Well, at least she doesn't

We had a staffing for Mom this week. At our request, hospice staff was there as well, and my sister articulated our concerns about the lack of supervision Mom receives (see previous post) and also the low number of aides on the zone. At lunch time, one aide is supposed to feed three residents, which means someone is eating cold food. When you add in the fact that this is cold pureed food, it seems also cruel. My sister mentioned that many times the nurse is also working in another wing, too, and not all nurses pay a lot of attention to the residents, but do just enough to get the job done. She backed these concerns up with a written copy, presented to the facility and to hospice.

As my mother has progressed through the dementia, I have looked around her at the other residents, and I have thought, "Well at least she doesn't..." At least she doesn't babble; that would make me so nervous; at least she isn't combative; that would make it so hard to work with her; at least she isn't distraught all the time; that would make it hard for me to relax if she were so discontented...

And after a short time after I consoled myself with a thought like this, Mom would start to exhibit whatever behavior it was I had consoled myself she didn't have. And I would adjust. Lately, though, Mom has been having what the staff called "tremors", but which were more like spasms. I would go in, she would grab my hand, she would stare into my eyes for a couple seconds, and she would start to flail violently. She holds her head periodically and babbles to herself. It terrifies my children and makes me feel helpless. When Mom starts with this behavior, the staff follows an anxiety protocol: removing her from the situation, talking gently to her, going through some other steps, and eventually giving her medication to help. It does take the symptoms down to a manageable level, but they do not ever completely go away until the next morning.

Many of the staff on Mom's zone truly do "get it," and one nurse had been talking to the hospice nurse about this manifestation of the illness. The nurse, T, really focuses on each individual and said that she noticed that Mom was fine in the morning, but she started with the tremors after lunch each day. She suggested giving Mom her anti-anxiety medication every day right before the nap to see if this helped with the anxiety. We could try this on a trial basis to see if that helped.

So my sister, the hospice nurse, and the facility nurse who gets it agree this is a good plan. The next day, my sister gets a call from another nurse at the facility, one who is a concern to us, and the nurse tells my sister, "The doctor's office called me and asked for more information, and I told them I don't see this every day." (No, because you are on other zones, also, and you don't pay enough attention when you ARE with Mom). "So we decided to do away with the anxiety protocol, but wait to give her the medication until she shows symptoms."

"Oh, okay," my sister said. Then she called me after work and told me.

So I called hospice and talked to the case worker. She knew we had the staffing, and she had a copy of the list of concerns my sister and I had presented about my mom's care. She knew that Nurse T had come up with this plan, but the doctor's office had called this second nurse, and based on what the second nurse said, the doctor didn't want to change the orders so drastically.

I then told her, "First, this nurse you called is one of the nurses we spoke about in our concerns. When she is on the zone, she is watching TV or doing crafts or sitting at her laptop--she is not attuned to the residents. She does what the job describes, but she doesn't go anywhere beyond that. Plus, she is not just in the same zone with Mom, as she is most days working two zones. I do not put much value in her insight or input. Second, these 'tremors' are more like spasms, violent flailing, and I believe they are caused by anxiety or fear."

The case worker said, "So you want to go back to the anxiety protocol?"

"No," I said. "I believe Mom doesn't know where she is from moment to moment. I have spoken to the overnight aides, and she is fine in the morning. But as the day progresses, and she gets more stimuli, she gets overwhelmed, and I believe she is terrified."

The case worker said, "I agree. So what do you want to do?"

I told her I wanted to try the meds before nap on a trial basis to see if that helped with the anxiety.

"Fine," the case worker told me, "okay," and got off the phone in a hurry.

"Huh," I thought, and called my sister and told her what had transpired. She said, "She was a bit abrupt with you." We hung up.

Not ten minutes later, the second nurse from the facility called my sister and said, "The doctor's office called. They are changing the orders so your mom will get the medication before each nap."

"That works," my sister told her, and cheerfully hung up.

Even though we have a good working relationship with the doctor, whom I respect, and her nurse practitioner, I am so glad to have hospice with us on our journey. We have tried to conduct ourselves with grace and dignity, and hospice allows us to do that, giving us support when we need it. They are not just about dying--they are truly about living: giving the patient and the family what they need to take this journey, even if is as simple as being heard or not feeling quite so alone.