December 09, 2020
By Linda Wycich Levenson
Years ago, I sat in the waiting room of one of Pittsburgh's “best” mental health hospitals and breathed deeply. It was the beginning of a journey that had its roots in mental illness. Over the course of weeks that turned into days, and months that turned into years, I supported my sister through the world of medications, therapy, treatments and heartbreak.
The patients, or clients as they were called, were sometimes surrounded by caring family members or friends who felt their pain, tried to help and faced frustrations in the journey they were on. There were varying degrees of concern and, sadly, some who cared for them dropped out, gave up and quit. Some just abandoned the person in pain. I found disdain for those who couldn't face the challenge. It may be hard for them, but it paled by comparison to those who were trapped in the jaws of mental illness.
I would park my car after driving over two hours to get to the hospital and wait for visiting hours. There were times I went to Heinz Chapel on the University of Pittsburgh campus to seek solace. Its beauty and majesty gave me comfort. I entered the front door after walking up the steps, saying a prayer on each step. I decided after several visits that God needed to help my sister more than me, so I changed my chant as I went up the steps. It went from “Help me God” to “Help my sister God.” I decided I could have the last step for my own request and returned to saying on the last step, “Help me God.” I felt alone in this journey. And outside of the medical professionals and social workers, I was alone. Our immediate relatives did not want to be involved.
Each time I went, I would wait in a small area outside the elevator by the door to the ward. There were times I waited with other visitors (there were never very many) until we were allowed in. It was during these waits that I became aware of the others. The ones, like me, who were there. We would do what we could. We would do what we thought would help. We would do anything. Could we make it better?
It was during one of my waits that I sat beside an elderly woman. Her son was maybe in his 50s. He looked through the small window in the door at her. She obviously had been through this several times. How many times, I wondered? “He's not happy,” she said. She breathed deeply and said, “He'll probably go from here to a personal care home.” I wondered if that is where my sister and I were headed. The nurse opened the door. He anxiously waited to talk to his mother. I was not so lucky. My sister was still upset that she was there. I had to seek her out. She said little. After a brief visit, I talked to the social worker. She was trying to be helpful. There were no easy answers. There wasn't a clear path forward.
The weeks went on, and the routine continued. My sister did not progress. My visits continued. Some being no more than 10 minutes long. I waited one visit with a group of women. They had a purpose for their visit. They were going to do their loved one’s hair. They talked, laughed, took it all in stride. How could I achieve this attitude? Their loved one was silent as they fussed over her. They chatted with her and tried to get her involved. Even though it didn't seem to be working, they never hesitated, and they never stopped. I saw them weeks later and their loved one was much better. The meds were working. How wonderful I thought. Can this happen to my sister?
The social workers were wonderful, and they let me come in and visit even if it wasn’t visiting hours. They knew I was driving in from out of state, and it made my weekly visits a little easier. The doctor said I would see a change in my sister in about two weeks once the meds started working. I waited. One visit, some of my sister’s meds were changed to the evening so she wouldn't get so sleepy during the day. This was one of the best moments we’ve had. She was clear, talkative, together. Our talk that night was something I will hold in my heart forever. She was the sister I had known. I left the visit on cloud nine.
I went in the next morning expecting to see the sister I saw the night before. It didn't happen. She returned to the mental darkness that will always haunt her. I was not able to push my emotions back that night. It hurt. The journey continued.
After 90 days, they told me that my sister would be transferred to a long-term facility. The new place was geared to give her some freedom. A new waiting room. A new group of families, each trying. Each of us in anguish.
In the new facility, I waited in a room that was friendlier. It had tables, books and games that we could use. My sister would have none of it. She wasn’t talkative in the least and was still not happy. The meds would have to be adjusted.
I didn't know it at the time, but it turned out to be the best facility that she would be in, and she did progress. But as I now know, it is a journey. It is filled with hope and despair. We continue finding our way. My sister is stable. She has adapted to her new lifestyle. We enjoy our visits. She interacts more. I visit her on a regular basis, and she waits for me when I come to see her.
Linda Wycich Levenson was born and raised in a suburb of Pittsburgh, PA. She attended Kent State University where she met her husband of 45 years. Linda is the proud grandmother of two boys and the sister of one special lady.
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