My husband has Alzheimer�s. In reading on Alzheimer Forums, I came across this posting by a person with AD which I think gives a good insight into the thinking of a person with this disease and is worth reading.
https://www.alzheimer.ca/forum/viewtopic.php?t=1146
Posted: Wed Nov 23, 2005 9:20 am
Contrary to popular expectations I am still a reasonably functioning 68 year old. I eat and sleep unaided, make arguably intelligent conversation, have most of my orifices unhampered by pads, bags and bibs and am still very efficient at seeing the ridiculous in the words and actions of others. (Never of myself.)
I like to believe I am free to pursue most activities though it disturbs me that even while I am composing this masterpiece Jean has builders erecting a high gate to completely secure this property we call home. Her protestations that its sole purpose is to keep the southerly gales from our front door are about as believable as my ability to memorise the latest joke sent e-mail by my Alzheimers field officer.
You need to understand that in July 2000 while inspecting the images of an MRI scan with Jean and my neurologist we were to hear this proclamation� "You have the brain of a 76 year old and it is aging rapidly!" Thus began my plunge into the fascinating world of those of us that have to continue their lives with a stigma of a dreaded and much maligned condition. I had vascular dementia and this diagnosis would forever change my life and the lives of all who I loved and cared for. The only upside I could see was that I had progressed from youngest to eldest of the family in thirty seconds.
I would be deceiving you to say that our world collapsed at the announcement of this condition. Yes, my professional life as a pharmacist ceased at once (and me only 62 years old) but the rather foolish expectations of a life of continuing leisure buoyed us both for some weeks. With the searching for knowledge about a condition completely unknown to us both came a fear of the future and an even greater fear of the unknown. Lost and stolen? Certainly. Status, position, confidence and understanding, all placed out of reach and out of sight. Gone. And no-one even suggested that it may be worth fossicking in the rubble to find the odd link that might open up a new life in which hope and satisfaction might walk again. Dementia was the complete antithesis of life and hope. So we were lead to believe.
The human spirit is a wonderful concept. The epic journeys of men like Scot and Shackleton, the unbelievable courage of Londoners during the blitz and the sparkle of life and hope in the eyes of a terminal cancer patient, all of these and so many more instances must declare that hope and life are never lost. And so it proved to be for Jean and me.
There is a wonderful poem by A.A. Milne in which Christopher Robin asks passers by what they were going to do "this fine day" only to receive the expected roles serious people always play. Then he asks a stray puppy. "'Where are you going to this fine day?' I said to the puppy as he went by. 'Up to the hills to romp and play.' 'I'll come with you puppy,' said I.'"
If a puppy had the sense to stray up into the hills and leave the sombre expected roles behind then so could Jean and I. And we have. Of course not every day is a day for romp and play. I would deserve for Jean never to open that new front gate if I even hinted that I don't long for those years pre 2000.
The sun only shines as it pleases and it pleases me greatly to be where I can cast off much of the baggage dementia asks me to bring along. Even for just a few hours. Loneliness, loss of esteem, fear of rapid downward progress, acceptance that this moment is the best there will ever be and it gets worse from now on. And I have found a strange and exciting fact. The more often I stray from the expected, the lighter my load becomes. Jean postulates that we can forge new pathways in our brains if only we try hard enough and expect to succeed. One way to do this perhaps is to consciously stray from the known way into areas as before unknown.
My education was centred on the sciences and language took a very back seat. Wanting to express thoughts and de-mystify this condition has forged new skills and given me a sense of achievement. It isn't getting easier but I can begin to write with a confidence I have never had before even if makes little rhyme or reason to others.
What am I trying to communicate?
If we passively shut up shop in the early stages of our disease and just concentrate on what a horrible card fate has dealt us then we deserve to be miserable and should be ashamed of making the lives of those who love us so stressful. Instead, look for those opportunities to stray from the beaten path. Leave your dark rooms and open your hearts if you have trouble opening your minds. Hard at first I must admit but easier the harder you try.
I took a phone call yesterday afternoon. A young lady in a car sales firm asked if Jean and I would care to go to a function at 6 p.m. that night. Yes! We got into all our finery and turned up as invited. No function, no guests, nothing. The problem? I had the message wrong as usual. Fifteen minutes later we were dining together in a pleasant restaurant and thoroughly enjoying ourselves. Off the old pathways, away from the expected roles and we were having a ball.
I would not be so conceited as to put myself up as an example to many. But I can tell you that when the sun does shine I endeavour to make each spark that real that I can hang on for ever. And 'for ever' is as long as you can hold on for.
What is lost or stolen is lost and stolen. What you are left with is just that. Grasp it with all your heart and have another 'Day in the life of YOU!'
Brian McNaughton, New Zealand
Alzheimer's
Linear Mode
