The following story is written by Christine’s daughter, Karen.
My mum, Christine Mackenzie, was born on a small island called the Isle of Cumbrae in Scotland. She and my dad met on the island after he moved there from Glasgow at the age of 9.
My mum joined the police, and my dad became a brewer, and they moved to Newark after they got married. They had my sister there and later moved to Edinburgh where I was born. We moved to St Kitts in the Caribbean and it was there that my younger brother was born. After leaving the Caribbean, we moved to Chelmsford in Essex, then my parents moved to Long Eaton in Nottingham where they have lived for over 30 years.
Over the years, my mum became gran to 10 grandchildren and 3 great grandchildren. She loved her family fiercely – we were the most important part of her life and she was always there for all of us without fail. My mum loved gardening, crocheting, knitting and cross stitch. She made the best coffee buns, melting moments and strawberry and fresh cream cakes. She would speak to anyone and help anyone in need.
Around Christmas 2023, my mum started to feel nauseous and was burping a lot. In January 2024 she started talking about a fuzzy, burning feeling in one of her nostrils and she lost a lot of weight. She became obsessed with her medication – reading the side effects, worrying about what time she was taking them and forgetting whether she had taken them or not. During this time, she visited her GP a few times and was given medication for anxiety and depression.
I had my last text from mum on 31st January 2024. Until that point we spoke and texted numerous times a day. She was very tired. On February 7th she FaceTimed me and was shouting – she thought someone was in her phone – she wouldn’t back down and told me she was going to call the police as she knew they weren’t allowed to be in her phone. We got her a private appointment with a psychiatrist. As they left for her appointment on 9th February, mum asked my sister and my dad if her parents were in the car. The psychiatrist diagnosed anxiety and depression. Things got progressively worse. Mum became obsessed with the news and upset about stories of children on there. Then my dad found her in the hall at night looking for the toilet (they have an en-suite). She got confused about where she was currently living and at one point thought she was in the Caribbean and another time Hong Kong.
I drove down to see her and stayed from Tuesday 13th February until the Saturday morning. She could still draw a clock face, put the hands to the correct positions of time, count back from 100 in 7s, spell ‘world’ backwards and work out the change she would have left from £1 if she spent 75 pence. However, she would sit holding a tablet in her hand that wasn’t there, she saw the pictures sliding down the wall and she watched us cry as if she was looking right through us – this was definitely not my mum. She started humming a lot, was smacking her lips at points and had jerking movements at rest. She started walking with a shuffling gait and I had to bathe her. I cuddled her and put her to bed on the Friday night, and left early on the morning of Saturday 17th February as I had to get back for my daughter who is unwell. Before I left, Mum told me I was the most amazing person in her life. Those were her last words to me. It will always be my biggest regret that I had to leave.
On February 19th, my dad and sister took her to the hospital. She had an MRI, was catheterised and had a lumbar puncture. We were told that the test were all negative apart from some shrinkage of the brain – they thought it was an auto immune encephalitis and started her on steroids, but it only worsened her symptoms. Over the next few days we didn’t have any idea what we were dealing with, and neither did the Doctors. My sister sent me information on CJD and said ‘I think this is what mum’s got’, I texted back saying ‘no, that’s too rare’.
I spoke to the neurologist on FaceTime – my dad handed the phone to him and said ‘my daughter is a nurse, can you speak to her?’. I asked if they were checking for CJD and he said they were. He asked me if I was a neurology nurse and I told him that I wasn’t, and that it was my sister who had suspected CJD first. Mum was sitting up in bed at that time, being fed by family. She saw her mum and dad – and at one time all of her family – at the end of the bed.
I drove from Leuchars in Fife back to Nottingham, my husband looking after our daughter. By the time I got there, my mum was mute, her eyes were open but not tracking, she had a feeding tube and her left arm was held in a flexed position. She didn’t respond to any voice or noise, but would startle if you cast a shadow over her.
More tests were ordered: another MRI, an EEG, and an RT-QuIC. On February 28th, we got the call from the CJD unit in Edinburgh, arranging an appointment via Zoom for the following morning. We were given a list of information to gather; her family history in terms of cause and age at death, her own medical history, any operations including dates and hospitals, where she had lived throughout her life and her occupational history. In the zoom meeting on February 29th we all sat quietly as we were told the diagnosis of CJD was confirmed, though the RT-quIC results were not back yet, they felt sure of the diagnosis. Later that day, the hospital removed my mum’s feeding tube.
March 1st was my mum’s 78th birthday and my parents’ 55th wedding anniversary. We spent it by her side in the hospital, now moved to a private room where we had unlimited access. We opted not to bring her home or to get her into a hospice as there weren’t any close enough, and we didn’t want her to have the stress of a move as we were told she was nearing the end of her life. My niece brought in balloons and banners and we sang ‘Happy Birthday’ to her. We talked, and laughed, and cried – always including her even though we weren’t sure if she could hear anything.
My eldest daughter and I didn’t leave the hospital, my daughter slept on the folding bed next to her gran holding her hand. I slept (on and off) in the chair next to her. Two of my nieces stayed when they were able. My sister brought my dad in every single day. The rest of the family tried to see her as much as possible without overcrowding the small side room. We played music, talked to her, and told her that we loved her so much and that it was ok to just let go – that was hard.
On March 5th, the RT-QuIC test confirmed CJD. I cannot get my head around how quickly CJD can progress — within two months, my mum had gone from being herself to being a shell of who she once was. Nothing can prepare you for the devastation that CJD causes, it progresses relentlessly and you lose more of the person you love each and every day. CJD affects one in a million – Mum was always our one in a million. My mum passed away on 6th March 2024, she was peaceful. Our hearts were broken.
Beth at CJD support has been really helpful when I got a little lost and needed to speak to someone who understood what we had been through on our CJD journey. I thank her for her kindness.
Dr McDermot at the national CJD unit in Edinburgh was also great and answered any questions we had, including the ones that I felt stupid asking as I couldn’t see the wood for the trees.
The London Prion clinic were most helpful in conducting the genetic testing and communicated with my sister about this. We are thankful the genetic testing was negative.
The team at the QMC hospital in Nottingham were superb and we cannot thank them enough for the care and compassion they demonstrated, not only to my mum but also the wider family.
The CJD Support Network would like to thank Karen for sharing his story, which we know so many people reading this will relate to. If you would like to share your story on our website or in our newsletter, please don’t hesitate to contact us. If you require further support, our helpline (0800 774 7317) is open between 8am and 6pm, Tuesdays and Fridays.