Category Archives: Alzheimers

Death and Memories of Life

I think I need to say right at that beginning that I know I am writing this post as a way of trying to find out just how I feel this morning.

A couple of hours I got a call from my daughter in the UK to let me know that my mum had died in hospital during the night: it wasn’t a surprise as Mum fell and broke her hip a couple of weeks ago and needed surgery which is never good when you are 89. A few days ago the hospital let us know that Mum had slipped into a coma and that her organs were about to start failing, so, no big surprise this morning to hear that she had died and I received the news quite quietly, some sadness which I can feel increasing as I write this, but no tears or histrionics from me, no sudden sense of loss or loneliness either. Mum had been afflicted by Alzheimer’s and other forms of dementia for the last 10 years, or possibly more as this insidious disease doesn’t really announce it’s arrival but builds up gradually from taking away minor items of mental facility such as forgetting where you left something to taking away pretty much everything so that you forget who you are. Looking back there was some point in those 10 years where Mum “died” for me and perhaps that’s why I feel as I now do. The other thing which is, I think, a big contributing factor to my feelings is that it’s now 12 years since I can pinpoint the first time Mum told me she wanted to die. There are lots of times when I can think of hearing people say they wished they were dead, but, generally, that’s just a statement with no real meaning except to express a severe reaction to something, however, with Mum, it was different: she really meant that she wished she could die. Looking back she was, at that point, aware of her diminishing mental facility (though she made sure to cover it up well!) and was clearly aware that she was starting to live a life which was diminished in quality and which would continue to diminish. I can understand that feeling. Over the succeeding years I heard the “I wish I was dead” and “I wish I could die” many, many times. On several occasions it was followed by a very plaintive look as she followed that phrase with “but I know you can’t do anything for me.” Talk about heart wrenching!!

I have my own beliefs about what happens to Mum’s life force now, although clearly I can’t really know, but Mum had a very clear vision of the Christian God with white hair and a white beard sitting up in Heaven on a throne in a blue sky with fluffy white clouds all around. It was a vision Mum got as a girl growing up in Gawber and attending the local junior school and, of course, Sunday School at the local chapel – Mum was always clear that they were “Chapel and not Church” when they were growing up as it seems, in Mum’s opinion at least, that those who went to the church were “stuck up and thought they were something”! Anyway I really hope that, for Mum, her vision of the afterlife holds good and that she is now re-united with her Mum whom she adored but I never met, her siblings, possibly her dad although she had no really clear memories of him as he died in a pit cave-in when she was quite young. Will she be re-united also with my dad? I don’t know as his experiences with the Duke of Wellington’s Regiment during WWII convinced him that there could be no such thing as God and the thought occurs to me that, maybe, after death what happens might just depend upon what we believe should happen.

Mum leaves behind lots of memories with me, my daughters and my grandchildren which are now making my eyes blurry so perhaps it’s time to stop writing and dry my eyes ;0)

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Filed under Alzheimers, Death, Dementia

If this had been happening a year ago.

Something made me think, last night, about how different this entire cancer experience would have been had it happened twelve months ago.

A year ago I was living in England with my mother who was, and still is, suffering from both Alzheimer’s Disease and Dementia while sustaining a very long distance relationship with my fiancee in Florida. A year ago the process had been started for assessments to be made of Mum which would, ultimately, lead to her being placed in full-time residential care. I was working at a job which I didn’t find particularly satisfying, which, in winter, meant leaving the house before dawn and returning after dark. The pay was poor (though in line with other companies) and I did the job basically because it was undemanding, as I had little energy left to do anything after long sequences of broken nights and energy sapping arguments with Mum, who was clearly slipping into the other world of dementia.

Had the cancer been identified at that point in my life then I would have found myself having to deal with it in a very different way to the way I can now. Now, I can rely upon my wife, had I been living with Mum then she, my mum, would have been relying on me and there would have been no way of getting her to understand and remember anything about the cancer. Perhaps the situation would have speeded up the reporting and evaluation process needed for Mum to go into care but these things seem to have a life-cycle all of their own, and I can’t say that I have any belief that things would have progressed more quickly on that front.

From what I understand, the treatment for Hodgkin’s Lymphoma is pretty standard, which, I presume, means I would have been prescribed the same course of drugs and infusions in the UK as in the US. One of the instructions which goes with that treatment is that I shouldn’t mix with groups of people, e.g. in a theatre, as the chemotherapy drugs will suppress my immune system. So, it’s very doubtful that I would have been able to continue working, particularly as my journey to work involved a peak time commuter train in both directions as well as a tram ride. Then there would have been the difficulties of working with groups of people, shift rotations of staff and an appreciable number of visitors to the site as well. It seems pretty obvious that I would have had to leave the job as being, physically, not capable of doing it. This would have left me without an income. Mum going into full time care would have left me without a home, so I would have had neither home nor job. Not a great prospect!

I am sure my daughters would have given me all the support, both physically and emotionally, which they could, but they each have their own lives to lead and family commitments to meet, as well as working themselves.

Instead of all the above problems I’m being looked after by my wife who is the one who goes to work and is making no real demands upon me other than that I put my energies into recovering as quickly as I can.

The only downside is that in the UK my treatment would have been free under the NHS, whereas here, in the US, we have to pay for every visit and every treatment.

It may seem strange to say it, but, I think I am a very lucky man for a number of reasons:

  • I have Hodgkin’s Lymphoma which, statistically, is unlikely to kill me;
  • I have a home and the love of a really good woman;
  • I have the love and support of my daughters;
  • I have the support of friends;
  • My wife’s job includes health care which minimises the costs borne by us though they are still substantial.

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Filed under Alzheimers, Alzheimers Disease, Cancer, chemo, chemotherapy, Dementia, Health Insurance, Hodgkins Lymphoma, NHS