Roobeedoo

August 2010

Last night when I got home, Hero was looking worried.  I assumed that he had disgraced himself and checked in the… ahem… naughty corner.  Nothing.  I checked the bins – no evidence of a raid. Strange.
It was only when I took him out for his walk that he showed me the source of his anxiety:  our log store had been blown into a tree and is stuck in the branches.  It usually sits just through the window from the dog basket, so I can only imagine what Toto, sorry Hero, must have thought when it whirled through the air at the edge of his vision.  It probably made quite a racket too, as the ground was strewn with the wood that had been inside.  Oh my!

Today FL had a few moments of communication.  He opened his eyes a few times and was definitely “present” as he did so.
His golfing pal paid a short visit and rang one of FL’s oldest friends on his mobile phone, holding it to FL’s good ear so he could hear what was said.  I was holding FL’s hand at the time and he squeezed my fingers, I assume to thank us for making that possible.  His old pal was delighted and heartbroken at the same time.  He had hoped to say goodbye in person, but is not well enough to travel.

Later in the morning, FL was clearly in some pain, so I asked the nurses to give him some top-up pain relief.  He was soon comfortable again, sleeping peacefully.

He has not taken in any fluids for 3 days now and his hands and forehead are very cool to the touch. The skin around his eyes is taking on a purple hue.
His mouth is open most of the time and sometimes his jaw moves, as if he was chewing.
I understand that these are signs of “active dying”.

I sat beside him for a little longer than usual.
It feels like the end is getting closer and I am reluctant to leave.
But at the same time, he needs to know that he is free to go.
Every night I say my goodbyes, aware that it may be for the last time.
I tell him to look after himself and I tell him that I love him.
There is nothing more I can do now.

Every morning before I set off for the hospice, I take the dog across the fields for a blast of fresh air.
Today we set out on the cusp of an incoming storm.  As I left the house the sun was shining brightly, but by the time we reached the public road, ominous clouds were gathering and the wind was getting up.
As a severe weather warning was in place for the area, I did a quick turnaround and persuaded the dog that it was time to head home, however delicious the haybales were smelling.
We had just reached the garage at the back of the house when the rain hit.
Hero decided to take cover behind FL’s parked car, wrapping his lead around the wheel arch in the process.  I was forced to turn back to free him… and as I straightened up saw the most amazing rainbow across the valley.
Thank you, Hero – I would have missed it if you had not become tangled!

I sat with FL from 10am to 4pm, as usual.
He opened his eyes more often than yesterday.
It would have been easy to believe he was getting better.
I am sure he enjoyed my weather report.
Every so often, he stretched an arm over his head, as if he was about to yawn and then leap out of bed to cook himself an enormous breakfast.
But that is not going to happen.

The nurses asked me to come to the quiet room with them, so they could explain the arrangements for when the end comes.
It is my role to make the call to the University to carry out his bequest to the Anatomy Department. It is something he feels very strongly about, so I must make sure it all goes smoothly.
A teacher by profession, he is determined to serve an educational purpose to the end… and indeed beyond.

Thank you for continuing to share this time with us.  It helps a lot to feel we are not alone in this.

I have written before that FL was “mostly sleeping”.
But this is a different sort of sleep.
This is a drifting in and out of consciousness.
He breathes more slowly.  Sometimes he does not breathe at all for a few moments,before resuming where he left off.  It is not a struggle for breath, it is a peaceful slowing down.
His head is thrown back into the pillows, his mouth wide.  It was frightening at first, when I saw him this morning, but I soon got used to it.
He is no longer drinking.
The nurses moisten his lips with a swab when they change his position in bed.  It is for simple comfort, like everything now.
Sometimes he grasps my hand.
His fingers occasionally explore his woolen blanket as he sleeps.
He woke up properly just once today, as the nurses were moving him, and he saw me standing at his bedside with my knitting.  His eyes focused briefly and I saw a smile flicker across his face. Then he was asleep again.
It won’t be long now.

I understand now why so many hospices are run by religious organisations.
It makes sense that people dedicated to their faith would have a vocation to care for complete strangers at the lowest point in their lives, with unconditional devotion.
FL’s hospice is secular and he would not have it any other way.
But as the final family dramas play themselves out, I almost wish a last-minute religious conversion for him, so that he might receive the comfort of absolution.
He would be utterly horrified by the idea!
But today I took on the role of… what?
A ministering angel?  I am not that conceited!
A social worker?  That’s probably nearer the truth.
There he lies, unable to speak, struggling to swallow a tiny sip of water, too weak to change his own position in bed.  Utterly defenceless.  And people choose this time to deliberately inflict pain by digging up the past.
Now?  You wait until now? Unbelievable.

Yesterday he was in such a state of upset that he refused his medication, shut down communication even with me and tried very hard to wish himself dead.  But it is not that easy, and I told him so.

This morning I swept into his room on a mission.
First of all, I read him an email from his nephew: full of reminiscences of fun times, thanking him for being a “top notch Uncle”.
He raised an eyebrow and smiled.
Then I showed him an old photograph (from 1981) and told him what I saw:  a happy family, joking together and enjoying each other’s company.  And I reminded him that this was how it was, for so much of the time.  That, OK, it was not perfect and that yes, he had made some mistakes along the way, but that anyone who knew them then would have agreed those children had a fantastic childhood and that he was at the centre of that.  That he was a good father.
I had planned to say so much more, but by that point I was in tears.
He took my hand and kissed it.

When the doctor came to seek permission to administer his pain relief through the syringe driver he agreed.
Hallelujah!

Today I knitted another Vivid blanket square.

In the hospice conservatory there is a white board where staff, patients and visitors keep track of the wildlife that frequent the garden: 25 January –  2 squirrels, 1 goldfinch…
There is also a white board above FL’s head.
Today it said:  “Bed Bound, Poor Swallow” and I immediately thought of him as an injured bird, grounded by a broken wing.

FL was miserable today.  When I arrived, the doctor was keen to engage me at his bedside, trying to get to the bottom of his refusal to take any drugs last night and again this morning.
“Are you in pain?  Would it help if we gave you your medicines by syringe, rather than you having to swallow them?”
The doctor tried.  I tried.  He did not respond, other than the faintest shake of his head.
The doctor looked at me, but spoke as if she was speaking to him: just press the buzzer if you want pain relief.

I attempted to talk to him, just to say good morning really, but he hardly opened his eyes.  He indicated that he wanted some water, had a sip, then fell asleep.
And so the hours wore on in silence.
Every so often he would signal for water and then subside again.
In the late morning he spoke for the first time:  “I wet the bed”. So I buzzed for the nurses and escaped for a coffee in the conservatory.

There, the resident writer introduced me to the resident artist:  “No obligation!  But I saw you were knitting and thought you might be a creative type!”  So we talked about spinning and his family’s weaving heritage on the Isle of Lewis, until I was called back to the bedside.

And the day crept on.

It came to be time for me to leave, so I packed up my knitting and my book, and put on my coat.  I offered him some water.  He began to make frantic signals which I did not understand until I realised he was about to be sick.
Fortunately a nurse was just passing the door and we got him into a sitting position before he choked.
She offered him an anti-sickness drug.  He has had it before, when the same thing happened in the night.
He shook his head.
I decided enough was enough.
I told him that he needed to take his medicine, that not taking it would not make it all be over any sooner, it would just make it more unpleasant:  You do not need to be in pain!  You do not need to be sick!

The nurse left us alone for a minute.

I explained to him that if he was not able to make the decision for himself, I would do it for him, that all anyone wants is for him to be comfortable.
At last he spoke:  “But they don’t know anything!  They can’t do anything to help!”
I replied that they know an awful lot about how to reduce physical pain and that if he accepts their help, he could be made comfortable. But that if he doesn’t take his pain relief he will be in distress and there is no need for it!  Physical pain can be treated!

Ha! We both know that his greatest pain right now is emotional.
He is hurting deep inside.
I cannot make it better, however hard I try.

When the nurse returned, he did not agree or disagree with the proposal that he have an anti-sickness injection.  She took the opportunity to install a syringe driver, so that he can receive pain relief in the same way.  She said she would be back in 20 minutes to change his position in bed.
And so I took my leave.
I did a silly dance to the door.
Night night!  No nonsenses!  See you in the morning!
Exactly what I used to say the kids when they were small.

Today I knitted a Vivid Square and began reading a beautifully-written book:  The Fish Ladder by Katharine Norbury.

Today I did a full day’s work from the bedside.
FL was in a slump when I arrived and had been left to sleep.  However, the nurses were determined to straighten him up a bit – literally and metaphorically, with clean sheets and a wash.  They asked me to leave while he protested.
Although I am willing to be his advocate in many matters, I judged that being made comfortable was worth the disturbance. I escaped to the coffee area with my laptop and carried on working.
Later on, I let him know that I had been in touch with his family to let them know his situation.
I offered to act as his scribe if there was anything he wanted to say to them.
After a long long pause for thought, he asked me to “Take a letter” which made me laugh.  Such a wonderful old-fashioned phrase!
He managed a sentence before falling asleep.
And when he woke he had reconsidered his words.
I explained that he was under no obligation to contact anyone, that I would help if he wanted to take the opportunity to say something to someone… but that it is his choice.
He nodded.
I said that I wanted him to understand that he is loved.
That I love him.
He squeezed my hand.
As I was leaving, he asked me to give him his mobile phone.
I am not sure he has the coordination to use it anymore, but I left it within reach.
In case he needs to say goodbye.

FL is convinced that he drank poison in the night, because he awoke with a terrible taste in his mouth.
The only way he can rationalise it is to believe that he drank from his urine collection bag… um… I do hope not!
Doctor Google says this is a normal issue at this stage in proceedings.
I am not sure I like “normal” any more.
So when I arrived, FL was chain-drinking iced water and spitting into tissues.
He was quite “needy” today, with lots of requests for water or a change of position in bed.

Unfortunately for FL (and with no criticism intended of any of the frankly amazing staff in the hospice) there were others in greater need of the nurses’ attention.
It was a busy day in the hospice, after three new admissions yesterday.
In the afternoon, an unfamiliar alarm went off and I could hear running feet and slamming doors. Things do not usually happen at a rapid pace in the hospice, because the worst thing that could possibly happen is the thing that everyone is expecting to happen.  People are calmly and quietly brought in… and taken out.
I don’t know what happened.

Back at the farm, I have started to make the house into my home.
Instead of tidying round the edges of chaos, I have been reclaiming the space, both mentally and physically.
This morning I set up the kitchen table as my crafting space.
It felt good.