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
Sunday, October 31, 2010
Saturday, October 30, 2010
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
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
Friday, October 29, 2010
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
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
Wednesday, October 27, 2010
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
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
Tuesday, October 26, 2010
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
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
Thursday, October 21, 2010
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
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
Wednesday, October 20, 2010
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
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
Friday, October 15, 2010
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
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
Sunday, October 10, 2010
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
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
Wednesday, October 6, 2010
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
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
Sunday, October 3, 2010
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
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
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