How Alzheimer’s changed our lives, and why we want to change the ending for others
Alison Littleford’s husband Frank was diagnosed with Alzheimer’s disease in 2020. To coincide with the launch of our latest Connections film featuring their story and our Change The Ending campaign, Alison shares her thoughts on how Frank’s Alzheimer’s impacts their lives.
One of the saddest things about Frank’s Alzheimer’s is that while we still have each other, it means that sometimes we both feel lonely. Frank because he’s trapped in his world and me because sometimes the person I love is there, but not there.
There are still lots of good things that happen in our lives and we are lucky that we still share lots of wonderful things together. We’ve been on amazing holidays and still enjoy trips to the theatre and cinema.
With the help of a good friend, Frank has also recently been learning to play the guitar. While he often doesn’t remember what he has learnt, he gets so much enjoyment from this.
Frank was a singer in bands in the 60s who released records, performed on TV and supported The Kinks, so it’s wonderful to see him reconnect with his past in this way.
But Alzheimer’s has changed the very fabric of our lives and our relationship. It has had a huge impact on us and our family.
When Frank was first diagnosed, I imagined all the big things it would change. However, I hadn’t realised quite how much it would affect the minutiae of everyday moments, actions and activities that intertwine and make the pattern of our lives together.
When people are fit and healthy it is easy to go through days without paying attention to the small things that make life and relationships work so well. Who makes the coffee in a morning, stacks the dishwasher, decides what to have for tea, chooses the TV programmes – the list is endless.
Watching Frank struggle to cope with the things that he would never have given a second thought to before Alzheimer’s, is a slow, crushing sadness.
Frank spent most of his working life as a probation officer, a very difficult job that required him to be extremely meticulous while also showing great empathy.
So, it is hard to witness the embarrassment this proud, once independent man feels when his symptoms are exposed for others to see, such as when he forgets the names of family and friends he loves dearly.
One of the many losses, for me, for both of us, is that I’ve lost my ‘sparring partner’.
We used to discuss so many subjects – politics, social justice, religion, current affairs. We both enjoyed giving opposing points of view – Frank always playing ‘devil’s advocate’ and we would vehemently disagree with each other until one of us conceded (usually Frank!). It was such fun and so stimulating.
Alzheimer’s means that the losses are multiple and seemingly unstoppable, for both of us.
There is losing Frank, the unique individual I fell in love with. Losing our vibrant, stimulating relationship; the gentle companionship; the support we gave each other; and the subtle, unspoken, shared understanding experienced by couples who know each other so well.
And not least we are losing the plans for our retirement together, where we hoped to enjoy our free time after working so hard throughout our adult lives.
Frank is aware of changes his Alzheimer’s is causing and dreads his future. His biggest fear is getting to a point in his illness where he doesn’t recognise me, the person he loves more than anyone.
The sadness of that is truly heartbreaking, but when Frank reaches that point, hopefully it won’t hurt him as much as he thinks it will, as his awareness will be substantially diminished. The pain will be mine.
This is why Alzheimer’s Research UK’s Change The Ending campaign is so important. The animation showing how dementia robs people of their happily ever after, reflects our experience so powerfully.
It’s also why we are so honoured to have our story feature in Alzheimer’s Research UK’s latest Connections film. I’m so proud of Frank for bravely sharing his story.
We hope these films help to highlight the impact of Alzheimer’s and rally people to help Alzheimer’s Research UK’s mission to find a cure.