by Tina McGuff
‘That was the worst day in my whole life, Tina – the worst. When I returned to your gran’s house, I couldn’t bear to be around her a moment longer; I was filled with rage. I moved away and, eventually, at nineteen years old, I met your father. We were together for a few months when I told Michael about Robert, and I asked if he would help me get him back but he said, no, as it wouldn’t be right for the child. In fact, it wouldn’t have been possible anyway.
‘Your father was also from a poor, working-class family but we fell in love and, for the first time in years, I had hopes for a bright future. More than anything else, I wanted a family. I wanted a settled, secure and happy life, to mend my broken heart.’
Suddenly, something clicked in my head. I could see now why Mum had gone off the rails when she found out about my dad’s infidelity. She had put all her hopes into this perfect family life they had created – she had buried all that hurt and pain by building a better life. For the first time, I understood fully now why she had been so destroyed by my dad’s behaviour.
‘So is that why you took it so badly?’ I asked tentatively. ‘You know, when Dad went off …’
‘Yes, I suppose it was.’ Mum nodded solemnly. ‘I had never forgotten about Robert. Every day, I thought of him, of the age he would be now, and hoped he had a good life. But I tried to create a new life for myself, a perfect family life, and I thought I had succeeded. When it all came crashing down that dream was shattered, too, and the hurt went even deeper than before. The sense of betrayal was terrible and I couldn’t forgive him for that.’
‘How do you feel now, Mum? I mean, about what you did to Dad?’ I had to know.
‘Of course I regret it!’ she said. ‘I bitterly regret it. Your father forgave me years ago and, in some ways, we are learning to put the past behind us now and create a friendship. I mean, I did love him, after all, and he is your father. I just thought it was time for you to know what lay behind all of that. You deserve to know the truth – after all, Robert is your half-brother and, who knows, he may come looking for his birth family one day.’
We sat in silence then; Mum all talked out, me trying to absorb the enormous news she had just revealed. It was so sad that she had kept this secret for so long – that she had been made to feel ashamed, that she had been forced to give up her child. My heart went out to her. Now I could see the links between us, the way both of us had fought our own instability and uncertainties about the future. All that time I had imagined myself battling on my own to overcome my mental ill health, I realised now that Mum, too, had fought her own battles. And like me, she’d snapped.
At the same time, I was excited to learn I had an older brother and my mind swarmed with questions: Would he look like me? Where was he now? Would he want to know all of us?
‘I’ve tried to find him, Tina,’ Mum said after a while, pushing the hair back from her face. ‘All the agencies, the organisations – you know, I’ve been to all of them but I don’t seem to be able to get anywhere. It’s up to him – if he wants to find us, he will. In the meantime, I miss him. You know? After all these years, Tina, I actually miss him.’
I took my mother in my arms then and held her as she sobbed like a child. For the first time in our lives, we had reached a level of understanding and compassion that had never really been there before. She had suffered so much and, now, I could see and feel the scars of her past – I loved my mother more than words could ever say.
Chapter 22
Losing Dad
Over the next few years, our lives settled into a happy rhythm. I was fulfilled both personally and professionally and I felt mentally strong. Occasionally, I still thought about flying but, for now, I had to concentrate on raising the children and, while they were young, I didn’t feel it was right to put myself in a position of unnecessary risk. I reassured myself that, one day, I would get back up in a plane.
Jock and I were busy with the kids and work but we stayed close to all the members of the family. We all tried to help Mum find Robert but, sadly, got nowhere. However, she was very contented in her life and was even made mayor in her town! It was such an achievement and we were all very proud. I couldn’t help but feel a little amazed at the turnaround – after all, she had been in prison years before. Now, that was firmly in the past. We all went down for her inauguration ceremony and it was excellent. Reg, her husband, looked wonderful in his new suit and she looked radiant with pride as they were both given their chains of office.
The onset of Dad’s health problems coincided with our business difficulties. He had stopped drinking and smoking years before after a couple of mini-strokes but, when the business started to fail, he fell back into bad habits. A smoking ban in bars introduced in 2006 hit us hard. Then, two other bars owned by big pub companies opened within a few hundred yards of us, with cut-price drinks and food. The supermarkets were competing on our turf, too, offering ridiculous prices for alcohol. It meant everyone was staying at home to drink and smoke instead of coming to the pub.
Over the next year, our turnover went down and the interest payments on our loans went up. The global financial meltdown began to impact on every small business and we were in trouble. Before then, I could pay everyone on time and in full. Now, Dad said I could only pay bits and pieces to keep the wolves from the door.
Eventually, the crash came late in 2006, and we lost everything. We had to sell the business for next to nothing. Dad’s collection of top-of-the-range BMWs was repossessed and he was left humiliated and broke. It was awful and very degrading.
A year later, Dad decided he needed an income again, so he invested every penny into a rundown bar in Dundee that had been closed for a very long time. We tried to talk him out of it as it was going to be a tough call. But running a bar was all he knew and loved, and he was convinced he could make it a success. The day he signed the papers, he was a wreck, sweating profusely and shaking like a leaf. I took him aside, to ask him if he knew what he was doing, and he just said: ‘Yes, Tina, I have no choice.’
It was always going to be a disaster. We tried our hardest to make it work, putting in long hours and every ounce of energy we had but, by now, Dad was showing strange signs. He was walking oddly, shuffling along, barely picking up his feet. When he went to the doctor, he was told that he needed a knee replacement but, at fifty-eight, he was too young. A year on, he was slurring his words. The doctors said this was down to mini-strokes but reassured him that he was essentially fine, putting him on a course of statins, fish oils, and glucosamine for his knees.
But I could see he was getting worse and worse. Now, his legs were so stiff, he had to pull them one at a time into the car in the mornings. His knees were solid and could hardly move; his face was also becoming expressionless. Often, he would cry out in pain but would try to hide it from me, although I could see what was going on.
One day, I watched him try to tie his tie, but it was such a struggle for him, I decided to arrange an appointment with our family doctor. She gave him a small test, where she asked him to write his name, draw some pictures and answer some basic questions, before he had to get up and tie his shoelaces. He stood up and staggered over, but he could not tie his laces since his fingers would not work properly. The doctor instantly knew what was wrong with him.
‘Michael,’ she said. ‘I’m going to refer you to the Parkinson’s clinic for an assessment.’
No one had suffered from Parkinson’s in our family, so I knew very little about the condition, apart from that the actor and activist Michael J. Fox had it, as did the great boxer, Muhammad Ali, and they were still alive after years, so I was not overly worried. I drove Dad home, then went back to our house and started researching on the Internet. The message seemed to be the same from every source – Parkinson’s was a long-term degenerative illness but you don’t die from it, which made me feel much happier as it meant it was not going to kill him and he would be around for a very long time, possibly disabled but at least alive and functioning. We kn
ew that he was struggling at work so my sisters Katie and Sophie took over running the bar.
But Dad was stubborn – he refused to give up work until, one day, he could no longer walk up the stairs to the bar. We told him he needed to be at home to rest and he was devastated – it was all he had done for 22 years. He loved his job and all the people he saw every day, but he could no longer walk and the staff and customers were struggling to understand him when he spoke.
The clinic diagnosed vascular Parkinson’s, which was probably brought on by his arrhythmia and mini-strokes, the latter brought on by minuscule clots of blood created by the irregular heart rhythm hitting his brain. The drugs they gave him made practically no difference at all. He was also given intensive physiotherapy and hydrotherapy.
Meanwhile, the bar was losing money fast. The recession had hit everyone and our community could no longer afford a regular night at the pub, so, reluctantly, we closed the doors in 2010. I was lucky as I was working as a phlebotomist by then, my sister Katy had started a small cleaning company and Sophie had gone back to working in pubs, so we all had other sources of income; but it broke Dad’s heart to know his bar life was over.
Just a year later, he was fully in the grip of the disease. It was frightening how quickly it progressed – he could hardly walk at all now and his legs were so rigid and almost bow-shaped, he needed a Zimmer frame to move a few feet. His bones now made a creaking noise, which was horrible. The pain would often bring tears that rolled softly down his face, without him making a sound. But he never complained.
Dad’s voice was also disappearing. All the muscles in the voice box and larynx were affected, depriving him of the ability to speak. He was in Victoria Hospital for a few months and, there, they confided his illness was one of the fastest they had ever seen in the unit. It got so bad, his swallow reflex was affected and he started choking on his medication and food. This led to several bouts of pneumonia – it was very distressing for him and us.
We went to see him every night and I would sit and chat to him about my day and what the kids were up to. My other sisters would try to get up during the day and he loved seeing everyone. He had a portable DVD player and spent every day sitting, watching films – it was really all he could do now. Dad was now in adult nappies and, on what the doctors described as, a Stage C diet to stop him choking. This consisted of mushy food – thickened fluids – so all his tea or water looked like wallpaper paste, yoghurt and custard. He could not eat anything else as it would stick in his throat or go straight into his windpipe. It took him about an hour to eat a tiny plate of mashed food, so we would just all sit together and eat and chat.
Dad was now a true invalid. It killed me to see him this way – after all, he used to be the life and soul of the bar, with a joke and a smile for everyone. Now, he barely saw anyone and, too ill to live at home, he was put into a room in a rehabilitation unit. I couldn’t help reflecting on the circles in our lives – 20 years previously, it had been me in the rehab unit. Now, it was Dad. He needed a hoist now as his body had become so rigid he couldn’t straighten his legs at all any more. His arms would get stuck in a V-shape and his fingers refused to close. His sharp mind and mischievous wit were trapped in a useless body.
When he was sixty-one, he was admitted to hospital from the unit with a respiratory infection, unable to breathe. When I came to see him, a consultant took me aside for a quiet word.
I was nervous as I followed him into the small side room.
‘Mrs McGuff, you have to understand your father is a very sick man now,’ he started. ‘I think you and your family should be prepared for the fact that it is unlikely he will last another year.’
‘What? How do you know that?’ I demanded. I didn’t want to believe him.
‘I have been doing this job for thirty-five years, Mrs McGuff. We know from previous cases and Parkinson’s, that’s the pattern. I’m sorry. I know it’s the last thing you want to hear, but you need to get power of attorney as well. Please go and see your lawyer.’
‘No!’ I replied tartly. ‘My father is of sound mind and can make his own decisions and, until the day he can’t, I’m not going to do anything.’
The consultant fixed me with a knowing look then, and said: ‘Look, it’s not about the illness – my wife has power of attorney over me in case I drop dead. It’s just to ensure you can deal with the legal matters without any issues.’
‘Okay, well, thank you, Doctor. I’ll talk to my sisters about it,’ I said. But I couldn’t accept his words. I was convinced my dad would soldier on for a lot longer.
But he continued to slide downhill – after a few months, he was choking on everything and he could not speak at all. He communicated through pointing to letters on a piece of paper. During this time, he lost a lot of weight, since he was barely eating, and was also given a long-term catheter so they could measure every liquid input and output. We went to see him every day – I was determined to be there for him, to show him my love. From my own experience, I knew just how lonely and bleak it was, living in a hospital ward. It was his love that had saved me all those years before – I would be there for him, too. I couldn’t let him down.
At night, I lay awake, unable to sleep for worry. We all loved him so much – he was the glue that held our family together and my best friend. I thought about all our amazing times together as a family and how the grandchildren adored his silliness and jokes. I missed him moaning at me for not going fast enough around the cash-and-carry in the mornings, and the Sunday lunches at the house. It was all slipping away and I was not ready for that.
A few months later, the doctor called us all in for a conference.
‘Your father is dying,’ she told us with sorrow in her eyes. ‘He doesn’t have long now: once the swallow reflex goes, as his has, he can choke on his own saliva. This is a potentially life-threatening issue. He could choke to death or develop pneumonia again and not pull through.’
It was our worst fears confirmed. She asked us whether we wanted to keep admitting Dad to Ninewells Hospital when he was ill and we all looked at each other and agreed instantly that we would do whatever Dad wanted. He still had a fully working mind and, if he chose to stop treatment, we would accept and abide by his decision. We asked if Dad knew all of this and she said, yes, if he had a heart attack now, he’d chosen not to be resuscitated. We had no choice – we had to respect Dad’s wishes.
My sisters and I were all devastated – I could see from their anguished expressions, we felt the same way. I suddenly felt very detached from the situation, light-headed almost.
‘Your father knows he is dying,’ the doctor added. ‘We have been mentally preparing him for a month or so.’
It was like being smashed in the face with a sledgehammer. I felt my chest tighten and thought I was going to faint. Tears streamed down all our faces, there in the room. This was the news I had dreaded and I just blocked it out. Even though I was hearing the words, I pretended it wasn’t happening. The doctor asked us to all have a chat and speak to Dad, then get back to her with our wishes. This can’t be real, I thought, recalling my online research. You don’t die from Parkinson’s disease. Maybe he’ll recover?
She left us and we talked – we were united; we would go along with whatever Dad wanted. We went to see him and I asked him if he was okay. He looked at me with a knowing expression and nodded slowly; he knew what this was about.
‘Dad, we just wanted you to know that we have agreed to do whatever you want,’ I said in a tremulous voice. ‘If you wish to stop treatment, then we’ll respect that.’
Dad nodded again. I knew for certain then he didn’t have long: his head was now stuck in a forward position as his neck muscles were frozen. His whole body was rigid. He spent all day and night in bed, hoisted up only now and again to have a bath and get his nappies changed. I burst into tears and tried to hug him – he was crying, too. He tried to say something, so I got up and went for a sheet of paper.
He spelt o
ut the words: ‘You are crushing my neck!’ which made us all laugh. Typical Dad! He had a silly sense of humour and that’s what got us through a harrowing moment.
Now we knew how Dad wanted to die: he wanted to go home, to see the view of the River Tay from his window and feel surrounded by love and care. He didn’t want his last moments to be in a sterile hospital ward. We had a wonderful care manager and the palliative care plan started taking shape. It was terrible, knowing we were making plans for his death. I prayed there would be some sort of problem and they could not get him home so he would be kept alive in the ward and we could still see him every day. I went to see him just before his sixty-second birthday, one night on my own, and was sitting next to him.
‘Dad, can you not stay here a little longer?’ I asked quietly.
He looked at me and whispered in a tiny voice, a voice that took him so much effort to summon up: ‘Tina, they can’t keep me here for ever.’
And he was right. Selfishly, I wanted him to live longer but he was exhausted and wanted it all to end. On the eve of his return home, Celine made the massive 24-hour bus journey up from her home in Cornwall, heavily pregnant.
Dad was brought back to his house on 20 March 2011, a week after his 62nd birthday. His bedroom had been transformed into a medical suite, with a large hospital bed, mechanical hoist, oxygen cylinders, nappies and tons of equipment. We were all there when he arrived in a huge ambulance, lying flat for he was too ill to sit up. He looked awful – very grey and scared, and his breathing was terrible. We tried to smile at him but we could see from his eyes he was frightened he might not make it into the house. He was very carefully brought in on a stretcher.