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My Mother’s Secret: Death From AIDS


[ Feature 1 Photo]
Illustration by Julie Lonneman

 


 

How Safe Is the Blood Supply?

AIDS (Acquired Immune Deficiency Syndrome) is a condition that depends upon transmission of a virus, HIV (Human Immunodeficiency Virus), directly into the bloodstream. This can happen primarily in one of four ways: through sexual intercourse, by using infected needles and syringes, from an infected mother to her unborn baby, or by receiving infected blood or blood products.

In March 1985, HIV screening of blood and blood products was begun. The blood transfusion which resulted in this woman's illness and death occurred in 1983.

All blood collected in the United States is now screened for six infectious agents: HIV-1, HIV-2, HTLV-1, hepatitis B virus, hepatitis C virus and syphilis. At the end of June 1992, the Centers for Disease Control and Prevention (CDC) had received reports of 4,959 AIDS cases resulting from receipt of blood transfusions, blood components or tissue. Most of these cases are due to transfusions received before March 1985.

HIV infections from transfusions of blood screened as negative for the HIV antibody have been extremely rare and have become progressively infrequent, even in areas with a high incidence of HIV.

 

 

To be HIV-positive is to wrestle with an illness that strikes fear into the hearts of others. This woman decided to keep her diagnosis secret from all but her closest caregivers.

By Janet Clark

 

 January 20: Death at the Door

 
January 22: Unclean

 January 26: Like a Baby

 
February 10: Wordless

 
February 16: Release

 March 11: Secret Burden

 April 20: A Quilt Square

IN MID-JANUARY, THE BREEZE blowing in from the bedroom window felt refreshing on my face as I sat on the bed after a long, restless night. I felt completely depleted of any physical or emotional energy. My mother and I had just left the freezing temperatures of Maine and had flown down to be with my father in their Florida home.

Since my mother was too weak to drive with my father, I flew down with her. Dad was shocked when he met us at the airport the night before. He couldn't believe how her health had deteriorated in just the few days since he had left home. I had stayed with her since she was unable to take care of herself. She had lost her sense of balance and kept falling, but she still wanted to go back to Florida.

I marveled at the beautiful palm trees in the front yard. It was such a welcome change from New England. As I walked into the kitchen, I heard my father talking to Mom.

When I entered her bedroom, I saw her tiny, frail body lying listlessly between her floral pink sheets. She woke up confused and disoriented. She wasn't the mother I had loved for so many years. She was losing her memory, her ability to speak coherently and her ability to walk. I was losing my mother to AIDS! She loved her Dogg, as she called a stuffed animal she treasured. After all, Dogg was one of the few with whom she could freely share her sorrow. Certainly, this silent mascot would not reveal the family secret that we had been concealing for the past two years.

Only a handful of family members knew Mom had contracted the virus eight years ago during a heart bypass operation. Now, instead of having the surgery increase her life span so she could enjoy her retirement years, she was living a nightmare and close to death.

I looked at her face, pale and drawn, but her large brown eyes stared deeply into mine. She whispered in a tired, worn voice, "Janet, you're precious. I love you."

I tried to hold back my emotions so I didn't break down in front of her, but I felt lonely, scared and desperate. I needed someone to hold me, to support me and understand what I was going through. But I couldn't do that!

My parents didn't want anyone to know about Mom's condition. They were afraid of what had happened to Ryan White and other victims of AIDS. My mother also worried about her grandchildren. She thought other children at school would make fun of them and tease them. Professionals and clergymen differed in their opinion as to whether to reveal this secret. I felt overwhelmed and frustrated, and my physical body was experiencing the consequences of concealing the fact that Mom was dying of AIDS.

For two years my two teenage sons didn't know their grandmother was HIV-positive. My husband, Ken, and I constantly whispered when they were in the house. We told them she was dying of cancer, but the constant secrecy was straining our marriage. We were both suffering without any support. Since I didn't have anyone else to share my sorrow with, I depended on Ken for consolation. He was hurting as much as I was.

After much discussion, we finally decided to inform our sons about their grandmother. Even though they were deeply saddened, they seemed to handle it well. They had been educated about AIDS in their health class in high school and were aware it was a virus that could affect anyone. I felt a tremendous sense of relief after telling them. At least we didn't have to whisper anymore.

That first morning in Florida we heard a knock on the door. One of Mom's neighbors came to the house to welcome her back to Florida. All morning, however, Mom had been talking incoherently and was not making any sense. I couldn't let anyone see her like this. I made an excuse and said that she was sleeping.

My poor father couldn't take much more! Up four to five times a night to help her to the bathroom and give her medication, he was totally exhausted.

I sat by her bed watching her drift in and out of sleep. My eyes burned with fatigue. My energy was zapped, but I was still trying to hold on.

January 20: Death at the Door

This afternoon we drove to the doctor's office. I waited impatiently while Mom was being examined. My heart pounded with fear. A few minutes later the doctor called my father and me into her office. Her face was somber. She had always taken a special interest in my mother.

In a very soft, gentle voice, she turned to my father and said, "I'm so sorry, but your wife is dying. She's in the last stages of the disease. It's time now for you and your daughter to try to make her last few weeks or days as comfortable as possible."

My father sat stunned by the news. Even though he knew AIDS was fatal, it was difficult for him to accept the final verdict of death. Tears trickled down his cheeks.

"Have you thought of the possibility of having Hospice help you?" she inquired. I had already thought of the idea and we made a phone call from the doctor's office. They would be sending someone to the house on Monday.

I thought of the long weekend we were going to have to ourselves. Since my mother needed more intimate care, the doctor and nurse recommended using rubber latex gloves when we were dealing with bodily fluids.

After our discussion with the doctor, my father and I went into the examining room where my mother had been waiting patiently in a wheelchair. I felt bad that we had left her alone for so long. Surely, she knew what we were discussing. As we walked over to her, I choked up and attempted to console her, but discovered my voice seemed paralyzed with immense emotion. I knew I had to gain control over my feelings. I didn't want her to realize how painful this was for me.

She looked so beautiful. I had washed and set her hair that morning, and she appeared so childlike, with a pleasant smile on her face. She didn't want to cause us any pain or trouble. That smile melted my heart! She was dying. I was going to lose her soon. How could I make her days more tolerable? She was plagued with constant head pain and no medication would relieve it completely.

Before we left the doctor's office, the nurse instructed us in the care of an AIDS patient and of the occasions when it was necessary to take extra precautions and use bleach to kill the virus. It was so horrifying! I prayed that God would give me the strength to know what to do and say to Mom.

I walked into the main waiting room and noticed a mother and daughter sitting together. It was obvious that the mother had overheard the discussion and instructions the nurse had given us. As I tried to maneuver the wheelchair and all the packages and pamphlets I was carrying, I accidentally dropped the rubber gloves on the floor. As we both stooped down to pick them up, our eyes met. "Here, you dropped these," she said as she placed her hand on my shoulder to offer her support and sympathy in the tragedy we were facing.

The tropical rain poured down relentlessly as we drove back home. Suddenly, without any quivering in her voice, Mom asked me, "How long did the doctor say I had?" My heart sank.

Knowing there was no comforting answer, I stumbled over the words, "Mom, no one knows how long any of us has to live, but the doctor did notice that you were weaker." I felt I wasn't lying to her and I knew that in her heart she was aware that it wouldn't be much longer. I didn't feel she needed me to reinforce that fact now.

January 22: Unclean

Today is Sunday. Dad went to Mass this morning while I stayed with Mom. The pain in her head was intensifying. I rubbed her head and stroked her arms. She seemed to enjoy that. Her hand kept reaching out to touch me. She spoke with garbled words.

"I don't understand," she said haltingly. "The doctor back home said I could live with this for many years."

"I know, Mom," I replied. "You have lived a long time after being diagnosed."

I could see she didn't want to give up the fight. She's so brave. Then with a worried look on her face, she said weakly, "I hope God isn't mad at me."

"How could God ever be angry at you, Mom?" I asked, perplexed.

In a soft voice she answered, "Well, I have not been to church in the past few weeks."

"But Mom, you're not strong enough to sit in church. God knows that," I said reassuringly. "He loves you so much and so do I." I kissed her on the cheek.

It was time for her medicine. Opening the pill bottle, I dropped a tablet onto the floor. I picked it up and placed it on the nightstand. "I'll give you another one. That one is dirty."

"It doesn't matter. I'm already dirty," she uttered sadly.

I turned my head so she couldn't see my tears. How could she ever think of herself in such an ugly manner? Society has treated AIDS as a dirty disease instead of recognizing it as another virus that is affecting our entire world. Because of this, Mom thought she was unclean and soiled for having contracted AIDS, even through a blood transfusion. Society had made her feel ashamed of her illness. I felt bitter and angry.

She was certain that if people discovered she had AIDS they would reject her. She was trying to protect all of us by keeping it confidential. It was causing tension, however, and my health was being affected by the stress and secrecy.

Initially, I believed that people would naturally support us. As I sat by my mother's bedside, however, I remembered the day I had lunch with one of my closest friends. The topic of AIDS came into our conversation. She didn't think facts about AIDS should be taught in public schools. I disagreed. After all, it was a health epidemic affecting all segments of society. She was a devout Christian and we had often attended church together.

"Pam, what if I had AIDS? Would you still be my friend?" I asked.

"Janet, I'm going to be honest with you," she responded, leaning over the table as she looked straight into my eyes. "I'd call you on the phone and wish you well, but I wouldn't want to be with you or hug you. I'm sorry, but that's exactly how I feel."

I remember putting my sandwich back on my plate and leaning back into my seat in shock. I sighed in disbelief. "You've been my closest friend for 12 years. How could you possibly turn your back on me?" I asked, hurt and confused.

She continued to repeat her view. "I'm really sorry, but I could only support you from a distance. I wouldn't want to be near you. I guess I'm afraid I'd catch it from you," she said.

"But the only way you could contract the virus would be through sex or blood products. You cannot catch it through casual contact like hugging me," I explained.

I tried not to overreact for fear she'd think I had AIDS or suspect that someone I knew had it. After all, we had just been talking about my mother's illness--which she thought was cancer.

I thought pensively, If this is how my Christian friends react, then how would my mother's and father's friends respond to her? Mom had heard dreadful stories of rejection and discrimination. She was too old and sick to fight people who wouldn't understand. I knew some would be supportive, yet there might be some people who would turn against them. But she needed that support from friends and other relatives who did not realize she had AIDS.

January 26: Like a Baby

I woke up at 5 a.m. A few minutes later I heard a loud noise in my mother's bedroom. I reached out past my father sleeping on the couch. Apparently, he hadn't heard her this time. It must have been a long night for him.

As I entered the bedroom, I saw her sprawled on the floor. "Hi, Doll," she said nonchalantly, as if she were simply resting in bed. I stood over her for a few seconds just staring at the pitiful body lying contentedly on the floor.

I went back to get help from my father. We lifted her and laid her on the bed. I watched as my father changed the diaper shield she was wearing. She had become incontinent. I had been the first one to put a diaper on my mother before we came to Florida. It wasn't easy for me to treat my mother like a baby.

During breakfast I tried to eat my cereal but the lump in my throat prevented it from passing down. I sipped my tea, trying to hold back my tears as she stared incessantly at me.

"I don't want you to fly home today," Mom said in a sad voice. "I'll miss you." Her head dropped down to gaze at the floor.

"I promise I'll be back, Mom."

She looked mournfully at me.

After I had dressed, I went into her bedroom and sat for 45 minutes as I stroked her head. Her eyes were glued to my face. Suddenly, she began sobbing. She had no words, just tears. I hugged her and said, "I love you, Mom."

The people taking me to the airport were close friends of my parents but were not aware of the tragedy we were experiencing, so I couldn't share my sorrow with them. I cried all the way to the airport.

February 10: Wordless

I knew this would be my last visit with Mom. When I arrived at their home, it was late but she was waiting for me. I stood by her hospital bed. "I told you I'd be back," I said, trying to be strong. I felt so weak!

My father encouraged her to talk, but dementia had caused her to lose the ability to talk to anyone. "That's O.K., Mom. I know you're saying, 'Hi, Janet,' in your heart." I rested my hand on her chest. "You don't have to say anything. Just be. I'm here," I reassured her.

February 16: Release

This morning I watched Jean, my mother's Hospice nurse, take care of her. I felt so grateful that Mom was receiving love from someone else who knew about her illness. She was dying with love and dignity in her own home. Jean whispered, "Be careful what you say in front of her because hearing is the last to go."

After she left, I sat by Mom's bedside gazing at the oxygen tank that was making her final days more bearable. I thanked God I was able to be with her, to hold her hand and just be by her side.

Before supper, my father went out to do some errands. I was alone with Mom. I leaned over her hospital bed with tears flowing down my face and said, "Mom, I know you can probably see things I can't. There's a beautiful place waiting for you. I want you to know that it's O.K. to let go whenever you're ready.

"Please don't worry about me, Mom. I'll be all right. I'll miss you, but I promise I'll be O.K. You've been a
wonderful mother and I love you
very much. Whenever you're ready, Mom, go toward the light." My voice was quivering with emotion, but I needed to tell her how I felt.

I saw her chest heave with a release of emotion. Her hand was entwined in mine. I only had a few more hours to hold her and to touch her physical body. I was flying home tonight to be with my family. The next time I would see her would probably be when she was in a casket. I wanted to memorize every facial feature, especially her sentimental brown eyes and her soft gentle hands.

She loved listening to her tape recorder. I played the song "The Wind Beneath My Wings." Her breathing was becoming extremely labored. Her kidneys were shutting down.

Mom was on her way to another land, a land of peace and love and freedom from suffering. How could I wish her to linger? I looked at her eyes, one half open, the other closed.

As I left her that night, I said, "Mom, remember I love you. We'll meet again in another place in another time. It's O.K. to let go." I kissed her on the forehead. Leaving was heart-wrenching and the most difficult thing I've ever had to do.

The phone rang at 1:15 a.m. on February 21. "She's gone, Janet," my father's voice cried. "She died in my arms a few minutes ago, but it was beautiful. I held her while she took her last few breaths. She's at peace now."

March 11: Secret Burden

I stayed with my father after the funeral services since we needed each other so much. I was still having a difficult time holding my emotions in and pretending. Lord, I prayed, please give me someone to share my sorrow with--and to understand the pain I'm going through.

The secrecy was destroying me. As I boarded the plane to return home, I noticed my seat was in the very last row. My eyes were red from crying at the airport. The woman sitting next to me knew something was wrong.

"Are you all right?" she asked sympathetically.

"My mother died two weeks ago," I said. She held my hand to offer consolation. She began telling me about a young man for whom she had just recently cared. He was a teacher who died of AIDS. I couldn't believe she was revealing this to me.

Wow, Lord, I thought, that was a quick answer to my prayer. There was no question in my mind that God wanted me to share my secret burden with this woman.

I leaned over close to her and whispered softly, "My mother also died of AIDS." Tears flowed freely from her eyes. We both cried as she comforted me during my long flight. She knew what it was like to watch a loved one die of AIDS and to fight the discrimination that sometimes accompanies it. As I gazed into the clouds, I felt so close to heaven and to my mom. She was indeed "the wind beneath my wings."

April 20: A Quilt Square

Shortly after I returned home I shared my secret with three close friends. They have been a tremendous support system to me. I still keep this a secret to many other friends whom I would like to tell because of a few family members' wishes. Fortunately, my father tested negative for the HIV virus.

I wanted my mother's memory to remain alive, so I made a panel for her for the Quilt Project which displays over 18,000 panels which stand for people who have died of AIDS. My mother's quilt was chosen to be on display at the AIDS International Convention in Florence, Italy. Hopefully, it will make a statement and touch the hearts of people who see it.

To protect our privacy, I only put "Mom" on it. In the corner of the panel I wrote the sentence, "It hurts to know you suffered in silence."

I pray that as people become more educated about HIV and AIDS, fear and prejudice will be eradicated from their minds and they will reach out in compassion as Christ did to those who were sick and scorned by society. Hopefully, others will not have to suffer in silence with such an agonizing secret as we had to do.

 


Janet Clark is the pseudonym of the daughter and author. She says, "Unfortunately, because of the social stigma and misunderstanding about AIDS, the names and places have been changed. It hurts me to have to do this, but I want people to understand the isolation and anguish people with AIDS--and their families--endure because society has made it difficult for them to be open about their illness."

 

 

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