Dear All You Wonderful, Wonderful People,
I have decided it is time for a new style of thread for me. One where I record Mum's and my journey through Advanced Dementia together. Right now I imagine posting snapshots, moments in time, so that when (if?) the going gets too tough, and I just can't do this any more, I will be able to read back and know why I failed to keep Mum at home to the end.
As always, your thoughts and comments are more welcome that I can say.
Sunshine, Watermelon and a Pair of Scissors
Snap-shot 1
Looked out when I got up and saw Mum was already on the patio, up early because she has no idea at all of time, or how to even guess at the time of day. Sitting, head bowed, her new posture, with a halo of white hair, and a sense of withdrawal that I find so new and disconcerting.
Hunger as so often beats an impatient drum. Off she goes scavenging, looking for something. Back with half a watermelon that she found in her fridge. Cool, raspberry sherbert blush with a deep green skin. Yum. But how to get at it.
Mum is resourceful. She has brought a pair of scissors with her. So she gouges out chunks of flesh - no knife. Does a knife even come to mind when she wants to cut something? No, in my experience, Alzheimers robs Mum of entire concepts. They disappear. She doesn't think in terms of knives or scissors, she wants to get at the juicy flesh, and any implement will do.
My precious husband strolled over to her patio (she lives across the road, our road) and gave her a cup of tea. Mum has polished off three slices of watermelon (pre-cut for her) and has savaged the remaining half.
"You are up bright and early", says he, giving her tea.
Am I? is clearly mirrored on her face, but when she feels criticised or in the wrong, she can speak fluently - such a contrast to the odd words she otherwise manages to produce.
"BE said to get up early...... sitting on my knee", says she.
Of course it is my fault - she is so quick off the mark to shift blame to me. The knee comment is a typical example of her speech patterns now. Random stuff, meaningless to me.
[Note: if these watermelons appear square to you, then you have spent longer than you think in a world gone haywire!]
What I used to call the Dementia Walk has become a Dementia Trail..... everywhere there are signs of bizarre behaviour. The tea towel I washed yesterday now lies in her fridge.
Several unused tissues strewn about.
When I walk from my house to hers, I feel her gaze upon me. It is guarded, not friendly, she sees me as an opponent.
"Morning Mum", I say brightly.
But this doesn't fool her. I am the one to watch. The "horrible woman" behind all this upset and chaos that we 3 now call everyday life.
For much of the morning I feel great sadness within me. Mum, the cook, the author of a cookery book, digging into a watermelon with a scissors? This evidence of how much she has changed really, really saddens me.
And then there is this persistent feeling of tiredness. Sometimes I am so tired when I wake in the morning, that I wonder if I actually got any real sleep. And I feel fragile, a bit like I felt when I had that amnesia stint, just so fragile. Distress hangs about in my abdominal area. Some part of me know that this is very, very bad. I am hanging on by a thread. And this wasn't the deal. I am a strong, resiliant, resourceful person. Patient, endlessly supportive. There for Mum. But I have to admit that, while I sailed through mid-stage dementia, real in-your-face dementia is knocking the stuffing out of me. I honestly never imagined anyone, let alone my mother could live a life like this.
I am reading the novel "Iris Murdoch", a romance and Alzheimer story of a loving couple. Some of what he writes destabilises me. Things like Alzheimers being like a corpse, a corpse that drags us all down together. Not sure if this book is the right reading for me in my fragile state of mind.
But the author writes of humour. Mum is like Iris, she understands jokes, humour and she laughs. How on earth does she understand wit and subtle banter, when she can't understand a simple phrase or instruction? But this is a fact. It puzzles me.
Snap-shot number one complete.
Good night all. BE sends you all a much better day tomorrow than we have a right to expect.
I have decided it is time for a new style of thread for me. One where I record Mum's and my journey through Advanced Dementia together. Right now I imagine posting snapshots, moments in time, so that when (if?) the going gets too tough, and I just can't do this any more, I will be able to read back and know why I failed to keep Mum at home to the end.
As always, your thoughts and comments are more welcome that I can say.
Sunshine, Watermelon and a Pair of Scissors
Snap-shot 1
Looked out when I got up and saw Mum was already on the patio, up early because she has no idea at all of time, or how to even guess at the time of day. Sitting, head bowed, her new posture, with a halo of white hair, and a sense of withdrawal that I find so new and disconcerting.
Hunger as so often beats an impatient drum. Off she goes scavenging, looking for something. Back with half a watermelon that she found in her fridge. Cool, raspberry sherbert blush with a deep green skin. Yum. But how to get at it.
Mum is resourceful. She has brought a pair of scissors with her. So she gouges out chunks of flesh - no knife. Does a knife even come to mind when she wants to cut something? No, in my experience, Alzheimers robs Mum of entire concepts. They disappear. She doesn't think in terms of knives or scissors, she wants to get at the juicy flesh, and any implement will do.
My precious husband strolled over to her patio (she lives across the road, our road) and gave her a cup of tea. Mum has polished off three slices of watermelon (pre-cut for her) and has savaged the remaining half.
"You are up bright and early", says he, giving her tea.
Am I? is clearly mirrored on her face, but when she feels criticised or in the wrong, she can speak fluently - such a contrast to the odd words she otherwise manages to produce.
"BE said to get up early...... sitting on my knee", says she.
Of course it is my fault - she is so quick off the mark to shift blame to me. The knee comment is a typical example of her speech patterns now. Random stuff, meaningless to me.
[Note: if these watermelons appear square to you, then you have spent longer than you think in a world gone haywire!]
What I used to call the Dementia Walk has become a Dementia Trail..... everywhere there are signs of bizarre behaviour. The tea towel I washed yesterday now lies in her fridge.
Several unused tissues strewn about.
When I walk from my house to hers, I feel her gaze upon me. It is guarded, not friendly, she sees me as an opponent.
"Morning Mum", I say brightly.
But this doesn't fool her. I am the one to watch. The "horrible woman" behind all this upset and chaos that we 3 now call everyday life.
For much of the morning I feel great sadness within me. Mum, the cook, the author of a cookery book, digging into a watermelon with a scissors? This evidence of how much she has changed really, really saddens me.
And then there is this persistent feeling of tiredness. Sometimes I am so tired when I wake in the morning, that I wonder if I actually got any real sleep. And I feel fragile, a bit like I felt when I had that amnesia stint, just so fragile. Distress hangs about in my abdominal area. Some part of me know that this is very, very bad. I am hanging on by a thread. And this wasn't the deal. I am a strong, resiliant, resourceful person. Patient, endlessly supportive. There for Mum. But I have to admit that, while I sailed through mid-stage dementia, real in-your-face dementia is knocking the stuffing out of me. I honestly never imagined anyone, let alone my mother could live a life like this.
I am reading the novel "Iris Murdoch", a romance and Alzheimer story of a loving couple. Some of what he writes destabilises me. Things like Alzheimers being like a corpse, a corpse that drags us all down together. Not sure if this book is the right reading for me in my fragile state of mind.
But the author writes of humour. Mum is like Iris, she understands jokes, humour and she laughs. How on earth does she understand wit and subtle banter, when she can't understand a simple phrase or instruction? But this is a fact. It puzzles me.
Snap-shot number one complete.
Good night all. BE sends you all a much better day tomorrow than we have a right to expect.
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