End of Life

It began in the early morning hours of April 6, 2002 when the phone woke me shortly after one o’clock. It was my mother. She said, “I’m at the hospital. Your father died.” What I didn’t realize at that moment was that it was the beginning of my mother’s years of a long time dying. My father’s death was sudden. He woke up with a pain in his back. He told my mother to call an ambulance. He was rushed to the hospital. The doctor said he probably died in the ambulance. He had some minor heart issues, but seemed perfectly healthy. He was 74. After 53 years, my mother was alone.

My mother’s life revolved around my father. They married young. He was 21. She was only 19. He had a busy career in television news. She was the classic stay at home mom of the 1950s and 60s. She raised me and my brother. We lived in Brooklyn, where my parents grew up. They moved to New Jersey in the mid 1970s near where my wife and I were living. The city was changing, and my father wanted a shorter commute. It was difficult for my mother. She had never lived outside of Brooklyn. Her elderly mother was still living there. She had to learn to drive. They lived on an isolated cul de sac with little in common with the neighbors. My father traveled and she spent many days and night alone over the years of their marriage. But they were completely devoted to each other. My mother always felt there was no one like my father. All her social activity was through his business colleagues. They traveled. He retired at 58. Life was good.

Over the last 14 years, my mother became more isolated and lonely. They moved to a different New Jersey neighborhood in 1991. But most of the neighbors were working. My father was active in the community. My mother really needed my father for her social interaction. She didn’t make friends easily. She wouldn’t travel or volunteer to reach out and make a life for herself after my father died. As the years went on, my relationship with her became strained. I think she resented us moving away to Philadelphia a few years after they moved to New Jersey. I don’t think she felt we visited enough, and my twice a week phone calls after my father died often dissolved into her telling me how terrible the world was, challenging my politics, and yearning for “the good old days”.

In the last year, we could see her starting to fail. She resisted any help we offered for housekeeping, or a visiting aide to check on her and keep her company. It first really hit me early this year when I went up to bring her to an eye doctor appointment. I had told her about it several times on the phone. She called me one day, and asked me why I wasn’t there to take her to the eye doctor. I told her she was confused, and had the wrong day. When I did go up for the appointment, she was surprised to see me. She asked why I was there. I told her, and asked if she wanted to get dressed. She was wearing a stained shirt and some old pants. My mother never went out of the house without being properly dressed, and in full make up. She said no, she was fine. Just the look in her eyes told me she was in the early stages of dementia. She didn’t want to leave the house anymore. She was sleeping in an easy chair because she didn’t have the strength to make her bed. She was losing weight, which she couldn’t afford. She was eating fruit and yogurt even though she would tell me she was having fish every night. She was no longer the spotless housekeeper she had always been.

A couple of weeks later, a neighbor happen to look through her kitchen window as he was bringing the newspaper to her door. She was on the floor. She managed to crawl to the door and let him in. We called an ambulance, and she went to the hospital. Fortunately, no broken bones. But she was very weak, dehydrated, and the dementia was getting worse. After several days in the hospital, she spent a month in a rehab facility. They put her through therapy. She was able to walk with the assistance of a walker. But she became more withdrawn and incoherent. We knew she couldn’t live alone anymore, and needed 24 hour care. We discussed a nursing home. But after some disagreement, my brother found a live in aide through my mother’s financial advisor. Natalie was an angel of mercy who started caring for my mother in the rehab facility. She then went home with her, and lived with her 24 hours a day, 7 days a week. In seven months, I think she took a couple of days off. She is that rare person who shows compassion and kindness for the most helpless among us.

The last seven months we watched the painful decent. My mother became closed off in her own mind. She would show signs of obsessive compulsive behavior. She couldn’t carry on a conversation, had trouble hearing, and showed no interest in anything. In July, Natalie noticed she was losing weight, and was having trouble keeping food down. She went to the hospital for an endoscope. A tube was put down her throat to see what was causing the problem. She looked helpless and frail in the hospital bed waiting for the procedure. I’m not sure she knew what was happening to her. About six o’clock that evening, the doctor came into the small waiting room where only Natalie and I were waiting.  The receptionist had gone home. He said they found a small tumor on the bile duct from her liver to her gall bladder. It was likely cancer. I asked if they would do any further surgery. The doctor said if it was me or him, they would remove the gall bladder and do chemo therapy. But we could take home and make her comfortable. I knew we were closer to the end.

She was extremely weak. She had trouble walking even with assistance. Once she was home, she remained upstairs in her bedroom or TV room. We had a chairlift installed on the stairs, but she only used it a few times. The world was closing in on her. A visiting nurse and a therapist came for a while, but she was afraid to walk. When I went to see her in late July, she was sitting in the TV room. I kissed her hello, but she had a vacant look in her eyes and did not speak. An aide came to help Natalie give her a shower. I went downstairs. I could hear them trying encourage her and calm my mother’s fear of getting up from the wheelchair. After the shower, she sat in a chair as Natalie fed her apple sauce and yogurt. We got her up out the wheelchair onto a walker to try to get her to walk into the bedroom for a nap. She was rigid with the fear of falling. We got her to the bed. Natalie laid her down and straightened her legs. She fixed a pillow and pulled a blanket up to her chin. My mother closed her eyes as if she wanted all this to end. I kissed her forehead and left.

In mid August, we had to meet with her lawyer at her home to sign some legal papers as we prepared for her passing. She was well aware of these matters which had been set up years in advance, but she had to sign her name. My brother had to guide her hand to make a crude signature. She did not speak. As my wife Maureen and Natalie were helping her on the chairlift to back upstairs, she smiled at Maureen.

When I went to see her on September 1st, she was lying on a recliner with her eyes closed. She was very weak and pale. I put my face close to her’s and said, “How are you doing, Ma?” She answered, “Better now”, as she touched my face with her hand. She looked into my eyes and seemed to understand who I was, and was happy in her own way to see me. Her leg was swollen. She was taking medication for it, but she wasn’t able to walk anymore. As she sat there, she was framed against the window looking out on a sunny day in a world lost to her. There was a picture on the table in front of the window of her and my father smiling, a moment frozen in the good times in her life. She was on hospice care now. Margie, the hospice aide, painted my mother’s nails. My mother always took care of her nails. They were always long and polished. She watched as Margie carefully applied the bright red polish. I imagined her thinking of how they looked when she was younger. Margie was very precise, and even used remover to wipe away the excess polish. It was a pure act of compassion. At one point, Margie turned to me and said, “You look like her.”

On September 8th, I called and Natalie put my mother on the phone. She usually just listened as I would ask her how she was doing. But, when I said, “I love you, Ma.” She responded, “I know you do.” She didn’t say, “I love you too.” But the answer was the most coherent I had heard from her in months. It wasn’t just the usual “yes” or “no” response. For a brief moment, she seemed to come out of herself and recognize my feelings. I can never remember us at exchanging, “I love you”. My parents just weren’t that way. It was understood. It didn’t have to be said. Since it was over the phone, I couldn’t see the look in her eyes. They usually seemed vacant and searching at the same time as if she was trapped in her own mind and couldn’t find her way out.

In mid-September, there were phone calls and texts about my mother unable to keep any food or liquid down. The hospice nurse was called, and said my mother should only be on liquids. But after additional calls with the doctor, they decided she can’t handle even liquids. Natalie could keep her lips wet with a swab. I went up to see her on September 19th. I could tell the end was near. She was in a fetal position in bed. Her white hair splayed across the pillow. She was extremely thin. She doesn’t seem aware of her surroundings. The hospice nurse came, and said her respiration was up from 22 to between 24 and 28, and put her on oxygen. I asked nurse how long my mother could continue without any food or water. She said seven to fourteen days. She gave Natalie morphine to use if my mother started to have trouble breathing. Left unsaid, was that it would also help her slip away.

I stayed overnight in a nearby motel, and stopped again to see her on the morning of September 20th. I stroked her head and told her everything would be okay. She opened her eyes. I kissed her forehead twice. I leaned over close to her to tell her I loved her. She moved her head up slightly. Natalie, who sitting at the foot of the bed said, “She’s trying to kiss you.” I put my cheek next to her lips and she gave me a soft kiss. She then closed her eyes and mine filled up.

Three days later on September 23rd, Natalie texted that my mother was breathing quickly. I called my brother who was there with the hospice nurse and aide. They gave her some morphine, and he said he would call back after nurse checked her. At 3pm, with the sun shining on an early fall day, he called back and said she was gone. She went peacefully, without any pain. Her long wait was finally over. We all want to believe in heaven, and hope we will see loved ones who went before us. She’s been wanting to run into my father’s arms for years. I know he’ll be there waiting for her.