I made the fateful decision a nurse complained to the ethics committee that she did not approve, her reason was that it was her duty to keep her patient comfortable and her orders stated differently. A representative was called in who asked Micael if he wanted to live and he answered yes, so they replaced the tube giving temporary sustenance. Then he called for me and cried that he had made a mistake, he wanted to tell the doctors that he did indeed want to live but not in his present condition. After some meetings my decision was upheld to let him pass on without interference as Micael had expressed his wish.
Micael died peacefully, finally there was no struggle. The day before he asked me, “Will I die tonight?” So I knew he accepted what was to come.
I chose the path that would be a turning point for me. There are no surprises, it is what I expected, there’s freedom, there’s security, but there’s also loneliness and sometimes guilt.
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