We first noticed something was wrong with my mum when I was 15 years old. She started having a pain in her left hand and very slowly over the course of the next year or so she started to lose strength in her hand. This affected my mum greatly as she loved driving and she was unable to move the gear stick or disengage/engage the handbrake anymore.
After several months of tests with the doctors trying to determine what was going on, my mum was given the news which changed everything, it was MND.
I still remember the exact moment when I was informed of this. I was working my part time job at Tesco doing an extra shift covering on the freezer section. My sister also worked in Tesco and I noticed her being consoled by another staff member, I went over to see what was wrong. The news completely floored me. I had to go sit down in the canteen for 15 minutes just to process this information, I just couldn’t believe it. Leaving work that day and going home to see my mum sitting in tears was heart-breaking. She had been given a diagnosis of 2 – 4 years to live. She was devastated and she was saying “I’ll never get to see my kids get married or see my grandchildren”. My mum had always been a positive person so to see her like this was very hard for all of us, but we rallied around her and made sure we would look out for her.
When I was 16 my mum was still reasonably mobile, able to still do a lot of things for herself so I only needed to assist when truly necessary. Things started to change when I was 17. My mum was still working as a secretary at Bowhouse Primary School. This was handy for myself as I was learning to drive at the time so I would drive from the house, take her to the school, park the car, walk my mum into the school and then walk up to the high school. This worked very well for us and it was about this time we began to become closer and she could rely on me for help. There was an instance when my mum’s legs gave way in the playground during lunch break in front of all the kids, she was embarrassed but luckily I didn’t panic and gently lifted her back to her feet and off we went to the car. A patient attitude goes along way with making things easier. There is no point in getting angry as it’s not the person’s fault. This was the only instance I can remember this happening and we would joke about it for years to come.
Once finishing school I moved on to college to study Architectural Technology. By this time my sister had moved out as she needed her own space, as she was in the police and was working shifts. My dad was also still working shifts so this put more pressure on me.
Some days were especially difficult as my dad was working day shift. I would have to drop my mum off at the school, drive up to the college, attend my classes, drive back and pick up mum, take her home, give her lunch and get back up to the college for 1pm for afternoon classes. Sometimes this was nigh on impossible. When it came to times like this I would not go back to the college in the afternoon and instead spend the afternoon with my mum. We would either watch films as I had an extensive collection or we would go shopping. In my head my justification for missing my classes was “I would rather see that my mum is happy”. I will always remember these days with great fondness. I don’t regret missing parts of my education as we spent some great times together and this is what contributed to us becoming very close.
Eventually my dad retired and he took over the majority of my mum’s care. During this time I gained full time employment as an Architectural Technician. Luckily my dad was not alone when it came to caring for my mum. My aunt was always there, my mum’s friends all helped whether it was taking her out shopping on a Saturday or just popping in to see her. Every little thing counts and makes a difference, no matter how small the gesture you will be surprised how positive an impact it can have.
My dad and I had worked a good system at night where my dad would bath my mum and then when he was bringing her out of the bath I would take over and manoeuvre her over to the toilet and I would get her dressed and take her back through to the living room and get her comfy. She wouldn’t need to ask for her dressing gown to be sorted or her pyjama top to be pulled down at the back as there was a good understanding between us both. Even when my mum was going to bed it was myself who would do the majority of the movement into the bed, probably because my mum felt very comfortable with me and trusted how I would move her. We never had a hoist in the house so all movement was done manually, luckily mum and I found really good techniques that weren’t too strenuous on me or expected too much of her. Even as my mum’s condition deteriorated over the years we simply adjusted the way things were done to benefit her. Not everyone had the same patience with this as I did, my dad in particular struggled to cope with a lot of this but given the circumstances I can’t blame him. He was watching his wife of 40 odd years deteriorate and he was more just a carer than a husband now. This is where support from family members and friends is crucial as having a number of people who can come and help with various things no matter how small they seem can be of great benefit to full-time carers.
There were instances of me getting frustrated with a situation and snapping at my mum, this would usually result in my mum in tears but I was always very apologetic. When you are constantly being a carer some frustrations do build but luckily my mum knew these would be fleeting moments from me and it would only ever be a small outburst, nothing more.
MND Scotland were very helpful and helped with the acquisition of equipment which would help my mum. She was given equipment so that she could operate a laptop, control the TV and call people on the phone. This was a game changer and gave her more freedom, although she needed 24-hour care. With this she was able to send me e-mails when I was at work. This was good for me as I often worried about her and wanted to know she was ok. If I hadn’t received an e-mail from her by lunchtime that day I would phone the house to make sure she was ok. My biggest fear was “what if something has happened to dad, and mum is trapped on the toilet or still in bed??” I was always on alert in case something happened.
About 8 years ago I had moved out of the family home as my girlfriend and I had wanted to get our own home. This was upsetting for my mum but she understood why, as I had to move on with my life. This put even greater pressure on my dad but I tried to help when I could, mainly bathing on a Thursday night as my dad runs the local table tennis club and on a Sunday which was a day for me and mum to do whatever she wanted. We continued this tradition right up until the week before my mum passed.
Another tradition for us was going on holiday once or twice a year. It started because mum had always wanted to go to Dorset and I just thought ‘why not!’ She was great on the journey, we stopped a couple of times but managed to do the whole drive in 9 hours! Although the rooms are accessible in a Premier Inn, they did not have the adjustable bed and other equipment, but we managed to get my mum comfy with many pillows! We went down for three nights and had a fantastic time just the two of us. My girlfriend (now wife) was very supportive and understanding with this. Our trips have been varied from Dorset (3 times), Manchester, Chester, Stoke, Oban (twice) and Lundin Links as a family holiday with my dad, wife, 1 year old son Leo and dog Alfie.
Oban, Dorset and our final family holiday to Lundin Links were standout holidays for us. Oban in particular was ideal as the accommodation was the MND Scotland log cabin which had everything we could ever need for my mum. This was achievable as MND Scotland had given my mum a grant each year to pay for a holiday and we are very grateful for this financial help they provided.
The week before my mum passed away I received a call from my sister saying mum had been sick and seemed quite lethargic. I rushed down and was horrified by what I was seeing. My mum looked horrible, she looked like she was really struggling to breath. We called for an ambulance and she was taken to the hospital so that she could be monitored.
We found out that my mum had contracted flu. She was put on antibiotics and fluids to try and help her. On the 23rd December while we were helping my mum with the alphabet she spelled out “let me go”. This broke me in two, realising that the positive person who has fought for 17 years had given up was heart-breaking. Luckily my mum had perked up a bit and when asked if she truly meant what she said before she shook her head. Cue super positive attitude by me, hoping for the best and thinking she has turned a corner… this unfortunately was very short-lived.
The next day the doctors had ordered an X-ray of my mum’s chest and it turned out that one of her lungs had partially collapsed and the infection was in the other lung with no sign of it getting better. My mum had slipped backwards again and then when she spelled out “help me end it” I knew this time that was it. I was heartbroken, feeling lost, not knowing what to do. My wife and I gave my mum a bed bath and changed her nightie so that she would be nice, comfy and fresh, she wouldn’t have it any other way. I decided to give my mum one last positive thing. We had bought special Christmas Eve pyjamas for our son Leo, we put these on him and I took lots of pictures and went back to the hospital to show my mum. She loved seeing them and was trying to say “aaww” it was lovely to see her smile.
As we were not sure how long my mum had left, it was decided that if her condition changes the ward would phone me and my sister to let us know. At 11:00pm that night the phone call came. I rushed back to the hospital. When we were in the room, I jokingly said “I bet she is going to wait until after midnight so we can wish her a Merry Christmas” this did get a laugh and I did get to kiss my mum on the forehead at midnight to wish her a Merry Christmas. We started to tell funny stories about my mum, so she would know that we were all there around her. At 00:40hrs my mum passed away. Nothing can ever prepare you for this moment, no matter how much you know it’s about to happen. Luckily my mum was not on her own and had her family by her side.
After so many years of being a carer and becoming very close friends with my mum, the lasting memory I will always have is her positivity. She never gave up. She defied the odds and lived way past her 2 – 4 years life expectancy. If it wasn’t for her, I would not be the man I am today. Even though I miss her dearly and think about her every day, I look back on all the good times we shared and the trips that we took and can honestly hold my head up high and say “I have no regrets”.
I think this is what I would like to pass on to each carer who is in a similar situation to me. Do as much as you can with your loved one. Show them that you care and show a positive attitude. Don’t look back on this time and wish you had done certain things together. Embrace the time you have and enjoy it.
Find out how MND Scotland supports carers on our Carers Hub.
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