Martin had muscular dystrophy. He also had COPD from all his years of smoking. Hepatitis C because he shared a needle once. The doctor prescribed oxygen but Martin refused it. He did take all the meds his hepatitis required. But the disease wasn't cured. He began to grow skinny. Soon he had difficulty walking and couldn't manage a city block. Countless times he had viral pneumonia. In his apartment, at the Elderly/Disabled building, he scrocked up whitish brown fluids, which landed on newspapers, the carpet, and filled coffee cups. Many times I saved his life by taking him to the Emergency Room. Martin had many problems. Martin was my husband.
I spent time with him almost every day. I drove to his apartment and we watched true crime shows, pop "news" channels, and laughed a lot. He read the newspapers cover to cover and told me everything that was in them. These six years were the best years of our marriage.
After some time, Martin's speech began to fail him. I had to make his phone calls for him. He seemed to become particularly depressed. He opened his windows all the way, and kept the fan running in front of them, although it was becoming wintry. I told him to close the windows and he said, "No." Martin was a stubborn man, so I did nothing.
The last time I visited Martin, he was sick, irritable, and extremely rude. He had been coughing up more white crap. There was a large pool near the couch where he lay. I told him that I was going to take him to the hospital. He refused.
I called an ambulance. The two paramedics arrived after an hour passed. They asked Martin questions. He jolted upright when they were present. With just me, he acted sick and lay on the coach moaning. He persuaded the EMTs that he was okay, that he felt fine, and did not believe he had anything wrong with him. "Aren't you going to take his blood pressure and his temperature?" I asked them. One of them said, "We don't need to do that," and gave an excuse that I didn't understand. "Clean up his apartment and he'll feel better," she said. "And get a pitcher of water, put sugar in it, and have him drink it." I followed these instructions diligently. The mess on the newspapers turned my stomach, but I ignored it as best I could. Martin would not touch the pitcher of water. After the ambulance crew was gone, Martin lay back down on the couch. I stretched the phone cord so it would reach his head.
Three days passed, and suddenly I realized, "I haven't heard from the damn guy! No phone, no emails, no texts..." Immediately I feared the worst, got in the car, and drove to his apartment.
The Elderly/Disabled building had solid glass doors in front that could only be opened with a key fob. I didn't have one. A group of elderly people were gathered in the hallway, seated on a long bench, appearing silent, their dead eyes looked at nothing. I pounded and pounded. None of them moved. There were twelve of them. I began kicking the door. No one would respond and let me in. Two women walked by and one of them exclaimed, "It's Mrs. Burrow! It's Mrs. Burrow! Let her in! Let her in!" They opened the door for me. I pressed the buzzer to Martin's room. I held it down for at least five minutes, and I knew it sounded loudly in Martin's apartment.
A woman, tall, thin, and stately, approached me and said, "I'm the building manager. Will you come with me?" I was now certain.
"Your husband died," was the first thing she said. I didn't tell her that this was already obvious to me. She told me some details. "Newspapers were piling up behind his door. We just hoped that he had gone somewhere for the weekend. But when we went in...." I began to cry and cry, breathlessly. "He'll go up to heaven and turn into an angel and watch over you," she said. I paid little attention, and continued to cry for a full twenty minutes before she got on the phone and began ignoring me.
It's ten years now. Almost to the day I lost my best friend in late November of 2008 - no one knows the exact date. Martin had never been the greatest husband - but for some reason I loved him. To this day I don't know why.
Your story reminds me of someone I loved dearly who would not take care of themselves until it was too late. It is frustrating to love someone who is very ill and who is not the healthiest person, psychologically, to have a relationship with. I wanted to let them go, but my love won out and I grieve to this day. You've written a tragic story. I don't see the silver lining, except in your love. It is never wrong to love.
Your recollection struck home with me. It cut me to the core. I'm so hoping that my end won't be like that. I have just started reading Ralph W. Braun's autobiography. He also had muscular dystrophy and I'm not at my reading, what else before he died young at around 70. My autobiography is different, but I never had muscular dystrophy and had a normal life until I was paralyzed in surgery at 20. But there are parallels. In 2012, I had an incurable pneumonia that was only stopped by drastic lung surgery. I quit smoking wisely at seven years of age and never had any disease like hepatitis C that would ravage the body like AIDs or other venereal diseases. I took care of myself, knowing that my life would be cut short by my injury. So far it hasn't, although my freedom has been severely tested.
It is my desire to die at home under the care of my personal caregivers or in hospice. What happened to Martin, in spite of his behavior, should never happen to anyone. I know that when I am in great trouble, the only thing I have is my voice to tell people what is wrong. Of course, I will never stop anyone taking my blood pressure because autonomic dysreflexia is so misunderstood and can kill me if not detected. I hope I don't disillusion my primary caregiver/partner who has been with me for 25 years. She is burned out at times from all the hard work. But I try to ease her burden by hiring others to give her a break from constantly tending to me.
A nursing home existence is not only a death sentence, it can be torture before one dies. I sense in your memoir a great guilt for what happened to Martin. I hope that you can be relieved of that by writing about it and moving on.
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