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The Girl with the Daffodil Tattoo

A Welsh girl let loose in a wild world

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pancreatic

The Day After Mum’s Death: Saturday 22nd November 2014

Mum’s decline over the past few weeks has been rapid. From not being able to get out of bed unaided, to needing two people to move her, to not being able to lift the water bottle with the straw  to her mouth, to taking fluids from a syringe that she operated, to needing someone else to do that for her. When she was awake, I was in her room, and when she wasn’t, I was flitting about, making ice lollies and cleaning and tidying, just to keep busy. “Can I get you anything Mum?” I said. “A new body and a new life” she replied calmly.

I mourned every stage, every deterioration, every ability lost. Sometimes Mum noticed, and said things like: “Why am I so much weaker today than yesterday?” or “I don’t think I’m ever going to get out of this bed”. Eventually she was so morphined up that everything was “lovely”. The last word she said to me was “marvellous”.

In some ways, I wanted her to be released from her pain. I know that it’s better/kinder this way; now she won’t suffer anymore. But then I feel guilty as she never expressed any thoughts in that direction. She savoured her life until the very last breath.

Mum fell asleep on Tuesday, and passed away on Friday (yesterday). After a long few weeks of trying to support her as best I could, I thought her death wouldn’t affect me so much; I thought I would be prepared. But I still feel shocked. I just can’t believe she is no longer here.

Getting Used to it: Sunday 16th November

It’s amazing how you can get used to something.

I arrived 7 days ago, when they had just put in the syringe driver (electronic morphine drip). It was surreal and heart breaking to see Mum truly bedbound, eyes open but unseeing. At first she could hold a bottle of water with a straw in, but now she doesn’t have the energy for that. I put the syringe of water in her hand, guide her hand to her mouth. I’ve cut sponges into mouthfuls so she can have a bit of moisture in her mouth when she doesn’t have the energy to swallow.

When she’s sleeping, I sit at the computer, clean the kitchen, do a jigsaw puzzle. I can’t really concentrate on complicated things, like reading the paper, or doing a crossword. I can’t make it more than a few paragraphs before I think suddenly “I must do that thing for Mum”. I got some graphic novels from the library and am reading them slowly, looking at the pictures. It is so draining sitting by her bed, bringing her ice pops, holding her hand, chatting and keeping my voice bright (or at least even). By 10pm, when the night carer arrives, I am a wreck.

I started editing the blog posts when I arrived 7 days ago. The activity kept me going, and the writing is therapeutic. It’s a way of listening to myself, when what I would really like to do is distract myself from the pain of the situation; burying my head in the pillow, hiding under the covers. But I can’t run anymore. Mum needs me to be strong now.

The kind response from family and friends has been truly amazing. I hope that what I’ve written, so honestly, helps other people in this situation (both present and future). It has helped me in the present.

 

 

Anxiety dissipates, and gratitude: Saturday 15th November

One positive of the situation is that my anxiety levels have reduced dramatically since the syringe driver was installed. I used to feel like a taught string on a bow, vibrating with tension, and sometimes there would be a vice on my chest (when I spoke Spanish with people I didn’t know, or when I was driving). Both were activities in which I had had traumatic experiences and got a little nervous, but that on top of my baseline stress was almost intolerable.

An image would run through my mind, like the other car at the cross roads not stopping at the red light, or someone being really aggressive and rude to me for being foreign (both experiences that were real memories) and then my body would produce adrenalin and I would start to sweat as the vice would close and I would struggle to breathe. It was a waking nightmare.

Now I feel weirdly calm doing those things. It’s almost like some unconscious part of my mind is like: What’s the worst that can happen? Answer: It’s already happened.

Mum dreaded being in bed, asking people for help, strangers doing things for her. Now that she is on so  much morphine, she doesn’t really seem to mind about anything at all. She’s not in pain (which was something I had dreaded) and she lies serenely with her little air bed humming away beneath her. She tells us she feels like a little bird in a nest, and she dutifully opens her mouth for water and juice, saying “That’s lovely that. That’s really nice. I’m so glad you’re here”.

I’m glad that I’m here too. This has been the hardest week of my life, the hardest year. We were lucky that we got to spend time together when Mum was well, and that I can be here now. We are lucky to get to say goodbye.

Sleep Walking: Friday 14th November

The carers come at breakfast, lunch, and dinner, and then the night carer comes 10pm till 7am. They are bright and cheerful, and tell us to freeze diluted pineapple juice for Mum’s dry, sore mouth.

I try to spend an hour “on” and an hour “off”, meaning I spend 1 hour doing things Mum related which varies depending on how conscious she is, or if one of us or a carer is in there with her (Tesco order, making ice pops, tidying Mum’s room, sitting with Mum). By 8pm at night I am exhausted both physically, and emotionally.

It’s harder to be in the room when the carers are there. I feel very conflicted. They are lovely, and kind, but I know in my heart that if Mum were herself (e.g. not on so much morphine) she would hate them calling her by her first name and needing someone to help her do things. She also says things like “Why can’t I…do this. I could… yesterday”. She has no idea that this is the end. She had gotten her affairs in order (there’s a folder full of bits of paper in the kitchen) some months ago, but, paradoxically, she never accepted that she had a terminal illness. Ever. Not even when the cancer came back and the oncologist said “six months”.

I think of her as a sleep walker. It’s easier that way.

I talk to Mum. She’s able to respond to yes and no questions. Sometimes she has enough energy to say words, or short sentences. She mainly says “Thank you” and “I love you too”. When I leave the room, I make sure she has a syringe full of cold ice water in her hand, ready in case she wakes up and feels thirsty while I’m not there. I often pop back in and she has it in her mouth, sipping slowly. I refill it with fresh cold water for her.

“Move the ice water bowl closer, so I can refill it next time” she says. “Ok Mum” I say. She has trouble getting the syringe into her mouth by herself, because of the morphine distorting her depth perception, and she struggles to push down the plunger. (Filling it has taken some practice for me. It requires a steady hand, which I don’t have reliably at the moment.) I move the bowl closer to her anyway.

Sometimes I feel overwhelmed, and I go out for a walk. I go down the country lanes, and I focus on how green the fields are. I wear sunglasses so no one can see my puffy eyes, and the pain trapped in my head.

Other times I sit at the computer, listening to my sisters and brother-in-law chatting and doing crosswords, my ears straining to hear a change in Mum’s breathing. When I hear the change I go into the room, and she says to me “Good morning” and I say “Morning Mum”. She turns her head, ready for a kiss.

“Can I get you anything?” I say and she usually says “Iced water please”. So I empty the liquid from the syringe in her hand (which is at room temperature) and I draw fresh cold water from the bowl of ice by the bed. “Hand” I say, as I place it in her soft thin hand. “Hand to mouth now” as I guide the syringe in her hand to her mouth.

“That’s lovely that” she says. “Is that just water?”

“Yes” I say. “Just iced water. I’m glad I can do something for you”

Sometimes she’s too tired. She says “Iced water”, so I fill the syringe, and I squirt about 3 ml of water in her mouth. She could handle 5ml yesterday, swallowing it slowly, but in one go. That amount makes her cough now because swallowing is becoming more and more difficult.

I say “Ready?” and she opens her mouth. I squirt the 3 ml in, and say “Now close”. Then I say “Now swallow”. I make sure she swallows while I’m there as I don’t want her to cough, splutter, too tired to sit up or turn to tip the water out. I learned today that the medical term for that is “aspirate”.

Arrival: Sunday 9th November 2014

I let myself in with my key, and gave my sister a big hug.

>Thanks for coming.

>Sorry I didn’t come sooner.

>I didn’t realise. I thought she would get better.

>Thank you for everything you’ve done.

I walked in to my mum’s room. I can’t really describe what I found there, mainly because she is one of the proudest, most independent people I know, and she wouldn’t want me telling anyone how she looked or how we helped her to do things. But I can write this blog post because she was always quietly ELATED that I had a blog, and dreamed of me becoming as famous as Terry Wogan. I’m writing it for her in a way, even though she will never read it.

She was calm, and she wasn’t in pain. They had installed the syringe driver a few hours before, which meant that she had a tube coming out of her dressing gown and a box on the bed about the size of four packs of cigarettes.

This was it. This was the moment Mum had been dreading. When she wouldn’t be able to get out of bed, when she would need help doing everyday things. The worst had finally happened.

It was midnight. As I sat on her bed, I had a sudden temptation to laugh, hysterically. Not because it was funny, because it definitely wasn’t, but more in a “FUUUUUUUUUUUUUUUUUUUUUUUUCKING HELL” way.

My sister chattered to me about visits, about what had been happening. She must have been so lonely here  by herself, with only the phone ringing every hour for company. With kindly, but unknown, professional strangers coming in and out, calling on the phone to check up on what was happening, what had already been done, or get directions to our house that no GPS on earth could locate.

It was OK. I was there now.

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