This is not our usual type of Brain Domain article, but personal stories are important reminders of why neuroscience research is so crucial. Here are some touching thoughts from a friend of someone with Dementia.
Dementia: Please no!
By Andy Stickland
As I look upon my frail friend Bob, lying there in his chair, blanket all wrapped around him as the nurse says “he feels the cold more these days”, I realise I have never been in his room before, despite my visits over the years. I inquired about his routine to another nurse and she said “Robert does not sit in the front room too much these days and generally comes down just for meals.” The last time Bob saw me, although he wouldn’t remember this, he was happily sitting downstairs with others, displaying his usual smile and lighting up the room, actively enjoying the music playing in the background.
Bob has not known who I am, or anyone for that matter, for all the years that I have (too infrequently) called in at his Care Home, set amidst the Cornish Countryside in the Looe valley. Although not as aware or as attentive, compared to my last visit, Bob did seem ‘happy’, to coin a somewhat overused and oversimplified term (yet, this is the only way I have been able to express the situation to others and myself). He may seem happy in his world, whatever happy is, but it’s those who knew him, liked him, loved him, that suffer: from the daughter who he knows no more, to his former colleagues who used to call on the telephone, when he lived in town. Bob did not know them, and so had little he could say, so they stopped calling. Memories are what make us, are they not.
We are often reminded of the value of face-to-face communication. Dear old Bob is nearly 90 years old, and uses a lot of non-verbal communication. However, over recent years, I normally have no idea what on earth he is trying to communicate. His fingers move around while he explains in depth a concept that seems so clear to him but which I struggle to understand. I play along in a desire to not distress him, saying “yes” or “oh I see”. Some sentences click into place and I strain to find some meaning in the riddles Bob speaks, that seem to make sense to him. I remember the gist of some of what he says. Out of the frail man in front of me comes the lovely soothing voice that I first knew. I met Bob in the 80s, when I was a young trainee farmer, approaching 21. He was then in his 50’s (as I am now!), and was the Estate Manager. Today, the voice, nearly as powerful, and the eyes, nearly as bright and welcoming, relay such statements: “some people are loved a lot by family but too much sometimes” – Bob smiles as he speaks – “as they are not always nice”, and “our parents sometimes warn us about some people that we may go here or there with but are not really good for us”, and “we shall grow old together, some mates (chaps) are good some not so good” – another grin – “and best not to get too close to those who are not good for us!”.
I often tell Bob of what a great blessing he was to many people, and tell him of things he did, and he responds with “Oh did I”? I do not say, “Oh, do you not remember?” as I know he does not, and I do not want to worry him. What pain he may feel in being told things of which he has no recollection, by people who he no longer knows? The man of intellect, of reasoning, and with memories, is all gone. Does Bob know of the present distress of those who knew him and loved him? Blissfully, it seems not, as all his memories are gone. Five years ago he at least had his long-term memory, but not today.
I dare to say, why then, what is the point? Some are not ‘happy’ like Bob, but instead fearful, angry and confused, with their loved ones saying “this is not what they were like”, despairing at the stranger in front of them. Oh what pain beholds a husband, a wife, a father, a mother, a sibling, or a dear friend, who even if they are ‘happy’ does not know who you are to them, or who they used to be.
I gaze around the room and see a picture of Bob standing in a field overlooking Lee Bay. This is the beach on the Lee Abbey estate, in North Devon, at end of Valley of Rocks near Lynton, and he, as Estate Manager, had come to see how the haymaking was coming on. The old Massey (not so old then though) pulling a trailer laden with bales was the one I think I used a couple of years later for scraping the yard after I had milked the cows. So sad that he does not now have any memories at all of these happy days. Many of us do and we remember the giant of a man with a big heart and lovely smile who blessed so many of us along our journeys in life. I take his hand and say a short prayer of thanks to a higher power.
I do so, so hope, that the brain-power of some gifted souls (maybe even my own flesh and blood) can come up with a cure to stop this whole horrid state of affairs. We have the memories but sadly they do not.
I go to leave and I hear the words “toodle ooh”, the very words he so often uses when one leaves, said in his usual confident and caring way, and I take some comfort.
Of course, the experience of dementia is not the same for everyone, or every family. Click here to read a daughter’s personal account of her father’s dementia , written with honesty, charm and a welcome pinch of humour.
What is dementia, and how can you get help? Click here to find out more.
Edited by Rachael