Intro
by Lesley Moore, Learning & Development Lead, Alzheimer Scotland
My parents were just your typical hard working people who would do anything for their family. They each had 2 jobs when we were growing up, making sure me and my siblings never went without. I remember my dad having a well-earned snooze in his armchair between finishing one job and starting the next, never a complaint made. Retirement came at long last for both my mum and dad, and that’s when we started noticing some changes in mum. She was getting quite repetitive, quite forgetful, nothing too alarming initially and all things we put down to her adjusting to life after work and the new routine of ‘no routine’ often found in the initial months of retirement. We encouraged her to go to the doctor, but no concerns were established. Things just seem to get worse instead of better for mum, her behaviours were getting more and more bizarre. In the end I went to the doctor with her, and from there we got a referral to the memory clinic.
Again, no concerns were flagged up. I knew this just wasn’t the case, everything in my instinct felt there was something going on for mum, and I asked for a second opinion. This resulted in mum having a CT scan. They told us mum had a slight stroke and the changes to her behaviour were down to the stroke – off we went with medication for thinning the blood and offered what felt like a tokenistic follow up appointment in a year’s time.
pic
But in a matter of months, we were back seeing the consultant. Mum was changing so quickly before our eyes, The consultant confirmed what I had long suspected. It seems the stroke had masked what was really going on. Mum has dementia. She was 67.
Two years after our initial concerns about mum, she had a diagnosis of Alzheimer’s disease, and given medication to slow down the progression of symptoms. For a while mum was… ok. She seemed quite content even. And our worries for mum became overshadowed with our concerns for dad. Our dad had a major heart attack and died. We were broken hearted for our loss, and broken hearted for our mum. After all those years of hard work, they only got two years of retirement together. The shock of losing dad just seemed to accelerate all mum’s symptoms. She was getting lost – both literally and figuratively. And she was losing her voice too, it was like she knew how she was feeling but just couldn’t find the words to express herself anymore. Mum stopped speaking. We knew we needed some additional support.
Information is power – I strongly believe that. And that’s when I connected to Alzheimer Scotland. I attended the 6-week programme for carers, and I gained so much insight into the condition, and how to help mum in her surroundings, in her communication, and to plan for the future. I learned about Power of Attorney, and Self-Directed Support. These sessions helped me prepare for what was ahead, and the Dementia Advisors Iain and Elaine from Alzheimer Scotland were so knowledgeable, helpful and caring. Having all that knowledge turned my vulnerability into a sense of empowerment. Alzheimer Scotland helped us with digital solutions to some of our challenges – from the Purple Alert app to GPS trackers, and referred mum for a community alarm, requested a home fire safety visit, fitted a ring doorbell, a Hive system to control heating and lighting – we did all we could to safeguard mum in her own home while trying to support and maintain her independence as much as possible.
We had carers, and with Self Directed Support in place, we funded two days at Alzheimer Scotland’s local Renfrewshire day services, eventually increasing to three. The difference in mum’s mood was remarkable, it was like day and night. Attending those days was a huge focus for mum. She was at the window waiting for the bus to arrive and to see Polly, Alzheimer Scotland’s Support Worker. Mum’s mood was always lifted, heightened. She was jovial and engaged.
Then we went into lockdown. Everything changed overnight. Mum’s mental health deteriorated and her dementia symptoms progressed. It was an incredibly difficult time for us all. We were so thankful to Alzheimer Scotland when the restrictions allowed them to make home visits. I cannot underestimate how powerful and effective those visits were. As a family, we were ‘all hands on deck’ with mum’s care. But what Polly and the team did was give mum that therapeutic support, and the impact of those relatively short visits would last all day. It was lifesaving – for mum, for us all.
Things were getting harder with the caring aspect. It reached the point where we knew we had put in place all we could for mum at home, but I knew in my heart I was beat. I remember sitting in mum’s bedroom, slumped against the wall, scared to say the words. Polly was there visiting mum that day She knew I had reached the point where moving mum to a care home was now our only choice. I am so thankful for the emotional support Polly gave me, and for understanding me.
A difficult decision was made even harder against a backdrop of a pandemic and ever-changing rules and restrictions. We researched care homes online, not being able to visit what would ultimately be mum’s new home. And no words could express the immeasurable pain we endured having to leave mum at the doorstep, never to see her again for 6 months. Knowing she was in isolation for 2 weeks in a strange place without the familiar faces of her loved ones was sheer torture. Video calls just didn’t work – mum didn’t have the dexterity to hold devices, and phone calls were just as hard because she would just walk away from the handset. The joy of our big family reunion once restrictions eased was wonderful. Throughout this time, Alzheimer Scotland kept in touch with me to ask for mum and to offer any help we needed.
My sister and I were determined to do something to support Alzheimer Scotland. Little did I know that looking at their website for fundraising information would lead to a career move. They were recruiting for someone to lead on their learning and development work for staff. My experience and skills matched the role, and I joined the team in November 2021.
Living with and coping with dementia effects not only the person with the diagnosis, but the whole family too. The knowledge, information, support and kindness we received from Alzheimer Scotland gave us the strength to support our mum to the best of our ability and we’re so grateful for that. And now, I’m very proud and privileged to be part of this incredible charity and help make sure nobody faces dementia alone.