I’m in the same room where my dad died, when he was in the final stages of his life. Except, I’m lying on the bed and my mother, Esther sits opposite me in an armchair. The bed is a hospital bed, provided by the NHS, along with other necessities for someone who is in the final stages of her life. I am here every day, witnessing, helping, caring for my mum along with her full-time carer. And it is hard.
The past three weeks have seen mum in A&E twice. The most dramatic episode that took place the first time was when I told off a man with a bloody nose whose verbal abuse to the staff was shocking. I asked mum if she was angry at my outburst. ‘No,’ she said, ‘I’m proud of you.’
Two weeks later and we were back, this time because mum was having trouble breathing. She was moved from a small room to what I called a family room. The immediate family was there. Me, Stella, my niece and nephews, and for a brief time, my mum’s carer, Merly. Eventually I sent them home, apart from Stella.
We stayed awake through the night. I thought mum was going to die, but she held on, is holding on, despite desperately wanting to go. She’s had enough. Never mind being in the final stages of her life, she’d fed up with politics and politicians and the state of the world. She despairs every time we listen to the news together.
Stella and I managed ten minutes of sleep that night, if that. Stella stretched out on a blanket on the floor, with a puffa coat covering her while I sat in an uncomfortable chair, bouts of taking mum to the loo my only exercise. Conversations with weekend doctors in the dark, asking if I had an LPA (Lasting Power of Attorney) which sent me off into floods of tears. Since waking up on Sat morning and arriving home on Sunday night, Stella and I had been awake for 38 hours. Not since my 40th birthday have we lasted that long on small amounts of food and little water.
A 6.30am, I walked to a local café, the only one open that early. The food was average, but the coffee was hot and proper, and we were grateful for that small gift.
Mum was moved to the adult assessment unit, in a room (not strictly a ward) with three other elderly women. Some went home and new women arrived with wishes and wants of their own. The elderly and sick need to be given autonomy, I am very clear about this, I am with my mum. I was with my dad and sister. They have no control over their bodies so we must offer them choice, ask what they want, and not give them what we think they should have. Dignity, respect, choice. These are vital human rights. Personal cleanliness is also important. Just because they are old and sick doesn’t mean they don’t want to be clean. They do.
I came to know most of the staff, the OTs, the just-qualified nurses, the staff nurses, the drivers and cleaners and tea and coffee and lunch-bringers. The other women provided little jewels during a very bleak time. Witnessing my 91-year-old mother struggle to walk, lose her appetite, tell me several times a day how much she wanted to die, asked us to shoot her or give her a pill, are moments I wouldn’t wish on anyone. Accompanying my mum on her four-day stay were My Mum – called this by her daughter so we never found out her name. Every time Stella and I head ‘my mum,’ our hearts melted. Then Victoria took over when My Mum went home. Bridget took over from Victoria. Bridget with her swollen legs and green cardigan. Adjacent to mum was Mrs Patel. She was amused to find out that mum and I were born in Calcutta – Kolkata now, she said. And then mum and Mrs Patel counted to ten together in Hindi. See, sparkling gems among the unpolished stones. Mrs Patel has no family. She lives alone. Sometimes someone will bring her food, sometimes she manages to clean her home. Mostly she is alone, with little to eat, no one to clean her or her home and I should imagine, she is filled with loneliness. ‘It’s really hard,’ she said.
It is really hard.
Nora Lilian, Lilian to her friends, stayed one night and went home. Her father died at the age of 48 from an asthma attack. She loves Coronation Street and EastEnders. She lives alone. She has no children. Fragile Maud replaced her, crumpled like the NHS sheets she lay in, a tiny figure in her bed. Her head lifted, she mumbled something and turned. And I noticed the bars on her bed had not been raised, so I rushed over to stop her falling out. When Maud left, another woman came, I never knew her name, but she was very chatty. Not as chatty as the woman who took over from Mrs Patel. Kathy was part Romany; she spoke fluent Italian thanks to her ex-husband. She talked and talked, and I thought all these women live alone, they have no one to talk to, so they are talking to me. She told me about leaving her husband in Turin, leaving with her son. She had made provisions, sent a shipment off to the UK without her husband knowing and was at the airport when a woman came up to her, looked at her sad face and said, ‘What is your story, my daughter?’ The woman was Maya Angelou. Kathy knew who she was because she had read all her books. She also met Rod Stewart before he was famous, but that’s another story.
And all the time I am with mum every day from morning to night, crossing London, from south to north as I have been doing for so many years. Christmas light up, passing the skaters and lovers and tourists and shoppers. Passing so many people with their own stories of happiness and despair.
There was the moment when one woman couldn’t find her shoes which meant all the women decided they wanted to find their shoes. Maud lifted her small head, ‘Are my shoes there?’ I walked over. ‘Yes Maud, they are.’ ‘Where are they?’ she said. ‘They’re here, down by your bed.’ She dropped her gaze, smiled. ‘Oh yes,’ and flopped back. Her shoes were there. Beautiful red shoes. Her daughter told me that they are her only remaining pair of shoes and she adores them. (And yes, I am already writing a story about it, so hands off!). After that I had to convince all the women that all their shoes were safe and that they wouldn’t be returning home in red or beige hospital socks or bare feet!
During the past week I’ve learned so much about myself, my strengths and weaknesses, my sharing and teamwork with Stella, asking for help, ensuring Merly has rest too, because she is providing the main care, I’m here to assist. I’ve watched myself do all the things I really didn’t want to do but ended up doing because I had no choice and actually, it’s okay. I learned about the lonely women, the women without children, daughters caring for mothers, the NHS who is pushed to the limit, those who have no voice or no one to voice their concerns, the sad and lonely people, so many so alone, so many hopeless situations with no end in sight. I think about my old age and it terrifies me.
On our way home from hospital late on Thursday night with two other patients in the back of the ambulance, I was given an envelope to give to the driver. He didn’t want it, so I kept it. The sat nav was confusing him and he couldn’t work out how to get the first patient home. My phone and Google maps came to the rescue. Mum asked which street we were on. She said, ‘I lived around the corner when I arrived in London,’ and proceeded to reel off every street name in the vicinity. While she couldn’t see where we were, she had a good idea of how it all looked. Her mind recalled the landscape perfectly. Her memory is all there and I am grateful. Her eyesight has all but gone, she is deaf without her hearing aids, she relies on a walker now and has mastered it so well I call her Lewis Hamilton. At 91 she is still learning. She is adapting to her new normal. Due to small vessel disease in her brain her speech is laboured and makes her sound as if she has had a stroke. She hasn’t. We know because she had a brain scan.
Home again, with mum settled, I remembered the envelope. I opened it. Instructions for the driver. DNR. These are mum’s wishes. She has told me several times. Do not attempt CPR. A few words describing my mum’s condition. And two words crossed out. Stella deciphered them. Cognitive decline. She does not have cognitive decline. Her words are stilted, her senses gone, her mind is as sharp as it has ever been.
Mum has advanced heart failure. A chest infection and fluid on her lungs have been treated. The latter has now almost cleared, but her heart will give out at some time. It’s been a hellish week, with little sleep, me waking at 3am, my mind whirling, wanting to be with mum but also wanting to be at home with my wife, do normal things, like eat dinner and watch TV, run and exercise and see friends. But mum time is precious. I can exercise later, when there is no need for my care or calming words.
Mum is tired, so very tired. She is ready to leave this life for wherever she is going. She has lived a full life. She has travelled all over the world and seen sights I will probably never see. She was in India during partition, she came to post-war London aged 22, leaving behind her old life and made her way on her own. She worked with my dad until their early 80s. She was on the Mall for the Queen’s coronation. She’s seen Margot Fonteyn dance and Liberace play; Danny Kaye and Shirley Bassey and I took her to see Liza Minnelli. I’ll never forget it because mum stood and applauded. She’s ready to go when the time comes. And I’m as ready as I can be. I have cried every day. I have cried in the middle of the night, in hospital, in the shower, with my mum and my nieces and nephews, with mum’s next-door neighbour, in the car, in the kitchen, on the road. I have drained myself of tears but there are always more. It’s been hard, it is hard. Harder in a way than watching my sister die and my father’s horrific pain before he died. Mum could go on for a day or a week or a month. For now, I want to ensure her last days are comfortable with quiet times and meaningful conversations. It’s the best I can offer.