14 July 2012

Here we are almost halfway through July and there is no sign of the renowned English summer. Where are those dreamy days where it was really too hot to do anything other than to keep in the shade, or perhaps indulging the short periods of sun-tanning and then retire to the shade, I remember so well those hot August days when the shimmering heat on the tarmac hips was reminiscent of the mirage we won’t see on some film or other on location in the desert. To date we have had no such days. I know better than most people as it is only on such days that I am permitted to be put into my wheelchair either after breakfast, or lunch time, to spend a little time in the garden. The problem in putting me in the wheelchair before lunch is that I will have to stay there until 6.00 a.m..

I have received comments from time to time from a carer called Penny de Quincey. (There is no breach of confidence here as her contribution through the comment section of this blog) . Penny has very kindly agreed to share information about the life of her dear husband Stuart, who is, sadly, no longer with us. Penny seems the perfect model of a family member acting as carer.

Although everything that Penny had to do, including selling their house and moving into more suitable one, that could be adapted, had to be down in a very short time scale, the way she dealt with it and dedicated her life to making that of her husband as comfortable and peaceful as possible, her relationship with her husband Stuart, has to be applauded and is very similar to that which I am lucky enough to enjoy with’ my lovely’.

What follows today is an introduction from Penny, leading tomorrow to pretty much the situation in which I find myself today, way down the same path as Stuart, but with some suggestions of which we have not been made aware, which, if we can get them too, may well improve, the quality of my life, for the time I have left, We will draw these differences to the attention of our GDP or hospice contact and see if there would be any benefit to be gained should she decide to adapt them for me. Apart from anything else, this is a wonderful illustration of the effectiveness of this blog in sharing our experiences with others, who may well find themselves in the same boat, but without such excellent support.

Now to Penny’s introduction

I was a little apprehensive about sharing this, but on the other hand I am well aware that it took very careful planning, and very straight talking, to achieve this end for my dear man. The fact that it was possible, and that he died peacefully and unafraid at home is a great comfort to me.

I am more than happy for you to use this as you wish. If it helps even one person to an easier end, and is in any way reassuring, I will feel it has been worth writing.

Our medical team were VERY happy that Stuart had made his wishes known well in advance. It meant that they knew exactly how to manage things for him, and were all aware that he didn’t want to be kept alive when the quality of his life deteriorated to an intolerable (to him) extent.

Everyone was very respectful to his wishes, as of course they must be now that the Advance Directive is legally binding. In passing I should say that if you would like to have a copy of Stuart’s Advance Directive I would be very happy for you to have one. the wording was advised by MDA and it sets out in no uncertain terms what his wishes were.

I am happy for you to use my name of course. I kept my maiden name when we married in 1986. Stuart would be happy if he thought that his experience might help someone, and I like the idea of it being a Memorial contribution.

Stuart’s name was HAGUE. He was born in 1935, and had a very healthy life, looking much younger than his years. In August 2010 he had a couple of unexplained falls, though we were not worried about it as he seemed to be very fit. In October of that year he noticed that his right hand was losing power and dexterity, and his right arm was also weak. Our doctor referred him immediately to Ipswich Hospital where he had a scan and they diagnosed a minor stroke (although there was no evidence on the CT scan). After a couple of months of physiotherapy his arm was getting worse and there was a slight drag in his right leg.

Well, he gradually got worse and was sent for more tests, but it was not until June 2011 that he was finally diagnosed (though I think we suspected before that).

He was put on Riluzole, but stopped taking it as it made him terribly sleepy all the time. The progress of his illness rapidly accelerated at the end of 2011, and by Christmas he was using a wheelchair most of the time, even at home. He could still use his left hand and arm a bit, though increasingly needed help to eat. Early in 2012 his swallowing started to become badly affected, and his speech very quiet. His breathing was getting a little worse, but not noticeably so. He died on 12th March 2012. You can look at photos on his Tribute Fund page at St Elizabeth Hospice, but I will attach one to this email so that it seems more personal

We should all feel very grateful to Penny for sharing this very personal experience. Tomorrow I will complete the information shown sent to us, when she deals with the JUST IN CASE kit and says a few words about the Hospice at Home, all of which MND patients and their carers should be made aware.