I would also wash her feet, cut her toenails and massage her legs with moisturising cream. She allowed me on one occasion to cut her hair.
Mum was too weak to even flush the toilet. So we agreed that I would flush it for her. Without her knowing, it gave me the opportunity to check her urine and poo for any signs of blood. I didn’t see any. I also checked her urine colour to see if she was hydrated throughout the day.
She kept on saying to me, “I’m so sorry you have to do this. I do appreciate your help. Thank you.”
I would reply to her reassuringly, “You don’t ever need to thank me. I’m your son.”
Regarding daily chores, I would go out and do the shopping every day. I would cry spontaneously as I was walking down the street. The tears would be flowing down my face to such an extent that the tears stung my eyes.
As I was doing the ironing, washing up, or even vacuuming the house, I would pray for Mum. Having my own silent time with God, gave me personal solace and strength during this period of my life.
We somehow managed to get through each day.
4
First operation
Four weeks had passed in an instant. It was now Monday, 14th July 2014, the day of Mum’s operation.
It was pitch dark, cold, and drizzling with rain as we arrived at the King Edward Hospital at 7 am. There was no one around. Then, at around 7:30 am, the receptionist rushed through the door. She took her coat off and began to log on to her computer. It took about 20 minutes before she finally found Mum’s name on the system and allocated her a time for the operation. We were then told to wait in a small room. As we waited, Mum became increasingly anxious and distraught. As much as I could, I tried to reassure her that everything was going to be alright.
At around 8 am, we saw the senior surgeon who was going to perform Mum’s operation. He was very cordial and professional. He had a soft and warm voice that managed to put Mum at ease. He could see instantly that Mum was extremely nervous. He told Mum that she was in very capable hands. “We have an excellent team of surgeons that are going to look after you,” he pledged to her in a comforting voice.
He was honest and sensitive as he explained to Mum the purpose of her operation and the morbidity risk of the surgery, which in Mum’s case was extremely high due to her severe weight loss and lack of muscle tone. He stressed that all he could do was his best. I thanked him and accepted that was all I could hope for.
He was overjoyed as he managed to arrange Mum’s operation to be his first of the day.
Mum was then asked to sign a consent form. She did so without hesitation. She fully understood the risks involved. He asked Mum whether she wanted her organs to be donated. She didn’t mind, and, subsequently, agreed. The surgeon commented that all her organs were healthy, ironically; it was just the tumour that was the problem. As we left the room, Mum thanked him.
We were then told to wait in a smaller waiting room. Suddenly, the room filled with other women waiting for their operations on the same day. Some were there for ankle and knee operations. They were all talking, laughing, and giggling with each other. Mum, by now a frail-looking woman, was just sitting there, gazing into space. She looked so frightened and scared. I just could not believe that Mum was having a major operation, which she might not survive, while surrounded by lively and much younger women who were preparing for their minor operations. It simply didn’t seem right.
Then the nurse walked in the room. She looked at me. “You are not allowed to be here,” she advised sternly. “This is a women’s only room.”
Mum clutched my hand. “I am looking after my Mum,” I replied. The nurse reassured me that she would be fine without me. Mum obviously did not want me to leave, but I simply had no choice.
As I walked out the door, I glanced back. I saw Mum sitting on a hard metal seat looking so frightened and vulnerable. I waved to her. My heart sank as I closed the door behind me.
As I left, I asked the doctor when I should return. “I should say around 3:30 pm,” he replied.
In my heart of hearts, I felt that I needed to be close to Mum during her operation. I simply couldn’t leave the hospital building. Fortunately, the hospital had a canteen on the ground floor. So I decided to have breakfast there.
Time passed so quickly. My mobile phone rang about 10:30 am when I was in the process of digesting my breakfast.
I quickly answered the call.
A nurse answered the phone.
“Is that Mark Carrington?”
“Yes,” I replied.
“The son of Marian Carrington?”the voice added.
Before I could answer, my heart had sunk.
“Yes,” I responded.
“I am one of the nurses looking after your mother. I would just like to let you know that your mother is fine. It is just that we are unable to operate as we do not have a bed for her,” she whispered.
I rushed to see Mum immediately. She was sitting on a bed in a small cubicle, looking so dejected. She asked me not to make a fuss. But I couldn’t let this go. After numerous conversations with the nurses, I simply couldn’t get an answer. So I demanded to see the senior consultant.
“Are you seriously telling me you cannot allocate a bed for my Mum?” I argued. “The operation was planned four weeks ago. Are you telling me that you are unable to find a bed for a patient who has advanced cancer and requires an urgent operation?”
He apologised. He explained it was out of his hands as it was the bed manager’s responsibility to allocate beds each day.
After an hour of arguing, a bed was finally assigned for Mum. It was now 12:30 pm. I was asked to leave quickly. Both Mum and I had no chance to say goodbye, but we managed to wave to each other quickly before the doctor closed the door abruptly.
I decided to stay in the hospital’s canteen all day. In total, I probably drank about fifteen cups of tea. I had my mobile phone on throughout the day, but it didn’t even ring once.
Five o’clock passed. Six o’clock passed. By seven o’clock, I still hadn’t received a phone call. After waiting eight or nine hours, I still didn’t know if the operation had been a success or not. Finally, I decided to run up the stairs to the sixth floor where Mum’s operation was taking place.
When I reached the floor, the corridor was empty, with no one in sight. I started to pace up and down the passageway, hoping against hope I would see someone who could tell me news about my Mum. Then by chance, as if fate would have it, a door opened. It so happened to be the surgeon we saw earlier in the day.
“Don’t you know, Mark?” he enquired.
“Know what?” I replied hesitantly. He sat me down. For the second time in the day. My heart sank.
“Your mum is fine,” he announced in his softly spoken voice.
Before he could finish his sentence, I screamed, “Thank you, God.”
“But the procedure did not go to plan,” he continued. “We had to stop the operation and resuscitate your mum. Mark, your mum had a severe allergic reaction. Although we are not certain, we believe it might have been the intravenous line inserted in her, which was coated with chlorhexidine. We simply don’t know yet. He concluded.
“Her heart rate increased,” he added. “Her heart was palpitating. Her blood pressure had decreased. The whole of her left arm became all purple. After five hours, we decided the best course of action was not to operate. Do you know that we even had to cancel the whole day’s operations?”
I felt a sense of relief she was alright, but then, that relief turned into the realisation that we were no further forward, and Mum was still facing a traumatic time ahead. She still had the tumour inside her, which needed to be removed. She was also still frail and malnourished.
I was in no fit state to see Mum that evening. I was still in shock and extremely emotional receiving the news as to what had happened to her. Also I had to gather my thoughts on what we both had to face. So I headed home.
The next morning, I arrived at the hospital abou
t 9 am. When I reached the ward, Mum was sitting up having breakfast. She was complaining that her toast was cold. I smiled. I was pleased she was moaning. I told her that she would still moan even if she were living in Buckingham Palace. That made her smile.
“They told me what happened when I came around from the anaesthetic,” she said surprisingly. “I thought it was a bit strange as I wasn’t in any pain.”
I laughed.
Mum was given a blood transfusion and was allowed to stay in the hospital over the course of the weekend.
Before she was discharged, the surgeon arranged Mum’s surgery. “It will be another six weeks, I’m afraid,” he said apologetically.
“Is that the earliest you can operate on Mum?” I asked.
“Yes. In any event, I am going away for a three-week holiday in the Seychelles,”he professed.
He then reassured me, however, that the tumour would not grow substantially in that period and that Mum would not deteriorate.
5
Homecoming
Still frail and weak, Mum was discharged on Monday. We arrived home by taxi around 4 pm.
The next six weeks were going to be difficult. Despite her frailties, Mum was still insistent she didn’t require any care support. She was determined not to have strangers in her home. Even at this stage of her illness, she was fiercely guarding her independence.
I was nearly at breaking point. So I had to be completely honest and told her that I did not think I could cope caring for on my own. After a long conversation, Mum agreed, albeit reluctantly, for a carer to visit twice a day – to wash her and prepare lunch. The next day, I contacted our local council to arrange for the appropriate care provision to be put in place.
The following Monday, a carer started. Her name was Julie. She was amiable, caring, and friendly. Each day she would arrive at the house promptly at 9 am to wash Mum and then return around 1 pm to help with Mum’s lunch.
Over the course of Julie’s first week, she encouraged me to go out, so I could spend quality time with my friends in the sound knowledge that she would be looking after Mum. She would spend hours with Mum.
Then one day as I returned home, I walked into the living room and there in front of me was Julie on her knees praying in front of Mum. Mum looked up at me and explained that Julie had been preaching and trying to convert her to a different religion. I immediately looked across the room and saw our coffee table covered in religious literature.
I immediately thanked Julie for praying for Mum. I firmly explained, however, that her behaviour was unacceptable and fundamentally breached the code of conduct for adult social care. I graciously told her never to return. That afternoon, I reported the incident to the local authority.
Fortunately, Mum saw the funny side of it: “Mark, all your life you have been trying to convert me to vote Conservative (Mum was a lifelong Labour supporter), now you are attempting to change my religion too.” We both laughed. The incident put a smile on Mum’s face as I tucked her into bed that evening.
As a result of this episode, Mum did not want any further carers in the house before her operation. Given what happened, I could understand her reason. Therefore, the responsibility for caring for Mum would lay solely with me. I would wash and keep Mum clean. She would constantly look at her arms and cry that they were wrinkled, and in her words, looked like alligator skin.
My immediate concern was to guard Mum against any exposure to negativity. I understood that the most basic human needs of any of us are to be safe, to be secure and to be loved. In silent contemplation, I made a promise to myself to protect her and ensure no one was going to harm her.
At this point, as Mum was more frailer both physically and mentally, there was a real danger that she could easily get caught in an emotional downward spiral of always worrying. Observing her behaviour pattern, it was clear that even the slightest problem or incident would agitate her. For example, when we received letters through the post, she worried that they were bills to be paid and whether we had enough money to pay them.
In terms of our day-to-day practical living arrangements, it was imperative I reduced Mum’s anxiety. This, in effect, meant ensuring all our bills were paid on time and we always had sufficient food in the house. I kept reassuring her that she did not need to worry about our finances. Day after day, I tried to put her mind at ease. I kept reassuring her that the only person she needed to focus on was herself.
We both agreed that she would not answer the phone when I was out of the house as at the time, we were receiving numerous nuisance calls. For example, we were receiving calls from companies selling insurance policies. Such calls only served to increase her anxiety and stress.
Given the circumstances, I knew rushing back to work would have been a mistake. It was imperative that I maximised the time I had with Mum at home. As I already used my annual leave entitlement, I agreed with my employer to take a further twelve weeks’ unpaid leave. My employer was satisfied with that arrangement, as I knew they didn’t want me to return to work.
Over the course of my career, I understood how power struggles manifest themselves within organisations. They are part of office politics. With Mum having cancer, it gave my employer the perfect opportunity to reorganise me out of my job. As I had only been working there for just under two years, I had no employment rights. At that particular point in my life, however, work was a secondary consideration. My entire focus was on caring for Mum.
After the first operation, the doctors at the King Edward Hospital wanted to know precisely what caused Mum’s allergic reaction. In particular, the surgeons were desperate to avoid a repeat of the incident. So, during the next six weeks, Mum was subjected to numerous allergy tests. After an exhaustive round of assessments, the doctors, however, could still not pinpoint the precise reason. The best conclusion they came up with was that it was indeed the chlorhexidine that was given to her through the tube.
On Mum’s final appointment, I started to chat to the senior allergy consultant. She told me that she was currently caring for her mum as well. She understood and could empathise with what I was going through. “Your mum is delightful,” she told me in a tender tone. “She resonates remarkable warmth. Even in the face of adversity. Your mum has a strength of character and a wonderful spirit.”
“I know,” I replied with a warm glow in my eyes, “I am very lucky.” We hugged. I then kissed her hand. I thanked her for all the help she was giving Mum and wished her well with looking after her own mother.
Two weeks before the operation, Mum was also asked to attend a memory clinic at the hospital. Initially, Mum was reluctant, which was typical of her, but after some cajoling, she finally agreed.
We arrived at the hospital at 2 pm. As we were waiting in reception, a junior consultant greeted Mum.
“I am Dr Phillips,” she announced. “I am the junior doctor who will be assessing you today. Before you undertake the assessment, I would like you to draw a clock on a piece of paper.” She immediately walked back to her office. We waited a further hour before a Mum’s name was called out over the loud speaker. We were then led into a small room. As we walked in, Dr Phillips was sitting down writing some notes. She looked up and asked Mum what time she had drawn on the clock face.
“Seven o’clock,” Mum replied. “Anyone can see that. I am not out of my mind just yet.”
I explained to Dr Phillips that we were not advised that a memory assessment was going to be conducted. I told her that Mum was exhausted and I did not think she was ready or prepared for the assessment. Dr Phillips simply shrugged her shoulders and proceeded with further memory exercises.
“Where do you live?” she asked.
Mum told her the address.
“Where is that?” Dr Phillips enquired.
“Fulham,” Mum asserted.
Dr Phillips probed further, “Where is Fulham?”
“What kind of a question is that?” Mum replied, looking perplexed.
Using a different
tack, Dr Phillips enquired, “Where is this hospital?”
“Paddington,” Mum replied confidently.
Frustratingly, Dr Phillips looked at me and fumed, “We are not getting very far with these questions.”
“Do you know what day it is today?” quizzed Dr Phillips.
“Yes,” Mum responded.
“Would you like to tell me then?” Dr Phillips retorted while sighing heavily.
“Why, don’t you know?” Mum whispered innocently.
Mum was not being difficult. Her hearing was not good. She was doing her very best to answer the questions. But at this stage, Dr Phillips was getting increasingly annoyed. It was evident to me, as the tests carried on, that Dr Phillips failed to grasp how much information Mum could digest.
She raised her voice. “Okay, what month is it? Can you tell me the days of the week backwards?”
Mum smiled. She recounted the days with ease.
Dr Phillips then proceeded to go through a different checklist of questions. She explained that the questions were designed to determine whether Mum was depressed or not.
“What are your goals in life?”
Mum and I glanced at each other.
“What do you want to be doing in five years’ time?”
Dr Phillips proceeded with a further ten questions.
I looked on in total astonishment as she read question after question from the checklist.
At the end of the consultation, Dr Phillips concluded that Mum was suffering from depression.
Mum was extremely sad and apprehensive but in my opinion, not depressed. We left the room stunned.
Two weeks later, Mum subsequently received a letter from the hospital. It stated:
“This lady has a depressive affect and scored 11/30 on the geriatric depression scale. This is suggestive of a depressive episode and may explain a score of 7/30 on the Montreal Cognitive Assessment. It is likely there is an underlying cognitive disorder. There is a high risk of postoperative dysfunction, delirium, and cognitive decline. This lady will need a permanent care home. It is unlikely she will ever have a balance of mind to exercise any rational decisions regarding her care provision.”
Peaceful Breeze Page 4