I'm not ready

Five weeks ago, the telephone rang just before 8:00 a.m.
I had just gotten out of the shower and was towel drying my hair.

"Hello, this is M.S. Hospital calling."
My heart sank. "Yes?" I managed to croak.

"Your husband is desaturating."
That meant his oxygen level in his blood was very low and if they were calling me, it was because they could not get it up to acceptable levels. Bad news.

"Is he conscious?" I asked.
"He's sleeping."

"I'll be right there."

My mind went into over-drive. He's in a coma and the nurse did not want to tell me. She did not answer my question, but just said he was sleeping. If his sats were that low, then of course they couldn't wake him up. And we all know there is no resuscitation in the palliative ward.

Is he alive? Will he still be there when I arrive?
"Please God." I prayed. "Not yet. Not yet."

Driving as fast as I could, my mind sending David signals.
"Don't go, yet, sweetie. We still have lots to say. Lots to do yet. I haven't given up hope of bringing you home!! Hang on. I'm coming."

I don't know how I managed to do it, but I missed the exit. How on earth could I do that? This car has been driving to the hospital for 3 weeks, doesn't it know the way all by itself?

And then a great wave of peace washed over me. If I missed the exit there is a reason. And there is nothing whatsoever I can do to stop or change whatever will be.

That peaceful feeling did not last long, as it took me an extra 20 minutes (on top of the usual hour) to get to the hospital. Frantically I parked the car. Slammed the door. Bolted up the stairs to the third floor. Passed the nursing station. Hmmm. Nobody there, that must be a good sign. Nobody to waylay me before I enter Hubby's room. Round the corner. Hubby's door is open. Hmmm. Another good sign. If it had been closed....

Tore open the curtain to see David lying in bed, looking a little groggy, but reading the newspaper! I ran over and gave him the biggest, most giganticist hug you can imagine.

He looked at me in surprise. "Am I dreaming? What are you doing here so early?"

Apparently his oxygen mask had fallen off sometime in the early morning hours. I don't know how long he was without oxygen, but when the day nurse came on duty, she saw David in bed, face a grey colour and his mask dangling over the edge of the bed. She put it back on and then got the oxymeter to measure the oxygen saturation in his blood. She told me at first she couldn't get a reading, so called for help. He was still breathing, so after a few minutes the oxygen reading was 50 (normal being from 90-100). The nurse told me it took an hour to get his sats back up to normal. They had to put extra oxygen on to do that.

What a scare for everybody.

His doctor sat on the bed and said "that was a close call, but it wasn't so bad, was it? There was no pain, no shortness of breath."

"But I'm not ready!" came Hubby's sharp retort.

David has had many close calls over the past few years. I sometimes think he is living on borrowed time (as the old saying goes). When I got home that night, I needed to write; as if drawn back into ancient times:



STANDING AT THE BRINK

He is standing at the edge of a Cliff.
Looking down.
Scared. Fearful.
"I do not want to go there."
And he steps back.

"Wife," he says on coming home, "I stood at the Brink today."
"I know," she murmurs, pulling loaves of fresh bread out of the oven.

Time passes.
Another Day.
He finds himself standing at the edge of the very same Cliff.
Looking down, he sees fierce-looking animals.
"No, I'm not going there."

Years before, in a dream he saw himself walking to the end of the Earth.
To the Brink. Where there was nothing but air below.
"I can't go there. I don't have wings to fly."
Just then an angel floated by. His father.
"Not yet," he sang to him, "not yet."

And so he went back home.
"Wife," he says, "I stood at the Brink today. There was nothing below. Just Air."
"I know," she murmurs, ladling out soup for their supper.
Night time. They are sleeping under the Stars.
Wife looks up into the night. And cries softly.
One of those Stars will soon be Husband.
She knows in her heart.
He rarely leaves the House anymore.

Once again He stands at the top of the Cliff. Afraid to look down.
But he knows he must. He's been here before. His body is showing him the way.

Looking down, he sees before him a black pit.
"No, I'm not going there."
And he steps back.
To let somebody else go.
Looking around, he sees many Souls taking the Leap.
Some take the plunge with strength and dignity; others hesitantly with fear.
Nobody returns.

Now there are people with him as he makes his way to the Cliff.
His footsteps grow heavy.
Second Son says "it's just the natural order of things".
"Have a safe passage" whispers a relative.
"We'll make you comfortable when it's time to go," chants the medicine man.
"Are you alright?" concerned friends ask.

"I'm not ready." he tells them all.

And goes home to his wife.
Where he finds her preparing his favourite foods. She knows that one day he will not come home for supper.
But every day she cooks.
Every day she waits for him.
Every day she listens for his footsteps.
Every day they sit down to eat.
"How are you?" she asks.
"I"m tired."
'I love you." her eyes go soft as she looks into his.
"I love you too." his eyes speak from his heart.

She knows his time is near; that one day he will not come home to her.
She knows it will be a time when there is nobody about.
Nobody to watch. No one to interfere.

He will slip away quietly in the early hours.

We look for the silver....

....lining, as the old saying goes. The flowers strewn along our steep and rocky path. The diamonds in the rough.

As you can see, I've taken some time to reacquaint myself with a very good friend of mine - my camera. Out in the healing garden, I absorb the peaceful surroundings and lose myself in capturing a goldfish, a waterfall, spring flowers. How lucky we are to have this hidden paradise, this center of calm, amidst the harsh reality of disease.

David has been out in the healing garden 3 or 4 times since my last post. He tilts his face up to the sun and lets out a sigh of contentment. So relaxing, so nice to enjoy the warmth and healing golden rays. Some days he's too tired. Some days the weather is rainy, but on good days we go out. Just for half an hour more or less, but at least we have this time.

We've also made friends with the volunteers. They are truly incredible people. I did not know just how valuable to the hospital these dedicated souls are. There is one sweet gentleman with white hair who brings my husband his morning coffee and newspaper every day.
Every day.
He never takes a day off. He's always there. You will see him feeding elderly patients, pushing a wheelchair in the garden, accompanying someone to an outside appointment, fetching towels or soap for a bath. He does everything with a smile.

Another one is a wee, tiny little old lady (I'm sure she's 85 or so), who comes around every afternoon with the "snack cart."

"Tea, coffee, cookies, ice cream?"

I sometimes feel like a kid again at somebody's birthday party, being served cookies and ice cream. But she's a dear. And so tiny, she reminds me of a doll with her clear blue eyes and soft white hair.

Oh, and there's Spa Day.

Spa Day happens once a week.

The patient is taken from their bed and put right onto a bath stretcher, covered up with flannel sheets and wheeled down the hall to the Spa Room.

It's dark when you first enter the room.

Ah, but then you see the tiny tea lights glowing softly from the walls and shelves. These are made to look like candles (real candles being forbidden of course) lending a romantic atmosphere.

Champagne cooling in a silver bucket beckons invitingly from a shelf (no it's not real).

Lovely relaxing music plays in the background.

An ocean scene has been painted on the wall to give the illusion of being at the beach.

The bath stretcher is lowered into the tub. The patient doesn't even have to move. They just lie there, secured to the stretcher while fragrant warm water rushes into the tub. Luxuriant bubbles foam up around the person, as much for modesty as for fun, I think.

There is an oxygen outlet on the wall, so hubby can plug in. No worries. The staff are good. I sit nearby and watch. Hubby is fine. He's relaxed and soothed. It's such a treat that the nurses all joke that they need a Spa too!

"No, I'm next!" I joke along with them all.

And we laugh.

It feels good to laugh.

The Healing Garden

I took this pic from Hubby's Room up on the third floor.

The ones below were taken just today, as I walked in the Healing Garden, a beautiful addition to this Hospital. I wish all hospitals had a garden as serene as this one.

It's been over a month since David's admission to Mount Sinai. He still hasn't made it outside yet. We have hopes to bring him out to the garden tomorrow, if all goes well. Just getting him into a wheelchair with 2 portable oxygen tanks is a major undertaking. But we did manage this today - only for 15 minutes in the hallways, but a good start.

I continue to feel like I'm in a twilight zone. David has his ups and downs (he had a major setback a week ago, which I will post about later).

I hate watching him die. I hate that his skin colour is so awful. I hate that he's so frail.

I wrote in a long-ago post "how can his body be deteriorating and yet his spirit shines so brightly through his eyes?" Well, now I know and I hate how the shining light in his eyes is fading.

Life is Strange...

"The lines between us are blurry," says Hubby from his hospital bed.
I know what he means and I find it strange that at the end of his life, we are becoming closer.
How can that be?
There is a part of me that is letting go. I know it is time.
Holding on to someone as tightly as I've been to David cannot last forever.
At some point, there needs to be an uncoupling. A fork in the road. A time when he goes on his way and I, mine.

The letting go process actually started in the fall of 2008. I learned to give up control. Coming home to find the power off and hubby peacefully sleeping while the alarm on his oxygen concentrator screamed unmercifully, was the beginning of this important lesson. Had I been later coming home, Hubby might not be here today. But his journey is not mine to control.

In the spring of 2009, I took a "time out" and went off to Florida for a week. I let go of his care and allowed his son to take over for a while. Full of sand, sea and sun, my energy level was back; my balance restored. Unfortunately, during this short week, Hubby took a step down. Was it because I went away? I don't know. Did I feel guilty? Yes, at first. But then, do I control his illness? I think not.

Now, a year later, we've come to the top of the mountain. We both know this journey is coming to a close. We both know it is time to let go. We are lucky this process is so gradual. Others don't have time; they leave regrets, unfinished business, and final words of love unsaid.

And yet - we both feel this incredible closeness. This blurring of souls.
Maybe this always happens at the end of a life.
Maybe not.
I don't know.

With Hubby, the circumstances are such that right now he is practically helpless, lying in bed, attached to the oxygen hose. He wears a mask making it difficult to talk. So I am the interpreter. Nurses, health care workers, his doctor, even the priest who came to visit, all ask David a question, he mumbles a reply and then they look to me for clarification.
I'm still looking after his basic needs when I'm there, so of course we are close.

But what about me? I anticipate and fill his needs now bringing us this closeness, but what can he do for me?
He gets me to talk about myself. When asked "how was your day?" I usually give a brief account or sweep things under the rug, and then focus on the person asking the question. David has forced me to talk about myself. Essentially, he is living through me. He takes comfort in hearing all about my day with the grandkids, at the hairdresser, the garage, the grocery store, the library. Simple everyday life.
He asks about the progress of my book; encouraging me to continue with the publishing process - not to neglect myself or my work to focus solely on him.

Last week I took a day off to go to the dentist and the hairdresser. These appointments were long overdue. It was time. The weather was strange. Strong winds and rain. We even got hail. Then the sun came out. More rain and wind. More sun. I spent the whole day out, ending up at the garden center. Came home in time to pop a chicken in the oven for dinner - a little later than normal, but with nobody home, it doesn't matter.

I noticed then that clocks were all wrong. In a flash I realized that the power must have been off while I was out. I panicked! My heart flip-flopped in my chest.
Then I relaxed.
David is safe - he's in the hospital. Their generators keep the electricity going.

How strange to think Hubby is safe in palliative care. Palliative care is associated with death, not life.

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".

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!
"ARE YOU TRYING TO KILL HIM!!??"
"M'am, I know COPD. Don't worry."
"LIKE HELL YOU DO!"
"M'am, calm down, this is doctor's orders."
"WHICH DOCTOR?" I knew nobody had given him any such order.
No answer.
"WHICH DOCTOR TOLD YOU TO DO THIS?"
Still no answer.
"CALL RESPIRATORY THERAPY."
"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.

Blogging break

Hubby is going through a rough patch right now, so I won't be posting for a while.

I will still be around to visit. I enjoy reading your blogs as they lift my spirits and your friendship nourishes my soul.

Hope spring is coming in nicely for all of you.