Last time we talked about the information you needed to provide to hospital staff if you had to leave your loved one with a disability in the hospital alone. We have heard from families across the country, the separation is unimaginable. They report feeling beaten down, scared, worried and exhausted by their own thoughts. Some explain a “gut wrenching” feeling is always there. They ask, “How can I keep my loved one less vulnerable when I am not with them? I have always been by their side, holding their hand, protecting them, calming them and sometimes being their voice during a hospital admission.”
Although there is not a simple answer, there are some things that can help. Go back in time when you were with your loved one in the hospital. Think about how you can manage those same things from a distance. We understand that things that give you power and control take courage. Be persistent, consistent and do not give up. Strategize new tactics if necessary, it can give you a hope and sense of power.
Do not allow the nightmare of helplessness and scenarios that play over and over in your head (are they warm, comfortable, scared) immobilize you. Focus on what you do know: You are doing the best you can. While showing love in isolation is hard, it IS possible. It is important to remember you have advocacy tools that you can use: you know what is best, what is needed and what is important to keep your loved one safe. Put yourself in “advocacy warrior” mode. What we know to be true is still true, you are the protector, bring your competent self. You are fearless, creative and resourceful.
One family’s account:
I have always been at the hospital 24/7 when my loved one with a disability is admitted. I make sure I know the names and faces of all staff providing his care. I tell everyone about my loved one when they are not sick (student, employee, athlete, best friend). I quickly learn who I can depend on for support, medical information, patience (not always the same person). I want to know WHAT to ask the doctor during rounds so I do my homework before hand. I ask questions of the nurses and other hospital staff to help me prepare. After leaving my loved one in the hospital alone, panic set in. How can I get to know the staff? How do I find out what to ask the doctor? I had to be creative. I requested that all labs and radiology reports be sent to me. My dear friend, a nurse practitioner, offered to look at them for me. This was so helpful. She outlined some specific questions I could ask the doctor.
Next week we will share some of the successful advocacy families and advocates have used asserting the federal civil rights laws to keep people with disabilities safe in the hospital.
TASH member and family member, Denise Quigley has advocated for the rights of people with disabilities at the Georgia Advocacy Office for nearly 25 years. Like many of us, she is concerned about the ways we can continue to support the people we stand beside while in the midst of a pandemic.