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The Girl with the Daffodil Tattoo

A Welsh girl let loose in a wild world

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palliative care

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.

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.

Useless, depressed, and I don’t even have cancer: August 2014

First my partner left, then my sister left, then my other sister and her boyfriend left. Now I’m alone with Mum and it is killing me. I cook for her twice a day. She’s not able to eat much and she’s convinced that certain foods are causing her to feel sick. Vegetables with the skin off. Lacto-free milk and cheese. Diabetic icecream. Nothing works and Mum continues to be in pain. I feel useless, unable to do anything to alleviate her symptoms.

I feel grateful that we are getting this time together, and that time has been running out for us to get to know each other before she passes. We’ve had some good chats, as adults. I’ve listened a lot, which is new… I liked to talk before, but now I’m more interested in what she has to say.

She likes to tell me how, although she loves us, she wouldn’t have children, if she could live her life again. Or if she did, she would only have two. Although I’m her third daughter, I don’t take offence to this. I find it funny as I have no plans on having children, although that may change. (Who knows, with all the medical advances, maybe my partner can carry our child and give birth to it, seahorse style. On second thoughts, Junior was a terrible film, so best just steer clear.) “You can be happily married without children” my mum says, sagely.

She’s refusing to start care on every possible grounds she can think of. She says she doesn’t have the money (even though it’s quite cheap in our area), then she says she would rather give me the money, which makes no financial sense as it would barely cover my rent on my flat, in Spain.

I’ve felt like I haven’t been able to take a long term job as I want to keep the freedom to come and spend time with Mum, but I definitely did not want to be left to cope with Mum alone, and to gradually start doing everything for her. She normally has prescriptions delivered, but when there has been a problem, I have gone to get them. Pharmacy, GP, pharmacy, home, don’t cry don’t cry don’t cry don’t cry. The doctor’s surgery Mum is registered at is a big, semi-impersonal practice, with a dickie fax and a problem with misplacing prescriptions. The thought of Mum being left without morphine makes muscles in my stomach contract as if a phantom has kicked me in the gut.

I decided to leave. I realised that my taking care of Mum had become enabling. I was only helping her to deny reality by not starting/accepting care, and as much as I had tried, I felt lonely, I felt depressed, and I missed home. I hadn’t lived in my home town for 8 years, and I didn’t want to start now, when I was feeling psychologically vulnerable.

I told Mum I had a job interview and was heading home to the Basque Country for a few weeks. Mum and I had a blazing row. I said some things that were true but unkind. She was very very angry. I think she was most angry that, for the first time in her life, she needed someone else; she is such a proud and independent person.

“I don’t want a carer. I don’t need one.” she said. “I don’t want them touching me and talking down to me. They speak to me as if I had lost it. I don’t want them touching me ever. I couldn’t bear it”.

I lay on the sofa, unable to get up, unable to watch TV. I was depressed and unable to stand or contemplate doing simple things like making food or even checking my phone.

Finally the day came to leave and I dragged myself out of my pit. Mum’s wrath had been appeased by Deborah’s arrival from London later in the day, so I kissed her goodbye, hoping it wouldn’t be for the last time.

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