In early 2010, it looked as though life was beginning to settle down a bit, and things were going along fairly smoothly. My older son was expecting his second child and was partnered with a wonderful woman. It looked like they would soon take Tabitha, who I had been raising for him, into their family as well. My daughter and my other son were both working and seemed as though they were on a good track. Because I had lived through so many disasters, I used to say that I thought I’d experienced just about every bad thing there was to deal with, but I no longer say that. It seems as though I jinx it every time. Dick and I were still struggling some, but I attributed that to his having to deal with his cancer and the fact that he was often grumpy even without having to face that. He had wanted to break up with me when he first got his diagnosis. He said he wanted to live alone and not burden anyone with his health issues, but I assured him that I would stay by his side. I guess I didn’t realize how difficult he would make it for me to remain, but I was committed to seeing him through it. Then a new disaster struck.
On the day before Easter that year, my parents came to visit us in an old farmhouse we were renting. This was momentous. My parents never approved of my lifestyle. They never approved of most of the choices I’d made throughout my life and rarely, if ever, came to visit. They never came to my shows, whether they were rock, jazz or folk. They also never asked about my music or my career. But that day, they were full of praise for my home. My mom walked around the yard with me, admiring the gardens and making plans to come help me tend them. My dad kept talking about the house he grew up in remarking at how much this place reminded him of it. It was the best visit I’d ever had with them. As they were leaving, Mom told me she was looking forward to coming back and said she loved me. I cried as they left because this was such a turning point in my life. Mom never expressed her love for me and always criticized everything. I felt hopeful.
Two days later, I was packing up my music supplies after teaching a class when Dick walked in. I wondered why he was in town. I wasn’t expecting him. He’d come to tell me that my mom had suffered a severe stroke, was not discovered quickly and was now in the Emergency room in critical condition. We rushed over there where she was still unconscious. My dad and siblings were already there and waiting for me. The doctor explained that a large portion of her brain was affected. There was a treatment that could potentially bring her around, but they wouldn’t know how much permanent damage was done for a while. He explained that the treatment was a little dangerous and would cause her to be agitated, but if we could keep her still, she would have a good chance of surviving it. We told him to go ahead, and I spent the next hour or so singing lullabies to her to try to keep her calm as the medicine worked its magic. The music also worked its magic. As long as I sang, she lay still. When I stopped, she started twitching and moaning. After a little while, I couldn’t sing another note. I needed to get something to eat and take a break. I had worked until 6:30 pm without having had any dinner. It was now quite late, and I was getting lightheaded. I instructed my brother to continue singing while I was gone. He is not a singer and was uncomfortable doing it, but he did it anyway because we could all see how it helped.
After days in a coma, Mom finally woke up. The damage was horrific. She couldn’t walk or use her right side at all and had no speech. She also couldn’t recognize letters. This meant that she couldn’t point to letters to spell out what she wanted to say. She had been vivacious and outgoing, the life of any party with friends of all ages. It was devastating for her to go from being a grand communicator to having no ability to communicate. Dad was also devastated. She was his whole life. I always marveled at their love for each other. But she was also his caretaker. She did everything including caring for him after his much milder stroke. Close friends often referred to her as the “General.” She ruled the roost. Now, no one seemed to know what to do.
She was moved to a nursing home as soon as she was released from the hospital. She needed full-time care and physical therapy. One of the nurses in the hospital had mentioned a music therapy for treating aphasia to me, so I started looking into it immediately. Aphasia is the loss of speech after a brain injury. The idea behind this therapy was that you can rewire the brain to access language from the music areas. In order to do that, you sing every conversation to the patient. So, I did. I even got some of the aides and nurses to join in. The doctors wouldn’t even try, nor would the other members of the family. But the speech therapist also did it. She thought it was a great idea. Eventually, Mom was able to say a few words and even sang happy birthday.
I went to visit every day and mostly read aloud to her. Believe it or not, we communicated through ESP which had always been strong between us despite of our differences. When I lived far away, I would often lift up the phone to call her only to find her already on the other end. Now, she would be trying to say something to one of the staff and would be almost in tears when they didn’t understand, and I would instinctively know what she wanted. When I expressed it, she would nod and squeeze my hand. Both Mom and the staff came to rely on my being around. It was ironic that I was her main caregiver during that time after having been the black sheep of the family and left out of many family functions. Because I didn’t worry about being criticized, I started opening up to Mom and saying things that I never would have said before. I started telling her about my life and revealing things I’d never revealed before. At one point, I realized that and mentioned the fact that it was due to the fact that she couldn’t say anything. As soon as I said it, I regretted it, but Mom just laughed, nodded and squeezed my hand. It was such a difficult, draining but healing time. I felt as though it was a gift to both of us. We were able to heal our relationship before it was too late.
On her birthday, I brought Justin’s family, with their four-day old son, to visit her. She held Ethan for fifteen or twenty minutes. She was thrilled. I love looking at that photo of them. Tabitha was still living with me, though she would spend a few days a week with her dad. It was exhausting working in the mornings, spending all afternoon with Mom then getting Tabby from school and caring for her until bedtime. I also drove out of my way to pick up Dad, who couldn’t drive, bring him in his wheelchair to visit Mom and drive him back home, an extra hour of driving. I was burning out fast. Meanwhile, Dick was being more and more unreasonable every day. He refused to help out with meals or any extras. I often picked Tabby up from school and went back to the nursing home with her, so she could visit with my mom, getting home late and having to fix meals, catch up on chores and put Tabby to bed at a reasonable time. Then, one of Mom’s physical therapists came to me with distressing news. The insurance company was refusing to pay for any more sessions because Mom was not going to make any more progress. The therapy sessions were maintaining rather than improving. If they stopped them, she would revert with increased pain and discomfort. They had been watching me interacting with her during her sessions and wanted to train me to take over for them. The last thing I needed was another task, but how could I refuse? Mom didn’t like it either. The therapy was extremely painful. She would rather have quit, but then the pain would only have been even worse, so she agreed.
My birthday is at the end of the summer. When my birthday came, I decided I needed to get away. I need to visit the coast at least once a year to get rejuvenated. Having grown up on the Long Island Sound and spending much time along the coast of Connecticut then living on the west coast many years, I need to breathe the ocean air on a regular basis. So, we went to Maine for a few days. When I returned, I found that Mom had suffered another serious stroke and wasn’t expected to come out of it this time. We were all devastated – again. After consulting with the doctors, we decided to withhold food. By law, she would still receive fluids but would gradually waste away. They predicted that she wouldn’t last longer than a week at most. Ten days later, she was still hanging on. I continued to go everyday and read to her. I didn’t know if she could hear me, but I wanted her to know I was there. Then one day she was very restless.
I don’t know how I knew this was her last day, but somehow, I did. As long as I was there, holding her hand and talking or reading, she was calm. If I left to use the bathroom or just walk around for a bit, she would start thrashing about moaning. It got to be time to pick Tabby up from school, but I didn’t want to leave and knew I didn’t want to bring her back with me, so I started making phone calls. I couldn’t find anyone able to help out so, in desperation, I called Dick. He rudely refused to help out telling me that he had plans to go to the YMCA to take a sauna. I explained the situation and told him that his daughter had agreed to take her in the evening when she got out of work. I only needed a couple of hours, but he refused. I reluctantly left Mom, picked Tabby up and drove home. There was Dick. Relieved, I asked if he had come home to watch Tabby. But no, apparently, I had ruined his day by asking for his help and he was too upset to relax in the sauna. And yes, he was still refusing to stay with Tabitha until seven pm. I started to cry, and he eventually agreed.
As I drove down the driveway, a cloud of dragonflies flew in front of my car. I’d never seen so many of them in one place before, so I stopped and got out. They flew all around me, then one of them landed on my shoulder then flew over to my garden. I followed it and was standing in the garden when my phone rang. It was my brother calling to say that Mom had just passed. In Japan, it’s believed that when a dragonfly lands on you, it’s a soul visiting. I’d like to think that it was Mom coming to say goodbye. I’ve also heard that loved ones sometimes have a hard time letting go unless they are alone. Maybe that was true for her, too.
Later that evening, as we were saying our goodbyes before the coroner came to take her away, a hospice worker took me aside. He told me that his wife had passed the year before, and he was doing hospice work since then. He always asked his teenage daughter if she wanted to accompany him, and she always refused until that day. As they walked past Mom’s room, she heard Mom moaning and asked if she could go in. Hospice workers are not allowed to sit with patients who are unconscious unless there are family members there, but she was not a hospice worker, so he agreed to let her go. She held sat with Mom and held her hand as she passed. I thanked him, but he insisted on thanking me because it was such a healing experience for his daughter who had been struggling since her mom’s death. It was a reminder to me that things seem to happen for a reason, and good things usually come out of the bad. As ugly and heartbreaking as the experience was for me, it was also quite beautiful and healing.