It certainly does, Pete. I remember trying to 'escape' from my 4 kids at one point, and I locked myself in the loo - only for one of them to write me a note and push it under the door!!! We are in the same situation now, aren't we?
TIPPING POINT
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It certainly does, Pete. I remember trying to 'escape' from my 4 kids at one point, and I locked myself in the loo - only for one of them to write me a note and push it under the door!!! We are in the same situation now, aren't we?
Oh Lord, I'll have to remove all her paper and pens. The sheer thought
ha ha ha - We have to laugh - don't we???
I'm sure your right , went through this a few months back he finished up in hospital with pneumonia ,any how we've seen the doctor he's giving my Husband a prescription for antibiotics so we'll see how he goes on with theses. Thank you for your reply.x
It does wear thin your right,you can't even go to the loo in peace. Aye Ho that's what he's like now but never use to be .Thank you for replying back . To know there's someone there to listen. X
We’re home now and I try to encourage my wife to remember the good bits of Christmas but I’m surprised that she doesn’t remember most of it..this is new as I think that’s a recent downward progression into the condition and I’m , to be honest, scared. What’s next Christmas going to be like, if we’re around that long? My daughter has been marvellous and helped a great deal but once away I’m on my own with the constant bombardment of unhelpful emotions that the dementia generates. I’m really not good at this. I get angry, irritated and unsympathetic with it all. Then I remember she can’t help it and then I feel horrible for not controlling myself. I find it difficult to come to terms with it and standing back and being dispassionate, which I know might help.
I was going to ask if anyone keeps a journal of their life with a PWD as it’s often suggested this helps. Not sure myself as it seems a bit clinical but the argument is that it’s quite cathartic in some way and is completely different from diarising on this Forum. I’d be up for it if people also find it helps
In the first four years I kept a detailed diary about behaviours and experiences as I was overwhelmed with all that was happening. In the last two years I have been winding down on detail as it is all much the same most of the time. I do keep a diary though and note eg any incontinence or health issues or matters I need to report to his doctors.
I found it helped a lot to look back on what was going on.
I found it helped a lot to look back on what was going on.
I kept a long running Thread on TP about the progression of my husband`s dementia .
This Thread covered seven years of his dementia and my life struggling to cope. I started it one year after I joined TP and two years after diagnosis.
I closed it when he died in 2014.
I received unparalleled support from TP members which helped to see me through some very difficult times.
https://forum.alzheimers.org.uk/threads/a-life-in-the-day-of.6842/
This Thread covered seven years of his dementia and my life struggling to cope. I started it one year after I joined TP and two years after diagnosis.
I closed it when he died in 2014.
I received unparalleled support from TP members which helped to see me through some very difficult times.
https://forum.alzheimers.org.uk/threads/a-life-in-the-day-of.6842/
I also kept long running threads. One about my mum and one about my husband. Like Sylvia. I found these invaluable both interns of support but also in terms of having a record I could refer back to if I needed to. I got them closed just after they died.
I used Word on my laptop and at the end of the day recorded our day and always made sure the last sentence, or two, were how I felt about the day.
My husband’s CPN suggested I did it and seven years down the line my journal became very important. Life by this time was very difficult and the CPN asked was I still doing the journal. I was, so she suggested I print them off and she would see his consultant saw them before our visits. The consultant always acknowledged he had them by waving them slightly in his hand and smiling at me. We never had to talk openly about my husband in front of him and from the questions his consultant asked my husband I knew he had read my notes. His version of events was obviously totally different to mine. I only stopped writing my daily notes when my husband went into a nursing home after 9 weeks in an assessment unit.
I still have them on my laptop and I have re read them once, they were difficult to read and I wander how either of us survived those last couple of years he was at home, but survive them we did and had a further 4 years together with less problems and loads of support from his nursing home.
It is nearly three years since my husband passed away and I will never read the notes again, my memories of my husband are all of pre dementia now, happy ones. I will remove them now I’ve spoken about them, there are things and behaviour I never discussed with our children and I don’t think they need to know.
So@Dutchman after that ramble I would say yes, keep a journal, it’s good to be able to look back when needed and nothing gets missed and it can be very helpful when it comes to needing help and support.
I have a five page transcript of an interview I did just over three years ago for a group from the Scottish govt, a university and social services. I assume others were interviewed too. When I read that transcript my heart breaks for myself at that time as it was the worst for me. John was oblivious. He was at the height of wandering, sundowning, poor sleeping. I am a pretty calm and organised person but that few years almost broke me and for the first time in my life I was bordering on suicidal. The situation now is not great but tolerable and my outlook changed. If we knew how the illness would progress it would be more bearable but logging the details as we go along gives us a better perspective of how things were and are.
I have not kept a diary.
Perhaps I should and let his family have copies when everything is over and done with and I slip out of their lives. This is presuming that OH passes on before I do.
I have no doubt that they will drop me like a stone in the end.
So what satisfaction would I gain from letting them know exactly what their brother/father/ put us both through during this awful illness - probably none whatsoever - and none of it his fault.
I can remember the terrible times over the last 4/5 years, and I think, for me, typing them out will only make them jump out at me again and distress me further.
It's not been a Merry Christmas ( apart from 1 visit from my family, and 1 to my friend) BUT it has been the first Christmas in the last 4 years when he has not ended up in hospital seriously ill - so, let's count that a big bonus.
and onward we all go towards 2019 and whatever that has up its sleeve ( apart from Brexit)
Perhaps I should and let his family have copies when everything is over and done with and I slip out of their lives. This is presuming that OH passes on before I do.
I have no doubt that they will drop me like a stone in the end.
So what satisfaction would I gain from letting them know exactly what their brother/father/ put us both through during this awful illness - probably none whatsoever - and none of it his fault.
I can remember the terrible times over the last 4/5 years, and I think, for me, typing them out will only make them jump out at me again and distress me further.
It's not been a Merry Christmas ( apart from 1 visit from my family, and 1 to my friend) BUT it has been the first Christmas in the last 4 years when he has not ended up in hospital seriously ill - so, let's count that a big bonus.
and onward we all go towards 2019 and whatever that has up its sleeve ( apart from Brexit)
I only tried to read `A Life in the day` once and found it too upsetting. Our son used to read it in the early days and it gave him some insight.
I'm the same Sylvia. I can't go back and read my Update on Bill thread. After reading this thread last night I searched for it an opened it up. I read the last post which was me reporting that Bill had died. I wish I hadn't read it now. Still - I know it was a place of massive support for me when I needed it.
I have wondered about a 'journey thread, so far have decided not. Much is personal to us and it is different for others.
It would, however, perhaps remind me of the new reality.
Sometimes I wonder if I am wrong, my husband looked so well, he remembered a game he must of played when young, we did not play it as a family.
Then he blithely said to today we could get somewhere by train and find a taxi, forgetting the Rollator, the luggage for us and all the extras we would have to take, my age and health and him falling asleep at a drop of a hat.
I do keep medical notes and give the GP a written update.
I tend not to go back in life.
I like the Zen expression that one cannot step into the same river twice.
It would, however, perhaps remind me of the new reality.
Sometimes I wonder if I am wrong, my husband looked so well, he remembered a game he must of played when young, we did not play it as a family.
Then he blithely said to today we could get somewhere by train and find a taxi, forgetting the Rollator, the luggage for us and all the extras we would have to take, my age and health and him falling asleep at a drop of a hat.
I do keep medical notes and give the GP a written update.
I tend not to go back in life.
I like the Zen expression that one cannot step into the same river twice.
I think that's useful. I gave my son a copy of my AA application form for this purpose.
