| by Stephanie Stewart |
I can remember holding my Mother’s hand and looking at our reflection in the mirror above her dresser. She was crying. My parents were getting divorced, and my Father was carrying his belongings out of the house in black trash bags. I can still see him walking to his car wearing frayed cut off jean shorts. I was 5 year old, and didn’t know that this moment would mold the relationship with my Mother from that point forward.
Later in life, I learned that my Mother had struggled with different levels of depression since she was a teenager. Her first major breakdown took place when I was twelve. My Grandmother was diagnosed with colon cancer, and my Mother was terrified at thought of losing her Mother. After my Father left, her parents, especially her Mother, were her rock. My Mother became so depressed and anxious that she had to take a leave of absence from work.
She struggled to find the right doctor or medication to help her. She was also convinced she was going to develop cancer and even gave herself breast examinations several times a day. One of the darkest days was after she had been given a new medication by a new family doctor. She didn’t react well to the medication. One night, she sat in the middle of our living room floor rocking back and forth because she thought that her heart would stop beating if she stopped rocking. I sat up with her the entire night pleading with her stop. By morning, she had sores from rocking on the carpet all night.
She eventually was given a medication that was effective and began to recover from her depression. I had spent countless hours trying to reason with her and use logic to get her to understand that she was OK and not in danger of illness or suffocating during her panic attacks. But I was so young, and didn’t yet understand one of the most challenging aspects of dealing with a loved one with mental illness – that they are inherently unable to be logical or rationale.
Over the years, she periodically went off of her medication whenever a new stressor came into her life. This usually involved the end of a romantic relationship, and the episodes began to cycle closer and closer together.
The beginning of the end was the death of my Grandfather. I remember her agony at his funeral. She slipped into a deep depression over the next several months. Before then, I had come home from out of state many times to pick up the pieces after her episodes. While she was in hospital or stress clinic, I would pay the overdue bills, take the garbage out of the house, wash all of the dirty clothes, fill her refrigerator with groceries, etc. It became a routine.
But this time it was different. My Grandmother had been unable to reach my Mother by phone and out of concern she called 911. My Mother was found passed out in her bathroom floor. She had not been eating and was in renal failure. When I arrived at the hospital, she was recovering in the ICU. I had never seen her so depressed. Even when they moved her out of the ICU, she was so depressed that she appeared catatonic. I would talk to her and she would just stare with a blank expression. After a few days, she was ready to be discharged. I worked with a social worker to get her into a rehabilitation facility because she had muscle atrophy from sitting with little movement for several weeks.
I returned home during her stay at the facility and made arrangements for my uncle to pick her up and take her grocery shopping. I arrived the next day to help her get settled in at home and make sure she was OK. Much to my dismay – she was anything but OK. She came to the door with sunken eyes, her hair was dirty and she was very weak. Her groceries were still sitting on the table from the day before. I took her back to the hospital, and they kept her overnight because she was dehydrated. I decided leaving her alone was a death sentence. I could not keep making the 6 hour drive every weekend. I packed up her bags and took her home to live with me.
My spouse was furious with me. I did not even want to bring her into our home for my own self-preservation. One of the reasons I lived out of state was to avoid being manipulated by her emotions. However, I could not be responsible for leaving her alone to die.
I was not equipped to deal with the severity of her depression. She would not care for herself. I had to assist her with daily hygiene. She was still so depressed that she would defecate on herself and urinate while sitting in my living room chair while watching TV.
Fortunately, one of my good friends was the director of a mental health facility that offered outpatient and inpatient services. I explained her insurance situation since she was on permanent disability. He was able to help me get her into an outpatient program where a bus picked her up and dropped her off at my house each day. It was like daycare for the mentally ill. She spent her days in support groups and individual therapy. After a couple of months, they were able to get her medications sorted out to where she was able to function again. I will forever be grateful to my friend for helping me with this difficult situation.
After 5 months, she plateaued and was able to care for herself again. I offered to help her find an apartment in town or take her back to her home out of state. She ultimately decided to return home.
She was able to sustain her mental health for over a year until she received another devastating blow. My grandmother was diagnosed with terminal cancer. It was only a matter of weeks before she was off of her medications again and fell into a downward spiral. I came home at Thanksgiving and took her to the hospital for a two week stay. I came back at Christmas to spend time with her and monitor how she was doing. Unfortunately, she was off of her medications again. She was in terrible condition and had not left her living room chair for several days when I arrived. Her clothes were plastered to her body from not leaving the chair for so many days. I had to have the police force her to return to the hospital. Over the holidays, my Mother told me that she “did not want to do this anymore”.
At this point, I realized that she was not going to survive if I did not take aggressive measures. I called her psychiatrist and adult protective services to alert them that she was not going to be OK unless something was done. They were of little help or support.
My Grandmother passed away on March 17th of that year. This was just a couple of weeks after my Mother’s 60th birthday. My Mother was so angry that she refused to attend any of the funeral services for her Mother. She had also refused see my Grandmother in the hospital during the last days before she passed away. I drove back home feeling discouraged about my Mother’s future. In hindsight, I realize my Mother’s anger was her attempt to push me away.
About a month after my grandmother’s passing, I called asking for help from adult protective services. I even called the police and had my Mother taken to the hospital. The social worker from behavioral health saw her but did not take any action to help my Mother. I was very upset because I felt that I had exhausted every resource. I remember expressing my concern to the social worker that she was only eating pizza. Her only response was “at least she is eating”.
On Mother’s Day, I called her to wish her well and see how she was doing. Right away I could tell that something was very wrong. Her speech sounded off – almost slurred. Could she have had a stroke? I called 911. Fortunately, the police officer was the same one who helped me get her to the hospital at Christmas. He was very kind and relayed to me she had been in her chair for several days and was too weak to even come to the door when they arrived.
The emergency room doctor told me she was in renal failure. They were running tests, but did not think she had a stroke. I arrived in town a few days later, and was not prepared for what I saw. She was completely emaciated, she could not open her eyes completely and she seemed sedated. I immediately called the doctor on call to find out what was wrong with her. After spending a few hours with her and talking to the social worker, I left the hospital for the day. I made the decision to become her legal guardian.
I returned to see my Mother the next morning. She appeared to be sleeping, but I couldn’t wake her. I tried everything. I called the nurse and spoke to the on call doctor. No one could tell me what was wrong. A few hours later she was moved to the ICU. Her blood pressure had dropped so low she had slipped into a coma.
I sat with my Mother in the hospital for a few days hoping for some sign of improvement. The neurologist ran a brain scan 3 times. There was no change. She was not breathing on her own and her brain activity was only 3 on a scale of 12. I made the painful decision to remove her from life support on June 1, 2006. I held her hand until her heart stopped. Based upon the autopsy, thiamine deficiency from her poor diet had caused irreversible brain damage.
My husband at the time asked me if I was relieved. Relieved? How could I be relieved? I had failed – she was gone. Those next few months were very difficult for me. I can only imagine what someone goes through losing a child. She was almost like my child. I had been caring for her since I was only a child myself. Over time, the guilt passed. I tortured myself for a time wondering if I should have brought her home with me after my Grandmother died. Yet, I finally forgave myself knowing I had done more to help her than anyone else in her life had, and far more than the average person dealing with mental illness is typically able to do.
I remembered when my Mother told me she “did not want to do this anymore”. She was a tortured soul and did not want to suffer. I could not will her to choose to live no matter how much I loved her. It was her choice to be at peace.
For anyone suffering with how to help a loved one with mental illness, please know that you are not alone.