This is a letter I wrote to my, um, what would you call them? Friends? Compatriots? Teachers? Mentors? They taught me so much in my relationship with my Mum and I wanted to tell them the story of her passing, and say thank you.
Dearest Luis and Joanne
I am writing to let you know that Mum passed away on Good Friday. I feel so blessed to have been with her when it happened, whilst out on an excursion for the day.
It has been a blessing. She went into emergency five weeks ago... then ended up in palliative care. She then had her drug regime managed to a point where they thought and she thought she could get home, with care and nursing support, even though she was scared.... and after four days she didn't cope and ended up back in palliative care. By then her spirit was really defeated, and she was resigned to the fact it was time to go. She was very out of it for a lot of the time with all the morphine she was on. Apart from the massive respiratory dysfunction, apparently her cancer was back. She couldn't get it treated even if she wanted to so she never got it fully diagnosed.
It was an amazing journey. She kept saying she wanted to go. I had never seen mum without her will to live, and it was a very challenging time, to be there for her, take care of her physically and emotionally, and give her some moments to enjoy in her last days. Of course during those last days we weren't sure how long it would be... we hoped it would be short, and we had started to think maybe she would just hang in there for another chapter, as she had perked up a bit on Thursday and was talking about nursing home applications.
I took her out in Barney (my car) for a drive on Friday, at around 12.45 we left with 'breakthrough' morphine shots and oxygen tank in toe. We went down to a beautiful colonial place called Salamanca Place in Hobart, to get an ice cream she wanted (i was going to have peppermint tea as I was on day 3 of the lemonade cleanse!). The ice cream place was shut and we ended up having a sleep in the car together for about an hour and a half. Then when we woke up we went on a mission to find her an ice cream. We found one just a few blocks over, on the docks, we parked so she could look out over the boats in the docks, one of her favourite places, and then she ate her rum'n'raisin and butterscotch ice cream! Just after that and a bit of a chat, she decided she needed to pee. By that time it was about 3.45pm, and I thought she might like to go back to the hospital, and she didn't want to. She was pretty clear about that. We were planning to go get a DVD to watch together that night.
Rather than pfaff with the wheelchair and awful public toilets, she opted to go drive and find a nice secluded spot somewhere, and do her usual customary trick of swivelling her feet out of the car and squatting on the edge of the door part and peeing that way! That way she doesn't wear herself out getting on and off chairs etc. We drove up to a lovely big hill overlooking the water with lots of bush called 'Queens Domain'... down a side road. She did her thing, and then wanted to stand up and lean on the bonnet to get her breath. She liked to lean sometimes so she could do that. Then she asked for the wheelchair. It was awkward and she seemed very defiant that she needed it so after some wrestling with it I got it to her. I reversed her back so her oxygen tube wouldn't get stuck in the door, and when I asked her to sit back a bit in the chair, she didn't answer. I went around to look at her face, and she had lost consciousness. I spoke to her assertively to see if she would come around. I didn't look at her eyes, as she had sunglases on and it didn't occur to me. Later when I looked, her eyes were half open and nobody was home. It was very eerie. She was still breathing in her challenged way with the hiss of the oxygen bottle each time. For a moment I had thought she might have just been 'hypo' as she is diabetic now too. I rang the palliative care nurse and she said to get an ambulance. It was around that time I ahd started to realise that 'this was it'. My god! So bizarre to feel that, to be there in the moment, and then to be faced with the opportunity to support her through it.
I had no idea what road I was on!! I rang the ambulance, and had to describe where we were, all the while standing to the side of the chair wiht her cheek on my breast and my hand supporting her other cheek to hold her head up. Before that it occurred ot me she may still be able to hear me so I talked her through it. I told her I loved her. I told her it was her time to go, and to be free. I kissed her on the forehead so many times during that eternity for the ambulance to come. At that stage I had no idea how long she would be like that. There I am standing in the middle of the bush. In the fresh air.... a couple of cars drove by, and they just kept driving, thankfully.
By the time the ambulance came, they thought she may be like that for an hour or two more and asked if I'd rung anyone yet, I'm like, gawd, no!!! Holy cow. It's not 'it'.
Then a few minutes later, she made some funny noises, and she was gone.
Just like that.
About 4.30pm.
It was such a flurry. I didn't even know she had actually gone, the ambo guys were there talking to me, they didn't announce it, and a flurry of activity ensued whilst I got my stuff locked my car and got into the ambulance. By then she really was gone. It was so surreal.
On reflecting now I know when it was. I must have been in shock or something at the time.
Michele, Alanna and Greg, my brother and sisters were all so surprised and also so happy she got to go, finally, and that I was with her and she was out in the fresh air.
I tortured myself for a few nights. I didn't want to be alone, I was scared, and every time I shut my eyes I was haunted by the whole thing. Beating myself up, and hoping wishing it could have been different. Did I say that, did I do this, should I shouldn't I have called the ambulance, did I do it 'right'.... did I do her a disservice. It was such a big responsibility. I was so priveleged that she choose her moment with me. Greg workshopped me through it last night, just prior to tucking me into bed in tears at his house.
I woke up this morning though feeling a lot more resolved. I am typing this on my own from Mum's flat, and intend on going home to my little studio tonight to be on my own... I am sure I will be fine. We will see.
So bizarre to be going through these emotions. It has been a very big few days. We are all so close and we are in full blown funeral preparations. Alanna (sister who did isa), has today prepared the coffin with paint!! We have a blue sky with clouds all over her coffin, and we are all going tomorrow to paint things on it (it was going to be trees and flowers on a grassy base and I think the plan has changed a bit now!!).... we have photo presentations and we are gathering her favourite music. We will possibly also sing with greg on guitar, as when asked what her favourite moments in life were the other day, she said 'jam sessions with the family'.
We will see how it turns out. There are so many people outpouring their emotion and wishes. She touched so many peoples lives and inspired so many. The strength courage and determination she showed with a disease that would have killed most people more than ten to 15 years ago, in the sentiment of doctors who didn't believe her medical history, and to constantly have given all she had to her family and friends. It is a wonderful legacy she leaves for us all and I miss her already.
I hope you don't mind me writing all of this to you. I have been putting off my message to you, and wanted to do it justice. That is the story.
Thank you for your always asking how my Mum is. And reminding me to wonder how was her spirit. That was the thing to always tune in to, her spirit. It was there as such a bright shining light for so long, even when so many people would have been totally depressed.
The lessons around health and taking responsibility and western medicine are plentiful to me.
Mum's lesson to me in a nutshell is 'be healthy and deal with your stuff'.
She also taught me how to have adventures, be passionate, determined, love and be of service.
And so many more things.
She was such a friend to me. We used to spend so much lovley time together just hanging out and doing projects together.
Thank you for listening. Thank you for all that I learned about my parents at isa. Thank you for supporting me to realise how much I love my Mum and my Dad and to tell them. Thank you for the idea to write her a lovely letter thanking her for everything that when she got it she was so happy she cried. Thank you for supporting me to listen and to be there for her. Thank you for teaching me the importance of being complete. Thank you for letting me know that I chose her. Thank you for teaching me to be kind and of service.
I love you
Janine
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