Take a Stand, Be An Advocate For Your Parent
When to be an Advocate
Caregiving is usually predictable. You have a routine. There are some high’s, some low’s but they are manageable. Occasionally, a situation arises that isn’t in your parent’s best interest. That’s when you need to fight for them. They need you as their advocate.
Usually I agree with medical professionals, especially if they know us, have been in the trenches with us. Sometimes you butt up against bureaucracy or an individual steering you away from your goals. You need to take a stand. When this happens know why you disagree, you need facts, not just emotion.
After one of my mom’s hospital stays the hospitalist (a doctor who only sees patients only in the hospital) called. This was our conversation:
He: “You can’t take your mother home. She needs to go to a nursing home.”
Mom was still quite independent then.
He: “She can’t see.”
Well, news flash, she hadn’t been able to see for the last seven years I’d been her caregiver.
Me: “It’s not an obstacle at home.”
He: “She can’t get to the bathroom by herself.”
Mom had two IV’s, a heart monitor, a bed with railings and was in an unfamiliar hospital setting. The day before I’d helped her to the bathroom. She did fine, with her tubes untangled and pointed in the right direction.
Me: “I’m sure it will resolve itself in her home environment.”
He: “You haven’t even been in to see her today.”
I have no idea what his point was, but is was the wrong tactic to take with me. I had spent the two earlier days at her bedside. I anticipated she would be discharged that day. I am with her 365 days a year, seven days a week. I’d cared for her for six years. I figured if I could rest one morning before she came home, it was a good idea. My Irish temper flared. This man had never seen my mother before her admission. He had only seen her ill. He knew nothing about her or our home situation. He knew nothing about me. He saw Mom as a sick person in a hospital gown and a bunch of lab values in a chart. He made me mad. (no emotion there–just logic, right?)
I said I was taking her home, end of story. He reluctantly agreed but insisted she be evaluated at home by an RN, PT, OT and Speech Therapist (for swallowing). I said fine. I could live with that. I welcome home health services because they have good ideas about equipment and techniques. I didn’t appreciate home health used as a threat.
Mom came home that afternoon. As I suspected, at home she knew where everything was. She got to the bathroom on her own. Home health services came a few times. They were helpful but realized we had things set up at home for her care and adequate help. A nursing home was not the best place for her. She needed someone to fight for her. She needed an advocate. She’s now had two and a half more years at home and counting.