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The Girl with the Daffodil Tattoo

A Welsh girl let loose in a wild world

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mum

Photos: December 3rd 2014

At the funeral, we had a handful of photos from Mum’s childhood in Northern Ireland, one or two from her time as a police officer in Hong Kong, and one of the four of us, when we (her daughters) were all in primary school. The day after the funeral, we found the mother load.

Hundreds of photos. So many photos we never knew existed.

Mum smiling with her brothers and her sister in Northern Ireland.

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Mum working as a police officer in Hong Kong.

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Mum on her wedding day.

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Mum on her honeymoon.

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Mum as the mother of young children.

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Then something happens. My mother didn’t want to be in any photos anymore. Her marriage broke down. She had to sell the house. We were all very unhappy. It was a very dark time.

I thought that when Mum died, we would find an explanation. Someone would tell us something at the funeral, or we would find a photo that told us why Mum became so isolated, so ill. I would have The Answer, and be able to avoid becoming unhappy like her, imprisoned in my own head, and completely unable to accept help, or ask for it.

I’m overwhelmed with a feeling of wanting to know about the photos; the events, the parties, the people standing with Mum. I want to ask her all about them. But I know that she wouldn’t have been able to show us her photos and tell us about who was there with her. She was closest to us, her daughters, but she was so, so, private She was a mystery wrapped in an enigma tied up with a riddle.

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The Funeral: Monday 1st December 2014

Shock: a blanket that protects you from what’s right in front of you that you can’t face.

I woke up early, at 8.am I made a pot of tea, then I put on the bacon. I toasted the bread. 5 people, 10 slices of bread, 1 whole pack of bacon, defrost the other in the microwave. Cook the whole thing; might as well. In for a penny, in for a pound.

We waited for the “limo”, which is what they call the hearse for the living that follows the dead. We got in, shrouded in a nightmare. I said “I wish I’d bought my sick bag”. My sister suggested I change seat. I said “It’s not from the motion”.

The hearse was supposed to stop at a local pub, where the other cars would join the convoy. Why is it going past? Hey, stop! The others need to join.

We drove in semi silence, crying intermittently.

We arrived. The funeral director advised us to stay in the car, as it would be easier to go straight from the car to follow the coffin. I saw my friends hanging around the car park. My uncle commented on my male friend’s luscious locks. My dad offered to carry Mum’s coffin. She was the most independent person I had ever known.

We got out. I avoided eye contact with my friends. We fell in line with the coffin. As we entered the crem, I felt like when you are on a roller coaster, at the zenith, looking down. A great big “Fuck!” escaped from my mouth, blasphemy trying to kill my pain.

Standing at the front, I was rocked in wave after wave of pain. There was my mum, in that wooden box. The vicar spoke beautifully, something about believers getting to live forever. Mum wasn’t big on Christianity but she would have been happy with something so formal. I wished I was religious so that I could believe in paradise and seeing her again.

We stood. People sang. We sat. He spoke. We stood. People sang. We sat. I couldn’t sing because it was taking all my energy to stand at the appropriate times. I followed the words in the order of service instead. I hummed a bit. They said the Lord’s prayer. I looked outside, at the trees, because for me God is in nature. Amen.

The service, beautiful, formal, without a hitch, every second a living torture, ended. We went to the front. I kissed my hand, and touched the side of the coffin. “Goodbye Mum”. It was too much, I left first.

All in a line, thanking the people for coming. Familiar faces, less familiar faces. My friends were at the end. “How are you?” they said. I just cried.

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”.

Hideous Normality: Tuesday 11th November

Some nurses came to transfer Mum to a hospital bed. It’s inflatable with a control to alter head and leg incline. Apparently it’s much more comfortable.

The nurses were chatting to each other, and to Mum, as if this were a normal day and a normal situation. One commented how she hadn’t seen Mum in about 2 years. Mum confirmed it. “Yes, when all this started” she said. The other started chatting to me, asking me questions to see if we had met. Her face seemed so familiar. She asked me if I was the daughter who lived in Spain. I struggled to form a coherent sentence.

Sheets for the new bed? I’ll get them. These lilac ones are nice… Ah, but they’re worn and bobbly. Which one’s are the best? Which ones would Mum like to die on?

Have to get out. Have to get out. Shoes, shoes. Where are my shoes? Avoid everyone else. Don’t let them see you’re upset. Don’t be weak. Everyone feels sad but no one else is crying. Don’t be a burden on them. Phone, phone, where’s my phone. Got to get out of this place. Can’t breathe.

I left the house without my phone. The pressure in my chest was too great. I walked for about 10 minutes, to a gate in a hedge. I’d often stopped there on my walks, admiring the view of the Cheshire plains.

I leant on the gate and let go, letting the tears run down my face, leaning in to the sobs . Trying to keep it in is like trying to stop a tsunami sometimes. I’ve found that letting it out, getting it over and done with in controlled bursts, makes carrying on doing daily tasks easier.

I came back to the house, feeling tired but refreshed. It turned out that one of the nurses used to go to Guides, that’s why I recognised her. I must have seen her when I was small, watching my sisters with the older girls. And now, 20 years later, she’s helping my mum into her last bed.

Mum looked a lot more comfortable in the hospital bed. She slept peacefully until the next carer came.

DNR form: Tuesday 11th November

The overnight Marie Curie nurse came for the first time last night. She spent a long time going through Mum’s paperwork, asking me about what had happened over the past week.

>Did your sisters resuscitate your mum 3 times last week?

>Yes. She was managing her own meds at that point, and took a double dose by accident. She kept on nodding off and stopping breathing so my sisters had to wake her up.

Then she asked me about the blank “Do Not Resuscitate” form. “The district nurse must fill this in”, she said. I wholeheartedly agreed; Mum is in a lot of pain, and prolonging her suffering doesn’t seem right.

Euthanasia is something I am generally for. Allowing people to die with dignity (if that is what they have chosen) seems like the kindest thing, and I like to think that if I had a terminal illness, I would be brave enough to take that as an option. But then, maybe if I was in that situation, I would just want one more week, then one more hour, then one more minute. It must be incredibly hard for people to decide the “when”; I have no idea how people choose when to go.

I asked my sister in the morning about the DNR form. She said that Mum had been asked about it, and said that she “didn’t want to make that decision”.

All through this process, Mum’s denial of the situation has been iron strong. For the past few months, she has swung from saying things like “You see this bowl? I want the neighbour to have this bowl”, to being afraid of running out of money within two years and planning on moving house to free up some cash, all within the same breath. She even renewed her yearly phone contract a few months ago. Maybe that was her way of keeping herself going.

I can’t bear the thought of Mum stopping breathing and then some paramedic jumping up and down on her chest just because of a stupid piece of paper. She’s so, so unwell. I don’t want her life to end, but watching her confused and in pain is pushing me to my limit. I’m lucky my sisters are here, as they are both doctors; they know all the terminology, they can speak this medical language. I feel like I’ve been run over by a steam roller.

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.

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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