Stories from Caregivers: Joyce from HAWAII
HI
Joyce
FROM HAWAII
We are a challenged family. I have 2 adult daughters with Autism and other health challenges. I was in a bad car accident when I was in my 1st Trimester with my youngest. A distracted teen ran into my car while I was in a car with children in front of me in a crosswalk. I was injured badly. My youngest daughter never saw me well. She is 18. I had numerous surgeries to put me back together again. I mostly use a wheel chair. My poor health was too much for my marriage. I had to leave my older son with his Dad over 4 years ago. My son also has autism. He is almost 30. He was very angry I needed help. My daughters and I are finally getting fair care after 4 years. I do what I can from bed on a computer, and I help teach my daughters how to do all the adult things. I tell them social stories, break tasks down in smaller tasks, help them pay the bills, and they both are very computer literate. They watch my blood sugar, take care of making food to eat the best they can, and are learning chores. The worse my conditions get, the more caregiving demands they have put on them. We have been switching places. They care for me more than I care for them physically. It isn't easy. We feel sad often. I also have Dercum's Disease. The fat lumps cause a lot of fat shaming until the doctors find they are tumors, and also I had 97% of my pancreas taken out. I have type 3C diabetes. My daughters and I joke a bit and most of their free time isn't. It is by me on a computer game. I wish some way I could show them both how proud of them I am and thankful. My older daughter is 25. She works hard to do her best. She now drives and wants to learn herbal medicine. My younger daughter is more of an anime type artist. We dearly love each other. I moved us to a safer place, and within walking distance of town. We recently got a few In Home Supportive Care hours for me. The girls are taking little breaks playing Dungeons and Dragons with friends.
