I have just been to see the mother of a very old friend of mine. She is 95. A year ago, when I went to see her, she had no idea who I was but she was very happy to go out to lunch with me, work her way though a plate of fish and chips and a glass of white wine and watch the goings on in the pub with interest. Now she sits in a chair and stares, vacantly. Even though I sit with her and talk to her, I am not sure that she even registers my presence. This is a woman who, at 75, was running a very successful business, travelling widely, actively pursing half a dozen hobbies and interests. At 85 she no longer actually ran the business but she remained actively involved and continued to pursue her hobbies which included keeping tabs on a growing horde of grandchildren.
We know that Alzheimer’s is a cruel condition which gradually pares away not only its victim’s mental capacity but their personality so that they become a husk of their former self, appearing to exist in as much as they exist at all, in a more or less confusing vacuum within their own heads. If they are lucky it is a benign vacuum in which they appear, at least, untroubled; if they are unlucky it is an angry and frustrated vacuum which is agonising to watch as they struggle vainly to express that frustration and confusion.
And how do we cope with the situation? On the whole, not very well. We are as confused as the Alzheimer’s sufferers are themselves. We do not know how to reach out to them, how to help them – or how to help ourselves. So, could we do better? Maggie La Tourelle thinks that we could.
Maggie journeyed with her 90-year-old mother through the last three years of her Alzheimer’s and far from it being a distressing or depressing journey it proved to be an immensely uplifting and rewarding one. It helped that Maggie was a holistic therapist so she was already both prepared and trained to listen and tune in to her mother in a way that many of us might not be but, as she says, learning to listen is not that hard.
She suggests that although those with late stage Alzheimer’s lose short term memory and their grasp on time (so that the past and the present often elide), they do not lose long term memory nor the ability to think or to communicate. But to make communication work, we have to get ourselves into their mind set and not attempt to impose our own rational thoughts and reactions upon them. (I remember this so clearly with my own mother, always a keen sports woman. In the last year of her life, if she watched tennis on the television she immediately started to ask what time we were due on court and whether I had collected her tennis skirt from the cleaners, even though, by that time she was totally bed ridden. But she was perfectly happy when I told her that it was fine, we weren’t playing until this evening – and yes I had her skirt all ready for her.)
Maggie also suggests that all too often those with Alzheimer’s find it distressing that they are unable to communicate because no one is able to get onto their wavelength. Maggie’s mother often said to her ‘You talk to me. No one else talks to me.’ This, of course, was not strictly true as lots of people, talked to her. But no one else listened to what she was really saying and replied in a way that made sense to her.
Communication is also made more difficult (although really it should be made easier) by the fact that as Alzheimer’s progresses, the area of the brain that deals with empathy becomes more active while social inhibitions melt away. So the person with advanced Alzheimer’s becomes more sensitive to the feelings, words and expressions of others and will express their own feelings and reactions demonstratively and totally frankly. This can be unnerving for those near to them who do not know how to cope with such frankness. The situation can be further complicated as the person with Alzheimer’s may confuse words so that what they are saying is not always very clear and is all too easy to misinterpret.
But, if you are prepared to open yourself to other ways of being and thinking, to focus entirely on the person with Alzheimer’s, to try to live in their world and to walk with them through their journey to the end of their life and beyond, not just they, but you will benefit enormously.
And this does not require you to care for them 24/7. Maggie’s mother spent her last years in a care home in Scotland while Maggie lived in London. But she visited regularly and when she did, her visits were totally focused on her mother and the journey they were making together.
Maggie has charted this journey honestly and in some detail in The Gift of Alzheimer’s. And not just the journey but the healing of what had been very fractured relationships not only between her and her mother but between her parents. It makes fascinating and very encouraging reading. In practical terms it also sets out some guidelines for how the rest of us might try to cope better if we find ourselves in a similar situation. Several sections at the end of the book offer some scientific and research background to what we know about Alzheimer’s and how it affects the brain and some very practical pointers as to how to connect with people suffering from the condition. Really simple stuff such as:
- Sit at the same level as them – not leaning down over them
- Look at them – really look into their eyes
- If you are feeling compassion, allow yourself to do so – let your heart open
- If you love them and care for them deeply, tell them so
- Give them 100% of your attention
- Smile and squeeze their hand for whatever is appropriate – so that they feel your touch and that you care.
- and more….
The Gift of Alzheimer’s is absolutely not a depressing book – nor is a book that you should only read if you have a friend or family member with Alzheimer’s – although if you do, then you certainly should read it!!! It is a book about love and communication – and the many and varied ways that communication can happen and love can be given and received. Something that all too few of us are all that skilled at doing…….
The Gift of Alzheimer’s – New insights into the potential of Alzheimer’s and its care – by Maggie La Tourelle is published by Watkins. £10.99 from all good bookshops or from Amazon.