I crumbled emotionally today at the hospital.  I could have predicted it as a number of heart-wrenching conversations with my father have taken place in these weeks.  I am tired and fragile. My feelings are running the gamut of anger, despair, sadness, peace, and hope.  Watching someone become suddenly confused and disoriented is hard.  Without warning, the person you know and loved is different and yet, I am grateful for the moments when Dad is there, under it all, joking around or talking about something that reassures me he is still here.

I arrived earlier than normal today as I had woken up early and decided to go visit right away.  I arrived just after Dad had been sick again.  He had not been able to eat breakfast.  The baby docs, as I call them with great respect, came in to do their rounds. After two and a bit weeks of not getting any answers, I finally called a friend who could help.  I had put it off for awhile, wanting to make sure that the docs here could figure things out.  Goodness knows that they have tried and the good news is that Dad has not had a seizure in about 40 some hours. I asked my friend to think outside the box and knowing that this person could not see my father’s chart, I tried my best to answer questions and was given a couple of suggestions which I presented to the team this morning who listened with open minds.  The sad truth is we may never find the cause of these seizures but I hope that they can at least be controlled.

However, today still finally broke a piece of me. Layers of stress exist that the medical team does not know about.  Every time I have walked by my sister’s name on the memorial wall at the entrance these weeks I am reminded that this hospital could not help her either.  I had gotten past that I had thought but these weeks I am haunted by that memory, knowing that it was a doctor’s error that sent her away from the hospital.  Twelve hours later she returned but it was too late.  By the end of the day, she would be dead. So….yes, I am frantically trying to let the doctors do their jobs but at the same time, I am irrationally compelled to consult Dr. Google and real doctors who I know who might catch something others are missing.  I keep telling myself that they really are a stellar group of young folks but I cannot help myself right now. I feel fear and anger rising when I watch my father ask for the third time in 15 minutes why he cannot go home or when the food tray arrives and it still holds very little that he can eat even though we have filled out forms and the nurses have made calls. This hospital feels like an enemy more than a friend at times.

Late last week, Dad opened his eyes one night and looked at me, asking, “have you planned your funeral yet?”  Who would have thought such a question was a reason for rejoicing?  He had had a lucid moment and we were able to talk a bit about that.  I then asked him about his DNR order and he had simply shrugged, saying I have to die sometime. I agreed with him. This week, as I was getting ready to go home, Dad looked at me and inquired if his youngest daughter was coming tonight yet.  My heart stopped. I took his hand and simply responded, No, not tonight, Dad. I could barely contain my sorrow as this father asked his dying daughter if his dead daughter was coming to visit.  I thought to myself, You better not, punkin! Not yet, anyway. Then I thought maybe at this moment he does not remember that I am dying either and that would be a blessing. I will take whatever gold that glimmers at this point.

I am not even sure what finally pushed me to the edge of the precipice this morning. My dad rarely complains of pain.  He told me to move his leg which I did.  He said it was sore on and off.  Some time later, I saw him rubbing it and I asked if it was hurting.  The nurse had suggested just using a hot blanket on it to see if that helped.  I pressed the call button and no one came so I went in search of the blanket myself.  Placing it on his leg, I hoped it would help.  I could see he was still agitated.  I tried to get him to tell me how bad the pain was–this from a man who forgoes pain killers after–and during sometimes–hip and knee surgeries. I was expecting a three at most on a scale of ten. I held up one finger, then two, and finally three.  His hands moved. Both hands opened and closed. Ten, Dad? He shook his head.  All ten fingers flicked open three times.  Thirty?!  He nodded.  This from a man whose pain tolerance is incredible.

He was become harder and harder to comprehend as the morning wore on. He seemed desperate to have me understand what he was saying, taking my hand and drawing letters into it when I failed three times to guess what he was saying or spelling. For thirty years I helped facilitate communication for others and now I could not help him be understood. We tried pen and paper to no avail. The nurse had called the health care aide to help change Dad’s position and to wash him while she checked about what could be given for pain. By the time, the aide arrived, I was a mess, debating about whether I should go on my trip or cancel, wondering if Dad was just too drugged or if this damage was permanent or not, and predicting what family and friends might have to deal with when my time comes. My usual stance of staying in the moment was shattered. I was all over the place. Desolation was grabbing me and dragging me down into a sewer. I needed a pair of eagle wings to rise above it.

Thankfully, I had a lunch date with a friend and as she arrived at the restaurant asking how my father was, I shook my head as my eyes filled with tears. By the end of the lunch, even though I had hoped for a different interaction, I was very grateful for the one that did occur.  I was a different person when I got back to the hospital again, white board in hand and a clock with large numbers.  I hoped that this might enable Dad to either write or point to letters to spell out what he needed when he slipped into this land of the unintelligible.  Soon I found out that he could no longer write; he could not form letters, only jibberish.  Next I discovered that he did not have the energy or strength to lift his hand to point at the letters.  He could not say all the letters in the alphabet either, about G, he began to get scrambled.  I was being too ambitious apparently. We took a break.  I wrote some sentences on the board.  He could read the name of the hospital.  He struggled a bit saying the date.  He got stuck and read the next sentence three times.  I turned the board down and lifted it up again and we did another two sentences before he started repeating that sentence so I decided that was enough for today.

He slept for a bit before opening his eyes and asking me how he got here from a city out West where we had spent summer vacations with my mother’s family.  I side tracked the question, asking if he liked the lake there and commenting on other memories.  He loved the lake there and was soon smiling. At some point, I said I was bringing his wife up and that he should watch the new clock.  She would be here in about 20 minutes.  He looked at the clock and nodded.  My sister texted me in about ten, saying she had arrived at the hospital and Dad was asking for Mom.  I reassured her we were on our way.

When I finally came home I crawled into bed and pulled the covers over my head.  Desolation was claiming victory.  I woke up from an hour long nap and closed my eyes. I felt horrible on so many levels. I had a choice to make.  I chose eagle wings, hoping to renew my strength by trusting in the Lord in this hardness. I threw the covers off and rose up.  I went into the kitchen, turned on the radio, and danced.

Peace,

Suzanne

Reflection Questions

Desolation spirals you downward away from God and into yourself.  Can you recall a time of desolation in your life?

Have you ever consciously made a decision to say no to desolation and yes to consolation?

Prayer

Eagle-Winged God, bear me up when I grow weary and faint.  Keep desolation from destroying my peace.  Call me gently back again when I lose sight of being able to soar during the trials of life. Give me sharp vision to stay focused on you alone. Amen.