Freedom House Survivor Stories Part 2

PIA THOMPSON - by Beverly Thompson, Freedom House President

It has been ten years since the incident that caused my daughter to lose her short term memory.

It still feels like yesterday when I was called by a hospital and told she had been found face down on the beach, not breathing.

This came about after a night of having a great time in Tijuana drinking and dancing. She drove back home, picking up her wet suit and tanks to go diving. When she arrived at the beach, the life guard refused to let her go in the water. We can only believe that she went down the beach, passed out from the heat and alcohol in her system - a dangerous combination that impacted not only her life, but her whole family.

The doctors gave us little hope of recovering her memory. With help she does have her long term memories but cannot access them without that help. Short term remains in the moment. Pia can do most of her personal grooming and other activities but must be supervised. Due to this condition, it is hard to place her in any facility other than a nursing home where there is supervision. For now, she lives with me, she is secure and happy and seems to have no desire to wander out on her own. But the family must plan most activities around her disability, and this does cause conflicts between members. The biggest problem for a family is the resentment and the guilt. The resentment comes because this person has laid great burden on their independent lives, and the guilt is the individual’s for feeling that way. Every family lives with these two overriding emotions, and they never go away.

Laughter is important - you can’t always cry. To survive, you must find some balance. You try to live in the moment, not thinking of what-ifs or what could have been. She has become more independent, more helpful when asked to do odd jobs around the house. We still have times when she has insight and can talk about her past, but it’s very transient. She needs supervision for some things as she loses her train of thought and will half finish work. Generally she is cooperative, but occasionally the other side rears itself and she will say “I don’t want to” to everything. Most of the time, however, she wants to help with whatever we are doing. I find a Diet Pepsi works wonders when she doesn’t want to do something.

Mine is a whole different story.

Before her accident, I was a wife, woman, and psychologist with a career looking toward retirement. My life took a turn that I could not change. The unexpected can be very frightening; not knowing how my daughter would be once out of the coma, doctors telling me there was little they could do, when I just wanted some hope. I could not take her home when she was discharged as I had a full time job. A friend volunteered to take her, but Pia’s mental and physical problems were more then she could deal with. I took her home where my husband could watch her during the day. I was able to continue working for the next year. My husband was not well during this time. To make matters worse, he then had an accident from which he did not survive. I now had to find help for Pia and continue to work. These were difficult times complicated by her lack of memory and wandering when left unsupervised. I finally found another job in a Health Day Care where she could go to work with me, it was a secured program: no leaving allowed! I retired after three years working in the new program and now Pia is living with me full time. I continue to work with her on memory and personal skills.

Taking care of anyone with physical and mental problems is a daunting task when you look at “your” future, especially, looking down the road of aging and your own personal health problems. None of us would have chosen this path for ourselves, and cannot perceive a family member taking on the challenge when we are no longer able. I have felt all the frustration and anger at this person who has left me with such an indomitable task. It has put the rest of my life on hold, and to be honest, I do resent it. But I am a mother first and a care giver second, so I bottle up my feelings and deal with it.

I know that all of us who have or are living with a brain injured individual know what we as a group face every day. I had decided it was time to do something about our plight, so my friend Donna and I decided to form a non-profit organization “Freedom House.” We are working very hard to find a permanent solution by opening homes for these individuals, and for our peace of mind. It will take time, but it will happen.