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The Girl with the Daffodil Tattoo

A Welsh girl let loose in a wild world

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syringe driver

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”.

Beep: Monday 10th November 2014

I woke up early, at about 7:30. “Don’t check on Mum” a small voice inside me said. “She might be dead and you don’t want to find her”.

Unfortunately, there was a strange beeping coming from Mum’s room, so I had to go in to make sure she was OK. Her eyes were open, and she said the beeping had been going on for about an hour. It was the syringe driver, that little box with the tube coming out of it that was a shield between Mum and the pain.

I woke my sister up. Not only had she been there for the past week so she was familiar with Mum’s meds, she had just qualified as a doctor so she has generally more of a clue about this stuff than I do. (Prancing about “teaching English” for the past 4 years hasn’t really prepared me that well for my mum becoming a palliative care patient)

Beep. Beep. Beep.

The screen said “occlusion”, which apparently meant that the tube was blocked (by a twist or something) and the morphine and anti-sickness wasn’t being pumped in to Mum’s arm.

>Are you in pain?

>Yes.

My sister gently checked the tube, then pressed “yes” on the box. The beeping stopped.

Now it was time for me to watch my sister call various people, and listen to them all try to pass the buck to someone else. Typically, 8am is when people change shift in the hospitals, so no one wanted to drive out to help us.

>I finish in 20 minutes. Call the GP.

>I am a GP. GPs can only prescribe, they can’t do anything with a syringe driver.

>Do you have the key?

(the box is in a lockable case, to stop people fiddling with the dose. Kind of reminds me of expensive items at the supermarket that are in the anti-theft cases, like Venus razor blades and Jack Daniels)

>No. Do you?

>I don’t know where the house is. Can you come and pick me up?

>…..?!

>Ok. Someone can bring me to you now.

Surreal conversations. In general, the health care professionals have been really good, but it’s quite obvious (to my sister, who has worked in different regions of the UK) that the palliative care resources in our area are stretched thin, hence why getting anyone to do anything is quite difficult, and also why there is no bed free at the hospice for Mum and she is being looked after at home.

It turned out that my sister had done the right thing, but that my mum’s dose needed to be increased. The district nurse came and he made it all happen. He was competent and he was kind.

Mum settled down again and seemed much more comfortable.

Bilbao-Manchester: Sunday November 9th

The flight was at 21:30, so I decided to stay the night with a friend in Manchester and get the train the next day. Just as I had bought my train ticket, my sister whatsapped me.

>Get a taxi from the airport. I’ll pay.

I called her. She told me that they were putting in the syringe driver that evening (which is like a battery powered morphine drip). She had already told me that that was the final stage in a palliative care patient’s life, when someone can’t swallow all their meds anymore and needs them intravenously.

Throughout the whole trip, all I could think was really stupid things, like why the word “funeral” starts with “fun”. I didn’t want to talk to anyone, or make eye contact, or smile.

I hadn’t paid extra to choose a seat, so I was right at the front, which was annoying because it was cold while the airplane door was open, and being an emergency exit meant I would have to put on my coat and put all my bags up. I don’t really like to put my handbag in the overhead lockers, so I took out my passport and put it in my pocket, just in case. I listened to the stewards chatting quietly to one another calmly, gossiping and sharing jokes, as if it were just a normal evening flight.

As we landed, I realised that being right at the front meant that I could get my bag and be off the plane without waiting for everyone else to finish faffing in the aisles. My belt was undone before everyone else’s, and I was off that plane like a rocket. I saw curious glances from my fellow passengers. All I could think about was the taxi waiting for me, and giving my mum a kiss when I got to her house.

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