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Susan's Story

My mom meant the world to me. All my life I felt lucky to have her as a mother. A time comes to mind when I was in first grade. About three or four children flunked a test and I was one of them. Our teacher instructed us not to return to school until our F paper was signed by a parent. I was devastated. I couldn't imagine how I could tell my parents about this. That night I said nothing to either my mom or dad. The next morning Mom drove us to school. My brother and sister had already left the car but I just sat there frozen. Suddenly I burst out crying and pushed the paper towards my mom. She signed the paper, patted me on my leg and told me not to worry about it. She never mentioned it again.  I remember that even at six I was thankful she was my mother.

She was an artist. She painted in oils and watercolor and I have many of her pictures in my house. She told me once that she found herself to be the most interested in her art when she had a loss in her life or if something was missing. I remember being touched when I realized that when I left home she started painting a lot. When my father died she painted one of my favorite pictures.

She loved to garden. Her gardens were always beautiful and full of blooms.  When I was a child she had converted a garage into a greenhouse where she raised orchids. When I was 12 we moved and she had a solarium built that was full of all kinds of gorgeous plants. I learned to love gardening through her and I have learned to see blooming plants through her eyes.  When I see a beautiful group of lilies I think "Oh Mom would love these!" And even today my blooming bougainvillea is appreciated with the idea of how my mother loved them.

She had five children. She had three boys and two girls. I was her youngest.  I always felt that I had something special with her.  That somehow we understood each other and had a special connection.  But the night my mom died one of my brothers sat beside me and said our mom had a way of making us feel special. He said when he would come visit her she had a way of making him feel like he was her favorite. And he knew that when I came to visit I felt the same way.  So maybe one of her gifts was being there with you and making you feel special and loved.

In May of 1999 my mother broke her hip while at a friend’s house playing cards. I can't even begin to tell you how I felt when I found out. There was so little I could do. Her rehabilitation was awful.  The therapist would come get her up and try to be gentle.  But my mom kept saying she was in awful pain and she was very disagreeable.  The therapy compounded her problems and made her worse. They began running tests since her progress was so poor.  It was during that time she was told she had bone cancer. Because she was 84 she opted to do nothing. She chose to have no treatment or even to have a biopsy to confirm the diagnosis. One of my brothers pushed for a pain specialist and thankfully that doctor did get her pain under control.

She ended up in a nursing home as she was bed bound and required help even to turn over. Her spirits were at rock bottom. She could not do anything without help. I couldn't stand that she was not in her own home and that the care she was receiving was not what I felt she (or anyone) deserved.  I convinced her that we could get her home.  I had spent the last 20 years as an Occupational Therapist and I knew that if we got her home we could work out the problems. She was discharged in June via ambulance with hospice as our lifeline. I had hired aides to help us.

To my surprise and complete delight it was much easier than I expected. Instead of going downhill she slowly improved.  The pain that she had before the diagnosis of cancer never returned with the same intensity. With her hospice nurse teaching her how to control the pain, she slowly was able to do little things. It started with just getting up into a chair, and then up for a meal. Within a month she was getting up daily and dressing and participating a little in life.  Not with the same energy as before, but I think she found enjoyment and pleasure in those last months. My sister Anne lived 500 miles away and made numerous visits on the weekends and short visits during the week.  My brother Bob lived across the country but spent weeks at a time visiting.  Two of her sons Chuck and Craig lived in town. I lived 1700 miles away but visited as frequently as I could and called her all the time.  Because she did get so much better her hospice nurse began to question the diagnosis. Her primary doctor questioned the diagnosis and even some of us wondered if indeed she was terminal.

Although she never left her home again, her tenacious spirit reappeared She made friends with her hospice nurse and social worker. Her hospice nurse told me she loved to visit her and always left her home with a song in her heart. Her social worker said she sometimes felt guilty visiting her because the visits were so enjoyable. She renewed her friendships with the people that lived close by and her lifelong friends continued to visit.  And even though most of her plants had died during her hospitalization, within no time her house and patio were full of blooming plants again.

It had now been 6 months since my mom's diagnosis. My brother Bob and his wife visited with my mother a month at Christmas time. I suppose they wondered if this would be my mothers last Christmas.  At the beginning of the visit they had a wonderful time. The three of them decided to redecorate her apartment. She enthusiastically looked through piles of wallpaper and flooring samples that my brother and his wife brought to her. But towards the end of their visit and when I had planned on visiting she caught a cold and felt lousy.  I planned a visit to coincide with my brother's since I had not seen him in several years. My mother was pleased that my brother (who is closest to me in age) and I were going to see each other. I think she wanted Bob and I to reestablish our relationship since she knew we both would be losing her soon.  So Bob and I and Lynda (his wife) spent a several days shopping, walking and visiting. In the evenings I'd spend time sitting with my mom and visiting.

On Sunday evening, one week before her death, my mother and I were talking and she confided in me that she wasn't thinking clearly and that her vision was failing. She asked me if I had noticed her decline. She told me I reminded her of someone but she couldn't think who.  I was disturbed by what she was saying but told her she was doing great with all things considered and I brushed it off.  It is the only thing I regret.  I wish I had had the courage to face the truth with her and to allow her to express her feelings.  Maybe it was her attempt to talk about what she knew was happening. That evening we did watch an Oprah show where people had makeovers. We were lying in twin beds watching and critiquing how good or bad the makeovers were.  I cherish that time as the last fun thing we did together.

The next morning she seemed very different.  She was holding a glass and fell asleep while she was lifting it to her lips. She dropped the glass and it spilt all over her. Her cold was worse and her breathing sounded congested. Apparently she had been up most of the night.  She commented that she wondered what it was like to die from not being able to get your breath.  I convinced her to go back to bed. That was the first day in months she had not dressed. The hospice nurse came over planning to discharge her from hospice care. She listened to her lungs and said she obviously was having a flare-up of asthma.  She said they would postpone the discharge until her breathing had returned to normal.  I told her that my mom wondered what it was like to die from not getting your breath. The nurse seemed surprised she would ask such a question and she said "We'd give you enough morphine that you wouldn't care that you couldn't breathe." My mom was reassured and said, "That sounds nice."

Shortly after the nurse left my mom fell asleep. She slept all day and her breathing sounded absolutely awful.  The nurse had called her doctor and he had called in a prescription for a high dose of prednisone as it had helped my mom's breathing in the past.  But this breathing was different. It sounded like the breathing my father had the day he died. Bob, Lynda and I stayed close by all day but she never woke.

That evening while my brother and his wife were at dinner I realized that my mom had been in the exact same position for 10 hours. I was horrified thinking that when she did awaken she would be so sore and possibly have a bed sore. So I decided to turn her on her side which was her normal position to sleep.  When I did she startled and jumped into a sitting position desperate for air. She signaled me to get her morphine because she couldn't breathe.  The hospice nurse had made it clear she was to receive pain relief whenever she wanted (it was part of her pain control program). So I got her a morphine tablet. She wanted another one.  I gave her that.  And another one.  She continued to demand morphine tablets so I told her I couldn't give her anymore until I talked to the nurse. I ran to the phone and called hospice. A different nurse answered but she told me to give my mom whatever she wanted. She took 9 tablets in all.  By the time her nurse got there she was breathing better (morphine is also a bronchodilator.) At about the same time the pharmacy delivered her prednisone. The nurse insisted she take it.  I knew my mother was dying and I wondered what the point was to give her prednisone.  My mother must have said something to the same effect and the nurse said, "Do you think you're dying?" At which my mother confidently said "YES!" and the nurse replied "You're not dying. You are having an acute asthma attack." Shortly after the nurse left I helped my mom back to bed and she fell asleep again.

I slept in her room that night and although her breathing sounded better there were long spaces between breaths. I just hoped that she wouldn't wake up as I was afraid of what her reaction would be if she did. I didn't sleep much that night.  I just watched her breaths. Sometimes she would only have 4 or 5 breaths in a minute. I prayed she would die peacefully.

Finally morning came and the nurse came early to see how she was doing. I told the nurse that I didn't think my mom should take any more prednisone. The nurse looked at me as if I was crazy. I explained that I knew my mom was ready to die and would be furious if we pulled her through this only to die a little later on. She again told me she was just having an asthma attack. She woke my mother up and my predictions were correct. She was furious to be awakened, furious that she hadn't died, and irritated at us all. Then she thought she had died, she thought we had taken her somewhere, thought we had done something to her. She refused any medication, lashed out at us, tried to get up, wouldn't stop talking. She talked of seeing too much, talked of how her children had betrayed her and how God had betrayed her. This went on for several hours.

All I can tell you is that it was the most disturbing time of my life. At one point she called me by name and she said, "I want you to go home and I don't ever want you to come back. This is something you will never get over." Of course I didn't leave and my mission has become to prove her wrong. I will get over it. And I hope I will help others with the sharing of our story.

She received several shots of ativan an hour a part and she slowly slipped into a coma.  Within several hours she was resting peacefully.  She died 4 days later and I was by her side. They told us she could hear everything that was going on.  I don't know if that is true. But minutes before she died something changed in the room. Her breathing didn't seem much different but something felt different. I went and sat by her and put my hand on her chest. I did not know if she was dying right then but I did sense that she could hear me. I told her I would be okay and that my brothers and sister would be okay too. I told her it was okay to die because she would always be with me. And then she quietly took her last breath and died.

Five days later I had a dream. I saw her and she looked very knowing and peaceful. I knew she was dead and I knew she was okay. She never spoke but she wanted to bring me peace. I thought "I know she is dead so I'm sure if I touch her I won't be able to feel her." But when I reached for her I could feel her.

I have thought of that dream about a thousand times since then.  Those days after her death were filled with such despair.  That dream helped me get through them.  Most of the time now I am doing better than those first days.  I will forever be changed and I will always have a missing piece here in my heart. But somehow I have started enjoying life again. I am in awe of nature and of life.  I miss her so much. But I do find comfort in feeling her here with me.  That feeling has slowly evolved. It's my human limitations that prevent our contact. It's like she's always been there but I have to learn to feel her presence. I find comfort in this poem by St. Augustine.

    “Love never disappears for death is a non-event.
    I have merely retired to the room next door.
    You and I are the same; what we were for each other, we still are.
    Speak to me as you always have, do not use a different tone, do not be sad.
    Continue to laugh at what made us laugh.
    Smile and think of me.
    Life means what it has always meant.
    The link is not severed.
    Why should I be out of your soul if I am out of your sight?
    I will wait for you, I am not here, but just on the other side of this path.
    You see, all is well.”

copyright 2000 Susan Peticolas Lahti

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