Naive as it may sound, more than anything in the world, I wanted her pain to vanish.
During the day, Mum would be sitting on the sofa watching television. On occasions, I would be laying on top of her bed in the sitting room, with my headphones on. I had given her all my love but sadly, love was not enough to save her from the pain. She didn’t know it but I was actually praying for her. Prayer was now all I had left. So I prayed that I had enough strength for both of us. I prayed that God spared her the pain of the cancer and gave it to me instead.
Our lives were now in limbo. We both knew her health would decline. But what we didn’t know was when and how the decline will happen. Simply waiting for her to deteriorate was heart-breaking. Every morning, I looked at my charter. I repeated to myself, take one day at a time.
As Mum’s grimacing became more and more acute, it was time to increase the pain relief medication. So to ease her suffering, Mum was now on what is commonly called in the medical profession opioid analgesics. In short, strong painkilling drugs.
At first, the Macmillan nurse recommended BuTrans patches. These patches contained the ingredient buprenorphine. This drug is related to morphine.
As I didn’t know where to place the patch, I asked the Macmillan nurse to place the patch on Mum for me. He refused as it wasn’t his job. I subsequently rang for a District Nurse to show me. Because they were short of staff, they were reluctant to visit Mum. But after I complained, they agreed to visit.
That afternoon, I received a ring at the door. It was a District Nurse. As it so happened, she arrived at the door at the very same time Mum began to violently vomit.
I rushed to the door and let her in the house. I then immediately ran back into the living room to comfort Mum. The District Nurse walked in the living room and sat down on a chair.
“Well, where is the patch?” she quipped in an annoying tone of voice.
She could see Mum was vomiting and in distress.
“Hold on, surely you can see Mum is being sick,” I replied.
The District Nurse remained silent. I could see she was annoyed visiting Mum. She did not have one ounce of empathy. Thankfully, Mum was oblivious to her attitude.
After I managed to get Mum settled, the District Nurse showed me how to place the patch on Mum. Then the District Nurse immediately left.
Mum’s doctor prescribed further controlled drugs that I needed to administer. I was extremely apprehensive, as any overdose could have been lethal. I recorded Mum’s medication every day.
She had eight paracetamols spread throughout the day, OxyNorm (which I injected into her mouth) morning and at night, and Levorphanol, which I gave her twice a day.
These drugs would ensure Mum was not in any pain, but at the same time, were destroying her quality of life. Mum was sedated and completely unconscious for most of the day. As I watched her sleep, I was once again rendered helpless. I would pray to the heavens to look over her. To protect her. To be her blanket as she softly slept. She would wake up in small bursts. It was heartrending to watch her in this state.
The choice that faced me as a carer and as Mum’s son was twofold. Do I stop administering these controlled drugs to Mum, and as a consequence she would spend the whole day in pain? Or alternatively, do I administer her the drugs to ease her pain, but as a result, she would be heavily sedated throughout the day?
I literally had Mum’s quality of life in my hands each day.
Watching her like this, I was convinced she urgently needed 24-hour medical care, which I was unable to provide at home.
10
Mum’s final days
Turning point of mum’s illness
I will never forget Saturday, 19 April 2015. It marked a pivotal point in Mum’s illness.
That morning, as usual, Mum woke up and made her bed. But on this occasion, she seemed very different.
“I simply can’t do it,” she commented exhaustively.
“That’s fine,” I replied, trying to comfort her.
“I feel so unwell,” she kept repeating. I could see her grimacing throughout the morning.
She refused to see the doctor. Then, at 10:30 am, she started vomiting. As the day progressed, she vomited about six times. She still, however, refused to see the doctor. Around 7 pm that night, I tucked her into bed. About an hour later, I heard a loud bump. I immediately rushed down the stairs. I saw Mum there, sitting on the floor, vomiting uncontrollably in the bucket, with diarrhoea all over the floor. She was completely disorientated.
I immediately lifted her up gently onto the sofa. I comforted her, cleaned her up, and cleaned and disinfected the floor. There was absolutely no way she could carry on like this without receiving medical attention.
I didn’t know what to do, so I rang for the ambulance around 8:30 pm.
Two hours passed. There was no sign of the ambulance. I subsequently rang again to find out what was going on. They apologised and advised they would send out a crew again.
The ambulance finally arrived at 12:30 am, a good four hours after I originally contacted them.
The paramedic walked into our living room, looked at Mum and then started to question me as to the reason why I phoned for emergency services.
“She needs urgent medical attention,” I replied.
“Well they don’t like taking in these sort of cases in the Accident and Emergency Department, it skews their targets,” he moaned. “You should have called the out-of-hours doctor instead.”
“Are you serious? Look at the state of her,” I replied in total disbelief. Mum kept on insisting that she was fine.
Eventually, the paramedic agreed to take her in the ambulance. We arrived in Accident and Emergency Department at St John’s Hospital at 12:45 am.
Upon arrival, Mum was wheeled into a small cubicle room. The room was freezing. I subsequently complained. I was advised that the air conditioning couldn’t be turned off. The nurses gave Mum two extra blankets. I also put my jacket over her. We waited a further four hours to see a consultant doctor.
“We were waiting for a bed in a ward for your Mum,” he announced.
It was now about 5 am. I was completely shattered. Mum wanted me to go home. The doctor advised me she would be okay, and there was no need for me to stay.
Reluctantly, I left Mum and headed home and went straight to bed. I had about four hours of sleep.
I arrived back at the hospital around 2 pm the next day. The woman on the main reception desk apologised because the computer system had crashed the night before, and she had no record of my mother being admitted to the hospital.
“You can’t have lost my Mum,” I concurred. “Are you telling me you are totally reliant on the computer system?”
She nodded.
The receptionist phoned around to a number of different wards, all to no avail. She asked me to check with five separate departments; again, all to no avail. Then, after two hours of searching, the receptionist discovered that, in fact, Mum hadn’t been moved from the small cubicle room in the Accident and Emergency Department she was in the night before. I immediately rushed over to see her.
I found her cold, shaking, and shivering.
“Mark, please don’t complain,” Mum insisted.
I immediately saw the nurse in charge. The nurse apologised and admitted they simply could not find a bed on the ward. I immediately asked that they put a portable heater in the room. I told them that I was not leaving until they found a bed for her.
Two hours later, she was transferred to a general medical ward.
Admitted to hospital
On Monday morning, another oncologist consultant came round to see Mum. Thankfully, I was present.
“Do you know what is going on, Mrs Carrington?” he asked softly.
“I have a few cells that are cancerous,” she replied.
“Yes, that’s right. But there are sadly more than just a few,” he confirmed in a soft and warm tone. “We can’t treat them. We will make you comfor
table.”
“Thank you so much,” Mum replied.
I sat with Mum all day.
At 7:30 pm that evening, a palliative nurse took me aside and informed me gently that it would be unlikely that Mum would survive beyond the weekend.
“It’s time to prepare yourself,” she concluded.
It was a total shock. As she delivered the devastating news, she could see my inner struggle not to burst out crying. But I could not hold back. Without warning, I erupted into a flood of tears. They came from a hidden place deep within me.
Once I gathered my thoughts, I began to tell her about Mum’s life. Our conversation lasted over two hours. That evening, I just couldn’t face going home so, instead, I stayed in a local hotel for the night.
Mum seemed oblivious to what was going on and how close to death she was. The palliative nurse was so kind and gentle towards Mum.
During the entire weekend, the hospital provided only a skeleton service of medical cover.
On Sunday evening, I noticed that the syringe driver that was dispensing morphine into Mum was empty. Mum was in agony, but once again would not complain. So I called the nurse over to the bed and explained that the driver needed replacing.
“What do you want me to do?” she asked.
“You are the nurse. You should know,” I replied.
The nurse pondered. “I don’t know how to administer the morphine through the driver. I haven’t had any training in this field. I will need to call a consultant,” she admitted.
It was clear to me that the nurse had insufficient training and had no idea of how to care for a person dying.
We then had to wait for an hour until the consultant arrived to change the syringe driver.
I did not want Mum to pass away in hospital. Statistically, around 500,000 people die in the UK each year. Just over fifty three per cent will die in a hospital. I was determined for Mum not to be one of them. She deserved to pass away in a hospice, where she could be given compassionate care and spend her final moments in peace and dignity.
As Mum was on a general medical ward, there were all different women there. In the bed adjacent to Mum was a young woman, probably no more than 20 years old. She kept playing her radio loudly. One time she was singing along to the song Girls Just Want to Have Fun by Cyndi Lauper. The young woman was not to know how seriously ill Mum was at the time, but it simply didn’t seem right. Mum should have never have been on this ward.
“Mum deserves better than this. She is not going to be shunned away in a hospital ward surrounded by young women playing music as she is laying there dying,” I insisted firmly to the ward nurse.
The ward nurse and I both agreed that the hospital ward Mum was on was totally inappropriate.
Thankfully, Mum survived the weekend. On the following day, I demanded that Mum be moved to a hospice. I was advised there were no beds available in any of the local hospices.
Then on Tuesday, arrangements were being made to transfer her to a hospice on the other side of London, approximately fifty miles away from me.
I complained. About five hours later, I was advised that a bed had been found in a hospice local to me, only two miles away.
Hospice care
After successfully arguing Mum’s case, on Wednesday morning, Mum was transferred to a local hospice.
The consultant advised me that because Mum was so gravely ill, she could pass away in the ambulance travelling on the way there. I fully understood the risks involved, but she needed to get out of the hospital.
As I was leaving, I hugged the nurse.
She looked at me with tears running down her face.
“Mark, the hospice will take care of your mum now,” she said sympathetically. “You have done fantastically, but as your Mum is reaching her final moments, you can now be her son and not her carer.”
That afternoon, I went home and prayed as Mum was travelling in the ambulance to the hospice.
I arrived at the hospice around 3:30 pm that day. It was a wonderful place. Full of light. It had 13 beds for inpatients. Mum had her own room, en-suite bathroom, and television. As I walked into her room, she looked calm and serene. She was lying in bed, propped up by brilliant white pillows. She had her glasses on and was watching her favourite television programme.
I was only with her for less than five minutes when suddenly one of the doctors beckoned me. “I need to talk to you,” she ordered.
I left Mum and walked into a small waiting room. As I sat down, I suddenly burst into tears. It was the shock of seeing Mum finally in the hospice. I knew this was now the final chapter.
Naturally, I thought the doctor was going to explain how the hospice will be caring for Mum.
“I want to raise an issue with you,” she pointed out sternly.
“Okay,” I replied.
“This hospice is for short stay patients only. For up to two weeks. If your mum survives more than our target date, she will either need to go home or go into a care home.”
I simply could not believe what I was hearing. Through my blurring eyes, I looked at her and in disbelief replied, “Have you seen my Mum? Have you examined her? She is in no fit state to be moved anywhere.”
In my conciliatory mode, I advised the doctor that if Mum’s health improves, we would cross that bridge when we came to it.
In the back of my mind, I knew there was absolutely no way Mum was going to be moved. If there was one certainty, Mum was going to end her life here at the hospice.
The hospice was open 24 hours a day. This allowed me to come and go when I liked. I felt so privileged to be so close to her every hour of the day.
I would pop in first thing in the morning to see her. I would only stay for about half an hour.
I would return home to do the household chores and go back to the hospice early in the afternoon. When I was with Mum, most of the time we didn’t chat. Once again, my presence was enough. Mum would either be watching television or sleeping.
For the first week or so, Mum was quite content with herself. At times, she would smile and laugh. She felt comfortable in the hospice. Some days, I would walk in the room, and Mum would be asleep. I would sit in the chair next to her. I would sit in peaceful silence waiting for her to awake.
Every day I visited her, I wore a bright red jacket. I would purposely place it on the back of the chair directly in her line of sight. I knew when she woke up, the first thing she would see was my jacket. I wanted to give her the comfort of knowing that I was there with her.
A few more days passed, and Mum was continuing to do well. The nurses, medical and ancillary staff were simply fantastic and amazing. The gentle and compassionate care and attention Mum received was world-class. I couldn’t praise them highly enough.
Mum’s final decision
I remember vividly, early on Thursday morning, I arrived at the hospice.
Mum noticed I had my hair cut. Short back and sides. She smiled from ear to ear. She was so pleased I was taking care of myself. That morning, Mum was determined to walk to the toilet. She refused to use the walking frame. Instead, she used her walking stick.
As she arrived to the bathroom, she hit the wall with her fists out of pure frustration towards her own frailty. I could see she was still fighting. I watched her in pure admiration as she still had fire in her heart even at this late stage of her illness.
That day, around mid-morning, a team of doctors examined Mum. The senior consultant, Dr Stevens, checked Mum’s pulse. He commented that it was beating slowly and was very weak. He then walked out the room, leaving both mum and myself together. It was clear that she had very little time left.
After two hours, Dr Stevens came back into the room. I was sitting next to Mum.
He pulled up a chair and leaned over towards Mum.
“I wish to talk to you, Marian,” he said gently.
With both of his hands, he held Mum’s right hand gently. She was looking directly into his eyes. He went on to explain, in a
soft voice, that she had two options.
“We can put tubes in you, and you may live a little longer. Or, we can make you comfortable,” he said softly. ”What would you prefer?”
Mum knew the consequences of what he was saying to her.
Her eyes were as wide open as they could be. As he finished his last words, Mum turned to me and asked what I thought. At which point, I just completely broke uncontrollably down in a flood of tears. Dr Stevens shuffled up closer. He immediately put his arm around me. He knew instinctively, I had to be held as Mum was now tightly gripping my hand.
It was an act of pure grace, kindness and compassion. The depth of which I had never felt before. He showed me mercy when I most needed it.
Then in a spontaneous and beautiful loving moment, with her right hand, Mum reached to a table next to her bed and pulled out a tissue out of the box and gave it to me. Mum wasn’t crying. I then turned round and looked at Dr Stevens and he was in tears.
Even when she was told the news, deep in her heart she was still thinking of me and not herself. As the tears were streaming down my face, I laughed as I was the one who was a complete nervous wreck. Mum was serene, peaceful and calm.
“Will I know anything about it?” she asked Dr Stevens with calmness in her voice.
“You will be at peace,” he replied. “We will make you comfortable.”
Then Mum said with luminous clarity, the most profound words in the most profound moment.
“I wish to be made comfortable,” looking directly in Dr Stevens’ eyes.
By saying those six words to him, she paradoxically took control of her life by taking control of her own death.
Looking death in the eye, she wanted to die on her own terms.
The conversation lasted less than a minute, but as long as I live, I will never forget it.
She then asked to see her closest sister, Jenny.
Peaceful Breeze Page 8