My caregiving journey began in January 1988 when my Mother had a brainstem stroke. Being a single mother of two girls with no help from my father, she was very demanding of my sister and myself through the years. At the time of her stroke I felt that my life as I had known it was over. Now as I look back, I feel that Mom was afraid of being left alone, but she worked very hard and never let us forget which parent had left and which one had stayed.
When Mom had her stroke, my sister and I were advised d to place her in a home as we were told she would be nothing more than a "vegetable", but we thanked God that the stroke was minor and she got better. When she first had the stroke, I was very dependent on her even though I had a husband and two sons (14 and 10). As she regained part of her health, she still needed daily care, but her mind was good. My sister and I shared the responsibility of her care for seven years, but because of a new marriage, the pressures of a disabled husband and the stress of Mom's care, we parted company in 1995 after exchanging harsh words. Mom's care was now my responsibility.
I really thought I could do it all for Mom, my husband, two sons-and of course myself. I soon became aware of how impossible this was. My husband and I tried for over a year to keep Mom in her own home but it was so hard to keep both houses going, so after many months we sold Mom's house, remodeled ours and moved her in with us. That's when my emotions became overwhelming. I became so laden with guilt, lack of patience or understanding, and I began to experience the love/hate thing. I felt trapped in my own home, and stress soon began to rule my life.
My sister appeared again, threatening to sue me for money she felt she was owed, and I became both scared and hateful because my family (aunts, uncles, cousins, etc.) listened to my sister and questioned whether I wanted to control (in order to receive) everything Mom had. No one would listen to me, and I realized I hated myself and everyone around me. It was during this time that I found Gail and the Empowering Caregivers site. Gail referred me to a friend of hers who was a lawyer, and she set my mind at ease about my sister's threats to sue me. I felt the brick wall being lifted off my back!
It's been a year since I found Gail and Empowering Caregivers, and I feel that I took big steps during that time, but lately I seem to be falling backwards with the same feeling of being "overwhelmed". I realize I've given my power to other people, as I began to let their ideas and rumors take me back down.
My eldest son got married to a sweet girl who has a five year old son with Duchenne Muscular Dystrophy, and all of them moved into our home. My youngest son became involved with and eventually moved out of our home with a "lady" who is also a mother and has a bad reputation. I was shocked at the move, as we did not like her at all nor did we feel she was right for our son. Things still remain uncommunicative with him, and this made me begin to feel like a failure as a mother myself. I feared that I had lost my son.
During this time, my mother-in-law died suddenly and I had to have a complete hysterectomy. My emotions began to run wild and I began to question my every decision. I tried to be all things to all people, and I knew that no one could care for Mom the way I could. By this time all friends were gone, and the family members who used to come no longer did. I felt alone, trapped, completely out of control - and realized I was again in deep depression.
I kept coming to the Caregivers site, and although I kept telling Gail that everything was fine she sensed something was wrong. I was ashamed of the self-pity that I felt, and I really didn't want to hear how everyone else was doing all right. I also felt that I didn't have as hard a time as others who had to deal with Alzheimers (for example), because Mom still had her mind intact, so I felt like a failure because I couldn't seem to deal with her on a day-to-day basis without losing it. The fights between us got worse and I kept hiding my true feelings from her because I didn't feel the love for her anymore. I hated her for what she had become and I hated myself because I couldn't cope with things the way I used to. Thoughts ran through my head such as "you weren't here for me when I was a child so why am I still here for you now" and "why am I being punished-I didn't do anything to deserve this."
Mom treats me like a child of 12, and I am a 50-year old woman. I am tired of making decisions....I am tired of feeling trapped....I am tired of saying "I'm sorry" as if my feelings don't count.....I'm tired of everyone telling me that I'll get my just desserts later in life. What about now? I have given up everything to be the good daughter, and I'm looking for answers NOW - not in the future. I want people to see me-not the work I do or the fact that I feel empty.
I feel shame for the feelings I have. I put more importance on what people might think or do instead of what I am feeling. I don't want people to think of me as weak or as a failure, so I pretend I am strong and unfeeling, but in truth I am scared and hurt and don't know how to act any other way. I question my decisions and I am distrusting of others.
I know I have to change in order to let others know I need support, but how do I do that without letting everything out? When I ask for support and let someone know I am weak, I feel I am asking for pity - and when they give it to me I am angry because I feel I had to ask for it. Where is the middle ground? Where are the answers for NOW - not later? I don't have the answers, but until I find them I will try to just take one step at a time. Often falling and often not wanting to get back up, but I do and I will continue to until I see the "me" in what I am doing.
(P.S.- Sharon wrote the following letter on 2/16/2000):
Dear Gail,
I just had to write you this note because I am feeling so alive right now....I was reading the book " Don't Sweat the Small Stuff" and on the back was a list of other books. One caught my eye so I went out and bought it. It was "Shortcut Through Therapy" by Richard Carlson and I started to read it.
You know that I have gone to therapy for a short time and I really didn't find any answers - I only got more questions. I wasn't sure what I was going to find but I started the book and half way through the book it hit me like a ton of bricks.
First let me tell you what had just happened the day before. My son Don, the one who left home because of that girl, had just stopped by to tell me that he had quit his job after having a month off because of surgery. He was so far in debt that I thought he was losing his mind. He does have another part time job that he got to try and keep up with his bills but he is drowning right now.
It got real messy after he told me he thought I was the one who had turned him and his girl into social services and tried to mess up his life. I was hurt so bad that we had a huge fight and I told him if he wanted me out of his life so bad that I was so gone. I was so hurt that I thought it was all over for me and just wanted to die and end if all right then and there. I am still very upset about this but I started to think about the book again, so I picked it up and started to read again.
I was already read through the first two chapters and was beginning to think this was all hogwash but I continued. Got to the third chapter and after reading it I now began to see the light. I now see that I do not have to live in the past and I can live through my mistakes and they do not rule me. I feel one hundred pounds lighter now and I hope if you haven't read this book that you do and put it on the book list. It might not help some but it has brightened my life and I plan to keep reading and trying to live my life in a different plan. Thanks for listening and praying with me.
