If your loved one lives in a facility, you may have experienced this recurring scene: You walk into the building for your normal visit, expecting nothing new, but voilà—a staff member pulls you aside to deliver some bad news. Other staff members then share different opinions about the same problem. Who do you listen to? How do you figure out the best thing to do for your loved one?
This past weekend, for example, I drove downtown to visit my mother, Judy, in her nursing home. She has advanced dementia, and I’ve been her caregiver for 7 years—first in my home and then in a variety of dementia care facilities. When I walked into the dining room Sunday evening to sit with Mom and spoon-feed her, the nurse on duty said, “Hi. I need to talk to you. Yesterday your mother had three seizures, one after another.”
“She did?” Mom has had mild seizures for several months—not violent seizures but the kind where she spaces out and becomes non-responsive. She was on medication at one point to reduce the seizures but it made her lethargic & weakened her ability to swallow, so we took her off it. As far as I knew, her seizures were infrequent.
“Yes,” he said. “And usually if that happens we’d send the person to the E.R. But we didn’t know what you would want.”
Mom’s on “comfort care,” meaning that she shouldn’t be taken to the hospital for any invasive tests or procedures, and if her health declines suddenly we would call hospice. But what should we do in this case? I told him, “I need someone to explain to me what would happen if she got a fourth seizure but didn’t go to the hospital.”
“Well, the seizure might move down from her face, where they are now, into her chest, paralyzing her diaphragm and making it difficult for her to breathe. At the E.R. they could give her medication to stop the seizures. We don’t have that kind of medication here.” He looked at me gently. “If it were up to me, I’d send her to the E.R.”
With that information, I agreed with him about sending Mom to the E.R. Early the next morning, though, I called the head nurse on Mom’s floor. When I discovered that she was out for the day, I dropped by and talked to the temporary head nurse. She told me that instead of calling an ambulance after a second or third seizure they could try giving Mom Valium. We agreed to try that, and I left feeling relieved that Mom might be able to avoid the E.R.
Tuesday morning the head nurse was back at work and called me. She told me that Mom is actually in very little danger of having a full-body seizure that would affect her breathing. She thought Valium unnecessary. But she said she would definitely call an ambulance if Mom’s seizures got worse. Feeling reassured, I agreed with her plan to wait and observe.
Thank goodness I knew from experience that the head nurse was the key person to talk to. Staff members like her will go out of their way to communicate with you as an essential part of your loved one’s care team. They’re often hidden in a windowless office somewhere, but these angels do exist, and they’re a treasure.
submitted by Martha Stettinius: author of the new book “Inside the Dementia Epidemic: A Daughter’s Memoir,” She serves as a volunteer representative for New York State for the National Family Caregivers Association. For more information about the book, please visit www.insidedementia.com. Martha can be contacted at Martha@insidedementia.com.