Call. She wants to start her own non-profit organization for young caregivers like herself. Her inspiration for creating an organization came from similar
ease their loved one has. By knowing what they are dealing with, caregivers can understand the symptoms and the needs of their parents. Knowing the
services made available for young caregivers, called young carers, in the United Kingdom. She wants these children to get the things they need to strike a balance in their roles as a child and a caregiver, such as tutoring and transportation.
Williams says it's hard for other people, counselors included, to understand the complex dynamics with young caregiving. "No one else can relate to this kind a situation. Not only am I dealing with my mom's disability, I have to deal with my mom coping with her condition," Williams says.
Another option besides home health aides is caregiver respite. Carolyn Hanson, coordinator for Care for Caregivers, says the program allows caregivers time to themselves. A volunteer or staff member goes to the home and keeps the parent company while the caregiver can take a nap or run errands.
Hanson says the Care for Caregivers program also teaches the essentials of caregiving. Hanson says young caregivers need to first address the issue of who will have power of attorney. Power of attorney is a legal document that is used to establish that a caregiver has legal authority to make financial and legal decisions on behalf of the person being cared for. "Don't wait until the advanced stages of the disease because your parent may not be capable of declaring it later, which leads to high court costs to iron it out," Hanson says.
Caregivers also need to arm themselves with knowledge of whatever dis-
disease also means learning how to talk to a physician so the caregiver can understand what the parent needs. "Sometimes doctors have a tendency to exclude the caregiver. Caregivers need to be assertive when they talk with the doctor," Hanson says.
Coping with the system
Beth McLeod, author of Caregiving: The Spiritual Journey of Love, Loss, and Renewal, says the lack of services and the medical culture makes caregivers feel like its fault. "It stinks," McLeod says. "The system has really done a piss-poor job for the sick, and for caregivers." Twelve years after parents' deaths, McLeod still deals with the depression left from caring for her parents. Even her work wasn't supportive.
In the End...
suffer. It's even harder to help them when you're young. They wonder if they will be in the caregiver role for the remainder of their parent's lives.
Today, I try to help my mother as much as possible. No one has to live with my mom. I go to see her some weekends. I might run some errands for her or fill up Fred. But now, she has found friends to care for most of the things she cannot. My role as a caregiver has slowly changed because I don't have time to properly help her. Instead, my role has changed into something better. I am now just a daughter. I enjoy going to see my mom now because I am not worried about what she might need me to do. Instead, she just wants my company. Some nights we even stay up late talking. Sometimes, I do think my mom might get better.
— Jessaca Massey can be reached at jrnassey@kansan.com.