Sandra's Story
On the morning of 9/11/2001 Terry, my partner and later my wife, had driven through the Brooklyn Battery Tunnel into Manhattan just as the first plane crashed into the World Trade Center. She was forced onto Thames Street and had to abandon our car. When the second plane hit she was standing at the corner of Rector and Trinity Place. She survived but was covered with debris and ash from the fallen buildings. She walked over the Manhattan Bridge to Brooklyn where I picked her up on Flatbush Avenue and brought her home. She had no outward signs of the event other than being coated in the gray ash. It was also clear that day that she was suffering from PTSD and would continue to suffer for many years. When I attempted to retrieve our car a month later, we were told that we couldn’t even see it “because it was contaminated.” Terry said, “If the car is contaminated, what am I?”
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Time passed and her experience of 9/11 began to fade, somewhat. However, about five years later, Terry started to complain about losing her balance and falling for no reason. Once, while working at her job as a construction site “site safety manager,” she fell off a desk that she was sitting on and bruised her ribs. When I asked whether she had passed out, she said that she didn’t think so. I also asked why she hadn’t attempted to break the fall with her arm and she looked at me blankly. She had also begun to have trouble focusing her eyes. In one year, we went to the ophthalmologist at least 4 times for new prescriptions because she would complain that she couldn’t see clearly even though she had 20/30 vision.
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We began going to see different medical doctors, initially neurologists, to see if she had a tumor or anything wrong with her brain. One doctor sent her for a balance test and she didn’t do too poorly but still took 6 sessions of balance therapy. It didn’t help much; she was still falling. We then saw two different neurologists, each of whom ordered an MRI of her brain. They each reviewed the results and pronounced her to be fine, meaning they didn’t see any sign of a tumor or structural problem with her brain.
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But she wasn’t fine! New and different symptoms began appearing. Her judgment, which had always been so reliable and impeccable about nearly every detail, began to be unreliable. An example was when she went into our basement to retrieve something and neglected to tell me that water was pouring into the basement through the walls. When I went down to get something about 20 minutes later, I saw the water and yelled to her to turn off the hoses that were causing water to seep through the walls. When I asked her why she hadn’t said anything to me about the water or done anything to stop it, she told me, “I thought it was coming from the rain from yesterday.” However, the day before had been sunny and hot with no rain. She had made no connection between our watering the lawn next to the wall of the house foundation with a seeping hose and the water that was draining through our basement walls.
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Then, there was the time I had difficulty opening our trunk and noticed a notch in the metal strut near the back window. When I looked at our neighbor’s circular metal staircase, I realized that the notch on our car was at the same level as a dent in one of the steps. I called Terry to come outside and asked what had happened the last time she had backed into our driveway. She told me, “I hit the neighbors’ trashcans and it had made so much noise that they came out to see what had happened.” The only problem was that their trash receptacles were rubber, not metal – it would not have made lots of noise even if she had hit them. Rather, she had hit the metal stairs but hadn’t realized it. I didn’t point that out but said to her, “You don’t want to drive anymore, do you?” And she said, “No.” That was the end of her driving.
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During the summer of 2008, Terry was working at construction site in the Bronx. We would get up at 5 AM so we could leave Brooklyn at 6 to go to the Bronx for Terry to start work at 7. I would then drive into Manhattan to get to my job by 8 AM and I would work for eight hours and leave at 4 to pick her up at 5 in the Bronx. We inevitably hit traffic and would get back to Brooklyn at about 6 or 6:30, both of us being totally exhausted. We did this for several months until she was assigned a site in Manhattan which she could reach by subway. It saved me from driving for hours each day. However, I was terrified that she would lose her balance on the platform and fall into the train tracks. She didn’t, mercifully.
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In May 2008 we were able to have a doctor perform a PET scan of Terry’s brain. While MRIs show the structure of the brain, PET scans show the functioning of the brain. It was obvious from looking at the results that Terry’s frontal lobe was not functioning as it should. We would later learn that she had frontal temporal dementia.
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On 1 December 2008, I was working at my desk and received a call from Terry. She had been having difficulty walking. She had been working at a site on 42nd Street between 11th Avenue and West Street when the supervisor asked if she could “walk the site” as a site safety manager needed to do to ensure everything was safe. When she acknowledged that she couldn’t do it, the manager told her to leave. I told her, “It’s over. You’re not working anymore.”
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That day I applied to the Federal government to secure Social Security Disability for her. She never returned to the site and never worked again.
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In 2002 we had applied for long-term care insurance. I was denied coverage since I had had a stroke in 1999. The companies wouldn’t touch me with a 10-foot pole. Terry however was in perfect health at the time and was able to secure what I called the “Platinum Policy” since it was very affordable and had excellent annual coverage with no end term. That saved us financially.
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In June 2009, after seeing at least 10 different specialists, we finally got the diagnosis of Terry’s illness. She had Progressive Supranuclear Palsy or PSP. When she asked the doctor what the prognosis was, he told her, “We gave it away in the first word, progressive.” And he was not kidding – it progressed steadily over the four years until her death in December 2013.
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We didn’t waste those four years though. We went on 3 cruises, travelled to Europe at least 5 times, visited our timeshare in Aruba several times.
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We were able to have 24/7 care from 2009 thanks to the long-term care insurance. We married in 2011 on the first day that we were legally able to and her caregivers were honored guests at our wedding. We had 65 guests at our favorite restaurant and there was not a dry eye in the room as we walked down the aisle.
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During her last year, Terry had a feeding tube because she had such difficulty swallowing that she was in danger of choking to death. Our traveling stopped but we maintained as good a situation as possible. Terry’s home care aides went to Aruba with us and to other shorter trips within the states. They also made it possible for me to take care of myself by going out in the evenings with friends or by myself. As a result, I could come down the stairs each morning whistling and singing and be in a good mood with Terry. She was also on hospice so we had additional assistance and a nurse who visited every 2 weeks as well as volunteers who visited to read to her and bring music into the house.
Terry died on December 11, 2013. It had been a very long 7 years since the first symptoms had appeared.
