That was the tipping point.
“Please do not use that as a threat,” I responded in a calm manner. “No one would want her back home more than me, but there is absolutely no way she can come out without a care package in place. Don’t even look at discharging her.”
Mum then turned to me and then asked, “Don’t you want me home, Mark?”
My heart sank. I knew the junior doctor was playing the emotional game by forcing a wedge between Mum and myself to free up the bed. But I remained calm and resolute.
Dr Harding frowned. She looked incredulous as I was questioning her decision. She left abruptly. Ten minutes later, the senior consultant came round to examine Mum. He was more conciliatory.
After a brief discussion, we agreed that Mum would be discharged on the following Tuesday. That gave me just under a week to sort out our living arrangements at home.
What amazed me, in retrospect, was that the junior doctor was simply oblivious to the care needs of Mum. Her priority was to free up the bed for another patient.
That weekend, I bought a single bed with all the bed clothes. Mum was going to sleep in the living room. I also arranged the delivery of a commode.
7
Our life routine
Discharge from hospital
I remember vividly the day Mum was discharged from the King Edward Hospital. It will stay in my memory forever. I arrived at the ward around mid-afternoon on Tuesday, 16th September 2014.
As part of the discharge process, the pharmacist discussed Mum’s medication.
“You need to speak to my son,” Mum told her.
Mum needed to take one 15mg mirtazapine tablet at night, for five nights. The pharmacist advised Mum that she also had to take Dalteparin, which is an injected anticoagulant to ensure the thinning of her blood and to stop any blood clotting. “Who will do that?” I questioned the pharmacist.
“You, of course,” she pointed out tersely.
“I don’t know how to inject a needle into Mum,” I argued.
“That’s not my problem,” the pharmacist replied in a dismissive tone.
Then the pharmacist immediately left Mum and started to walk over to see another patient on the ward.
I just could not believe how she was treating us. I subsequently interrupted her and told her I didn’t like her attitude. It was clear she had no appreciation of how to talk to elderly patients. The pharmacist looked at me with a blank expression. I was not going to receive any assistance from her.
I subsequently spoke to the Matron, who apologised. She arranged for a District Nurse to visit Mum every day and administer the injection.
By 2 pm that afternoon, Mum was fully dressed and sitting on her bed. She had been promised that an ambulance would arrive by 3 pm to take her home. I subsequently inquired to see if I could travel with her. Due to insurance reasons, however, I wasn’t allowed to travel in the ambulance.
As Mum was sitting on the bed, a nurse walked over to her. The nurse then went to take Mum’s Zimmer frame away.
“This is the NHS frame,” she hastily remarked to Mum. “You can’t take it home.”
Once again, I interrupted. Mum’s eyes rolled as if to say, Mark, please not again.
“Are you being serious? Look at her, she can hardly walk,” I asserted. “She is not leaving the hospital without it.”
“Just for the record,” I added, “two weeks ago, the occupational therapist advised me that Mum could keep it. We are not stealing anything.”
The nurse shrugged her shoulders and left, annoyed. She reported me to the Matron. A few hours later the Matron walked over to me and once again apologised.
Home, sweet home
Around 3:30 pm, I decided to go back home and wait for Mum. The hours passed. Six o’clock, seven o’clock, eight o’clock in the evening went by, with no sign of the ambulance or Mum. I phoned the ward nurse. She told me that Mum was still there, sitting on her bed, waiting for the ambulance to arrive.
I informed her that Mum had been waiting since 2 pm. The nurse apologised. I told the nurse that if the ambulance did not pick Mum up in thirty minutes, she would have to stay in the hospital another night. Fifteen minutes later, the nurse rang me back and told me that Mum was in the process of being transferred to the ambulance. Once again, the hours passed. Mum arrived home at 10:30pm in a large taxi. The driver helped Mum out of the vehicle. She thanked him.
She looked very frail and thin. She was determined, however, to walk to her front door unaided, with just her Zimmer frame. As she got to the door, she sighed heavily with relief and pure joy.
There was no fanfare, no coronation—just me, waiting at the door, with the light of the full moon shining on our house. Nevertheless, it was one of the happiest days of my life to see her arrive home.
Mum shuffled through the front door. She paused, took a breath, and then her eyes opened wide in pure wonderment and delight as she had not seen our living room for five and a half weeks. It was so beautiful to see the warmth and joy on her face.
Her single bed was now located at the far end of the living room. Next to it, I put some brightly coloured flowers on the table. Although she didn’t particularly like the colour of the duvet cover, she commented that I had made the room look beautiful.
I helped her to sit down on the sofa and made her a cup of tea. Afterwards, I tucked her comfortably into her new bed. That night, she slept soundly.
The next morning, around 6 am, I heard Mum shouting for me. I quickly rushed down the stairs. I walked into the living room. Mum was just in the process of getting up from the bed. She had just soiled all the bedclothes, and there was running diarrhoea on the floor.
She was distraught, agitated, and panicking. She was in a lot of emotional discomfort. She was shaking. I quickly comforted her, saying to her tenderly, “It’s okay,” and,“Don’t worry.”
I quickly managed to lift Mum onto the sofa. Then I threw the bed sheets away and started to clean and disinfect the floor. For about ten minutes, Mum was disorientated. Thankfully however, I managed to calm her down.
Mum noticed I had purchased a commode. “I’m not going to use that,” she announced with clarity. She told me she would walk to the toilet when she needed it. So we threw it away. After only two weeks of being home, she started to use her walking stick rather than the Zimmer frame. She was fierce in safeguarding her physical independence. And while she got used to her walking stick, she despised all the other aids associated with old age and infirmity.
Daily living
I appreciated the fact that having been a very independent woman (going out shopping each day), to be confined and living in one room, was going to be very difficult for Mum.
A routine of eating, drinking fluids (to maintain hydration throughout the day), and regular exercise was the only way, in my opinion, to improve Mum’s quality of life and give her back a level of independence she so desperately missed,
I was always balancing between what she was able to do for herself and what daily activities she required a level of support.
We soon established a daily routine. For me, it was the only way of getting through the day without feeling despondent and disheartened. In many ways, we fell into a comfortable pattern that suited both of us.
So, our typical day proceeded as follows:
Mum would wake up around 6:30 am (during all of her life, she was always an early riser).
Even before I woke up and got down the stairs, Mum managed to dress and make her bed. Personal hygiene and keeping the home clean and immaculate were some of the fundamental core values in her life, and she wasn’t going to change because of her illness.
I would then make her breakfast. This would consist of either cereal or porridge. A carer would arrive around 9 am and give Mum a wash. Sometimes it would be a strip wash or just washing her face and back. Around 11 am, we would either have a boiled egg with toast, ham, or a chicken sandwich. That would be followed by dinner at 4 pm, which usually
consisted of roast chicken, peas, carrots, or a steak pie. And then, around 6 pm, we would have a dessert, which would typically be apple or rhubarb crumble and ice cream, or perhaps a lemon or strawberry cheesecake.
The day was interspersed with three or four cups of tea with one or two biscuits.
At the end of each day, I would check how many calories Mum had consumed. The dietician recommended about 3,000 calories a day. That was an impossible task for Mum. I was, however, satisfied that Mum was consuming in around 1,800 calories a day.
Also, Mum’s doctor prescribed a nutritional supplement drink designed for cancer patients. It contained around 350 calories and 13 grams of protein. Initially, Mum refused to drink them.
I kept urging and cajoling Mum to drink at least three bottles a day, but I soon gathered that the more I pushed, the more Mum refused to entertain the idea of drinking even one bottle. “If it is so good, you taste it,” she would often say to me. So I did. And she was right. It tasted vile. I reminded her that it wasn’t the taste that was important, but the nutrition it gave her. That argument didn’t wash with Mum.
It soon became apparent that, while she wouldn’t listen to me, she would take notice of the carer who came in the morning to wash her. Encouraged by the carer, Mum reluctantly started to consume one nutrition drink a day.
As a result of our daily routine, together with the exercise programme I put in place, Mum’s weight gain over the next six months was impressive and remarkable. I would weigh Mum every week. She so desperately wanted to put on weight.
From weighing only six stone when she came out of the hospital in September 2014, Mum reached seven stone ten pounds in January 2015. She then gained more weight, where she reached eight stone four pounds by March 2015. Not only did her weight increase, but her mobility also significantly improved. I felt comfortable leaving her alone for a few hours each day.
Mum was progressing well, so much so that it was my intention to go back to work.
I arranged for carers to come in three times a day, morning, lunch time, and early afternoon, to attend to Mum. At this stage, Mum was capable of going into the kitchen by herself and boiling an egg or making a sandwich for lunch. The carers were skilled, dedicated, and compassionate, which gave me the extra reassurance I needed that Mum would be looked after during the day.
With the care provision in place, and with my 12 weeks of unpaid leave at work coming to the end very quickly, my employer and I devised a return to work plan, with reduced hours for the first two weeks and then going back full time after that.
On my first day back, I discovered that my role and responsibilities, in fact my entire function, had been transferred. My employer arbitrarily sidelined and demoted me to more demeaning activities. In effect, I had no job.
My employer wilfully breached my employment contract. Their motive was clear: to oust me from the organisation. It also wasn’t surprising to me, as I was aware many months ago that they wanted to remove me. I was simply unlucky. I was in the wrong place, at the wrong time, with the wrong people around me. I joined a toxic, pernicious and dysfunctional working environment. I take, however, full responsibility for allowing myself to get into such a situation. I should have seen the warning signs and arranged my exit from the company much sooner. What did surprise me, however, was their sheer callousness and ruthlessness. I saw with my own eyes, bigotry and hatefulness, which I hope I will never see again in my lifetime.
During the first week back at work, my self-esteem and self-worth crumbled, and I felt completely overwhelmed. Night after night, I would wake up in the early hours and felt gripped and terrorised with anxiety and fear. I began feeling tired and sad and was quickly heading into a downward spiral. I doubted my abilities. I doubted who I was. I questioned my self-worth. I doubted my very own existence. Most of all, I questioned my faith. I covered up all of this for Mum. I knew that I could not show her what I was going through.
For two solid weeks, I started to gamble and lose heavily in order to numb out all the pain. I was in the process of throwing my life away. In short, I was heading for a downward spiral of self-destruction. With such an addiction, I first had to recognise I had a problem. As I was in denial, this was not easy. With all addictions (gambling is no exception), I had to work out how to deal with the problem. I had two choices facing me. Either, I tried to avoid the ‘triggers’ that made me want to gamble in the first place. Or, I simply abstained from the gambling addiction. Thankfully, I chose the latter. A voice inside myself told me to stop. And I did. I pulled myself back from the dark place I did not want to go.
I remember one evening, I was lying in bed, thinking to myself that I simply couldn’t handle all of this. I felt emotionally paralysed. I knew, however, that if I disintegrated and entered the dark place of my depression, I would bring my Mum down too, as she was entirely reliant on me, physically, emotionally, and financially. It is not an understatement to say that her sheer survival was relying on me. I had a choice to make. Do I just give up and go into my own downward spiral of despair? Or do I carry on? It was then that I prayed for strength.
During a restless and sleepless night, I turned on the radio for some comfort. I just happened to catch a song called Last Minute by an artist called Josephine. The chorus line resonated and spoke deep within my heart.
The next morning, as I woke up, I knew my prayers had been answered. I found my inner strength. The only thing that mattered in my life was not to let Mum down.
As for work, I knew I deserved better than to be treated in that manner. So the next day, I took back control of the situation. And more importantly, I took back control of my life. I immediately resigned. It was all but in name, constructive dismissal. I remembered the advice Mum gave me when I was young: “Do unto others as you would have them do unto you.” I was determined my peace of mind would not be destroyed. One of my closest friends gave me some profound advice. “No one can take any power away from you because they never gave it to you in the first place. Don’t you see Mark, it is not theirs to take. The power lies within you and no one else. Don’t forget who you are. Your Mum has strength of character. And so do you. Search for your inner ego strength.”
On my last day at work, I prayed. And from somewhere, I found a space within my heart to forgive my employer. Forgiveness was paramount to my emotional and inner healing, as the alternative was to allow bitterness and resentment of the injustice to fester within me all my life. I was determined not to live my life full of hatefulness but instead one of peace and harmony.
I remember the famous Holocaust survivor, Viktor E. Frankl, once said that, “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” So I chose to forgive my employer.
I walked out the door with dignity and peace within my heart and never looked back. I went home that evening and once again looked at my charter.
I chose not to tell Mum what had happened that day at work, as I knew she would start worrying about me. That was the last thing I wanted her to do. So the following week, I left home at the same time in the mornings. Mum believed I was going to work. Instead, the harsh reality was that I was walking the streets of London, looking for work.
After a week, I told Mum that my employer had given me some more time off. I was uncomfortable telling her a half-truth. But to paraphrase Marlon Brando, the famous American actor, “Everyone lies. We lie for peace; we lie for tranquillity; we lie for love.” I freely admit I lied to Mum out of love. To protect her from worrying and not to cause her any unnecessary distress.
Two weeks after I resigned from my job, I found a part-time role. It was ideal for me, as it was three days a week. For the other two days, I could be at home looking after Mum. I knew somewhere a guardian angel was watching over me.
Fighting spirit
In October 2014, a young community physiotherapist started to come round every week to see Mum.
He started showing Mum a few exercises to improve her mobility. Mum was reluctant at first, but eventually decided to do them.
It was clear from the start that he was not used to dealing with an alert, lucid, and coherent elderly person. I kept repeating to him that Mum was fiercely independent, but he refused to listen. While he was helpful and encouraging, he would challenge Mum. However, Mum was not a person to be challenged and, therefore, a clash was inevitable. On one occasion, the physiotherapist arrived with a bath seat for Mum to sit on when she takes her next shower. He wanted Mum to try it out. He insisted that Mum needed to walk up the flight of stairs to the bathroom.
Mum was insistent she did not want to walk upstairs. At first, she quietly refused. The physiotherapist was persistent. After about thirty minutes of arguing, Mum reluctantly agreed. The physiotherapist and I supported Mum up the twenty steps.
Once in the bathroom, the altercation occurred.
“I want you to sit on the seat,” the physiotherapist announced firmly.
“I am not going to use it,” Mum replied. “I am not going to sit on it.”
Three times he insisted that she should try to sit on the seat, which straddled each side of the bath.
On the fourth time of asking Mum to sit on the board, his attitude became condescending.
Mum then exploded with anger.
“You are not listening to me. I have told you four times; I don’t want to sit on the board,” Mum said angrily. “I may have cancer but my mind is still there. I am not dead yet. I know what you are talking about, and I simply do not want to use the bath board.”
I saw his bulging veins in the back of his neck.
He then pointed out sarcastically, “I am only doing my job, darling.”
“Don’t call me darling,” Mum responded.
I just stood there watching them. I decided not to intervene as I could see Mum was more than capable of handling the situation. As both of them were locked in this argument, I suddenly burst out into laughter. They turned their heads in unison and looked at me in astonishment.
Peaceful Breeze Page 6
