Two final days with Ellie

Donna and I arrive at Taylor House at 1:05 p.m., Wednesday. "Ellie is agitated. Ellie is manic. She needs to go to Mercy-Franklin. She dumps water on the computer keyboard. She hasn't slept for two days."

Ellie does not disagree. "You drive me, David. I do not want sirens. I hate sirens. Give me some dignity."

"I don't feel comfortable driving you, but I will if you want me too."

"What if Ellie jumps out of the car?"

"I am not worried about that. I am concerned about the oxygen tank and her medical safety."

"Actually, you can not drive her. We can not accept the liability."

"Where are my teeth? I need my teeth. This pillow is mine. How many vases do we have? Nine. We need to make sure that we pack everything that is mine. You need to stick around for the next few days."

"Do you want to sleep, Ellie?" "Yes."

Donna and I have a long discussion with the social worker, while Ellie sleeps. "We are not equipt for psych. Our nurses do not know how to deal with this type of situation."

"Why can't Dr. Greenfield come here? What is the plan for after here? How long does she need to be at Mercy Franklin?"

"A psych evaluation will last seven to ten days. I am not sure what will happen after that. We are discharging her from Taylor Place. She is not going through the dying process."

Donna and I are still in shock from all of this as an ambulance carts Ellie to Mercy-Franklin. No one tells us that she is gone.

We gather belongings into bags and carry as many vases to my car as we can. We unload the belongings to a conference room at Mercy-Franklin and visit Ellie there, where she is smiling broadly at Dr. Greenfield. Teddy bears are in each arm. "People love Ellie here," Dr. Greenfield tells us all.

Janice visits with Ellie. Staff people fill out forms and ask questions of Donna and me.

Nurses tell us that agitation is normal. They are miffed that Taylor House sent her here. They check to determine that she has been discharged.

Dr. Greenfield wonders out loud why Ellie is here instead of at Taylor House. "They called me four times this morning. They did not even wait for the drugs I prescribed to take effect. Hospices have all types of demanding patients. Ellie's condition should be easily treated by a hospice. If they are not comfortable with "psych", they need to be. My good friend is CEO of the Iowa Hospice System."

We ask where Ellie will go next. Dr. Greenfield suggests Mercy Hospice in Johnston.

Donna and I continue to listen to and speak with staff. I suppose I am the one who has become agitated.

"Where do you want to go, Ellie, after here?" I ask.

"Taylor House." Ellie responds.

"Do you want to go home?"

"I am too sick to go home."

I find Ellie's teeth that she wanted when she first arrived. The teeth were at the nurses station. "Put them in hot water." she asks.

Ellie fumbles with the teeth and her mouth and gives up after some furious effort.

"Turn off the radio back there." Ellie asks.

"There is no radio."

Ellie loses the ability to speak before our eyes. "We don't understand what you are saying."

We say goodbyes and I love yous. Staff talks with us some more. We consider visiting with Ellie some more, but it is late. Donna and I drive back toward Minnesota.

The phone rings one hundred miles later. "Ellie has declined significantly since 4 o'clock and is going to Lutheran."

"Why not to Mercy Hospice?"

"Good question."

"I called Taylor House several times. They are not answering their phone."

Later phone calls confirm that Ellie is in Lutheran Room 243.

I drop off Donna at 9:30. I arrive home at 10:15 and want to tell everything to Monica, who sets up discharge plans every day as an occupational therapist.

"They were afraid of the "psych" label" Monica tells me.

I drive again the following morning because Ellie has told me I "need to be around for the next few days."

I arrive at Lutheran at 1 p.m., and am met by John. "Janice drove Ellie's belongings here last night. She visited this morning. Ellie has not been responding."

We visit Ellie's room a few times. She lies there.

I call Taylor House, tell them what the doctors and nurses told me last night, tell them that Ellie is dying and tell them that Ellie wants to go back to Taylor House.

Whomever answered the phone listens politely. "No. I am sure she has not been banished."

I am high on adreniline and at the same time feel useless. John and I decide to go to the Mercy Hospice in Johnston. "It is just past the Hy Vee. My mother died there in 2003."

We ask to see a room and get a two hour tour. They have heard of Ellie. "It is just a matter of having a doctor's order. Then, an admission nurse will admit her." "No. Her psych history doesn't scare us."

Ellie has still not responded. A nurse tells me that her breathing is slowing and that she appears to be dying. Hospice admission nurses for three places will arrive tomorrow.

"They would not move her until Monday, would they?" I ask. "For Ellie, Monday is an eternity," the nurse responds.

I see no reason to stay, but have nothing better to do. I am pleased when two of Ellie's group friends visit so that we can talk. They leave, then Darcy, who is handling financial details arrives. We have much to discuss. Then, Terri, the admissions nurse from Taylor House surprises us. Janice arrives and we feel who have a quorum, even though none of us has ever previously made a decision for Ellie. "Who was the doctor that approved Ellie's move yesterday?" "Shouldn't she stay here until at least tomorrow, until her condition improves?"

"You mean Dr. Greenfield did not approve her move? Maybe, it was the Taylor Place medical director." "It really doesn't matter when Ellie is moved. It might as well be tonight." Terri tells us.

An ambulance arrives at 8 p.m., Ellie and her possessions are moved again.

Ellie gets her same room back, with the same patio she likes.

Upon arrival, the nurse says Ellie is "breathing like a fish out of water".

"Yes. It is quite a bit worse than it was at the hospital."

"Ellie's breathing is getting shallower and less frequent. She will probably only live a few hours. Ellie might surprise us and make it until morning."

So, I write this on Ellie's computer in Taylor House. Ellie is breathing slowly. The computer has not moved over this eternity of two days.