In Momma's Mind

"Lewy Body, what in the world is that?" I asked the nurse at the station across the hall from my Mother's room. The nurse looked up at me from her desk, and with a quizzed look she said, "I honestly don't know. The doctor wrote that on her chart. I will need to run some reference on it and find out what type of disease it is."

My Mother has always been, a small, petite lady with a larger than life moral standard.. She is of the Cherokee background, and has pretty brown eyes, high cheek bones, and in years past, blue-black hair. Her skin is soft olive. Beautiful? Yes! In more ways than her physical beauty.

Momma and I experienced a lot of wonderful things together. We took vacations, we shopped until we were to tired to drive home. We, laughed, we played, we told each other secrets. We cooked and baked together. And Momma helped me raise my only child, my son. He was the ray in her sunshine. There were times,I would leave Momma's house and go to my home. In the middle of the night, I would get in my car and drive back to her house. I'd sneak in, find the couch in the dark. On that couch, I felt safe and secure. Momma would find me the next morning, asleep with my son cradled in my arms.

I suppose, as most young people, I never gave a thought to my mother getting old. She was a strong lady. She was handicapped, most of her life. That handicap did not hinder her activities. The family, and friends brought their problems to Momma. Somehow, she found a way to solve most of those problems. She loved children and helped raise many of them. She ran a baby sitting service out of her home.
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My son and I moved back south when he was in junior high. We were four hundred miles apart from Momma. Many times, I would drive to Ohio, pack her a bag and take her back home with me. She stayed months with us. My son and I enjoyed her being there.

I married and got divorced. My life was in a tipsy-turvey mess. I went home to Momma. She was not happy for my dilemma, yet, she was happy I was with her.
My job required me to travel. I would leave home, not return for two or three months. Momma was always glad to see me. She would have that special meal fixed for me, that I requested on the phone, before arriving at her house.

I moved back to Tennessee to attend an extension program at a school there. Things were fine with momma when I left. She did her own house work, and continued to plant those beautiful flowers and rose bushes.
I became involved in the education I was seeking, and neglected to keep in contact with Momma as often as I should have. She wrote me letters, and would send me a little check to carry me through. I have a heavy load of guilt today. I should have called her more often. Money was tight for me. I could not make the trip to visit. I could have put the books aside for a short while and talked to her on the phone more often. At the time, I thought she was fine. When I received her letters or spoke to her on the phone, she did not complain any more than her "old age" normal complaints. I suspected nothing. Now, as I think back, I was in denial. She had symptoms. Bouts of forgetfulness, loss of word, trying to remember someone's name that was familliar to her. She at times twisted her mouth in a strange way when she was stuck on a word. And the severe pain. She would be sitting, standing, cooking, we never knew when it would hit, and all of a sudden she would grab her head, and moan, showing signs of pain. Are these symptoms of Lewy Body? What are the symptoms? I cannot answer that. I have many questions. No one seems to have the right answers.

Of course, she always asked me to come back home. She used little techniques to attract me back to her house. For instance, she knew that I wanted a Computer. Something that would not fit into my slight budget. She called me one day on my way home from school, and told me she had a surprise for me. "What is the surprise," I coaxed her. She told me she had bought me a computer. Also, that I would have to come home to get it.

I made a call to my Momma in September,2004. It was Sunday, I knew that she always attended church services. I waited to make my call, giving her time to return home. I called three times. I did not get an answer. I thought perhaps she had gone with a friend, as she sometimes would do. During the day, the thought pressed on my mind that something was just not right. It was late in the evening, but I felt an urgency to try my call again. The phone rang several times before she answered.

Momma,, where you been?

"Oh, I am so sick. I cant breath."

"Call 911. You need to go to the hospital."

"No, I 'll wait until tomorrow when Roger, (my brother) will be able to take me."

"Momma, please go, I love you more. Goodnight Momma."
I felt helpless. Being so far away from her in her time of need. I could tell she was not feeling her best, however, I did not know what the long drawn out consequencies would be.

The next evening, I busied myself around the kitchen, cleaning up after my supper. My brother rang my phone. "Roni, I called to tell you mom is in the hospital with pneumonia

At her age, I knew there could possibly be complications. "I'll be there as soon as possible." I told my brother. I tossed a few things in my car and drove to Ohio. I arrived there in the wee hours the next morning.

Exhausted after driving through the night, I went into her room. The sun was just cresting in the east, and through her closed blind slats, I could see how thin and frail she had suddenly become. She had dark, discolored circles under her eyes. Her breathing was unsteady and she wore an oxygen mask, strapped to her face. I sat down in a chair beside her bed and watched her sleep. When she awaken, she lifted those frail, thin arms toward me. I eased myself down on her bed and allowed her to hold me. "Did you see how I fixed the little bedroom?" She asked me. I had stopped by her house on my way into town. As always, the house was immaculate. I also noticed that she had re-done the little bedroom, in her favorite color. Which was Sage. Being in denial, I told myself, she must have felt great to do all the work she had done to the bedroom. "Yes, Momma, it looks really pretty." She smiled. The little room she had put together, and decorated,adding all her special touches, Soon would be torn apart in order to allow her hospital bed, and the necessary equipment that was needed to make her comfortable while at home. She would also spend the biggest part of the day in that room. It was not the pretty room she had been so proud of completing just before the onset. Everything she had so painstakingly done to the room, was forgotten.

She spent several weeks in the Hospital. At one point she was placed in the ICU. Her mind began to slip while she was in the unit, and we contributed the forgetfulness to her medication. But then, she began to hear voices, and see things that just...... were not there.

One of her many doctors, a Neurologist, informed my brother and I that our Mother had Lewy Body Dementia. It is a fairly new discovery. A bit of Alzheimers seasoned with Parkinsons Disease. He informed us that, she would not be getting better. There is no cure. We were devastated. Why our Momma? So many Why's. So many unanswered questions.
My mother went into the hospital with pneumonia. While she was there, she contacted every "terrible" illness known to man kind so it seemed.. She developed a yeast on her lungs. Then a Pseudmonas. We would see her fine one day, and the next she would be near death. Her thin veins collapsed from all the blood draws and IV's. She refused to eat. It seemed to us she had given up the will to live. I believe she did. But, God knows best. He has kept her here for a reason unknown to us. We marvel at knowing she is still struggling to remain.

Momma was never the same after leaving the hospital.

Yes, Momma is still living. She now requires around the clock care. We tried, keeping her in her home. The family took turns going in and caring for her. It became too dangerous for her. Lewy Body Dementia creates episodes of.....euphoria, for a choice of a better word. The episodes can last for hours, or for days. Or perhaps, for always. Once she comes back to reality, she does not remember the episode. Lewy Body Dementia....hummmm. It is said, that once the patient bcomes free of the episode and returns to reality, the change is so rapid, that one would think it was a "pretense." One moment she knows who everybody is, the next moment, she could slip into her world. She remembers names. She don't associate the name with the face during an episode.

My brother and I together took her to the home. That morning still breaks my heart, when I ponder, as I often do. I noticed her looking back toward her house when we pulled out of her drive way. It seemed to me she was saying good bye to her home. A home that was her heart. She loved that house. Her love abounded, inside her home and outside as well.

She adapted well to the change at the Nursing Home. She likes the people she shares the big home with, as well as the staff. Being the friendly person she is, she made new friends. She now knows most of the people by name. If one passes away, she don't remember them. That is a blessing.

Other than her having to be placed in the home,I believe the hardest part for us to accept is, when she does not recognize us. She will ask who we are, and talk to us like we are total strangers. It broke my brothers heart when she called him,"Momma." He fell to the floor on his knees and sobbed. Momma thought he was her mother. I would have never in a life time dreamed that Momma, my Momma would be in this helpless state that Lewy Body has left her in.

I visited her on Mother's Day. Thank God, she was in her right mind. The visit I made prior to Mother's Day, she was not alright. She was talking about things we knew nothing about. I knelt in front of her wheel chair. She looked at me with hollow, distant eyes. "You have a pretty smile." I thanked her. "Now tell me who's daughter are you, I can't remember. Are you Ruby's or Jessie's daughter?"

"Momma, I am your daughter." I had a lump in my throat that I kept trying to swallow down to keep from crying.
"Oh no honey, my daughter is little See here she is behind my chair.I'm going to give her a spanking if she don't quit that squalling." She turned to grab at her little girl behind the chair. She looked at me, or was it through me?

My heart broke. My own Momma did not know who I was.

I had to return south to my home. I dreaded saying good bye to her. I went to her and gathered her up in my arms and told her I loved her. I was trying to keep the tears that were surfacing from falling. When I held her, I did not get a response. It seemed that she had been stripped of her emotions.When I hugged my momma, she always hugged me back with a "real tight" hug. I could no longer hold the tears back. I began to sob.uncontrolably. Seeing my Momma in this condition was more than I could bear. I don't believe she knew I was crying. I held her for a while, and told her I would be back . She looked at me through her aged, blank eyes and said, "Honey, you don't have to go, I thought perhaps you could stay and have supper with my husband and I." My Daddy passed away over thirty years ago.

When I left her room, I could not contain myself. I released the the tears and mournful sobs. I thought my heart was going to break in a million pieces and crumble to the floor.

I miss my Momma so very much. The talks we had, the secrets we shared, the laughter, the fun times. I miss her advise. Her phone calls. I miss.......everything. More than anythingelse that I miss. I miss my Momma. I would trade any possession I have in this world, if I could turn the pages back, just for a little while, and have my Momma back. I never gave thought to the loss I would feel. I thought she would live on forever. At least that was my hopes.

In Momma's mind, I wonder if she knows how very much I love her. I wonder if she loves me back. In my Momma's mind, does she miss all the good life we had together. Does she remember the family getting together at her house for a wonderful Christmas meal. Does she remember my brother and I growing up. I hope she only remembers the good times. The strong hands that tied my shoes, dried my tears and combed my hair. Those hands are now twisted and crippled. The love that she so freely gave, not only to me, but everyone she came in contact with, has now been snatched away. Taken!
It seems to me, that Lewy Body is no more than a thief. He comes in through the minds door, unexpectedly,like a robber and steals the mind of his prey.

The condition is cruel, heartless, ruthless! And I have been informed, that only after the Lewy Body patient dies, will the research be availiable to determine if that patient truly did have Lewy Body. One more question, if it is only after death, then tell me please, why my mother, who is still living,has been diagniosed with it. Too many questions, and not enough answers. Why can't a doctor with the expertise, take the time to explain, without all the medical jargon, what Lewy Body is all about?

My prayer is, that if Momma has any emotion. Any remembrance, even when she slips off into her own world. That in Momma's mind, she will know I love her. My prayer is that God will grant her the wisdom to know that we love her. And that He will spare her the fear, and the episodes of this terrible thing that has happened to her.

There are times that I want to pick up my phone and call her and say, "I will be there in a couple of hours, will you make me some of that good vegetable soup." And I can hear her say, "Now, if I make this, and you don't get here to eat it.......and I will cut her off and say, "Momma, I will be there."

I have one of her old house dresses that I would see her wear on Saturdays, when she washed and rolled her hair for church the following day. I kept that "duster" as she called it. There are times when I start missing her so much that I will get that article of clothing, and wrap the arms around my neck. I want to feel her embrace. I have never washed that "duster" because, it smells just like Momma. She always smelled so fresh.

I walked into the dining room of the Nursing Home a few weeks back. She was sleeping in a recliner chair. I bent and kissed her on the forehead. When she opened her eyes and saw me, she reached her arms up to me. When I hugged her she said, "You don't know how long I have waited to feel those arms around me."
Those are my sentiments exactly. Oh, just to feel those arms around me.

Good-night Momma......I love you MORE.