So much for writing every day ..my grandmother and pondering and end of life issues
I actually had the intention to try to write something every day but things have just been so crazily busy that by the time I get home from work, cook, de-compress from the day - it's bed time and then the day starts again. I'm writing today because my grandmother is dying and it's making me have lots of thoughts about life, end of life and death...
Last week, we got a message from my cousin Stephen letting us know that my grandmother had had a fall which led to a haematoma (bleeding on the brain) which is quite serious. The prognosis from the doctors wasn't good. They couldn't operate or do much because of her age (she's 98 in September), and it seemed like the bleeding was continuing. She was paralysed down one side of the body and even if she recovered, was going to have pretty severe brain damage. She was already frail and incapable of looking after herself. Her caregivers are my 65 year old auntie and 73 year old uncle who have been looking after her since at least 1965. In recent years, with her mobility gone, they feed her, carry her up and down the stairs, dress her, bathe her, help her toilet. They can't go on holidays together or even out for a long meal because she can't be left alone and she doesn't like change.
After consultation with the doctors, the family made the decision to get her comfortable but have no other intervention - palliative care. So for the first couple of days, she was just on oxygen and morphine. Then the family in the US (who have never contributed in any way towards my grandmother's care) kind of guilted the family here into asking the doctors to give her saline. That ran the risk of increasing the pressure on the brain and then also made a catheter necessary.
As she could die at any time, we have been taking turns to stay with her at night. There's a fold out 'comfy chair' because we don't want her to die alone. So on my nights, I lie there and just listen to her breathing. Each breath, inhaling and exhaling. For the most part her breathing is regular, but now and then, she stops breathing and I find myself not breathing either, holding my breath as I wait and listen to see if she starts breathing again. Then when her breathing resumes again, I breathe again and then I close my eyes and let myself sleep.
The nurses come in at night to turn her, wash her, change her nappies (diapers) and it's hard not to cry - my grandmother is such a fiercely proud and private person. She'd feel absolutely mortified that strangers, let alone male nurses were washing her, dressing her ... seeing her at her most vulnerable and undignified.
A couple of nights ago, I was lying there in the dark when they stopped the saline and removed the catheter. I said to Dan that I suddenly had a vision of a large, empty house - walking around and slowly turning off all the lights... It felt so ... final and so heart-breaking.
Everyone here is very conflicted and upset about the fact that palliative care means keeping my grandmother 'comfortable' while withholding all fluids and food (intravenous nutrition - she's not conscious so can't actually eat food). I've read the articles on both sides of the fence - those that way that it's the right thing to do, that it's painless and better for you at the end of life to be like that. Then there are the articles (many of them from Catholic groups) who talk about how cruel and painful it is to deny a human being food and water. It's something we are all thinking about - will she die of the haematoma or is she dying because she's dehydrated and starving?
She made her wishes quite clear while she was still lucid. She did not want a protracted death, she wanted to die ... but that doesn't make things any easier. She's had a good life - lived at home till the last, didn't go to a nursing home - is surrounded by so many loving family members ... but that doesn't make things any easier.
I have a good friend who's head of an ICU in Victoria and she wrote: "I feel for you. It is very hard - and circumstances such as this make me question the framework we have around end of life. It was much the same for my dad, he was unconscious but breathing. I was very mindful of only providing comfort and not anything that would prolong his death (eg oxygen). I had to explain this to my family. It is a very tough time, even if you are a bit prepared. And absolutely exhausting."
Another friend whose grandmother died last weekend wrote: "We did the same with my grandma. She was on fluids and pain relief. If she stirred or became restless, my mum told her it was ok and she should rest and sleep, and she calmed down (she only regained semi-consciousness briefly a few times). She passed after 6 days. My thoughts are with you."
I saw my father through his battle with lung cancer and while that was tragic, heart-breaking, sad and exhausting ... his actual death was quick ... a gasp ... his breathing was ragged and then he was gone. There was no withholding of fluids and food ... there was no waiting for his body to shrink and have the spark vanish from within ... It was awful but it was a very different experience. It wasn't as a result of a decision that we had made ... it was nothing that we had done or not done - he was just gone.
I've always loved the song "Dimming of the Day" but it was only this last week that I really thought about the lyrics and what they meant.
This old house is falling down around my ears
I'm drowning in a river of my tears
When all my will is gone you hold me sway
I need you at the dimming of the day
You pull me like the moon pulls on the tide
You know just where I keep my better side
What days have come to keep us far apart
A broken promise or a broken heart
Now all the bonnie birds have wheeled away
I need you at the dimming of the day
Come the night you're only what I want
Come the night you could be my confidant
I see you on the street in company
Why don't you come and ease your mind with me
I'm living for the night we steal away
I need you at the dimming of the day
I need you at the dimming of the day
*
I think about how I'll be at the dimming of the day, when my body, like a broken down, ramshackle house collapsing in on itself ... Will I have the courage and insight to be dignified and gracious? To have a peaceful and quiet death? Or will I be afraid? Relieved?
I also never realised that the beautiful song "Sounds Like Somewhere" by Lily & Madeleine could also be about death...I know it wasn't written that way but the lyrics could be interpreted that way...
Someday, I'll find the right words
I will belong or I will wander
Somewhere, Over the mountain
Under the great sky ill be all right
Someday I'll find the right words
And I'll bloom where I was planted long ago
Until then, I'll be waiting
Hoping, to one day let go
Near the cider mill orchard
I stopped my walking along the path
The foot trails are hard to follow
And feeling hallow, I headed back
Someday I'll find the right words
And I'll bloom where I was planted long ago
Until then, I'll be waiting
Hoping, to one day let go
Someday Ill find the right words
I'll sing a song that sounds like somewhere
*
The lines that resonate the most with me are:
Someday I'll find the right words
And I'll bloom where I was planted long ago
Until then, I'll be waiting
Hoping, to one day let go...
*
Sorry for such a maudlin post ... It's been seven days of sorrowful waiting ...
Last week, we got a message from my cousin Stephen letting us know that my grandmother had had a fall which led to a haematoma (bleeding on the brain) which is quite serious. The prognosis from the doctors wasn't good. They couldn't operate or do much because of her age (she's 98 in September), and it seemed like the bleeding was continuing. She was paralysed down one side of the body and even if she recovered, was going to have pretty severe brain damage. She was already frail and incapable of looking after herself. Her caregivers are my 65 year old auntie and 73 year old uncle who have been looking after her since at least 1965. In recent years, with her mobility gone, they feed her, carry her up and down the stairs, dress her, bathe her, help her toilet. They can't go on holidays together or even out for a long meal because she can't be left alone and she doesn't like change.
After consultation with the doctors, the family made the decision to get her comfortable but have no other intervention - palliative care. So for the first couple of days, she was just on oxygen and morphine. Then the family in the US (who have never contributed in any way towards my grandmother's care) kind of guilted the family here into asking the doctors to give her saline. That ran the risk of increasing the pressure on the brain and then also made a catheter necessary.
As she could die at any time, we have been taking turns to stay with her at night. There's a fold out 'comfy chair' because we don't want her to die alone. So on my nights, I lie there and just listen to her breathing. Each breath, inhaling and exhaling. For the most part her breathing is regular, but now and then, she stops breathing and I find myself not breathing either, holding my breath as I wait and listen to see if she starts breathing again. Then when her breathing resumes again, I breathe again and then I close my eyes and let myself sleep.
The nurses come in at night to turn her, wash her, change her nappies (diapers) and it's hard not to cry - my grandmother is such a fiercely proud and private person. She'd feel absolutely mortified that strangers, let alone male nurses were washing her, dressing her ... seeing her at her most vulnerable and undignified.
A couple of nights ago, I was lying there in the dark when they stopped the saline and removed the catheter. I said to Dan that I suddenly had a vision of a large, empty house - walking around and slowly turning off all the lights... It felt so ... final and so heart-breaking.
Everyone here is very conflicted and upset about the fact that palliative care means keeping my grandmother 'comfortable' while withholding all fluids and food (intravenous nutrition - she's not conscious so can't actually eat food). I've read the articles on both sides of the fence - those that way that it's the right thing to do, that it's painless and better for you at the end of life to be like that. Then there are the articles (many of them from Catholic groups) who talk about how cruel and painful it is to deny a human being food and water. It's something we are all thinking about - will she die of the haematoma or is she dying because she's dehydrated and starving?
She made her wishes quite clear while she was still lucid. She did not want a protracted death, she wanted to die ... but that doesn't make things any easier. She's had a good life - lived at home till the last, didn't go to a nursing home - is surrounded by so many loving family members ... but that doesn't make things any easier.
I have a good friend who's head of an ICU in Victoria and she wrote: "I feel for you. It is very hard - and circumstances such as this make me question the framework we have around end of life. It was much the same for my dad, he was unconscious but breathing. I was very mindful of only providing comfort and not anything that would prolong his death (eg oxygen). I had to explain this to my family. It is a very tough time, even if you are a bit prepared. And absolutely exhausting."
Another friend whose grandmother died last weekend wrote: "We did the same with my grandma. She was on fluids and pain relief. If she stirred or became restless, my mum told her it was ok and she should rest and sleep, and she calmed down (she only regained semi-consciousness briefly a few times). She passed after 6 days. My thoughts are with you."
I saw my father through his battle with lung cancer and while that was tragic, heart-breaking, sad and exhausting ... his actual death was quick ... a gasp ... his breathing was ragged and then he was gone. There was no withholding of fluids and food ... there was no waiting for his body to shrink and have the spark vanish from within ... It was awful but it was a very different experience. It wasn't as a result of a decision that we had made ... it was nothing that we had done or not done - he was just gone.
I've always loved the song "Dimming of the Day" but it was only this last week that I really thought about the lyrics and what they meant.
Click to viewThis old house is falling down around my ears
I'm drowning in a river of my tears
When all my will is gone you hold me sway
I need you at the dimming of the day
You pull me like the moon pulls on the tide
You know just where I keep my better side
What days have come to keep us far apart
A broken promise or a broken heart
Now all the bonnie birds have wheeled away
I need you at the dimming of the day
Come the night you're only what I want
Come the night you could be my confidant
I see you on the street in company
Why don't you come and ease your mind with me
I'm living for the night we steal away
I need you at the dimming of the day
I need you at the dimming of the day
*
I think about how I'll be at the dimming of the day, when my body, like a broken down, ramshackle house collapsing in on itself ... Will I have the courage and insight to be dignified and gracious? To have a peaceful and quiet death? Or will I be afraid? Relieved?
I also never realised that the beautiful song "Sounds Like Somewhere" by Lily & Madeleine could also be about death...I know it wasn't written that way but the lyrics could be interpreted that way...
Someday, I'll find the right words
I will belong or I will wander
Somewhere, Over the mountain
Under the great sky ill be all right
Someday I'll find the right words
And I'll bloom where I was planted long ago
Until then, I'll be waiting
Hoping, to one day let go
Near the cider mill orchard
I stopped my walking along the path
The foot trails are hard to follow
And feeling hallow, I headed back
Someday I'll find the right words
And I'll bloom where I was planted long ago
Until then, I'll be waiting
Hoping, to one day let go
Someday Ill find the right words
I'll sing a song that sounds like somewhere
*
The lines that resonate the most with me are:
Someday I'll find the right words
And I'll bloom where I was planted long ago
Until then, I'll be waiting
Hoping, to one day let go...
*
Sorry for such a maudlin post ... It's been seven days of sorrowful waiting ...