A Love Story

By Esther Neufeld Kressly
Copyright 1995, "All Rights Reserved"

This is a true story about Sarah Wiens, who had Huntington's Disease. Sarah was in a state mental hospital when she met Helmuth Stainer, who loved and cared for her from that time until her death. Esther Kressly, who is Sarah's niece, has given permission for this story to be reproduced here.

Sarah Mae Wiens

Date of birth: May 19, 1912 in family residence at Chicago, Illinois.
Deceased: October 8, 1980 in Buckingham Nursing home at Chicago, Illinois.

Sarah Wiens was born at home in the upstairs apartment of the Mennonite Bible Mission of Chicago, where the Wiens family resided. Her parents were inner city missionaries, Katherine Kroeker Wiens of Jansen, Nebraska, and Abraham F. Wiens of a German speaking Mennonite Colony in the Ukraine, Russia. Because of the encroaching evils of the country and peasant uprisings, Abraham immigrated to the United States when he was 26 years old, as did many other Mennonites from that region. He had just finished a 4-year term in forestry, in lieu of a military term, as the Mennonites were taught pacifism as advocated by Christ in the Sermon on the Mount. (Matt. 5-7)

Sarah was sixth of seven girls born to Rev. and Mrs. Wiens. At about 40 years of age Sarah began to show symptoms of Huntington's Disease. It is a dominant hereditary condition with children of an affected individual having a fifty-fifty chance of getting the disease. It gradually affects the physical muscles for walking, talking, and eating; and the patient suffers from choreic movements of the limbs and head. Side effects can be emotional and psychological.

Two of Sarah's sisters developed Huntington's Disease and passed it on to some of their children and grandchildren before it had been diagnosed. Sarah's condition also was not diagnosed for over ten years. This "unknown" situation caused considerable worry and concern for the relatives and friends involved in their welfare.

In retrospect Rev. Abraham Wiens showed signs of H.D. several years before he died of a heart attack. He began to show slight choreic movements and became increasingly emotional in his preaching and personal contacts. He also had periods of depression and irritability. This was coupled with increased feelings of remorse or guilt. However, he also became more kind and loving, almost childlike in his dealings with people. These traits only endeared him to them. His increasing nervousness was attributed to old age.

There is no known pattern of Huntington's Disease in Abraham Wiens' family in the Ukraine. But later in life two of his brothers and a nephew (who had also come to the United States) showed unmistakable symptoms of H.D. The onset was approximately ten years before each one died. But in the early years this condition was unknown. Some considered that Parkinson's or a similar disease might be involved.

Education and Miscellaneous Studies

Sarah attended Shields Grammar School, Harrison High School, and Central Y College, graduated from Moody Bible Institute, and received a B.A. from Chicago Musical College (now affiliated with Roosevelt University), majoring in organ and piano. Later she attended and received an M.R.E. from Bethany Biblical Seminary which was affiliated with the Mennonite Seminary in Chicago. She lived in an apartment at the seminary during this time and began to show symptoms of H.D. This was previous to the family's knowledge of the disease. Later she attempted to take courses at The University of Chicago, with the aim of studying history. However, she did not finish any of them, due to her increasing handicaps.

In her diary, Sarah stated that she learned early from reading "The Evangeline", that the good did not always prosper. In fact, they may have suffered just because they were good. She pondered the problems of good and eviil and had a yearning to find answers to the age old questions of how to adjust to the pain and suffering in this world. From then on she read all the serious works she could find, including the "Great Books" series from The University of Chicago. She also spent much time discussing these issues with others, but she found few soul-mates.

Church Affiliations and Activities

Sarah developed a strong religious faith, and found herself working in the various churches she attended as long as she was capable. From early on, she taught Sunday school, played the piano and organ, and directed the choir. She grew up in the Mennonite Bible Mission, later chanaged to Grace Mennonite Church. At the seminary she became a member of the Woodlawn Mennonite Church. After graduation and a series of moves, she joined the Hyde Park Baptist Church, the Unitarian Church, and a Quaker Meeting House. Toward the end of her life she was reinstated into the Grace Mennonite Church, during which period she passed away.

Employment History

After high school Sarah worked at various office jobs. She was fortunate to work even during the depression. Some were full-time positions, and others were part-time while going to school. These positions included clerical, secretarial, accounting, and key punch operating. She ended up as a supervisor because she was so accurate.

She did not use her music degree except as a volunteer in church work. She also occasionally had a few piano students over the years. At forty years of age she lost her key punch position due to increasing symptoms of H.D. This was the last of her employment. Concurrently she moved to the Mennonite seminary and studied full time. For the next ten years she lived on her savings and had financial help from her sister Catherine.

Sarah had no car and used the CTA for transportation for shopping, going to church, and visiting her few remaining Chicago relatives. During this time she lived in several small apartments alone. Everywhere she went children would taunt her, thinking she was drunk, and try to mimic her walk. She was frequently roughed up as she traveled back and forth on the CTA, waiting for buses. All of her sisters had moved out of the state except for her oldest sister, Mrs. Catherine Neufeld, who was not an H.D. victim. Sarah also had several nieces and nephews in the Chicago area. These persons tried to be as loving and understanding as they could, without knowing the true facts of her condition.

After fifty years of age, Sarah was given a small third floor apartment in Mrs. Neufeld's flat building at 4216 S. Maplewood, Chicago. One day she came home all roughed up, bruised and without her purse. She was hysterical and claimed that she had been raped.

Sarah's nephew, Jack Kressly, took the opportunity to take her to Passavant Hospital where his wife Esther's doctor was affiliated. Jack hoped that they would diagnose her once and for all, and prescribe treatment. She was examined by the proper specialists, and they concluded that she had the usual symptoms for Huntington's Disease, choreic movements, flaying arms, jerking head, poor speech, unsteady gait. They also concluded that she had paranoid tendencies. However, during her stay, a careless physician took it upon himself to give a demonstration of her H.D. symptoms in the auditorium for the benefit of other doctors. He had her try to walk a straight line, held up her arm as it moved about, and pointed out her head movements. He also questioned her about her condition.

Sarah became hysterical, but understood only too well the ramifications of the demonstration. When Esther visited her later that day, Sarah was still very upset and told Esther what had transpired. She also told Esther that the doctors were incorrect and that she had a rare condition, the royal family blood disease. She derived comfort from this notion for a long time after that.

Sarah was released, given medication for the H.D. symptoms, and went back to live in her sister's apartment. At this time Jack Kressly tried to get her placed in the Illinois Psychiatric Institute, to see if they could be of help. However, they had their own projects and were not taking any patients of Sarah's type. So the request was turned down. Eventually, Mrs. Neufeld was able to get the social security disability check for Sarah, and was made Sarah's guardian.

For awhile things went smoothly. But then Sarah quit taking her medication, and became increasingly paranoid and helpless as far as taking care of herself and her apartment. She quit eating, and became irritable because she couldn't go out anymore since she fell so frequently. She also became a hazard when she tried to burn letters in the waste baskets.

Chicago State Hospital
4200 North Oak Park Avenue

Finally, the relatives decided to try to place Sarah into Chicago State Hospital. Her sister Helene and her nephew Jack accompanied Sarah all the way from 22nd and Maplewood to the end of Irving Park Road by CTA. Sarah was amiable during the trip and willingly signed herself into the hospital. When an attendant led her away into a diagnostic ward, she turned and with a sad face said, "You traitor!" She had the necessary items for a comfortable two-week stay, but about half the things soon disappeared including her glasses. She had signed herself in so she had quite a bit of freedom. Jack and Esther Kressly visited her when possible, and took her out to the closest shops. On Thanksgiving Day they treated her to a dinner and the movie, Dr. Zhivago.

However, Sarah's first experience at Chicago State Hospital was not all positive. One problem was connected with the supposed freedom she enjoyed. As a result she was not supervised or protected enough.

From a large ward Sarah had to go with the other patients through an underground tunnel to the dining room and return without any assistance or supervision. Here she became a celebrity on the ward because she helped other patients get around. She also counseled them about their fears, worries, etc. The other patients called her the "social worker". One night another patient climbed up onto the window sill crying out and saying that she was going to end her life. (Apparently there was no attendant within ear-shot.) Sarah talked her out of it and soothed the girl. At the next visit Sarah told her niece that she didn't get any sleep that night, but she sounded pleased by the opportunity she had of helping someone.

However, another night Sarah failed to return to the ward. The attendant telephoned Esther that Sarah had not answered the bed check, and she couldn't get anyone to try to locate her. Esther tried to get some action from the security department, but they were useless. The next day Sarah showed up all disheveled, clothes torn, bruised and upset. She told the attendant that she had been held in the basement somewhere and raped. She did not know if it was a worker or another patient.

Sarah stayed this time for two two-week periods, signing herself in for the second period. Her eating and medicine were regulated. The authorities felt that she could return to her sister's flat on Maplewood with Mrs. Neufeld supervising her eating and medicine. However, after a time she got into the same rut as before. She refused to accept the medication and any food offered to her, and she was unable to fend for herself. Occasionally she ate a handful of cornflakes or a slice of bread, but not enough to stave off her hunger.

Nursing Homes

The relatives this time decided to try placing Sarah into a nursing home and her niece, Esther Kressly, was made conservator. This made her responsible for her aunt's placement, and the use of her social security disability check. This then became the pattern for the rest of Sarah's life. It seemed that each nursing home was worse than the one before. She was in a series of them on the south side. They found her wandering outside, getting hurt, and being taunted again by children and teen-agers. Several times she was picked up by policemen and brought back to the home.

Finally, the nursing home authorities took away her coat and locked her up. She then retaliated by refusing to eat, and became worse off. After about a month of Sarah scarcely eating, just lying in bed and becoming weaker, the manager called Jack and Esther Kressly in and said that he was forced to send her to Chicago State Hospital. Much against their will, Jack and Esther accompanied the ambulance to the hospital, and got Sarah admitted. The manager had written specific instructions to feed her and continue with her medication and stated clearly her diagnosis of Huntington's Disease. The attendant was given the instructions and assured Esther that they would be considered. Sarah was then wheeled out of sight.

Thus Sarah was taken to the Chicago State Hospital for the second time. This time she was treated poorly and almost ignored. The doctors did not treat her according to the instructions, disregarding her symptoms and the proper medication. In the first diagnosis center, she went without eating for three days. When her niece Esther came to see her she looked like a skeleton, was almost comatose, lying across a chair in an unsupervised room. Esther asked a sole attendant in the dining area when Sarah would be fed. The attendant said that Sarah would have to wait her turn. In the waiting area, patients stumbled over each other, and some acted menacingly. Esther took some food from the dining area and forced it down Sarah's throat as best she could. She continued to visit her and feed her as frequently as she could. Later Esther insisted upon seeing a doctor and asked when treatment would begin and he said that everything was being done, and that her aunt would be diagnosed at the proper time.

A frustrated Esther wrote to the authorities at Chicago State about the conditions she found there, and that they treated Sarah worse than a dog. But nothing helped. It took a week before Sarah was transferred to another large ward, still with only one attendant.

Manteno State Hospital

After a two-week period, Sarah was sent to Manteno State Hospital at Manteno, IL. There she was placed in a series of wards. The first ward was beneficial for her since she was given extra food to build her up. But then followed a series of buildings in which she was either mistreated, or ignored. She fell frequently, broke her arm, received bruises, and caught the flu several times. It was rare to find a good attendant in these wards. Esther made weekly visits, bringing goodies, playing the piano, and helping where she could. Mrs. Neufeld and other relatives visited occasionally. Sarah's symptoms of H.D. continued to increase, and she had difficulty walking or eating. However, her speech was still understandable at this point. But no one undertook the task of helping her until a miracle occurred.

Enter Helmuth Stainer

The miracle which the Lord provided for her was in the person of Helmuth Stainer whom she met in a co-educational lounge attached to the ward in which she was presently located. Helmuth Stainer became her loving and caring companion, meeting her physical, emotional, and spiritual needs. After a year they were separated and each were unhappy at the separation. Finally, a sympathetic attendant found Helmuth and brought them together again.

On July 23, 1976 Sarah and Helmuth were placed in the Greenview Pavilion in Chicago, at Estes and Greenview. It was later known as the Atrium Medical Center. Here Helmuth cared for her and became her loving companion, for about four years of residency. During this time, Esther tried to contact a social worker or doctor to discuss Sarah's condition and treatment. Nothing was accomplished. Sarah developed teeth problems. She had one visit to a dentist who decided he couldn't handle her movements. So from then on, her gums and teeth gradually deteriorated and came out one at a time during eating, etc.

Then Sarah became too ill for the nursing home and was hospitalized several months before her death. Helmuth came every day to visit her but felt frustrated about not being able to aid her. The hospital care took over with I.V.'s medicines, etc. Then Sarah was placed in the Buckingham Nursing Home. Here also the attendants ignored her and didn't bother to assist her properly. Helmuth could again visit her and feed her. He spent as much time as he could just being with her. Her niece Esther came in the evenings after work when he had to return to Greenview. However, this was the last month of her life, and she died peacefully on October 4, 1980 in Helmuth's presence.

Sarah's funeral was held at the Kelly Funeral Home in Brighton Park of Chicago on October 9. She was buried in the family plot in Willow Hills Memorial Park, Willow Springs, IL. A memorial service was held on October 12, at the Grace Community Church of which she was a member. She left behind four sisters, brothers-in-law, her beloved companion Helmuth, and many nieces, nephews, and friends. Thank the Lord that Sarah Mae Wiens' misunderstanding and mistreatment had finally come to an end.

A Love Story--Continued

Helmuth Gottfried Adolph Stainer
July 17, 1911--April 3, 1994

Helmuth Stainer was born on July 17, 1911, at Wilkinsburg, Pennsylvania. His birth is registered in the Allegheny County.

Helmuth was raised a Catholic. Sometime in his teens his family moved to Germany where he had other relatives. His mother apparently passed away at this time. He never said much about Germany except that he used to say, "Hitler almost got me, but I escaped out of Germany and came back to the United States".

He studied drafting in a Chicago trade school. This led him to several drafting jobs in Pittsburgh, Chicago, and then in Milwaukee. In these places he usually lived with German people. At some point, his brother Eric also returned to the United States and the two brothers were united again.

Ironically, during this time our country became involved in the Second World War, and Helmuth was drafted. The conflicts aroused by the propaganda and training in boot camp caused him to become mentally ill. He couldn't face the possibility of fighting against his family and friends who were still in Germany. Consequently, he went AWOL from camp, was found and brought back to stand trial. The judge declared him mentally insane and placed him in Manteno, IL, where he was almost catatonic for about thirty years.

All Helmuth says when asked about his treatment during that period was that he was "dead" for a long time. Record shows that his father and a brother visited him during this period. But the authorities lost all contact with them after this.

Sometime before 1970 our aunt, Sarah Mae Wiens, was also committted to Manteno due to a debilitating illness called Huntington's Disease. She was placed in various wards or buildings for several years. Some of them had decent attendants. Others did not. She was frequently mistreated, ignored when she became ill, or fell due to her choreic movements (characteristic of the disease.)

In about 1972 the authorities placed our aunt in a co-educational social program where female patients were allowed to mix with male patients in a common sitting room and dining area. The wards for sleeping and bathroom facilities were separated off to the sides.

Attendants have told us afterwards that when Sarah was taken in to the sitting room for the first time, she spotted Helmuth from across the room, went over to him and sat down next to him and said to the attendant, "This is my husband!" Helmuth responded to her almost immediately--the first time he had talked to anyone in years!

After about a year the authorities changed their policy of socialization and the couple was separated into different buildings. This was a hardship on both of them. Esther Kressly, her Aunt Sarah's guardian, was given the information as to the building housing Sarah, but she could not get any information on Helmuth. She had no legal rights to visit him. Sarah was shifted around several times in the next few months. Esther and Sarah continued to ask each attendant if they knew anything of Helmuth. Apparently, he had been doing the same in the place where he was. Finally, after about six months, a considerate social worker realized their distress and took Helmuth to visit Sarah. He just happened to be residing in a building across the way from the building Sarah was at.

From then on he resumed his tasks of bringing her snacks from the commisary, visiting her in the lounge, and assisting her with meals, as he had before.

When patients began to be removed from Manteno in 1976, the more capable patients were to be removed first. Helmuth was eligible to leave much sooner than our Aunt Sarah. The authorities wanted to send him to a half-way house in the southern suburbs of Chicago. He had no guardian as such, but was a ward of the state.

Sarah, on the other hand, needed nursing care, which necessitated a different type of facility. Esther Kressler was her conservator, so it was preferable that Sarah be sent to a nursing home in the Kressly's neighborhood. It looked as though Helmuth and Sarah were going to be forced to be separated again. However, Helmuth refused to go to any place that was suggested to him. He insisted that Sarah was his wife and that he had to stay with her. After much prayer by the relatives, the authorities worked it out that Helmuth could accompany Sarah. So on July 23, 1976, they were both released from Manteno and sent to the Greenview Pavilion on Estes near Greenview. This was a block from the Rogers Park Presbyterian Church, and about six blocks away from the Kressly's apartment.

Here Sarah received the same lack of treatment or help for her specific condition. Her basic needs were ignored. If an attendant came to assist her, it was said that Sarah moved her arms too much, etc. so that one couldn't help her. Or the attendant would be rough on her, use too much force in dressing or feeding her, etc. Esther came over every day at Helmuth's request to dress, feed, and walk her around. Then Helmuth said that they were too rough with Sarah when putting her to bed, so Esther added an evening visit to the list.

However, previously, on July 4, 1976, Esther's mother had suffered a stroke. After several months in the hospital, she came to stay with the Kresslys. She was bedridden and needed constant care; so Esther had to curtail her activities at the nursing home. Helmuth then began taking over the care and nurture of Sarah, and he gradually increased his tasks until he was undertaking her whole care, as attendants did less and less. They claimed that Sarah hit them whenever they came near her. Explanations about H.D. didn't help.

Helmuth dressed her, fed her, bathed and toileted her, and walked with her to the lounge where they would watch TV together. He would hold her hands so that they would not move so much.

During this time the Kresslys came frequently to visit the nursing home. Helmuth would then wheel Sarah back with them to the Kressly's apartment which was six blocks away. There Sarah and her oldest sister, Catherine Wiens Neufeld, (Esther Kressly's mother) had a wonderful reunion. They spent many happy hours together, visiting on the veranda at the lake front where the Kresslys lived.

Helmuth continued to make her life happy and content. Sarah had everything she needed in his loving care. The Lord brought them together in a wonderful way, and each fulfilled each other's needs.

In this way Helmuth was able to continue caring for her and looking after her until her death in 1980. Helmuth attended the funeral and the burial service in Fairmont Cemetery. There was an empty lot next to Sarah's, which, Esther promised, would be saved for him. He was very devastated by her death, and took a long time to recover from it.

In the meantime, he started attending the Rogers Park Presbyterian Church with Jack and Esther Kressly. There he learned to know and like the friendly people of the congregation. He visited with them during the after service coffee hour. It was a wonder to everyone how quickly he learned to know their names. Two members in particular took time out to visit him regularly at the nursing home. Irma took him treats and trinkets, books, etc. Barbara spent many evenings, playing games with him, including chess.

During this period he began going to the Kressly's home for Sunday dinners, riding the bus with them after church and learning the transfer points. After a while he could take the trip by himself, and gradually began to visit Esther in the middle of the week while Jack was at work. Esther and Helmuth would have lunch together and whenever Esther needed help with the washing, buying groceries, etc. he seemed glad to help her with the chores. Helmuth also spent holidays at the Kresslys.

Helmuth's life continued in this manner until he had a bad fall about five years ago. He slipped on some hidden ice, on his way to church and broke his leg. It took a long time to heal and curtailed his activities. Later he was able to resume his church attendance. Also, he had been hospitalized several times because of his heart.

On Easter Sunday, April 3, 1994 Jack went to the nursing home to accompany Helmuth to church as had been his custom since Helmuth's fall. When they had gotten as far as the house next door to the church, Helmuth had to stop and Jack helped him over to the front steps. There Helmuth went to be with the Lord, passing away peacefully by Jack's side.

Helmuth had many friends at the church and at the Atrium Medical Center (renamed). The administrator said about him that he was a "sweetheart", and that he never caused them any trouble! Ever since her Aunt Sarah's death, Esther had reassured Helmuth that he would be buried beside his beloved. He seemed to take comfort in this fact.

When anyone would ask Helmuth what religion he was, he would state that he had been raised Catholic but that now he was a "Presbyterian". He liked to carry a picture of the Good Shepherd and the head of Christ in his billfold. He also kept a picture of Sarah and the Kresslys in his billfold or drawer. He liked to read the church bulletin and newsletter, and especially noted the names of all of his friends.

A memorial service was held on April 17, 1994 at the Rogers Park Presbyterian Church, with the Rev. Larry Turpin officiating. Many of Esther's relatives were able to attend. He leaves to morn twenty-five adopted nephews/nieces and spouses--relatives of Esther Kressly. He also leaves many friends from the church and the nursing home. The adopted relatives were very grateful to Helmuth for his many years of devoted care for their aunt Sarah. They thank God that he came into her life to give her assistance in meeting her many physical needs due to the debilitating effects of her disease. They are grateful most of all for his constant and unchanging love to her.

Helmuth was buried in the Wiens family plot, next to his beloved Sarah on May 6, 1994, in the Willow Springs Memorial Park at Willow Springs, IL. Rev. Larry Turpin and Rev. David Ewert presided at the graveside ceremony. Jack Kressly read the obituary.

Transcribed to machine readable form, edited, and converted to HTML by Renette Davis with permission from the author, Esther Kressly. Send comments for Renette by clicking here.

Last updated: Dec. 4, 2010