Frontline Initiative Dual Diagnosis
How I spell relief?
Caregivers* are the life support and backbone to families, especially to families such as mine. My husband and I have four children, one of whom has a developmental disability that is exacerbated by episodes of mania and psychosis.
We have had several caregivers over the 19 years of Thomas’ life but there are two who stand out. These two are the ones who knew Thomas, understood him and really cared about him as a person. These two even volunteered to hang out with Thomas prior to being compensated as a caregiver. They still keep in touch with him and take him out when they are in town. They get him. I couldn’t feel luckier knowing that these two people and their respective spouses love my son and enjoy spending time with him. Thomas loves and adores his friends and his enthusiasm over outings is infectious.
As a mom of four and a part-time nurse, my life and health depended on caregivers to help so that I could work, go to the doctor, attend another child’s special event, or exercise or take a walk with my husband. My first and foremost thought for every moment of the day would be who would be there to take care of Thomas. All events were planned around his care.
Our son’s caregivers gave me life. At the same time, they provided my son a safe environment by entertaining him, taking him various places and building lifelong relationships with him. They took him places that he loved but I just didn’t have the energy to do. I often wonder if they know how instrumental they were to our family. Or how desperately I waited for them to arrive so I could have a break to just sit and think or take a nap.
I also remember having caretakers who were not reliable. They would “forget” to come, maybe thinking that it wasn’t really a job but just “babysitting.” I remember bursting into tears at times when I had been so looking forward to a break but the caregiver didn’t show up. I don’t think they realized how much I relied on the couple of hours of their time to survive. What really hurt me though was that my son so looked forward to someone coming to do something with him. His sadness from not being able to do what he planned broke my heart. How could I explain this to him when he didn’t understand?
Now that my son lives in a supportive community with appropriate supports, I work hard to advocate for our caregivers. I think about all the other families who are struggling but do not have the strength to even ask for help. Even if they could ask for help, would there be anyone to help them?
Our caregivers need to make a living wage. This is hard work. It is not babysitting. It takes so much to safely care for a person with a developmental disability who also happens to have a mental health issue. Many parents are finding that the caregivers disappear as their children grow into teens and adults. Families struggle and become isolated in their homes. Yet no one is aware because they are hidden away behind closed doors.
Caregivers are the key to people with dual diagnoses participating in our community. Not only do they provide respite and relief for families but also build relationships and provide new and interesting experiences for the person they care for.
Thank you to Gretchen and Alex for reaching out to Thomas. He loves you!
*Editor’s Note: In this article, caregiver is a general term used to define people who provide support. A caregiver could be a family member, DSP, or other source of support.