Written by, Barbara Larson
First of all, I want to thank this wonderful website and those involved with it. It is inspirational and healing, for those of us who are or have been caregivers to those we love.
My name is Barbara Larsen and I grew up with seven other siblings in a small home in Salt Lake City, Utah. We didn’t have much but we were very happy. I shared my bedroom with 3 of my sisters. My sister, Joyce was the fifth child and two years older than I. She was born with Down Syndrome and her mentality only reached that of a 4-5 year old. She was very challenging for my parents, as I remember her tantrums and nothing would control them. She scratched herself and made herself bleed. She wasn’t potty trained until age nine along with many other complications. There was never any complaining. My parents did get
frustrated, but the love shined so bright it would wipe away the frustration.
I grew to love my special sister and I remember the day I told her I would always take care of her. As my parents grew old it was hard for them to take care of Joyce and they worried about who would take of her when they passed away. I assured them I would take care of her, only remembering the good times, when her sweet personality made me laugh, and how much fun she was to be around. I thought about how great it would be to have her with me. I pictured it like a Cinderella story.
My dad passed away in 2007 and a year later my mother needed extra care from a fall she had taken. Her leg would not heal, so she went to a care center and Joyce came to live with me, my husband, Leroy, and our six children age ranging from seven to eighteen. My sister was about fifty-three at the time, which is considered old for a Down Syndrome person.
It was wonderful for a year. Joyce would go everywhere with us and my kids would play with her. I taught music lessons and she loved listening to the music. Our boys were active in sports and she enjoyed going to the school sporting events and watching them play. Our girls were in choir and drama and Joyce was delighted to watch them participate in programs and plays. She was just part of the family and we loved it. There were challenges that first year, but we enjoyed having her with us.
The following year her seizures became more frequent and she needed 24 hour care. My Cinderella story wasn’t happening. This was the hardest thing I have ever done. I still had young kids at home, busy with school activities and I taught music lessons. How was I going to do this? I remember the days I was frustrated, and would always think of my mom and dad and their example of patience and love, and it helped me through it. Also humor helped us get through the trying days. My children learned to love and serve her. They did things I would never have asked them to do. It was amazing how serving Joyce brought out the best in everyone.
I also turned to siblings who would give me breaks by taking her during the day and sometimes on weekends so I could just be a mom. I let half my music students go, which relieved some of the pressure, but Joyce didn’t want to eat anything. Everything made her sick. She had no control over her bladder and I was changing her quite often. She had seizures regularly, and I sometimes felt I couldn’t take it another day.
Well, that day did come when my youngest son had been in a serious boating accident at Lake Powell and had to be life flight to Primary Children’s Hospital which was 388 miles away. This caused him and me post-traumatic stress. I remember the day I lost it with my sister and yelled at her. She didn’t deserve it. It made me so sad I cried as I hugged her and said how sorry I was. I began to fall apart because of all the stress. Exhausted, I finally told myself I couldn’t handle everything any longer.
I will never forget the day I had to tell my angel sister good-bye as my sister in-law drove her to the care center. I felt like a failure. I thought, Why couldn’t I do it? My mom took care of her. What was wrong with me? I cried many times about this. I visited her often at the care center watching her slowly deteriorate was tough. My angel sister passed away about 1 ½ years later. It has taken me a long time to look back and be okay with all that happened.
I want others to know that it is okay if you become frustrated, as long as it’s dealt with in a positive way. It’s okay to say “I can’t do this anymore.” Find outside help, because sometimes it is the best solution. It’s okay, if it comes to a point you can no longer take care of your loved one in your home. Let the professionals do it. There came a time when I knew others could take better care of Joyce than I could. It was difficult to let her go, but we still loved and supported her at the care center even though it was hard to watch her slowly leave us.
After all this, as I look back, I still feel her presence in our home. She blessed our lives so much and I would do it all again. The only things I would have changed are my expectations and the realization she wouldn’t be around much longer, so enjoy the time I had with her.
My husband and I, along with our six children have been changed for the better by having the opportunity to care for our Joyce.
In loving memory of Joyce Dibble.
Thank you Barbara for sharing your touching story. I don’t believe Joyce, is the only angel in your home—you are also. She was so lucky to have so many people love and care for her. What a great example you are and a huge difference you made in Joyce’s life. You are an angel sister.