It's Dementia Awareness Week, and that is one reason I wanted to record my thoughts on here....
How aware were we of Dementia in the past? Had you ever heard of it when you were a child? I hadn't, or even as a young adult, when did it become known to us.....?
People say 'There is a lot of it about these days'
They really do.
But I think back to school, and Shakespeare - well, not a lot I must admit, but what has come into my mind of recent months is The Seven Ages of Man poem and the end line.
".......Sans teeth, sans eyes, sans taste, sans everything"
If the old Bard was not describing Dementia, I'm a Dutchman.
I remember where my Mum lived, and I remember her telling me about the old lady who lived alone down the road, and that she was going 'doolally' as the poor old dear kept going out and about in the middle of the night in her night clothes. Mum would call during the day to see the old lady was OK, but it never occurred to Mum that the lady was ill with a disease called 'Dementia' - she was 'just going senile' as people did.
Thankfully, there is now a diagnosis - no cure, but a diagnosis. Valuable research is being carried out into the causes, and looking for that elusive cure. But how many of us carers, who have staggered past the wondering, the doubts, and the puzzling, to the final diagnosis - was it a relief to know there was something wrong? We then move to the acceptance, and to the wondering of what might lie ahead.
In the old doolally days, people looked after their own, because it was what one did. If there was no one to do the looking after, there were always the Old Folks Homes, and further back the Asylums and Workhouses.
Now we know more, we expect more.... but we question, we want to know what lies ahead - and should we?
Once we know what the future holds, in all its darkness, and dread - have we ruined the present?
Tuesday, May 22, 2018
Monday, May 21, 2018
Too hot to fry
Well, here is my second attempt at a blog, only because I am trying to find my way around the site etc.
I tell people I am computer literate, well I am, but only in my own sphere of genealogy - which I still work at, by the way.
It's too hot today - I do not do' hot' I hate hot, please don't send me to somewhere where the temperature is over 20 degrees, because I might dislike you as much as I dislike Dementia.
Capital 'D' for Dementia, because, to coin a phrase, it is the third person in our relationship. If I think of this awful disease as a 'person' I can channel my thoughts towards it - I will never beat it, but I can give it a jolly good thrashing on behalf of the 'poor ould fella' - who has just come back from snooker.
We live a very structured life these days, but those good people on the Alzheimer's Society Talking Point Forum assure me that this is fine, and that people who are walking hand in hand with Dementia are more comfortable with this.
What does Dementia look like ? A bit like Cruella De Ville from 101 Dalmatians - only not as pretty. Dark, spikey, un attached to anything but her own wishes.
See those spikey high heels, Jimmy Choo, probably? I will trip her one day.
I am trying to arrange some sessions for a wee bit of counselling - there has been so much going on recently that I think it would help me get it all in order. The counsellor actually comes to our village - Great! But can I pin down a time that will suit me - and him - or should I say him.
Can't be between 1 and 2 as he 'has' to have lunch then, so can't be Wednesday's either, oh, I can try and get there on Thursdays but 10.00am is a bit early as he might not be sorted for the day.
How did all this happen?
Who knows? I never did like Cruella in the films, but I did not think she would come and live with us in the shape of Dementia.
Have any of you ever looked at a brain scan and seen, and understood what was going on there? I have. Unfortunately, for me I did understand it. It washed over the poor ould fella, even though it was his brain. I saw the holes and the gaps - and despaired. We then walked out of the consulting room and that was that. Go away, get on with your lives, no tablets, no cure, no treatment. OH! How surprised was I.
I am a researcher of lives, I need to know why, and wherefore. In my perfect world ( pardon?? What might that be) I would want to see a brain scan every 18 months to confirm what my suspicions are...... that Cruella is gaining ground, like a weed, only where is the 'Roundup' to get rid of her????
I tell people I am computer literate, well I am, but only in my own sphere of genealogy - which I still work at, by the way.
It's too hot today - I do not do' hot' I hate hot, please don't send me to somewhere where the temperature is over 20 degrees, because I might dislike you as much as I dislike Dementia.
Capital 'D' for Dementia, because, to coin a phrase, it is the third person in our relationship. If I think of this awful disease as a 'person' I can channel my thoughts towards it - I will never beat it, but I can give it a jolly good thrashing on behalf of the 'poor ould fella' - who has just come back from snooker.
We live a very structured life these days, but those good people on the Alzheimer's Society Talking Point Forum assure me that this is fine, and that people who are walking hand in hand with Dementia are more comfortable with this.
What does Dementia look like ? A bit like Cruella De Ville from 101 Dalmatians - only not as pretty. Dark, spikey, un attached to anything but her own wishes.
See those spikey high heels, Jimmy Choo, probably? I will trip her one day.
I am trying to arrange some sessions for a wee bit of counselling - there has been so much going on recently that I think it would help me get it all in order. The counsellor actually comes to our village - Great! But can I pin down a time that will suit me - and him - or should I say him.
Can't be between 1 and 2 as he 'has' to have lunch then, so can't be Wednesday's either, oh, I can try and get there on Thursdays but 10.00am is a bit early as he might not be sorted for the day.
How did all this happen?
Who knows? I never did like Cruella in the films, but I did not think she would come and live with us in the shape of Dementia.
Have any of you ever looked at a brain scan and seen, and understood what was going on there? I have. Unfortunately, for me I did understand it. It washed over the poor ould fella, even though it was his brain. I saw the holes and the gaps - and despaired. We then walked out of the consulting room and that was that. Go away, get on with your lives, no tablets, no cure, no treatment. OH! How surprised was I.
I am a researcher of lives, I need to know why, and wherefore. In my perfect world ( pardon?? What might that be) I would want to see a brain scan every 18 months to confirm what my suspicions are...... that Cruella is gaining ground, like a weed, only where is the 'Roundup' to get rid of her????
Well? Am I dementia friendly, or just not politically correct?
Am I Dementia Friendly - not in this house!
Well, the title says it all - I am most definitely NOT dementia friendly. In fact, I hate dementia! It has taken my man away from me, he is a shadow of who he was, it has ruined our lives.
What can I do about it? Can I kick dementia out? Well, no, this unwelcome guest is here to stay, and one of us will win this battle, and it will not be me, it will not be my man, it will be the hated dementia. And I do hate it. I have never hated anyone or anything in my life before, apart from maths and science, and cookery, and needlework.... but all that is another story.
Who am I, who is he? That is not really important, enough to say we were once married to other people, and that we came to each other late in life. We thought we were soul mates, we were soul mates, for a while. A slightly odd couple, he brought up far differently than I, in my parents two up two down workers terrace in the north west, and he in a rather pleasant detached house in the east midlands, where one had lunch and supper, not dinner and tea.
We were both creative in our own way - he a very talented chorister, as singing ran in his family. It does in mine, in fact I had an uncle who sang for Sadler Wells, but it is a gene that by passed me as I cannot hold a note in a bucket. He was somewhat condescending as to my lack of musicality - he never did realise that I do have a knowledge of classical music, and a love of 60's pop, I just cannot sing.
After we got together, it was great fun. Once a month I would drive up to him in the lovely village of Langham in Rutland, and once a month he would drive down here to Devon. We went on days out, pub lunches, and generally got to know each other. On one occasion he asked me if I minded if we went to visit his sister, Margaret, who was in a Care Home. So, we did. I was not sure what to expect, as Margaret was not very old, mid 60's, at that time.
When we arrived, I was greeted by the usual friendly staff, and caring people, and awful lingering smell. Every care home seems to have it - it is part of old age, part of decay, and dementia. I thought to myself that I did not mind visiting, as this was not a great part of our lives together. Margaret was in the latter stages of some kind of dementia. I met her gentle husband, Anthony, and was touched by the loving care he had of his wife. He would tenderly wipe away the excess saliva that gathered in her mouth and throat causing her difficulty. So lovingly, talking to her all the while. I tried not to stare.
We chatted in front of Margaret, as she was not really with us. But I remembered that hearing stays if all else is lost - in the dying, but I did not know if it still applied with dementia - so I chatted to her too. But I was glad to leave, leave that dreadful lounge with its occupants staring out through the large picture windows, and the child like mobiles and decorations around the room, that to me, seemed intellectually insulting.
I pitied Margaret, I pitied even more, Anthony, her smiling, sad husband.
Little did I know what lay ahead - that our roles would change, Margaret would die, Anthony would grieve, but then he would in due course, find a new love, and be happy again, with his new, fresh, love. Whereas, I, would be the one meeting dementia every day, getting to know dementia, fighting dementia, on behalf of my love, who would grow distant and lost to me.
From my feeling sorry for Anthony and his awful situation, while I had a new and vibrant love in my life, we have done a complete turnaround. He now pities me, with this awful interloper in my life, while he has the new love.......
But this is only the beginning of my story, and the story of my lost love.........
Well, the title says it all - I am most definitely NOT dementia friendly. In fact, I hate dementia! It has taken my man away from me, he is a shadow of who he was, it has ruined our lives.
What can I do about it? Can I kick dementia out? Well, no, this unwelcome guest is here to stay, and one of us will win this battle, and it will not be me, it will not be my man, it will be the hated dementia. And I do hate it. I have never hated anyone or anything in my life before, apart from maths and science, and cookery, and needlework.... but all that is another story.
Who am I, who is he? That is not really important, enough to say we were once married to other people, and that we came to each other late in life. We thought we were soul mates, we were soul mates, for a while. A slightly odd couple, he brought up far differently than I, in my parents two up two down workers terrace in the north west, and he in a rather pleasant detached house in the east midlands, where one had lunch and supper, not dinner and tea.
We were both creative in our own way - he a very talented chorister, as singing ran in his family. It does in mine, in fact I had an uncle who sang for Sadler Wells, but it is a gene that by passed me as I cannot hold a note in a bucket. He was somewhat condescending as to my lack of musicality - he never did realise that I do have a knowledge of classical music, and a love of 60's pop, I just cannot sing.
After we got together, it was great fun. Once a month I would drive up to him in the lovely village of Langham in Rutland, and once a month he would drive down here to Devon. We went on days out, pub lunches, and generally got to know each other. On one occasion he asked me if I minded if we went to visit his sister, Margaret, who was in a Care Home. So, we did. I was not sure what to expect, as Margaret was not very old, mid 60's, at that time.
When we arrived, I was greeted by the usual friendly staff, and caring people, and awful lingering smell. Every care home seems to have it - it is part of old age, part of decay, and dementia. I thought to myself that I did not mind visiting, as this was not a great part of our lives together. Margaret was in the latter stages of some kind of dementia. I met her gentle husband, Anthony, and was touched by the loving care he had of his wife. He would tenderly wipe away the excess saliva that gathered in her mouth and throat causing her difficulty. So lovingly, talking to her all the while. I tried not to stare.
We chatted in front of Margaret, as she was not really with us. But I remembered that hearing stays if all else is lost - in the dying, but I did not know if it still applied with dementia - so I chatted to her too. But I was glad to leave, leave that dreadful lounge with its occupants staring out through the large picture windows, and the child like mobiles and decorations around the room, that to me, seemed intellectually insulting.
I pitied Margaret, I pitied even more, Anthony, her smiling, sad husband.
Little did I know what lay ahead - that our roles would change, Margaret would die, Anthony would grieve, but then he would in due course, find a new love, and be happy again, with his new, fresh, love. Whereas, I, would be the one meeting dementia every day, getting to know dementia, fighting dementia, on behalf of my love, who would grow distant and lost to me.
From my feeling sorry for Anthony and his awful situation, while I had a new and vibrant love in my life, we have done a complete turnaround. He now pities me, with this awful interloper in my life, while he has the new love.......
But this is only the beginning of my story, and the story of my lost love.........
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