Reflection on my mum’s Alzheimer’s Years
Tribute to Colten Care who cared for her through later stages and end of life
And to FW House & Sons who made the goodbye very special
I have written on these pages before about my own mother and last month the final stage of Alzheimer’s finally ended for her after 14 years - despite a doctor friend’s long ago prognosis that once diagnosed she would live for a maximum of 3 years longer.
For reasons we cannot fathom, her will to live was stronger than the disease, but my personal theory is that she was at some level enjoying not just the comfy bed (she always loved a lie in) but much more importantly the cosseting and caring of all the many wonderful people who looked after her over the total of 6 years living in a Colten Care specialist dementia care home.
Release - and a flood of memories
Immediately after my mother drew her last breath a few short weeks ago, her face seemed to relax as though finally she had been released.
In the following days my sisters and I were flooded with beautiful words sent in texts, emails, letters and cards by family and friends from near and far. All the messages contained similar themes and words such as: “She was a such a very proper lady and the sort they don’t make any more. Always elegant and graceful as well as utterly charming.”
And during the preparations for her funeral we pored through photographs of Mum from our growing up days and before, and stirred up many more of our individual memories.
It definitely felt to me as though we had been released as well, freed to remember her again as our beautiful, capable and clever Mum of whom we were always so proud.
As must be the case for so many families when the end comes for a loved one with Alzheimer’s, able once more to remember the real person.
The challenge of Alzheimer’s
The final 14 years of Mum’s life were marked by her steady deterioration, through the inexorable stages of the cruel illness of Alzheimer’s. A far cry from the happy, fulfilled nursing sister of her times.
The evidence of short term memory loss began as it often does with repetition of the same question, and looking back on it my own insistence on replying with “Mum you just said that” reminds me of just how ignorant I was then.
As her confusion increased she learned techniques to pretend she was ok. For a while she could fool a lot of people. But eventually the pleasures she and my father had lately enjoyed like playing bridge became challenging, he grew more isolated and lonely, she more frustrated, and everything harder for us all - both to understand and to know what to do for the best. Even long after diagnosis it was also difficult to find tangible advice or support for Dad who by this time was doing everything he could independently to keep Mum safe, clean and fed, but in the process I am convinced hastening his own death.
Relative tranquility thanks to Colten Care
Eventually, thanks to Colten Care, we found Mum a really top quality specialist dementia care home: first in Winchester and then in Lymington.
Thanks to our parents’ lifelong habits of saving and thrift this was affordable. And there she was cosseted and cocooned by the most amazingly compassionate and understanding team of people you could ever hope to find. And immediately she seemed to be more relaxed, almost happy at times.
They love their residents almost as their own family, calming their confusions, helping them to feel more “normal” in their prisons in their brains.
Communicating in the moment is key
In the middle stages of Alzheimer’s the person often believes him or herself to be living back in his or her younger life. And by this time Mum was spending a lot of time in an imaginary world of her own which frequently included her own parents and other names we didn’t recognise.
In a good dementia care home the wonderful carers know how to communicate in the moment. They understand how to talk and behave as if they are right inside the imagined lives. Those lives are real to those who are living them. It can get confusing for anybody. But that ability provides reassurance and instils calm.
In fact we were fortunate that Mum was relatively easy to care for, she never became aggressive as some do with Alzheimer’s. Just occasional expletives were uttered, which rather amusingly included words she’d never allow us to say when growing up and in fact, we were surprised that she even knew some of them.
In the main and to the end she managed to remain her dignified and well mannered self.
And there were some upsides for Mum too: for example she always loved her bed. Throughout her married life Dad would have her rising way too early for her natural flow. In her final years she could lie in - her watchful carers could see she needed a little longer. And whilst physically she always remained well, gradually she became too tired to benefit from being hoisted into her chair and into the lounge. So then she would more frequently spend whole days in her peaceful airy room with her favourite music playing, visited often by the carers and tended to with great tenderness.
End of life, comforted by caring staff at Linden House
In the end our mum slipped peacefully away over a period of a few days. This was in no small way attributable to the constant skill and attention of the wonderful team of nurses and carers.
I must stress however that the staff were also ready for all eventualities including the possibility as happens in some cases, where the final stage includes physical distress.
At Mum’s funeral I thanked and want to mention again by name here: Bella, Anna, Kirsty and Chelsea, all of whom attended from Linden House, and asked them to go back and tell the rest of the wonderful team how much we appreciated every single one of them.
I believe it’s because of these people that Mum didn’t want to let go of life, rather wanted to hang on and get every last drop of it. We have rarely heard of anyone else who lived so long with Alzheimer’s.
Tribute to FW House & Sons, Lymington
Belatedly, after the funeral, I realised how little we consider the perspective of the funeral directors, given that mostly from the moment we make contact with them we're also dealing with grief and emotion.
The National Association of Funeral Directors says: "The role of a funeral director is a broad service encompassing practical organisation, support and guidance to the family and liaison with a wide range of other organisations and services to ensure the funeral is properly arranged."
But that simply does not do justice to the breadth and depth of the skills needed by a good funeral director. And in that context I'd like finally to pay tribute too to Nigel and Veronica at FW House & Sons, independent and brilliant Lymington funeral directors who are not only deeply experienced and professional but also the most compassionate and caring people one could ever hope to find, always with a way of seeing the humorous side too which is absolutely vital.
Lymington Dementia Action Group
Prompted by Dad’s suffering much later on I became a member of the then newly forming Dementia Action group here in Lymington, one of many volunteer groups around the country which tries to promote Dementia Friendly behaviour in the community as well as providing information, support and even fun, for people with dementia and their carers.
Other than my experience of and recommendations for Linden House, these are the key things I have learned
1. People with Alzheimer’s are ill. It’s just a strange kind of illness which takes place mostly inside their heads, and they are confused and frightened by all sorts of everyday things we can’t see or feel. If they’re alone they may even be lost. We should try not to turn away, everything kind we can contribute will help.
2. We shouldn’t question or challenge what the person says (especially not like me at the beginning with “mum you just said that”) – we should try and climb in there in our heads, join their story and go with their flow.
3. We should all try really hard to do that whenever we get the opportunity, anywhere, ever. It all helps that person feel a little bit better.
Thank you for reading this personal story.