Wednesday, April 28, 2010

The House is so quiet

His heavy-duty oxygen concentrator lies sleeping in the hallway. One gets used to noisy machines, but once they're turned off, the quiet is unsettling.

David was admitted to the Palliative Care Floor at Mount Sinai Hospital yesterday. It was snowing. Very strange at this time of year, especially since we've had such a warm spring. Driving was a little freaky. They put him in the ambulance at the hospital, while I dashed to the parking lot, unlocked my car door, paid the exit fee and barrelled down the road, hoping to follow. A couple of blocks away I saw a yellow ambulance. Oh good - visibility was poor, so following a big yellow ambulance made my job easier - until it took a wrong turn.

Oops - my mistake - wrong ambulance. Good thing I knew where I was going and happened to end up at Mt. Sinai just as the Real Ambulance was arriving.

Things are much more relaxed. I can finally breathe a little bit, knowing he is receiving good care. The nurses are angels, the doctor - superb. Comfort is their goal and accommodation almost takes my breath away. I slept on a cot beside David's bed last night. Not too comfortable, but he slept like a baby all night. I wanted so badly to open a window, but they were sealed. Lights and noises kept me awake. I had not brought anything with me, so slept in one of David's T-shirts. Tonight I will sleep in my own bed, with the windows wide open. I hate being away from him, but really cannot sleep in the hospital.

I know this "letting go" process is a gradual one. I am learning to "let go" of his personal care. I need to let the nurses bathe him and look after him, particularly since I can't be there every day. The drive is about an hour. Twice as far as the active hospital. But I am wearing out. So I have to take a step back.

It feels like our paths are beginning to fork - he taking one and I the other. We can still see each other, still hold hands and kiss, still share coffee and meals, but I know it's time for him to move on.

I have come to realize that the human spirit is incredibly strong. I may have said it before (long ago when I first started blogging) that his body is crumbling, yet his spirit shines brightly and strongly through his eyes.

Most people would have left this Earth by now. But David's mind is still sharp. I bring him the mail and we open it together. He "instructs me" (as if I didn't know) on paying the bills and other household accounting. This keeps his mind active and busy and makes him feel as if he's still a part of Normal Life Out There. He wants to do some physio to gain back a little strength, so he can sit in a chair and hopefully stand up once again. I am humbled by the strength and fighting spirit he has.

As I drive home, I watch people doing everyday things: shopping, eating, walking. I speak to my children. "What can we do to help?" they ask. "Just tell me about your day. I need to know there is a Normal Life Out There somewhere".

Sunday, April 25, 2010

I feel like I'm in..

the Twilight zone these days.

After a 3 week period (back in March) of Hubby feeling increasingly weak and sick, I called an ambulance to take him to hospital. It was supposed to be for a couple of days only. A few tests, treatments, some medication and hopefully back home.
No way.
He's been in hospital ever since.
We're going on 18 days now.

What a nightmare. First the emergency ward. A horrible place to be for a night, never mind two. Hubby was put on wall oxygen using a "rebreather mask". In other words, a very high amount of oxygen and one we cannot duplicate at home.

The nightmare began when nurses decided to adjust his oxygen. No rhyme or reason, just felt they should turn it down. Definitely not good. Poor Hubby nearly passed out several times. On one occasion, somebody turned it off because it was too noisy.
I shrieked.
Tore open the curtain in the next cubicle (where hubby's oxygen was located), turned it back up and yelled "WHO TURNED OFF THE OXYGEN!??"
There was only the poor patient lying in bed and (get ready........) a cardiologist. Now I have no proof that it was this doctor who inadvertently turned the oxygen off, but there was nobody else there.

I marched up to the head nurse. Told her what happened. Told her I was not going to file an "incident report", but she should know what is happening in the E.R. Magically, hubby was moved to "overflow" the same day.

Overflow is a holding unit for patients awaiting admission. There was a little more privacy. More space to put things.
However - once again, the nurses took it upon themselves to "wean" hubby off his high power, what is supposed to be short term, oxygen consumption.

Nurse #1 took off this specialized mask and gave him the "prongs" (same kind we use at home). He then proceeded to turn the oxygen setting down from 15 to 6.
Once again I shrieked like a banshee!
"M'am, I know COPD. Don't worry."
"M'am, calm down, this is doctor's orders."
"WHICH DOCTOR?" I knew nobody had given him any such order.
No answer.
Still no answer.
"I know what I'm doing."

Poor Hubby's oxygen sats descended like a stone. Before I could punch this nurse out, he realized he was doing something wrong. So he removed the prongs and put back the re-breather mask. Respiratory therapy arrived soon afterwards and I told the therapist what happened. She marched right over to this nurse and gave him "sh....".

The next day, Nurse #2 decided to do the same thing.
'NO WAY!" I bellowed at him.
He was more amenable - just turned his back and went on to another patient.
By this time I was beside myself. I felt I could not leave hubby for even an instant. The next day his respirologist came in and I told her what had been going on with the nurses. She was angry and wrote a note in the chart that NOBODY was to touch his oxygen. Finally!

There were a few more incidents, but I'm too tired to recount them. Now Hubby is moved to a ward and his care is much better.

My days are spent at the hospital. I do come home to sleep, even if it is fitful. Today I had to take a half a day off. I came home after lunch and slept the afternoon away. This evening I will go over bills and other paperwork that has been neglected.

Hubby is awaiting placement at Mount Sinai Hospital here in Montreal. If he comes home it will be a miracle. I keep hoping and praying, but the chances are slim.

Spring is in full bloom here. Leaves are coming to life. My garden is blooming. I brought Hubby some daffodils to put by his bedside.