DIANA ELIZABETH SMITH JONES

by Merlin Compton

Note: "Diana Elizabeth Smith Jones," is not the real name of this resident. I have changed it to protect her family’s privacy.
         Diana Elizabeth Smith Jones.  Who is she? Is she a distant relative? Except for Tammy and Tina, you are going to say you have never heard of her, and you would be right. We called her Liz and knew her in a rather unusual way. Why am I writing this? I have been with Avon in three different assisted living and nursing - home facilities and in each one I ask the same question as I watch the residents, many of whom have severe disabilities. I will ask the question below.

           One resident is almost blind, some are in wheelchairs or on scooters. Some walk with a cane or with a walker. Some walk with a limp or just shuffle along. In Memory Support, a section where people who have dementia or Alzheimers live, where Avon is, residents walk aimlessly along staring at nothing. Some go to the small social room and go to sleep watching the TV. Some go from door to door ringing the door bell and trying to get into rooms not their own. (Avon is different; she reads and she sings.) To my knowledge, most of them in Memory Support never have visitors. In a sense they are being "warehoused," just waiting for the final hours of their lives. I should add that the staff where Avon lives couldn’t be kinder, more thoughtful or more professional. So being "warehoused" there is not completely bad. So what is the question I ask?

            As I look at these people with all of their disabilities and limitations I ask, "I wonder what their lives were like before they had to live in assisted living or Memory Support?" How many of the men were bishops or stake presidents or brilliant scientists or professors or CEO’s? How many of the women were Primary presidents or Relief Society presidents or teachers or principals or PTA presidents or Mothers of adopted children or held important positions in business ventures. I’m sure that almost all of these people were very accomplished in their fields. The way we see them now does not suggest in any way what they have accomplished in their lives.

        For example, people who see Avon as she is now,  know nothing of all the ways in which she has influenced people with her flannelboard stories, her quilts, her tea towels, her enchilada recipe, her visual aids for Primary, etc.

That is a pity. So now I’m going to tell you about Liz.

             When Liz arrived in Memory Support she made an immediate impact; we got to know her very well. She was only one of about 25 residents there but because of the care she required she took up about half of all the time that the aids could use to attend to people. For the first few weeks she was constantly looking for ways to "escape" from Memory Support. She would persuade visitors to let her leave with them. She left several times in this fashion causing quite a panic with the staff. When Tammy and Tina and I were there she would walk up behind us and try to leave when we were about to enter the elevator.

               She was quite adept at sensing that we (she recognized us as visitors) were headed to the elevator and would try to get on with us. I don’t know if she ever learned the code for the pad we had to punch to leave, but there were times she watched us when we didn’t know she was there behind us. (One of the residents actually did watch somebody punch in the code and learned it so she could leave without the staff knowing what she was doing. She was so good at it that the code had to be changed.) So when we were in the process of leaving we always had to look around to see where Liz was.

               Many times when she was following us to the elevator we had to get help from one of the staff to turn her around and take her in the opposite direction. It became a "Liz Alert" every time we were getting ready to leave. One time I was leaving and I looked behind me and she was nowhere to be seen. But after I punched in the code, there she was right behind me. How she got there I do not know. On another occasion as I opened the door to enter, there she was hoping to leave. Many times a day she would go to the door and try to open it. She was a real handful for the staff. Often she would see me and come up to me and grab my arm. I didn’t know what to do. I had to have help from the staff to disengage myself from her. I think she thought I was her husband, a very loving individual. Sometimes she would enter the wrong room and sometimes she would take her clothes off. But there was another side to Liz

             Of all of the residents in Memory Support, she was the one who was most concerned about other residents. She felt it was her duty to push the wheelchairs occupied by other residents. I don’t know how often she did this or for how many hours, but on many occasions we saw her pushing wheelchairs. In addition, she would walk with other residents just to show she was a friend. I talked with the staff about her and I was told that of all of the residents she was the most caring and loving of all the people there. (I think it is fair to say that Avon would have shown this type of loving care if she hadn’t been limited by her lack of mobility. She always liked to help people.)

As time went on we saw less and less of Liz and her health was definitely getting worse. Finally we didn’t see her at all. We supposed that she was being sedated. The next thing we knew she had a mini-stroke and passed away several days later. So that is how we knew about Liz Jones. What was she like when she was living a normal life? That is what I wanted to know. Here are the essential facts in her obituary.

       DIANA ELIZABETH SMITH JONES passed away from complications of Alzheimers disease. She was born in Murray, Utah. She met her husband while attending High School and married him in the Salt Lake Temple. She was a faithful member of the LDS Church and served in many callings. She learned how to use the computer at age seventeen and was a pioneer leading the way for women to master that skill. She worked as the Data Processing Manager at Deseret News Press and Marketing Manager for Sperry Univac. Liz retired as a systems analyst from Unisys. Her interests included genealogy, gardening, sewing, tennis, golf and camping. Surviving her are her husband, a son, two daughters, fifteen grandchildren and ten great-grandchildren.

         So now you see what the real Liz Jones was really like, not the lady whose brain drew a blank during the time when we knew her. My point is that people we see in assisted and related facilities had real, rewarding lives, like that of Liz Jones. It is unfortunate that we forget that these people had meaningful lives before physical handicaps forced them into a very limited kind of life. They shouldn’t be "warehoused"; they should be treated in a way that reflects the great lives that many of them have led.

           I don’t know what the solution is. There are many people like Liz Jones who needed to be remembered while they were alive. And she was; too many are not. I knew a couple in St. George who had worked with me in record extraction. The husband had Alzheimers and was living in the nursing home where Avon was going through rehabilitation with her knee replacement. I talked to the wife about him and she told me that he didn’t recognize her or anybody else. So I asked her why she came every day to be with him. She said "I still love him and I know in some way he still loves me, but what is important to me is the good feeling I have when I am with him. I know that my love for him is stronger than ever and my visits prove it. What else can I do?" Of course this isn’t exactly what she said but it is the essence of our conversation.

                I think of Avon, knowing that I am one of the few persons she recognizes and sometimes I wonder if she knows who I am. The day will come, inevitably, when she won’t recognize me. I hope I can show the same devotion to Avon that this good wife has shown to her husband. Not everyone can do what she did, visit a loved one every day, but we can all do something. Maybe send a card, maybe a picture. I guess one thing is to make sure that family and friends don’t forget them but try to treat them as if they can remember what wonderful people they were before disease or physical limitations took over their lives. I am absolutely certain that whatever we do, we have accomplished something, and that the kindness does not go unnoticed. We know that we have shown our love in the best way we can. And what I think is of great importance is that when we do something like that we have a good feeling, even a Christ-like feeling inside.

            Here are some excerpts from a song with words by Carol Lynn Pearson and music by Reid Nibley. I think they express well what I have been trying to communicate:
If you don’t walk as most people do,
Some people walk away from you.
But I won’t.
If you don’t talk as most people do,
Some people talk and laugh at you,
But I won’t.
I’ll walk with you. I’ll talk with you.
That’s how I’ll show my love for you.
Jesus walked away from none.
He gave His love to everyone.
So I will! I will.

            This song was sung at Tabitha Michelle English’s funeral last Saturday. She struggled with the disease of SMA (Spinal Muscular Atrophy) from the time she was born and finally succumbed at the age of five. Her muscles didn’t function properly so she never walked and she never talked. But she had a strong personality and learned how to communicate with her eyes. She was a real person in spite of her limitations. So Tabitha never spoke and Avon, in her dementia, says very little and is unable to carry on a conversation. I don’t think anybody ever laughed at Tabitha or Avon, but yet I think they found it hard to relate to Tabitha while she was alive and to Avon while she is still with us. Now that Tabitha is gone, how to relate to Avon is a challenge for me especially but also for all of the family. I try to live by the words to the song quoted above. "He gave His love to everyone. So I will! I will."

Merlin Compton
November, 2012
Salt Lake City

The Power of Song

Note from Tammy:

     With heavy hearts we gathered together last Saturday to  lay to rest my niece's young daughter, Tabitha Michelle English, age 5, and to celebrate her life.  Tabitha is the second daughter her brave family has lost, due to the deadly effects of  the disease SMA (Spinal Muscular Atrophy). 

    One bright point of the service was Tabitha's father's testimony that he knew he would see both his young daughters again, after the resurrection, and that they would be healthy and would be able to run, jump and dance.    This poem is not about Tabitha,  it is about my Dad's feelings for my mother, but he does include a lovely line in the poem  in which he describes  a tomorrow he looks forward to,  "A new world, all our loved ones there;  Mother and Father and children dear."   He, like Tabitha's family and many others,  are looking forward to the resurrection to reunite them with their loved ones. 

    This poem is about my dad's relationship with my mom, how the disease of Alzheimer's has separated them, although they are physically together every day,  and how he looks forward to being with her again when she is restored to her health after the resurrection. 

    My Dad says, in the poem,  he used lines from the songs in the album "Believe" by the Celtic Woman. See if you can identify them.  He says, "The songs in that collection form the framework for my poem and provided the inspiration for what I wrote. I am thoroughly intrigued by those songs because they reflect so much about my life with my sweetheart. I don't know of any other collection of songs that delves so deeply into the essence of life with its days of sunshine and nights of gloom. Hence the title: "The Power of Song."  

                            THE POWER OF SONG

                                 by Merlin Compton


                        Life was sweet; love was strong,

                        Love awakened, two hearts as one.

                             Dreams? Reality they had become.

                       A life of married bliss they had begun.

     The sweetest hours that ‘er I spent

                        Were with my lassie, oh.

                        The ground she stood on I loved;

                        My love for Avon did constantly grow.

                            Then her memory began to fade;

                        Fallen away had the years;

                        The Avon I had known and loved,

                        Seen now only through heartache and tears.

                        Tigers came at night

                        And tore my dreams apart;

                        Wide waters kept us from each other;

                        Low, oh terribly low was my heart.

                        A new road I began to tread;

                        One I had never known before.

                        A silent road; blind inside was I.

                        Avon’s voice I would hear no more.

                        Stormy weather I would endure

                        Trying to reach that distant shore.

                        Avon was there, oh how I tried,

                        To reach that person I will always adore.

                        I need a boat, big and wide

                        To weather that stormy sea.

                        One I load deep with all I own;

                        Not as deep as my love, Avon, for thee.

                        But now I face reality.

                        Dreams that cannot be;

                        Storms I cannot weather;

                        Who will hear my plea?

                        Swiftly the years pass;

                        Avon is at my side.

                            But  only in memory upon that distant shore,

                        Still lives my bonnie bride.

                        Smile, though my heart is breaking;

                        Smile through tears and sorrow.

                        At the end of the storm, a golden sky.

                        Brighter will be that tomorrow.

                        That tomorrow, like no other.

                        A tomorrow, after death and mourning.

                        The night a new day delivers             

     Waking us; to a new life is pointing.

     A new world, all our loved ones there;

     Mother and Father and children dear.

A rapturous joy to mortals unknown.

All cares and worries disappear.

Our love. firmly together it binds us;

                    Together again never to part;

                    Eternal this love; inexpressibly deep.

                    Bright the future; as one beat two hearts. 

OUR HEARTS WILL BE HOME AGAIN. . . . . .