Sometimes, in our line of work, we lose sight of why we do what we do and who we really do it for. We often talk about helping patients, but we use the word patient so frequently that it risks just becoming another word. It’s like using the word “love.” You use it too often, and it loses its meaning; you become disassociated with the word when someone uses it. Sometimes we need to take a step back and remember patients are people. They are mothers, fathers, sisters, brothers, sons, daughters, aunties, uncles, and friends. What we do impacts actual people, real, living, breathing people with lives to live. We can’t just look at it as one person either; it is how their illness also impacts the people around them. So, essentially, patients cannot be deemed as just one person; it is the person with the illness and the people impacted by the person having the illness. How do I know this? I am one of those people affected by the illness of another – my mother – and here is my story.
Growing up, I had a happy childhood. My parents owned several businesses and a farm, so they worked quite a bit. I didn’t mind though, as I got to go on many adventures abroad when they had some downtime. My mum was as sharp as a blade. She missed nothing, and I mean nothing. She could tell exactly what vehicle was traveling down the road just by listening to it, and this was before we could even hear it coming. She knew all my antics – she knew everything! I started to notice something wasn’t quite right when I started to get away with more things. I would do the usual forging of a signature on a note sent home from school when I hadn’t done my homework, and she didn’t even notice. Previously, when I had pulled the usual “my tummy is too sore to go to school” trick, it always got met with the “do you think I came up the river in a bubble” response, and I was dragged to school. However, I was starting to get away with this more and more.
Over the next couple of years, things escalated. I would find knives and forks in the washing machine, plates in the fridge, dirty clothes put away again, things that were very unusual for her to do. Then things took a turn for the worse. One day, I was being a typical teen in my room, minding my own business and reading a magazine. My dad entered the room shouting at me, “go apologise to your mother now.” I had no idea what he was talking about. I got sent up to the living room, where my mum was crying loudly on the sofa. She was saying that I had called her nasty names and was being rude to her. I was dumbfounded, I hadn’t left my room since breakfast. Occurrences like this became more and more frequent, and no one believed me when I told them I was innocent; I was, after all, a typical teenager at the time and was known to have the odd tiff or two. One day, it happened again. Only this time, my dad was there to witness that I had not said a thing to my mum. He finally believed me, and at this point, he realised there really was something wrong.
Once the charity dive was over, I was into my university life. I had planned to go to Northumbria University for my studies, but as my sister and brother had moved out, I decided to stay near mum to help. I went to the University of Ulster and travelled up and down every day. It was a two-and-a-half-hour round trip, which did get tiring at times. At this time, I did notice a severe decline in my mum. My dad couldn’t cope. I would come home from university, and as soon as I got into the house, my dad would leave without saying a word. He would stay away for hours leaving me alone with mum. It was heartbreaking as she would cry out for him constantly and would run out of the house after him. She started to become violent towards me and would lash out. She became paranoid. She would see things that weren’t there. She had moments where she completely forgot who I was. I was a stranger in her house and had no right to be there.
I tried talking to my dad about it, but he would close off. I spoke to my sister and my brother, who didn’t know what to do. At this point, I decided to take over my mum’s care completely. I phoned her doctors and social worker, who, to be quite honest, were of minimal help at this point as mum was not old enough to go to the specialist Dementia unit. We needed to access urgent care services. Mum was uncontrollable, and we were worried for her safety. I ended up deciding to bring mum to the hospital to be admitted to an emergency psychiatric unit. This completely threw her. She refused to eat as she thought the nurses were trying to kill her, so I had to leave work every lunchtime to feed her. She became more violent and ended up having to be sectioned. This was agonising for us. We were at a loss, what could we do? Surely there is some sort of medication to help.
One day I came home from school to find my mum crying in her room with dad by her side. I went down to see what was wrong. “Your mum has been diagnosed with depression,” said my dad, but to me, this made no sense. Can depression really cause all of the symptoms she has? I queried the diagnosis with my dad but ended up accepting what had been said. We tried to live as normal as possible for the next year, but things just seemed to get worse. Eventually, my dad took my mum back to the doctors, and after a long road, she was finally diagnosed with dementia. I honestly can’t remember who told me the news; that’s how insignificant it was to me at the time. I just simply didn’t believe it. I wouldn’t accept it. I just couldn’t. In my eyes, my mum was too young, and dementia was something older people got. No, it couldn’t be dementia, as mum was only 55; it must be something else. I refused to believe it, and over the next few months, I acted like nothing had changed.
As much as I tried to ignore it, and believe me, I tried very hard. One day it hit me, smack, bang in the face. I was at a friend’s house and had asked my mum to come to collect me; we were walking back from the shop to her house when we saw mum driving down the road. There was a lorry coming in the opposite direction, and before I knew it, mum had driven straight across the road in front of it. Breaks screeched. Horns blew. Panic set in. I opened my eyes to find she had narrowly missed the accident. Phew, she was ok... but I wasn’t. This was the moment I knew everything was going to change forever.
I already knew there was no cure for dementia, but I lived in hope. We came together as a family; my dad, sister, brother, and I started to research what we could do to see if there were any therapies out there that could help. We tried a lot of different alternative therapies along with trialling numerous different medications the doctor had prescribed. For a while, mum was doing well, the progress of the disease seemed to have slowed down. We began to breathe easier for a while.
In the meantime, I had turned 17 and passed my driving test. I was now able to drive myself and my mum everywhere that was needed. This was a big help as mum was unable to drive anymore. School was difficult. When the news got out about my mum’s diagnosis, I was now viewed as the girl whose mother was sick. Those looks of pity started to creep in. I hated it. I ignored it for a while but then realised the looks and whispers were because everyone had no idea what dementia was or how it impacts people. I decided I needed to make a difference and set out on my journey of raising awareness and money for the Alzheimer’s Society. I focused a lot of my time on the organisation of a Skydive and Pub Quiz. I gathered friends to do the dive with me, and together, we raised over £4,000. It felt good, as if I was helping in a way.
We met up with mum’s team of doctors and consultants, who were brilliant. They thoroughly explained the situation to us and laid out multiple options. They were going through a process of experimenting with different combinations of medications to try and help calm mum down, which would hopefully slow the progress of the dementia again. We were warned, though; things looked bleak; they told us that mum would be lucky to be with us in a year’s time. My stomach dropped. I was taken right back to the moment mum almost got hit by that Lorry. I couldn’t breathe.
I spent every day by my mum’s side in the unit. I would go during lunch and feed her when I needed to, then I would visit after work again. Things did start to look positive, and the doctors were getting somewhere with the combinations of medications. I would play mum’s favourite CDs, and we would sing and dance. Things were looking a little more positive. Then the next blow came. We were told that mum was well enough to leave the unit, but we couldn’t bring her home as there wouldn’t be a care package good enough to look after her. We needed to find her a care home. What? A care home? But she’s too young for a care home! This was something that tore me up inside. How could I place my own mum in a care home? Surely, I could look after her? I could maybe quit work and look after her full-time. I seriously thought about it, and I enquired about funding for it. It was impossible as it simply didn’t pay enough and wouldn’t pay the bills. I needed to work.
Over the next few weeks, we painstakingly looked at homes until we found a suitable one. Mum was moved over, and we came to terms with life having mum in a care home. Again, I visited every day as I was afraid if I didn’t, I would be letting her down. Things seemed good; she adapted well to the care home, and the team was amazing. They knew what mum needed and went out of their way to help.
Amongst all the chaos of the past year, I had managed to slip away on holiday with my friends and boyfriend. On our holiday, he proposed. I was overjoyed with happiness. We had always talked about getting married abroad. We came home from a holiday full of joy and started to plan a wedding abroad. However, mum kept getting worse, so the wedding got placed on the back burner. She was slipping back and progressively going downhill. Worry started to set in. I realised mum would not make it abroad, but I didn’t want to give up on our dream. I talked it through with my sister, and she suggested we do a secret wedding for just the immediate family. I thought this was the best option. We could have the wedding abroad when we were ready. Time was of the essence. I wanted my mum to see her little girl walk down the aisle and know who she was. I wanted her to smile as she saw me, understand what was happening, and be happy. I needed to work fast before it was too late, so over the next 6 weeks, I planned the wedding. We got married with 9 of our closest family members, including my mum. It was very emotional but beautiful. Although mum was no longer able to successfully communicate, she smiled. A smile I hadn’t seen in a while. I knew she was happy. Very few people knew we had married, we wanted to keep that moment special and treasure that memory with mum. In fact, this article is the first time I have shared a picture from that day publicly. The only reason we got to have this moment is because the doctors had worked tirelessly to find that combination of medications that worked for mum at that time. I can’t imagine where we would have been if we did not take her to the unit.
After the wedding, mum took another downward spiral. She became paranoid that the carers in the home were after her. She would run and hide, shout and kick out towards them. She became violent again, too violent for them to handle. We needed to act. As a family, we decided to take her back to the unit where she could receive the treatment she needed. Again, she was sectioned. We felt like we were back to square one. Clutching at straws to find some medication to help her relax and return to some form of reality. Mum spent a couple of months in the unit, where they began the process of trialling different medications. Only this time, it was different; this time, we weren’t getting anywhere. Mum’s doctors and consultants came together and decided that even though she didn’t meet the age requirements for the specialist dementia facility, they were going to push to send her there anyway. She needed specialist care as all other options were exhausted. She needed fresh eyes and a fresh approach. Within a week, she was moved.
I wish I could say that this solved our problem, but it didn’t. I wish I could say that she received the best possible care as the dementia unit was well-funded and had the state-of-theart equipment to meet patient needs. However, I would just be lying to you, myself, and the memory of my mother. After a few weeks of being in the dementia unit, I knew we were in for the fight of our lives. It was a struggle to get any answers. Doctors only provided care between 9-5, Monday to Friday. Consultants only visited once a week. The rest of the time, the nurses picked up the pieces. The nurses were amazing. They did their best, given the circumstances. The unit was overcrowded and understaffed. Their equipment was old and in need of attention. I wrote numerous letters and made calls to anyone who would listen. I knew this unit desperately needed funding. It required attention before the worst happened. I was met with “there is no funding” every time I got a response. No funding? How? Dementia impacts a large portion of the population; how can it have no funding?
Again, feeling like I needed to do something, I decided to find some funding myself. I set out on a campaign to raise awareness of the issues I saw and how things needed to change. I gathered some close family and friends, and we decided to do our own marathon: run from my house to the dementia unit, the route I took every day to see my mum. We managed to raise £6,000, which went towards getting a state-of-the-art interactive table to help with the cognitive therapy of Dementia patients. We also bought some much-needed wheelchairs, and as it was around Christmas time, we purchased a small gift for every patient within the unit. Not only that but with the awareness side of the campaign, we were able to aid in securing some additional funding for some extra nurses within the unit. Score! Mum didn’t understand what was happening, she hardly knew me, but I can only hope she was proud.
After spending more than 2 long years in the dementia unit, mum was finally well enough to be moved back to the care home. We were so relieved. The care home had a better atmosphere; there were no more visiting hours, and we could come and go as we pleased, which was amazing. At this point, I had fallen pregnant with my first child. I was so excited. I never thought I would get to this point, having a baby that my mum would get to meet. Remember that we were told mum wouldn’t have made it this long. She was a true fighter; not only did she see me walk down the aisle, but she would get to meet her grandchild. Being pregnant was difficult, mum still had that violent streak in her. We just had to watch for the signs. She would still lash out at me, and being heavily pregnant, I needed to be careful not to be in her path when she was like this. One day, when I visited her. I took her off to a quiet corner where we could sit away from all the noise. She seemed calm, and then the next minute, she reached out and grabbed me by the throat. She was frail, so it was easy to get her off me. I was just in so much shock, but I knew this was not her; it was the disease.
The home was fabulous; care was brilliant. Eventually, I gave birth to a baby girl and brought her in to see mum; it was such a precious moment, one I thought I would never have. Things were going so well… then… COVID hit. Bam, lockdown. No more visits. We were heartbroken. We went from visiting mum every day to having no visits at all. It was awful; we had to phone to see how she was doing constantly, but it was difficult to get through as everyone was phoning too.
After the first lockdown was lifted, we still couldn’t visit. We were, however, allowed to stand outside her bedroom window and peer in. I think this was worse. We could see her, but we couldn’t touch her. She couldn’t talk at all anymore; she had no idea we were even there. This continued for over a year until mum received her COVID vaccinations. She was part of the first group to get them in Northern Ireland. After this, we were granted one visit per week. We were told we could take it in turns, one person at a time per week. We had to go for training on how to dress in the PPE and the rules around the visit. I was so happy; I was finally going to get in to see my mum after so long. My dad and sister went first, as I was working in the office and needed to isolate myself before my visit. I began my isolation period; in 2 weeks, I would get to go in and see my mum. Things seemed to be on the up again.
While sleeping peacefully in bed one night, I heard my phone ring. I woke up and instantly had a horrible feeling in my stomach as I looked at the name on the screen. It was the home. I quickly answered to be met with a voice telling me, “I am so sorry to wake you, but it is your mum. She isn’t doing very well at all, and I think you all need to come in”. I broke down; I asked what was wrong. She had contracted a nasty infection a couple of days previously that had quickly turned into sepsis. We knew about the infection, but mum had had so many infections over the past few years that we weren’t concerned at the time. I was concerned now. I contacted my dad, sister, and brother to break the news. We all jumped in our cars and drove straight to the home. I never thought this would be the way I would be allowed in to see mum. I knew this meant it was the end. The end. So final. We all dressed in our PPE and went in to see her. It was strange as we were told not to touch her and to keep our distance. I wish I could tell you that I was a rule follower, however, I said sod it, this is my mum. If this is the last hours she will spend with me on this earth, I will hug her. I am going to comfort her. Kiss her head. Lean in close to tell her I love her. She is my mum. She comforted me as a child, and it was my time to be there for her.
This was the most difficult time of my life. Watching the person who raised you, looked after you, loved you, lose the battle of life. My sister and I held her hand and kissed her head as she took her final breath. A breath I will never forget as long as I live. I had held it together for so long, I was brave for her, I was her soldier through this war with dementia. My job was done, and I fell to the floor. I cried uncontrollably. She was gone. My world shattered.
No one can ever prepare you for the death of a parent. And I know what you are thinking: I should have expected it and been more prepared. Well, I wasn’t. Yes, I had watched a tiny piece of my mum disappear every day for the past 12 years. And I know that she was a shell of herself at that point. She was still my mum, and, in my eyes, I was still her child. I just wanted my mummy.
Three years on, and I am writing this article. What will it achieve? Who knows. All I know is that we need to spread the word, dementia is a real problem. It doesn’t just impact the elderly, look at mum, she was only 55 when she was diagnosed. This disease is cruel. It takes and it takes and takes, until there is nothing left. The impact is immense, not only on the patient, but on all of those around them. I hope by writing this article, you get extra meaning to the word “patient”, they are real, living, breathing people, surrounded by people who love them dearly. I know my journey was not the smoothest, but I have hope for the future. I can see the progress that has been made since mum’s diagnosis and hope that we continue to see clinical trials arise with some new groundbreaking medications. If nothing else, I hope by reading this article, you hug your loved ones a little tighter, as you never know what the future holds. Today is a gift; tomorrow is a mystery.
About the author
Ruth Fowler is the Marketing Manager for RxSource. She joined the company 3 years ago and has over 10 years of experience within the industry.
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