A rose or two

A friend gave me / us a rose for a wedding present. It was ruby red and fragrant, and this year it appeared to have died. But before I threw out the roots to repurpose the pot, new growth sprung up in the weeks before Gerald left.
The new growth still looks healthy. I need to prune away some of the dead wood.

A friend gave me a rose for a bereavement present. It is deep, vibrant yellow and fragrant, and still sitting in its earth and polythene in a likely planting place behind the pool.
I nearly gave it back, because of its name.
"Serendipity" seemed either harsh or overly hopeful in the aftermath of grief and extremity.
I didn't.

I won't.
I'd like to cultivate a natural gift for making pleasant, valuable, or useful discoveries by accident.

Maybe less world-changing than Alexander Fleming's return from a vacation to find penicillin molds had killed bacteria where he had neglected to disinfect.
Lois-changing would be far-reaching and ambitious enough.

Someone who has a habit of finding things by serendipity is a serendipper, while a person who acknowledges, believes, and hopes in serendipity is a serendipitist.
It's true, I read it on the internet :-)

L the S

If you were to write a novel ...

... what would it be about?

The person who asked me this question yesterday had in mind, I think, what country, what setting, context, plot, what would happen in terms of physical sequence of events.

(Though I haven't asked him, so here I am breaking my own rule of never (rarely) assume ... :-))

My mind played about with the idea when half-awake this morning.
I'd write about learning as you go, and courage.
Courage - the power to let go of the familiar.
Courage - the willingness to take up the unfamiliar.

So - half-awake?
Yep. 2 nights sleep in a row.
Now, of course, I'm terrified.
Maybe I'll become a lethargic person who mostly can't be bothered, whose world revolves around as much time as possible in relaxing oblivion.

' suppose that's not so likely.
Scary, though - even such a little change.
I think I secretly prefer being pushed to extremes.

Not so secretly, then.

This blog program is annoying in its lack of emoticons.
I must get better at tone * 100 lines.

L

Do not stand at my grave and cry

"I am the swift uplifting rush of quiet birds in circled flight."

The flocked birds have energy, and, it seems, decisiveness. No hesitancy.

Sleep.
The second night since who knows when, last night.
Good things coming in due season.
The scent on the wind has changed.
Yesterday. Thursday, 18th November, 2010.


L

And we have not

A whole week since the funeral.

The funeral was "good" in all its imperfect joyousness ... a fitting tribute and remembrance to a man who had already left us.

And now the letting go.
And the embracing of new things and people and configurations of life.

None of it feels quite right - why is that?

20 months centred on Gerald.
How do we re-locate a centre - as individuals, as a family?

Where is the comfort for Alex? for Sophie?
I guess we will flail about for a bit.
Are we responsible for the comforters?

Not a whole heap of good ideas; I expect they will come soon.
Do we all need space? And a very few, very forgiving, close friends?

Surely there must be creative leaps through the process?
Less forced march, and more moments where the energy of new creation (fission and fusion) overtakes the loss, are what I had in mind ...

L

Gerald has died

I'm not sure about the menagerie

I haven't tasted either of them.
No thankyou.
Is there a chicken on the table?
Which table?
The dining room table.
A live chicken or a dead chicken?
A live one.
I don't think so.
Let's see how he goes today.
Do you think he'll be OK?
Yeah.
Who is the criminal in Indonesia? You got the email, didn't you?
No, did you get it?
Yeah.
Do you remember when Alexander was born?
Do you remember when Sophie was born?
(thumbs up sign)
Why?
That's odd, for Johnny!
It was less than four hours.
What was less than four hours?
Flying to Tahiti.
Have you been to Tahiti?
Yes (oh, not true!).
That was my question.
Woops! dropped the antenna!

As often, I have managed to cause a little confusion about the confusion :-)
The joyful randomnesses (when they aren't a little frightening for Gerald) started before the increase in morphine, and aren't (just) a result of the medication.
General end-of-life confusion and sometimes agitation, as well as the uraemia accompanying kidney failure are likely causes.

Whatever ... decreasing lucidity has been noticeable in stages since Thursday morning (it's Saturday morning now, for those in upside-down parts of the planet).
Confusion is less interspersed with awareness now.
Situation is: distinct change during the night (just 1 vomiting session) and increasing change this morning.
I sometimes need to explain which is the glass of water and which is the tub for spitting into once the mouth is refreshed.

I never planned these last times. Too much of a remove from the driving, striving life.
And they are fun.
And very intimate.
Gerald and I are laughing together a lot - the eyebrows are the most expressive facial feature by far.
I just said to him, who would have thought you would be so much fun.
He pointed to himself (me, I would).
More laughing. Well, Gerald can't do the laughing, but can still smile sometimes, and there's the eyebrow thing.

What a difference a day makes ... that might just have been the first line of the very first post written when I set this blog up for Gerald, bullied into it by the ever-agressive Marc Fountain.
:-D

L

What is this?

Another day passed.

Tripled morphine in pump, to help with overall comfort and ease agitation.

Bright-eyed this afternoon, reading a magazine (stunning) - is this the fabled last burst of energy?
I think maybe the second to last.

He asked me to stay with him when I settled him for the night last night (it's 1:30 am or so now). So I have.
In Annelies' old chair, done proud, fairly dead but having a great and worthy last innings.

Randomnesses started in earnest this morning (we've had them before, but less consistently).

"It was Right Said Fred."
"I think I got confused."
"Black Box, Mike and Jenny" (this one turned out sensible - Mike and Jenny have our set of Black Books. Do you? It's a worry :-)).
"Do I need help to get up?"
"Barry's just leaving."
"Are they?"
"You said, the bad ones have come out bad?"
"Pointing (at nothing): "Arrows".
"Welcome. You are welcome."
"I left my book somewhere. The extra book."

and, best of all -
"Why did I have to put on a skirt?"

As I said to Richard by email (from memory), it's all so like the kind of wordplay we indulge in anyway - left fielders with hidden connections - that there is nothing frightening or even unfamiliar about it.

Along the same lines as Alex's comment this evening to my musing on how much Sophie did or didn't want me to go shopping with her for Sarah's present (would require a Gerald-sitter for an hour or so): whether she minded one way or the other.
Alex said, "Cloudy".

Get it, then (neither did I, at first)?
With a chance of a martini. Meatballs over-rated.

And another Read-ism (only he can attest that this is not a non-sequitur): Gerald is From a Planet.
At 24 we understood that pseudo-normals such as ourselves were from earth; but Gerald was different - he was From a Planet. Untethered.
Now at 48 this seems a little too prescient.

But that, of course, is the 20-20 of hindsight, always able to see hidden not-really meanings.

One of the middle of (this) night's murmurings to finish us for now:

"7 + 7 + 8 8."
I thought this was a randomness, too - till 20 minutes later it was followed by
"Short rhythm pattern."

It takes putting the two together, and once I had, I checked it out with Gerald -
"Did you mean 7+7+8/8 was the short rhythm pattiern?"
"Yes".

So, in Rob-Boasman-speak (as endorsed by Wikipedia, look it up), this would be
Gi-na-Lo-lo-brig-i-da
Gi-na-Lo-lo-brig-i-da
Gi-na-Lo-lo-brig-i-da's-cool

No real sleep for either of us yet.
What is this?

L

Tireless

The man is tireless.

Only a little news.
Not a good night.
Niggles, wakefulness, dis-ease, tense belly, just usual stuff but more of it again.
And that's just me ...
No, kidding, kind of.

Extra morphine injection today to excellent effect.
More of these as required from now.
We are still on a very low daily dose through the syringe driver.

The troops keep marching.

Need a low key evening, not too sick, no other people, just us 4, plenty of back medecine, a comfort puddle to wallow in for a moment.

Temporary metamorphosis (hippo), then.
Zippo.

I'm getting a funny mixture of jolts of encouragement, way off the board wrong assumptions, and laughs with old friends.

Sounds about right, then.

What's with the thens, then?

L

Sung hero

My mother seems made for times like this.

My mum and I don’t get on. Not really.
I am a puzzle, an enigma, or perhaps plain old confusing
(and not just to my Mum, neither :-)).

[offstage feedback from My Mum:
... this is horrifying, mortifying, awful, and could not be true.

And from me:
... not all will find it so, and this particular truth is important and half won't do.
Relationship perfection is not required for wonder and magic to happen for me because of you.

Now back with the programme ...]

But at the core, I would aspire to the qualities she exhibits during these days.
Unsparing of herself, serious but with lightness, non-intrusive, freely serving with joy.
A little worried, perhaps, but mostly at ease in a role of making the pathway simpler and clearer for others.

Her own (currently in remission) leukemia and the physical limitations of being 71 remain relevant but impose little on her purpose.
Her own widowhood drives her caring to a level beyond.

black / white
weaknesses / strengths
yin / yang
limitations / creative boundaries
fears / catalysts for change
fallow times / invisible and deepest changes

L

Where (to)?

I feel shocked. In a good way.
Stopped, still, reflective, tired, in usual amount of pain, almost static, almost only looking after the emotional needs of the three and physical needs of G.

Gerald looks shinier and happier each day, with no visible deterioration.
Despite no intake of anything but a little flavour from sucking (then spitting out) several tiny cubes of delicious frozen fruit a day.
Less vomiting today. Nice.
Much more interaction with face and eyes than for a long while - especially with the children and me.

VERY HOT TIP: (for those unable to eat / drink)
Cube any kind of fruit you want to try; freeze in 1 layer, and offer as a selection along with tissues and a spit bowl. The momentary burst of flavour will be marvellous.
Successes: banana, strawberries, green seedless grapes, papaya.
Failures: pineapple, kiwifruit (some odd chemical aftertaste in both of those - related to their meat-tenderising properties?)

On and through.
Watch for the corners (they can appear when you least expect them, you can't see round them, and when you get there and make the turn, the surprise is as likely relaxing, encouraging, or exciting, as not).

L

Katchafire. Seriously.

The golden mornings.
The hints of change.
The return of the laughing.

Blackness to replace bleakness.
Black humour seems a little like a tough, impervious, surface - one can throw things at it and have them bounce back at odd, interesting, creative angles.
G&L at their best, really.

Sophie's St Matthew Passion on Thursday night in the town hall (with help from Ray Goodman conducting, the Auckland Philharmonia, the Aukland University Chamber Choir and the Black Watch singers) was very beautiful. If over-romanticised, I was glad that it was. In Sophie's second performance in the town hall with the St Cuths' singers, we couldn't hear her individually (apparently that is a good thing).

Alex has sat 2 more exams - IT theory (happy), and English literature (unhappy). He is very tall, especially when he shuts me in the kitchen cupboard (don't worry).

I woke up this morning with the 3rd serious rewrite of the (very) few words I might say at the funeral in my head. A small, fiery thing of gratitude and energy. If I think I can speak without becoming a fountainous performance I will, otherwise not.

Been getting in touch with people about the funeral. If I should have contacted you and haven't would you? The files in my brain have lost their texture, become see through and without substance, I think temporarily: right brain is still active but left-brained, consecutive, sensible stuff is tricky.

As ever: I MISS MY P.A.! (including the one who laughed at me everytime I attempted to to go out the main doors and had to try a few times because the push-pull choice worked counter-intuitively to my distracted brain).

So, getting off topic.

Please call if you want to visit, 10 minutes, I'm asking people to make a time and keep to it to avoid awkwardness (e.g. family member has arrived and needs time). I hope that's OK with you all. Obviously there are exceptions to this guideline and you know who you are!

It's Saturday, so I have a request for playing with a waterblaster on our driveway (Andrew and Alex, using Tim's toy) which I have allowed due to the useful side effect (a cleaned driveway).

L

Plus ca change, ...

... plus ca meme chose.

Right back to the simple things.

With (apparently) some sixth sense of what would happen, I have been finding myself more focused on sharing Gerald's trip (aren't we all sick of saying journey? - and trip suits the man) the last several days.

To the point where nothing else fits in my head, and higher cognitive functions have - well - gone.
And at the same time, Gerald has been cutting down fluid intake, unable to absorb it, whilst vomiting far more than he takes in.

Intake is now zero, though there are ways of keeping his mouth moist.
Weaker.
Happier, too, it seems.

I won't be going anywhere for the duration (days), I expect.

Alex is still managing with his exams for which he deserves much kudos. Sophie's are coming up. We'll take that as it comes.

And some really nice news (for me) - at family meeting last night both Sophie and Alex affirmed they were happy for Gerald to die at home if symptoms make that possible.
We all smiled and laughed as we talked about Gerald's going, awkward with the oddness of the conversation, but mutually supportive anyhow.
I'm so glad.

L

Only good news

After my first exam tomorrow - for which I have received the instructions as to what to do if my general ceasing of brain function (full force since last Monday) stays the same or worsens in the exam - I want to take over the responsibility and privilege of caring for Gerald.

I'm so glad about that.

With more thanks than I know how to express to Andrew for the last 3 1/2 weeks - even down to filling in himself when no-one was available so that I could carry on cramming in some information. Ever want an important, urgent, short-term job done - Andrew must be a candidate.

And Marlene is coming on Saturday to let me get to the library for one last day -
And Mum is making it all possible by continuing to come in the mornings - quite amazingly tirelessly -
And nevertheless, it is time for it to be mostly us 3 now.

Which doesn't preclude close people from coming to visit a little, when you want or need to,'course.
And I will organise or ask for the extra help I am, I suppose, bound to need.
I still have 2 more exams and an essay, not there yet, but there are other, most important concerns.

The children.
Our family unit.
Myself.

Thanks for your expressions of support, occasionally coming with lightness and lovely timing.

L

Failure

Some are obvious.
Some are hidden.
Some I try to hide.
Failures, that is.

Failures force new direction.
Renewing of resources.
Moments for consideration.
Ideas born of hope or desperation.

Everyone breaks.
Everyone.
Catch at the fracture stage, splint, and rest awhile.
Press on when it's a little safer.

In an emergency, press on anyway.

Gerald carries on fading, but there are more slight smiles now.
Hopes that he may be able to wish me well before he goes ...

It feels good to share his pain.
Physical and mental and emotional and spiritual.
And it can be crushing, though, I think, not beyond repair.

Time. For Everything. Fragility. Of Everyone.

L

Too much love of living?

From too much love of living,
From hope and fear set free,
We thank with brief thanksgiving
Whatever gods may be
That no life lives for ever ;
That dead men rise up never ;
That even the weariest river
Winds somewhere safe to sea.

Then star nor sun shall waken,
Nor any change of light :
Nor sound of waters shaken,
Nor any sound or sight :
Nor wintry leaves nor vernal,
Nor days nor things diurnal ;
Only the sleep eternal
In an eternal night.


(the closing lines of)
The Garden of Proserpine- Algernon Charles Swinburne
Sophie's "most beautiful poem ever written".

Gerald is fine, thin and beautiful.

L

Small Gnus

Apologies to those who have been disappointed not to have more detail on the main event ...

I have not felt too much like posting excruciating detail of slow deterioration.

But to override that:

Gerald is getting thinner.
Much thinner.
His wedding ring dangles.

Excepted for his burdened belly.
Which worries him off and on.
He vomits bile 2 * per day approx.
The syringe driver and subcutaneous topups are working well; oral meds are no longer tolerated.
He is into his 4th week of no eating at all.
He still drinks water.
This feels very deja vu but I'm a little too tired to go and check whether I'm repeating myself here ...
Gerald's days vary between alert days where he speaks with us, and other days when he is not very able.

The hospice nurse comes daily during the week.
Our family Dr weekly.
Vivek the shower man 3 times a week.

Estimates vary. The "days to weeks" continues due to youth and previous good health.

Feel free to ask for what I've unintentionally omitted, as you do :-) - I'm glad it matters.

Netta brought beatiful orange, red and green flowers tonight for Gerald to see when he wakes in the morning.

Kerry has talked soccer and drama and music (Liverpool's star will rise again) 2 afternoons in a row.
Alex got to play squash and have a driving lesson.
Sophie is reserve in her school speech finals. Topic: An Interesting Person.
Also Sophie is singing with her school chorale in St Matthew's Passion next Thursday night in the Town Hall.
Alex is in full flow exam mode. With a re-negotiated out-of-bed time.
Getting a bit random here.
Good night.

L

No Gnus

The horizon is clear.
We're safe.

From what?

How come I've become a general manager in my own home?
Needs must.

What if ... people stopped helping?
... Gerald hadn't gotten sick with an "incurable" cancer?
... I hadn't been able to have any children?
... I couldn't cook?
... The sun went dark and cold?
... I hadn't been made redundant three times?
... My back never improves?
... There is a world shortage of Blue Sapphire?
... I had had a chance to experience in actuality rather than only by temperament and style, the loneliness of the long-distance runner?

Since I last wrote, Gerald has got thinner and tireder and weaker, with little other discernable change.
He is now a lovely shadow of a lovely man.

Over to Kingsley A, for a comment on the necessity of having a refrigerator to oneself:
"Wives and such are constantly filling up any refrigerator they have a claim on, even its ice compartment, with irrelevant rubbish like food."

(Just shows his limited experience.)

L

Bin good

Bin laden with good things.

Good to have Gerald at home.
Good to find Alex and Sophie getting comfortable with this.
Good to have Gerald smiling again (at moments).
Good to have an all-dancing hospital bed, more comfy and handy for both Gerald and nurses.

Less good -
- barely being able to manage being away from the house - but this feeling is dissipating.
- having home become a hospital - nurses galore, visitors and all.

The roster is looking good for this week, with a few extra offers as fallback.
It's humbling, yet again, to accept help.

I'm still heading towards my remaining 3 exams ponderously, with little dexterity of mind, and halting, fleeing moments of incisive thought. Pulling things together is kind of beyond me. So I take comfort in the fact that I'm learning the concepts, at least - this year's exams will not define me.

Wondering how Alex and Sophie are going to managing in their exams?
And whether Andy and Mum, bearing the brunt of the caring, will burnt out before the sun goes down?

Gerald is shrinking, going through a process, sad, resigned, sometimes vomiting (which he hates), peaceful, quiet, sleeping a great deal, on his third week of not eating (occasional tsp of apple sauce, perhaps, aside). He has a subcutaneous feed for extra meds, a syringe driver, and the alternatives of pills, liquids, and subcut top-up meds. All working so far.

It is good we are all sharing my husband's, my children's father's, Gerald's sisters' brother's decline, not missing much.

Each day. Seems to count.

L

Migrating birds ,,,

... silhouetted against the sky in the fading evening light.

One of my favourite times of day, always beautiful, and somehow hopeful despite being an ending.
Unless it's cloudy.

Gerald has been home since Monday.
It's hard to leave the house now.
I guess I'll get over that.

If you want a last visit, those who have stayed close, these are your days and weeks.

We have a roster for caring; the 12-4 slot is one to volunteer for if in addition you would like to help and are confident with medication and emergencies should they occur.
lvw@ihug.co.nz quick email or 021 606 115.

Thankyou my children / young adults.
Travel well.

L

I will think of you

I thought of you and how you love this beauty,
And walking up the long beach all alone
I heard the waves breaking in measured thunder
As you and I once heard their monotone.

Around me were the echoing dunes, beyond me
The cold and sparkling silver of the sea --
We two will pass through death and ages lengthen
Before you hear that sound again with me.

Sarah Teasdale

L