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Life with Alzheimer’s

Sep 29, 2021

World Alzheimer's Month is an international campaign dedicated to raising awareness, educating others, and highlighting the issues faced by people living with dementia and their loved ones. But as someone whose family has been impacted by dementia, I understand the importance of continuing such conversations outside of the awareness month. This is because education is the most powerful tool families facing an Alzheimer's diagnosis can be given.

To give you an insight into my grandad’s battle with Alzheimer’s, I have asked my mum to share her thoughts. Not only did she have the heart-wrenching job of caring for her dad who lived 250 miles away from us, all whilst continuing to care for me full time, she also had to face life with a loved one in a care home during lockdown. Something I’m sure many of our users can relate to!

Alzheimer’s is a devastatingly cruel disease for both the person living with it and their family. Watching someone you love so much, slowly deteriorate from an independent, fun-loving, larger than life character, to a frightened lost soul, who doesn’t recognize or understand the world around them. Well to say it’s devastating would be an understatement. Knowing you cannot take it away is heartbreaking, but what made it even more difficult for our family was the distance between us.

My dad was officially diagnosed in August 2013. It took some persuasion, as he didn’t think there was anything wrong. But I had noticed more than just a few forgetful moments, such as continuously repeating questions and not remembering a conversation we’d had minutes prior. Despite how hard the diagnosis was to accept, it came with the opportunity to get dad on a specific medication regime which slowed the progression down. I tried not to dwell on his diagnosis and instead focused on cherishing every moment; but it was always there, like a time bomb waiting to go off.

By 2017, the signs of progression were evident. Dad was still living independently but was unable to manage his bills, letters, and finances. So, I had all his mail redirected to me, that way I could take over everything as I had also had Power Of Attorney. Thankfully we had sorted POA several years prior, which I would advise anyone in the same position to organise as soon as possible! Dad was also no longer safe to drive, not just for his sake but for other people. We learnt to always go along with his conversations and never correct him, that’s the worst thing to do as it causes more stress and confusion. Dad couldn’t adapt or settle visiting others, including me which was very sad as he loved visiting us in Newcastle.

Someone once said to me that Alzheimer’s is like a bookshelf. The books on the top shelf are the most recent memories and first to go, then as you go down shelf by shelf the memories gradually disappear with no warning. Dad could recall things from his childhood (the bottom shelf) with the utmost precision, yet I knew the day would come where he would no longer know my name, along with all the other memories we have shared together.

Fast forward to 2019, many friends, family, places, and memories were forgotten. By this time, we had every safety device, camera, alarm, and gadget inside and outside of Dad’s house. Other services such as meals on wheels, carers, and medication packs were also implemented in a bid to keep him as safe and independent as possible. We were trying so hard to keep him living at home because that is what he wanted. But it was becoming increasingly harder. He was scared, frightened, and agitated, as hallucinations had begun to take hold. He was regularly leaving his house at all hours because the hallucinations made dad believe there were people living in his garden who were trying to attack him. On one occasion I could see him crawling up his driveway against the fence, trying to get away in the night - forcing me once again to put my trust in other people or the police to find him and bring him home.

The breaking point eventually came in September when I was on holiday. I spent the entire week on the phone to the police, as his escapes suddenly became frequent. Moments after stepping off the Eurostar, I decided to drive straight to Cheltenham as dad was once again missing. Various social services, doctors, and medical professionals were already involved in dad’s care; however, nobody could help me because he had only been reassessed three weeks prior where they deemed him safe to continue living at home. Except things had dramatically changed in this time. Sadly, I learnt that if residential care was needed, we would have to do our own research and find an appropriate care home. Why? Because dad had the funds in his bank. I tried explaining to social services that I didn’t live locally and the situation was urgent, yet all they could do was send hundreds of brochures. Except if he was unable to fund everything himself, they could arrange everything in a matter of hours! How is that fair?

Thankfully one social worker recognised the safeguarding issue and without giving any direct recommendations, indirectly helped me source a suitable home with a vacant space for respite care. I remember sitting outside the home, crying in my car. I couldn’t believe what I was doing, yet knew I had no alternative. Shortly after my visit, I went to collect dad and he moved in that same night. I was consumed with guilt, as I felt like I was failing him by not fulfilling his wishes. But at the same time, I felt such relief knowing he was safe.

Better still, he was in a fantastic place where his needs were met, he was happy and eventually well settled. I visited him as much as possible and we laughed so much. Although the most rewarding thing was, when he saw me, he knew who I was - what more could I ask for?

Little did I know the world would soon change forever due to a pandemic no one could have predicted. I sadly lost my dad in December 2020 to Covid-19. It’s been said that for someone with dementia, Covid is a blessing. Covid could never be a blessing, but then neither is Alzheimer’s. It is such a cruel disease, especially in the final stages and one thing for certain, Dad would never have wanted to live like that.