I had always said I was going to spend my 40th birthday on the beach in some tropical locale--Bermuda perhaps. I was determined not to be anywhere near friends and family who might feel compelled to send me black balloons, call my age in to the local radio stations, or put some dreadful childhood photo in the paper with the inevitable caption "lordy, lordy, look who's 40". No, I would be miles away, ensconced on a glistening beach, sun warming my body, as I listened to the waves rolling to the shore. That was the plan I had looked forward to for years, but that was not what happened.
During the fall of 1994, we began to notice that there was something wrong with Mom. Her voice was starting to sound funny, and she was having difficulty walking. She dismissed our concerns, citing sinus problems and arthritis, and we really wanted to believe her. But it never cleared up. She never had a day when she sounded normal, or her leg did not give her trouble. Then she made the offhand comment that she found it difficult to walk uphill. At the time, that meant nothing to us, for we had come to our own diagnosis--stroke. What else would explain the slurred-sounding speech and difficulty moving one side of her body?
The problem was getting her to see a doctor. She refused to go. Flat out refused. My sisters and I all begged her to go. My father tried too. He would draw me aside when I was visiting there, and ask me what we were going to do about her. I honestly did not know. Meanwhile, her sisters and brother were also contacting us, asking us what was going on, and didn't we think Arlene should see a doctor? We finally enlisted the help of Mom's younger sister, Sandy. She came down in late October to go to a funeral with us. I remember standing ahead of Mom in line at the funeral, talking to Aunt Sandy about our concerns, and feeling Mom's eyes on me. She knew we were talking about her. Especially since we had to leave the receiving line and sit down because Mom could not stand any longer. Afterward we went back to Mom's and the intervention began. My mother was so angry at us for dragging Sandy into it, but she did listen, and had to finally admit that yes, she had promised us all she would go to a doctor if she didn't get better, and yes, she hadn't gotten any better. Sandy told her she was scaring us all to death, and offered to take her to her own physician.
My mother was not a mean person, or someone who was difficult to get along with. But Mom had a stubborn streak in her, and for a slender woman, she could intimidate the biggest member of the family. She had always run the show and done a superb job of it. Going against her wishes was something one did after careful thought of the consequences. Mom never made an idle threat in her life. If she said "do that again and I'll spank you" and you were foolish enough to do it again, you got spanked. Mom made all of the decisions and handled the family finances, and until she got ill, my father never even signed a check. This was the woman who's will we were now trying to bend to our own. It was an uphill fight.
Mom finally agreed to see a doctor. Only she went to see a local physician without telling us beforehand, a doctor that none of us had any confidence in. He listened to her then concurred with Mom's diagnosis. A month later, her voice was worse, her walking had deteriorated more, and we were once again begging her to see someone else. It took my younger sister, Donna, going to Mom, and getting on her knees and crying, before Mom would agree to a second opinion. Donna took her right away, before she changed her mind. They discovered that her blood pressure was out of whack, and more ominous still, that her toes and feet were purplish and cold. She was sure that the blood pressure medicine would solve everything. We all hoped so too, but after a few weeks trial, she returned to the new doctor, no better than before. The new doctor made a call and Mom was referred to a neurologist.
Donna and I went with Mom and Pop for the consultation. By that time, she had fallen a few times, so we insisted on getting a wheelchair to bring her from the car to the doctor, and she surprised us all by agreeing without a fight. The doctor looked her over carefully, then scheduled her for an EEG, reserving his suspected diagnosis until he could get the test results. I called my older sister, Diane, who lives in Texas that night, and we both said we had a bad feeling about this.
Pop and I took Mom for the EEG. Before she was even dressed afterward, the doctor said he was prepared to confirm the neurologist's diagnosis. He would not tell us what that was, so we made an immediate appointment with the neurologist. It was now late December. In just two months, her health had deteriorated at a frightening speed, and we were all really frightened of what we were about to find out.
Once we got into his consultation room, the doctor looked at my mother with such a look of compassion and anguish that I will never forget, then said, "I am so sorry to have to say this, but you have ALS". My mother said "Oh no", and it was obvious that she knew what he meant. My sister, father, and I did not. We looked at him helplessly, and he began to describe amyotropic lateral sclerosis, more commonly known as Lou Gehrig's disease. I had him write down the name so I could research it later, because my mind could not take it what he was saying.
He told us it was a very progressive and fatal disease. No cure, no treatment. She would lose her ability to move, to eat, to talk, and eventually to breathe, as the nerve endings to her muscles died and messages from her brain would no longer get through. I can still recall vividly the shock of hearing this, of hearing these terrible words and looking at my mother, sitting stock still, pale, and knowing that these things would happen to her. To her! My stubborn mother, who I realize now must have known in her heart that her condition was grave, and who fought so hard to postpone having to find out just how grave it truly was.
She cried as we wheeled her out to the car. We all did. Once we got home, she insisted that Donna and I call everyone in the family to let them know. We made one call after another while she sat at the breakfast bar, crying, occasionally pounding her fist on its top. The only person she tried to talk to was Diane in Texas, and the sight of her weeping, gripping the phone in her thin hand, still tears at my heart today.
We knew nothing about this disease, but we learned fast. The deterioration in her leg muscles was going to continue unabated, spreading into her hands and arms, until she was unable to move anything but her eyelids. The muscles in her throat were going to go too, so that she would not be able to talk, and most significantly, she would be unable to swallow food or drink. Before that stage, a tube could be surgically placed in her stomach, through which we could feed her liquid meal replacements. She could also have a ventilator inserted into her throat to breathe for her as her chest muscles failed. ALS patients lived from two to five years, we read. If they did those things.
My mother was not only stubborn, but very brave. She had always made the big decisions in the family, and now she made two very difficult decisions that none of us could have made for her, and she never wavered in her determination. She said no to the food tube and the ventilator. Having always been an active woman, she could not face the idea of lying helpless in bed for years, hooked to a machine that breathed for her and being fed through a tube. She told us she was going to enjoy what time was left to her, and incredibly, she did.
My sister flew up from Texas once a month to visit her. My brother, Mike, who lives in Georgia, was able to make a second trip in early May, so he got to see her twice. Other relatives came to see her often, and the neighbors brought flowers and food. She got cards from people she had not heard from in years. Donna and I are divorced, yet our ex-husbands came to see her too. Our family's hairdresser came to the house once a week to do Mom's hair when it became impossible for her to go to the shop. Mom soaked up the attention and love as only someone who knows their time is truly limited can. And daily she deteriorated physically.
Donna, Aunt Sandy, and I split up the weekdays, so that there was someone at the house with Mom and Pop almost all of the time, and so that my father could get away once in awhile. He needed those breaks. Caring for Mom became a 24 hour a day job for him. By the time the boys came in February she was unable to talk anymore. She was still walking with a quad cane, but very precariously, and we all held our breath whenever she had my father lead her into another room.
We had called the county nurse to come visit, and they had arranged for a speech therapist to work with her to preserve what she had for as long as possible. We went to the neurologist for the last time in late February. He said there was nothing more he could do. He told me she would be "incapacitated" within six months. With that prognosis, we contacted hospice. She joined the hospice program in mid-March. One of the first things they did was advise her to give up trying to walk, to save her strength for writing messages to us, doing her crossword puzzles, and other activities she enjoyed. We got a wheelchair for her to use at home, and we were all relieved that she was no longer trying to hobble along on her increasingly weak and shaky legs.
She began giving us things which were in her will. She wanted to see us take them home, and although none of us wanted to, we accepted what she gave us because we knew it gave her comfort. She made us discuss funeral arrangements, telling us what dress she wanted to wear, when the calling hours and funeral should be, and that people should be encouraged to make a donation to hospice in lieu of flowers. She told my father he should marry again. She began to do things she had never done before. Before I would leave her, I'd always hug and kiss her, then she would put her hand against my cheek and look right into my soul. The love in her eyes, the things she could no longer speak, became imprinted on my heart through the touch of her hand. She did this to all of us, and it was very powerful.
Her legs were going fast. Her feet were cold, and the chill was spreading up toward her knees. It began to be more and more difficult for my father (who was 72) to lift her into the wheelchair. She could not get comfortable at night, and their nights were turning into endless bouts of arranging her as best he could, her crying because it was not right, crying because she hated not being able to even roll over on her own anymore. By April she was having trouble writing.
I had decided that Bermuda would have to wait. I could not spend my last birthday on which my mother would be alive hundreds of miles away from her. My family knew that this occasion was not one for 40th birthday jokes. Donna and my nieces met me at Mom and Pop's for dinner and cake. Mom could barely swallow. Watching her struggle, sometimes choking, to eat my birthday dinner broke my heart. She was in pain, yet she tried, for my sake, to cover it up. She could not say "happy birthday", although she did write it. Everyone tried to pretend it was the usual family party, but we all knew that it was not.
Mike and Diane came in May. The hospice nurse had called me just hours before Mike and I were headed to the airport to pick up Diane. She wanted me to know that she was seeing the signs of approaching death. She said Mom had that look in her eye, and that we needed to know it was a matter of weeks now, not months. On the way to the airport Mike started talking about trying to get Mom into an experimental program someplace, and I had to tell him what the nurse had told me. But really I think we all knew already. She had failed too fast to last much longer. She could barely drink the liquid meal replacements. Because the ALS was spreading so quickly her muscles were spasming and she was in constant pain. We were told there would be no pain, but it was not true. The hospice nurses kept increasing her medication, but like the princess and the pea, she could feel the slightest crease in her skirt and it bothered her. We got a hospital bed set up in the living room for her. She fought getting into the bed, but finally did when the hospice nurse made her (we could not do it). She knew that once she got in the bed, the end would be near, and she was right.
The worst days started after Mike and Diane left in May. Diane was planning on coming back at the end of the last week in May, for a family reunion which was supposed to be at Mom's. I know now that Mom had agreed to the reunion back in the winter because she hoped to have a chance to say good-bye to everyone. Her muscles were failing fast, and Mom's anxiety level increased so that she was agitated all of the time. The nurses tried several different medications for her, and none seemed to work. She moaned constantly, clutching at us, trying to pull herself out of the bed by holding onto us, pleading by pointing a shaking finger at the reclining chair to be put there to sit.
My father was exhausted. He had lost 20 pounds, and his back was hurting from lifting her so many times and for so long. She couldn't bear to let him out of her sight, and we were all becoming worn to a frazzle. She was so terrified. Her eyes were wild with fear and it broke our hearts to listen to her moaning and watching her clutching at the bed rails, trying to pull herself upright.
The hospice nurses told us it was a matter of days. We talked together, reminding them of what Mom had told us months before. She had been very clear that she wanted to die at home, and to be without pain or unnecessary anxiety. The morphine was not working. Other drugs that were supposed to calm her out did not dent the ceaseless anxiety. We asked that she be put on thorazine, which we were told would render her unconscious. No more pain, no more anxiety, no more moaning. Her mind could then have the peace it needed to prepare itself to depart this world. We called Texas to get Diane's opinion. She said yes, let's give Mom some peace, so we began the thorazine. Diane flew home that night.
The nurses told us the thorazine would knock her out within a few hours. Mom stayed awake for 16 hours, until Diane walked through the door, so that she could see her one last time. Then she slipped into unconsciousness. The quiet was disturbing after the melee of the previous days and weeks. We spent the next few days outside mostly, sitting in lawn chairs outside the back door, with the portable phone, checking on her, caring for her, watching her sleep, and seeing her at peace at last.
I sat up with her all night long on May 21, until 6 am when my father took over. I slept for a few hours, and was awakened by the voices of a visitor. I am glad now that he came and woke me. She died at 10:30 a.m. We were all there, and so were two of the hospice nurses. When she died, it was quietly and without any fuss. The nurse was bathing her. She turned away to pick something up, and when she turned back Mom was gone.
There is no easy way to lose a parent. My father died in 1968, just a month after my 13th birthday. He died in the hospital and none of us was with him. Mom never spent an hour in the hospital, and died with her family all around her. Caring for a parent until they die is a terrible and wonderful experience. It is nothing like one might expect it to be. Hospice is great, but they can only be there just so often. Most of the responsibility falls on the family, and it is a heavy burden. We did things to care for her that none of us thought we could possibly do. We were there at all hours of the day and night, trying to find a way to comfort her, to relieve the pain, reassure her, soothe her fears--whatever that night's crisis was.
People say we gave her a tremendous gift. Perhaps that is true. Mike told me recently that her gift to him was to reunite us, to make us a family again. We had drifted so far apart, until her illness brought us all back home again. Only then did we realize that our family was the most important thing in this life, and that in the end nothing else really matters.
My 41st birthday was not spent on the beach at Bermuda. I had thought about recreating that fantasy this year, but the plan never took on any sense of urgency to me. Donna and I went shopping and to lunch, and Aunt Sandy took me to dinner. Pop came too. I wish Diane and Mike could have been there, yet now that we have reconnected, it seems they are not really so far away after all. My birthday gift this year was as Mike said, to be with my family, to be surrounded by love.
Copyright 1996