9 December 2010

Today is my mother’s 94^th. birthday. You don’t have to be a genius to work out that she was only 17 when I was born but, at  least, she was married! Not that it seems to matter a jot today, with around 30% of babies born, out of wedlock, in the UK. In the early Thirties however society was not so broadminded.

She is in excellent shape physically, slim and with the mobility of a much younger woman. Unfortunately, she is in the early stages of Alzheimer’s Disease which puts a bit of a strain on her present (third!) husband, Richard. My goodness, what a star he is. Certainly the best thing that ever happened to my mother. He was in the Royal Navy, and is in reasonable health, apart from a dicky heart, which seems to be under control, he is very jolly for someone over 90 and utterly dedicated to looking after my poor mother.

I wonder if you should tell someone when they are diagnosed with Alzheimer’s disease?. Of course, they have a right to know but why worry them with the burden of that knowledge, particularly someone like my mother who is a bit of a worrier, anyway.. Certainly for the first year or two, hopefully the only outward signs would be being little forgetful, which is what people anyway come to expect when they get to a great old age.. (What I believe is politically correctly called ‘short-term cognitive impairment’. I’ve always said if I can remember that, I’m not suffering from it!). As soon as you put a label on something, then, in some people, that in itself creates anxiety and therefore a lessening of enjoyment of life.. I have told my mother not to worry about forgetting things. Don’t we all get up to the top of the stairs and wonder why we’re there and then only remember when we get down again?. At least, I used to, a year or two back when I could still climb the stairs. What I told her was, the day that she opens her front door, looks at me and says ’not today thank you’, and shuts the door again, then I know she’s in trouble. Before then she shouldn’t worry If I ever developed Alzheimer’s I think I would rather not know. Where that leaves the Dr, of course, is another matter.

There is also the carer to consider By not telling the patient the carer is carrying a heavy burden. Not only the physical task of looking after the patient but also the heavy conscience of keeping them in the dark.

Following on from this question about letting people know people know, I suppose the answer is  ‘it all depends’. Of course, everyone has a right to know and is it morally wrong to deny them that right. Certainly in a young adult I believe they should be told. Although, we did have one friend in his middle age who, when told he had Parkinson’s Disease, rather than becoming a burden on his family, tragically committed suicide. Had he not been told he would certainly have enjoyed at least another year with his young family before the disease became obvious . What if you are told that your young wife has no more than six months to live and she was ignorant of the fact? Would you not be tempted to make every day of that six months as fulfilling and happy as possible, until she notices that she is not entirely well. The minute she was told then her ability to enjoy the everyday things that we all enjoy, would be diminished. The same dilemma would face parents of a teenage child who contracted a terminal illness with a short lifespan. A moral dilemma indeed.

With MND, on the other hand, not even the doctors treating you,  know with any degree of certainty, how fast you’re going downhill and therefore how long you might live. The doctors are unlikely to tell you a great deal unless you ask some the direct questions and then they would usually say that every patient is different and they can only take it week by week.

However, if you are of an  enquiring mind and have access to the Internet you would, no doubt, read up about your disease. You would find that the statistics say that 50% of patients who contract MND will die, on average, within 14 months of diagnosis, which could mean as short as nine months or as long as 18, pretty alarming. Am I one of those, you might ask?

Your doctor may well be able to say that he does not believe so and that you have every chance of being in the second, two — five years  survival category from diagnosis . Even that is not particularly satisfactory as it can take some months to confirm the diagnosis as you had to undergo great number of tests to eliminate other possible causes. If you have to have these tests, under the NHS, then the process is inevitably even further prolonged. In my case,  for example, I was aware of a weakening in my left arm in September 2007. Going to the gym three days a week I noticed that side was finding it more difficult — I thought the weights were getting heavier! I was fortunate although I sought no advice until I had a BUPA check-up   the following January. Having medical insurance, all of my tests were carried out in a week or so. Even then after nine separate tests the neurologist was not entirely certain until I was sent off to one of the country’s leading doctors in MND, Prof Nigel Leigh at King’s College Hospital, London who was able to confirm the diagnosis.

Then there is the one in 10 lucky person who could last 10 years. (When I heard that I put up my hand and said I would opt for that one). Be there as it may the harsh truth is that because every patient is different and there are variants of the disease, until it attacks your throat and therefore affects your breathing,  swallowing and speaking, the prognostication is difficult.

There are even individuals who don’t fit into any of these categories. My own local MND representative has suffered from the disease for around 20 years and todate it has only affected his legs. The classic example of a long survivor is, of course, the famous Prof Stephen Hawkings, who was struck down in his youth some 40 odd years ago. How does he survive? I imagine he has a team of nursing assistants round-the-clock who ensure that he can breathe and does not choke on his own mucus. Does this mean that if I could afford this degree of attention, (which I certainly cannot) that I too could live to a ripe old age? I must remember to ask this question on my next assessment, merely as a matter of interest. But then even if I was told that by having the same degree of care, I could live for many years, would I really want to, being totally unable to move or speak and only communicating by eye movement?. As it is I go crazy not being able to scratch an itch; pick up a piece of paper; open a book or to get up out of a chair and do things which I would have done naturally without a thought.

So I suppose it comes back to the original question that I posed, at the beginning of this rant, as to whether a person should be told how long a doctor believes that they have to live and give the classic answer i ‘it all depends’.

What you say to the patient, as opposed to the carer, of course, is quite different. I don’t have any doubt that caring for someone, even in the early stages of Alzheimer’s, can be very stressful. You never quite know what they did do next and they are very easy to lose when shopping. I remember my great-grandfather living with us for a short while, who suffered from that condition, who was brought home, more than once by a kindly neighbour, who found him wandering about not remembering where he lived. I can’t remember that this was ever called Alzheimer’s in those days, just old age