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The Girl with the Daffodil Tattoo

A Welsh girl let loose in a wild world

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palliative

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.

 

 

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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.

Medium TV Programmes: Thursday 13th Novembr 2014

Mum likes to have the TV on while she’s in bed. She’s grown quite fond of the “ghosty programmes”, as she likes to call them, like Most Haunted, and ones where mediums pass over messages to audience members.

This morning there was a medium programme on in the background while I was giving Mum her morning tea. The presenter was talking to two women about their mother, and he said “she says to tell you that she wants to thank you for everything you did for her in those last three weeks”.

>It’s true you know.

>What’s true, Mum?

>Everything you’re doing for me.

I’ve been a bit watery recently, but Mum’s eyes are usually closed so I’d been getting away with letting some tears roll down my face while I was holding Mum’s hand and feeding her ice. She heard my loud breathing/sob and turned her face to me.

>Are you crying?

>Hmm.

I know she doesn’t like to see me cry. She’s only seen me cry twice about her health. Once when I came to visit in May 2014 and she was much thinner; it took me by surprise and I just burst. Another time when I was staying with her in the summer, and she was saying that I could give one of my children her first name as a middle name, a practice that she had always been virulently against before she was sick. When I cried, she would say softly “Noooo, nooo, don’t you cry. It will make me cry, and then if I start to cry, it will all be over”.

>There’s nowhere else I would rather be Mum.

>Thank you.

>I love you.

>I love you too.

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.

A dip in Mum’s health: November 3-7 2014

My sister has been with my mum since after the weekend. She says that Mum is more sick than before, but still could get better. There’s no need to worry yet, and I don’t need to fly out. Not just yet.

I’ve checked the flights for the week as scheduled in my city, to the nearest city where my mum lives. They are not daily, which is something I need to bear in mind, but I suppose we shall just wait and see how she is.

Every day I wake up and think: “Will I need to fly today?”. Then I go swimming to relax my shoulders and neck, and try to go about my day without catastrophising.

Mum’s speech has changed on the phone. She is no longer asking me questions, only answering mine, as if she is very tired, too exhausted to think of what to say without an external prompt.

Mum’s pain gets worse: Saturday November 1 2014

It was my friend’s birthday so we had gone to a rented cottage to celebrate for the weekend. Mum’s pain had been getting steadily worse, but she kept on saying she would “call [the doctor] tomorrow”.

I baked the entire week to take my mind off it. I was a thousand miles away. I tried not to stress. “Worry is a rocking chair that gets you nowhere”, I reminded myself. I swam everyday, trying to release the emotional tension from my shoulders, as with every status change in my mum’s health, the muscles there became tight and painful.

I went away to a cottage with some friends for my housemates birthday. Mum called me on the Saturday night, when we were playing poker. The GP was just arriving. My blood ran cold. A GP visiting my mum at midnight on a Saturday night?

I took a deep breath. There was nothing I could do. My sister was going the next day. Everything would be OK.

Poker finished. People drifted off to bed. I held on to my phone, jumping every time I received a Whatsapp.

Finally I couldn’t take it anymore. I went outside for a “walk”, following the path of a river. I began sobbing uncontrollably, leaning against a fence, staring at the moon all the while. I screamed, and cried. I said “no”. The sobs wracked my body. The moon stayed the same.

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.

Palliative Radiotherapy and Summer Christmas: July 2014

The oncologist has said that Mum’s prognosis is 6 months (to live). One can never be sure; it could be six weeks or six months. My sister (who is a GP) explained to me that people usually plateau, worsen gradually, and also very sudden things can happen.

Mum was scared going for the palliative radiotherapy. They told her that it wasn’t painful, and just like an x-ray. This was only partly true.

The radiotherapy, attacking the cancer in her spine, had caused the tumour to swell, causing agonising nerve pain. From my house in Bilbao, I did the best I could. I called a carer and paid her to be with Mum as an interim, before state care started.

Mum got worse and worse. We thought she was going to die. I was supposed to be working at my friend’s summer camp for the 4 weeks of July, so I told her I could work 2, and then just 1. I really thought that Mum might die.

My sister arrived a few days after me. She told me that I had arrived just in time, and that Mum had been dangerously dehydrated, and her kidneys could have shut down.

I had it in my head that Mum was going to die, so I went a bit mad “doing things”, e.g. keeping busy to not face my feelings. I got the house ready, clearing out the fridge and the cupboards, restocking them with food, trying to get rid of excess stuff (it was hard to get anything in the cupboards as there was so much stuff everywhere).

In a few days, Mum was feeling much better and  able to walk around and eat her child-sized portions again. My sister’s partner came, my partner came, my other sister came. With all of us being together, we joked it was like Christmas. We had a big roast dinner together, and mum seemed very happy, despite her pain from the cancer, and the nausea caused by the morphine.

I didn’t take any photos because Mum always hated photos (for as long as I had known her, anyway) and I didn’t want to see a scared look in her eye as she shied away from the camera.

We all had a wonderful time together, laughing and joking. Mum was smiling from ear to ear, asking her perspective son-in-laws questions and laughing along with the banter.

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