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5 July 2012

Posted by DMC on 6 July 2012 in Diary |

This morning I rang stepfather Richard to see why we were not able to Skype each other. Apparently he has been having trouble with his server, Talk Talk, who, he tells me, have promised to sort it out today. I shall try again in the next day or two as my mother, in particular, seems to draw a great deal of comfort from the visual contact. We are hoping to get them both down here for the day late in August. That is, as long as my mother, does not play up. The trouble with Alzheimer’s patients is that they can be thrown out by a change of routine. For example, last weekend they had both been invited to stay with friends in London, who very kindly sent a car, to pick them up. With their suitcases packed and in the hall, awaiting the transport, apparently, my mother asked about the suitcases and was told they were going to London. On hearing this she refused to move. Poor Richard, he had no choice but to telephone his friends and apologise in telling them they would not be able to make it. This is not untypical of an Alzheimer’s patient and one must have the greatest admiration for the carer, under the circumstances, it must be very frustrating.

In a telephone call today, I told my mother that they were coming down to see us at the end of August and told her that we do not want a repeat of the recent refusal. She assured me that she was really looking forward to it and when it came to it she would come willingly. Sadly, 5 min after this conversation, she will have forgotten every word of it. We must just hope, for Richard’s sake, that she does not refuse to get into the car, which we shall send for them. Any carer with a partner in the advanced stages of Alzheimer’s has to be an absolute Saint with his or her patients stretched to the limit daily. Richard is certainly a saint, so far as I am concerned
‘My lovely’ took a telephone call from the Love film people who had previously asked if I was prepared to participate in a film on Channel 4 dealing with the topical issue of assisted suicide. When they made the original call to me. Alice had also spoken to the lady project director and made it clear, in no uncertain terms, that she was totally against our being involved in further publicity. Whilst being sympathetic with Alice’s reservations I told the Channel 4 people I would see them in order to discuss just what aspect of my blog they wished to use but by seeing them they could not take this as a commitment to appear in their film. This being understood the purpose of the meeting, which was originally scheduled for tomorrow, until the same caller rang out yesterday to say that they had decided against my participation.

Alice believes that they have been reading my blog on a daily basis and will have noted, over the last few weeks, the problems I’ve had with my breathing and simply did not wish to use someone who appeared to be severely ill, in making this film. So the scheduled meeting was cancelled.

My regular readers will recall that following the programme on the BBC, when Sir Terry Pratchett, who I believe is also suffering from Alzheimer’s, went to explore the possibility of using Dignitas in Switzerland. His quandary being that he can only go down this route. while he is still capable of making a rational decision. With Alzheimer’s. It is almost impossible to predict when that time will come.

Following the broadcast of Sir Terry Pratchett’s programme, (see entries for 22 February 2012 and 24 February 2012) I spoke to the producer and said that I thought I it was a pity that more time was not devoted to the alternative, the hospices. As I know little about such places other than a preconception that when you went into one, it was usually at the last stage of your life, when you would pass away painlessly and with dignity. I suggested to the producer of the original Pratchett programme that we should do a sequel which showed the hospices as an alternative to having to go to Switzerland to die. Certainly, the BBC did not reject the idea but on the other hand gave no undertaking, if and when, they might make such a programme.

After raising this serious topic once again, I think the reader deserves some light relief. I suggest therefore you click here for some of Frank Carson’s one-liners

2 Comments

  • Lisa Burt says:

    Hello – I have followed your blog for a long time and usually ‘tune in’ first thing in the morning when I come to work – I work at The Earl Mountbatten Hospice, Isle of Wight. I just wanted to say it saddens me so much that people such as yourselves still don’t really know very much about the Hospice movement in the UK. It seems to me that there is still a great deal of work to do to bring the work of hospices into the minds of the general public.

    It’s a busy day here today. We are having our annual ‘go yellow’ fundraising day throughout the Island community and we are all suitably decked out in yellow attire. The dining room for our day patients is awash with sunflowers everywhere. We can take up to 20 day patients at a time and some patients have been coming here for months or even years…yes, years…myth number one is that a hospice is just a place to come to at the very end of ones life. We do all we can to help our patients live as well as they possibly can for as long as they can…day patients can have physio, occupational therapy, have a bath and haircut, get some complimentary therapy, have lunch, enjoy the garden and take part in organised outings and entertainment brought in to amuse them. There is a wonderful, awe inspiring amount of art work undertaken here too and our ten minute Christmas pantos are the stuff of local legend. The day unit is somewhere people WANT to come to and the sound of laughter rings out of there every day.

    Our in patient rooms – 14 of them – are used by patients that need to come into us for various reasons…not just to pass away. We assist patients manage their pain and symptom control, act as a ‘pit stop’ between hospital and home after surgery or other treatment and generally offer a bit of a rest for people who are finding it a bit tough at home.

    Our community nursing team look after the patients that want to stay in the community – be it their own homes or a place they have called home for a long time, such as a care home or sheltered accomodation. Our Hospice at Home team are a bunch of brilliant, dedicated nurses trained to look after patients at the very, very end of their lives, facilitating people to stay in their own homes to pass away if that is their wish. The Hospice at Home team actually looked after my own husband five years ago when he was dying. He was under the immediate care of the Hospice without ever actually setting a foot in the place.

    I think your idea to highlight the work of Hospices is terribly important and I hope the BBC take up your idea. Our hospice made such a huge difference to us as a family. I was able to have Ronnie at home, just being his wife…it was sad but felt very, very normal and I will owe them a debt of gratitude I will never be able to repay.

    I look forward to more of your blog entries…
    Sincerely
    Lisa Burt

    • DMC says:

      Thank you, so much, Lisa for your enlightening e-mail. One of the reasons why my wife was adamantly against me, anticipating in the Channel 4 programme that she was convinced they would concentrate on the assisted suicide angle rather than Living, which is a message I tried to get across. Maybe one-day the BBC will do the sequel that I have suggested, but I fear I may not be strong enough to take part in myself. The main thing is the main work of the Hospices Is put across in such a way that people realise that there previous conception of what happens in our hospitals, has been totally misconceived,

      once again many thanks taking the trouble to comment.

      Best wishes

      Mark

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