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
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.
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
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
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!
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
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.
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.
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
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.
20: Death at the Door
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.
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
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.
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.
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
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."
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
"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."
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.
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.
if I had AIDS? Would you still be my friend?" I asked.
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."
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.
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.
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.
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'll be back, Mom."
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."
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.
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
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.
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.
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
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."
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.
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.
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.
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."
20: A Quilt Square
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.
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
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