i can't see why it can't be offered to the patient at the small cost of indegestion tablets too. manufacturers probably could not keep up with the high demand neccesary for all who had to take it.
Mum, Dad, Alzheimer's & Me Channel 4
- Thread starter EmJ
- Start date
I watched it...
Wrapped in a blanket in the conservatory....how I persuaded Eric to let me be is another matter...
I was impressed...well balanced...no icing on the cake or sentimentality...I too was concerned by..
Having given it some thought..did the daughter perhaps mean in view of her mother's swift decline that it wasn't 6-7 months left to live..(I don't think she actually said that..correct me if I'm wrong)...I wonder if she meant 6-7 months before her mum lost all recognition and moved on to the next phase?
Can't imagine that any doctor would have put such a time scale on it...Eric is physically in much worse shape than that lady..and we're bound to compare.
Love gigi xx
Wrapped in a blanket in the conservatory....how I persuaded Eric to let me be is another matter...
I was impressed...well balanced...no icing on the cake or sentimentality...I too was concerned by..
..that statement.
Having given it some thought..did the daughter perhaps mean in view of her mother's swift decline that it wasn't 6-7 months left to live..(I don't think she actually said that..correct me if I'm wrong)...I wonder if she meant 6-7 months before her mum lost all recognition and moved on to the next phase?
Can't imagine that any doctor would have put such a time scale on it...Eric is physically in much worse shape than that lady..and we're bound to compare.
Love gigi xx
Hi gigi
that occurred to me too, and assume it was left deliberately ambiguous.
I wonder if they know that your interpretation can sow more fear than the '6 months to live' one.....
Realistically, putting together a programme of that length is a major task and every single point is never going to be absolutely correct, or explained clearly enough.
gigi said:
that occurred to me too, and assume it was left deliberately ambiguous.
I wonder if they know that your interpretation can sow more fear than the '6 months to live' one.....
Realistically, putting together a programme of that length is a major task and every single point is never going to be absolutely correct, or explained clearly enough.
Ah Bruce...thereby hangs a tale..as they would say....
A thought too huge to contemplate for me tonight...and for many of us..I'm sure..
Maybe that's why it was left "hanging in the air"....
I agree...but hope that it has raised awareness in households where it may not have done if it hadn't been Fiona spearheading it...
Love gigi xx
Correct me if I am wrong but I heard " they told us Mum has 6 /7 months left" by that I assumed that her Mum had 6 /7 months left to live although like others have said would she mean 6 /7 months left of recognition.
I also compared like gigi, and not one of the sufferers were as bad as Mum, this is why when the daughters said the length of time, I was left wondering who on earth would have given a time scale, her abilities are far far beyond what my Mum is capable of. I would love to walk arm in arm in the park with my Mum, and have her be able to kiss me in the loving nature that she did. Please don't get me wrong here I am not jealous, just worried really that this poor girl may think that is all the time she may have left with her Mum and that could be very very wrong.
I also compared like gigi, and not one of the sufferers were as bad as Mum, this is why when the daughters said the length of time, I was left wondering who on earth would have given a time scale, her abilities are far far beyond what my Mum is capable of. I would love to walk arm in arm in the park with my Mum, and have her be able to kiss me in the loving nature that she did. Please don't get me wrong here I am not jealous, just worried really that this poor girl may think that is all the time she may have left with her Mum and that could be very very wrong.
Knowing how the medics talked to me some years ago they gave me a set of time scales from tomorrow to 10 years but most likely about 5-7. I can only assume that if this a lady has been given a prgonosis they are basing it upon the likelihood given the current experience of her particular illness, but with a range, but the worst case scenario is what they heard. we had but a snapshot of this lady, we do not really know how fast she has been declining.
I know that in the time running up to Mum's passing we were aware that it could happen any time, we were also fearful that it would not and this from the NH staff who were experienced in dealing with dementia. Most would give a range but no guarantees and would always preface it with it is different for everyone.
For each of us the progression of the disease differs. 8 months before my Mum died, she could mostly answer closed questions, although needed help with toileting and feeding. She was incontinent of urine and very occasionally bowel, but she could smile at me and laugh with me at times but we knew that we were living a day at a time, we already had been for a year. We were living in the VAD world were TIAs are often silent but cause damage and can precede "a big one".
I don't mean this to scare anyone because a week before mum died we still did not know how long she would carry on for, although by then she was mostly asleep, rarely got up for more than a couple of hours. But I think when the time came that life was too exhausting and confusing for her she made her decision. I am sure that she had been mulling it over in her head for a while, her chats with her "Angels" revealed such a lot.
I think for each of us the journey differs here, depending upon how the disease progresses and a likely prognosis can only be from what you have seen others do and what your loved one is doing. Some stayed at those closing stages for a lot longer. One lady in particular stays in my mind..for 2 years she did not leave her bed, scarcely ate the puree etc., staff were with her almost all the time but she she was not ready to take that next step.
It is back to the question, "How long is a piece of string?"
I know that in the time running up to Mum's passing we were aware that it could happen any time, we were also fearful that it would not and this from the NH staff who were experienced in dealing with dementia. Most would give a range but no guarantees and would always preface it with it is different for everyone.
For each of us the progression of the disease differs. 8 months before my Mum died, she could mostly answer closed questions, although needed help with toileting and feeding. She was incontinent of urine and very occasionally bowel, but she could smile at me and laugh with me at times but we knew that we were living a day at a time, we already had been for a year. We were living in the VAD world were TIAs are often silent but cause damage and can precede "a big one".
I don't mean this to scare anyone because a week before mum died we still did not know how long she would carry on for, although by then she was mostly asleep, rarely got up for more than a couple of hours. But I think when the time came that life was too exhausting and confusing for her she made her decision. I am sure that she had been mulling it over in her head for a while, her chats with her "Angels" revealed such a lot.
I think for each of us the journey differs here, depending upon how the disease progresses and a likely prognosis can only be from what you have seen others do and what your loved one is doing. Some stayed at those closing stages for a lot longer. One lady in particular stays in my mind..for 2 years she did not leave her bed, scarcely ate the puree etc., staff were with her almost all the time but she she was not ready to take that next step.
It is back to the question, "How long is a piece of string?"
Dear Bruce
For my part, I only wish things WOULD develop that quickly once past a certain stage. It is the not knowing how many years of slow decline the poor person has to suffer - even to the decade - that is most difficult, for me.
I have to agree.
Barb XX
For my part, I only wish things WOULD develop that quickly once past a certain stage. It is the not knowing how many years of slow decline the poor person has to suffer - even to the decade - that is most difficult, for me.
I have to agree.
Barb XX
We watched the programme too, as did my mum & dad. We were all in bits, I also hope Fiona does a follow-up and further programmes are shown - soon!
Kate xx
Kate xx
Awareness
Can I say a big well done to Fiona for her documentary on Monday night.
My mom has Alzheimers, and has had it for 3 years or so now, 2 of these years the disease has been diagnosed. When we look back as a family though, mom could have had the disease a lot longer. Mom is in the later stages of the disease and is doubly incontinent, can't speak, feed, drink or walk.
For a long time, as a family, we have battled with all of the problems highlighted in the documentary, and I have said for a long time it needs a high profile figure to make people aware of the disease and to put pressure on the government to help.
I would like to also make people aware of another problem we have had. It took a long time to get my mom into a EMI home, which there are not many of. Mom had only been there for 6 weeks and the decline in mom's health led us to believe we were going to lose her. Mom ended up in hospital, and it was social services at the hospital who started to look at mom's condition. To cut a long story short, the home had neglected mom. They had been drugging her in the day on tamazipan and not feeding her or giving her drinks. She was neglected. There is now a police investigation into the home and mom is now in a new home, who are fantastic with her. Please make sure that any relatives in care homes are kept a close eye on. If we had lost mom we would have thought it was the disease and not neglect.
My heart goes out to all those who ever have to deal with this horrid disease, my sister, brother and I have lost my mom and my dad a loving wife, but we are unale to grieve properly because she is still here with us. We love you mom.
Can I say a big well done to Fiona for her documentary on Monday night.
My mom has Alzheimers, and has had it for 3 years or so now, 2 of these years the disease has been diagnosed. When we look back as a family though, mom could have had the disease a lot longer. Mom is in the later stages of the disease and is doubly incontinent, can't speak, feed, drink or walk.
For a long time, as a family, we have battled with all of the problems highlighted in the documentary, and I have said for a long time it needs a high profile figure to make people aware of the disease and to put pressure on the government to help.
I would like to also make people aware of another problem we have had. It took a long time to get my mom into a EMI home, which there are not many of. Mom had only been there for 6 weeks and the decline in mom's health led us to believe we were going to lose her. Mom ended up in hospital, and it was social services at the hospital who started to look at mom's condition. To cut a long story short, the home had neglected mom. They had been drugging her in the day on tamazipan and not feeding her or giving her drinks. She was neglected. There is now a police investigation into the home and mom is now in a new home, who are fantastic with her. Please make sure that any relatives in care homes are kept a close eye on. If we had lost mom we would have thought it was the disease and not neglect.
My heart goes out to all those who ever have to deal with this horrid disease, my sister, brother and I have lost my mom and my dad a loving wife, but we are unale to grieve properly because she is still here with us. We love you mom.
Only just managed to watch the programme online today, and for me it is one of the most balanced programmes I have ever seen on television about dementia.
I would now like to see a follow-on programme or three, call it a series even, (not a follow-up, but a follow-on) about the issues that were only just touched upon.
Like the £2.50 per day for medication that may/will help many people; the Centre in Croydon where they seem to be doing joined-up dementia-related thinking, bringing together all the support services that any person with dementia and his/her family may need to call upon; the support that should be out there by right, not by the need for every single person to bang their heads against the never-ending brick wall.
A brilliant introduction to dementia, that should be made compulsory viewing for every single GP, Social Worker, Support Worker, younger-generation-person who may one day ... need to wear the same shoes as Fiona, her Dad and her Mum.
Thanks. But more please of similar quality.
I would now like to see a follow-on programme or three, call it a series even, (not a follow-up, but a follow-on) about the issues that were only just touched upon.
Like the £2.50 per day for medication that may/will help many people; the Centre in Croydon where they seem to be doing joined-up dementia-related thinking, bringing together all the support services that any person with dementia and his/her family may need to call upon; the support that should be out there by right, not by the need for every single person to bang their heads against the never-ending brick wall.
A brilliant introduction to dementia, that should be made compulsory viewing for every single GP, Social Worker, Support Worker, younger-generation-person who may one day ... need to wear the same shoes as Fiona, her Dad and her Mum.
Thanks. But more please of similar quality.
I said I would not watch. Funny, Ron did, is someone tring to tell me something?
It's "BIG MOUTH" here.
For once, I am going to shut up.
You were "all", right.
I was as usual, wrong.
It was a good programme.
BarbXX
It's "BIG MOUTH" here.
For once, I am going to shut up.
You were "all", right.
I was as usual, wrong.
It was a good programme.
BarbXX
Dear Barb & Ron,
You are not always wrong. You are right in what you know Ron's needs and requirements are.
Yes it was a good programme but left me in tears.
Bye the way, have you tried your Health Centre for the Pads as Peter was given his free.
Love to you both
Christine xxx
You are not always wrong. You are right in what you know Ron's needs and requirements are.
Yes it was a good programme but left me in tears.
Bye the way, have you tried your Health Centre for the Pads as Peter was given his free.
Love to you both
Christine xxx
Hi Christine
I am booking a telephone appointment with Ron's GP tomorrow.
That is one of the questions I will be asking.
I hear the sound of snoreing, music to my ears.
Ron has had a long day today, and I will sleep, because, I have had a long day.
Barb XXX
I am booking a telephone appointment with Ron's GP tomorrow.
That is one of the questions I will be asking.
I hear the sound of snoreing, music to my ears
.Ron has had a long day today, and I will sleep, because, I have had a long day.
Barb XXX
Trev also gets his pads free Tena comfort held in place by net underpants, seem to cope best , and a kylie sheet on bed is great, they only provide 2 pads a day so i buy extra from tena at28 pounds for 50 , but they are much easier to change than the nappy stick round type which i really struggle with, these i can just slip in in seconds now. give them a try
pam
pam
Another part of the programme that I related to was when Fiona said how at one point she wanted to put a pillow over her Mums head and end the misery and suffering. I have also felt like that, its wrong I know, but thats how I felt when I sat by her bed and watched her suffering. I don't feel like that now but I can't say that I wont feel like it again. It was a brave thing for Fiona to admit to.
HI Diane
I have been there too, the disease brings out such mixed emotions in us all. In early days after diagnosis Mum had an op for a condition 1 in 3 die from. I sat that day wondering what I hoped the outcome would be. I felt bad for wanting the worst..but also the sense of relief when she pulled through was incredible.
In the latter months just wishing for it to be over.
I understand how you and Fiona feel.
Mameeskye
I have been there too, the disease brings out such mixed emotions in us all. In early days after diagnosis Mum had an op for a condition 1 in 3 die from. I sat that day wondering what I hoped the outcome would be. I felt bad for wanting the worst..but also the sense of relief when she pulled through was incredible.
In the latter months just wishing for it to be over.
I understand how you and Fiona feel.
Mameeskye
I think often if I were to get this illness would I really want my loved ones to suffer along with me and the answer is No. Thats the thing we suffer as well. It breaks my heart to see the Mum I once knew change before my very eyes even to the extent on a daily basis. What keeps us going from day to day is love and laughter and although I know the love is there, even if now she can't show it the laughter has gone. I can't remember the time Mum last laughed. It's dismel, it's depressing and makes it at times impossible to see any future other than heartache pain and suffering.
DianeB said:
I think the word for it is 'compassion'.
Although I too had the 'pillow moment', when it came down to it, there was no way I could, and that was nothing to do with it being wrong. I'd be happy to be banged up if I could help Jan out of her hell.
No, it was to do with love - there was simply no way I could help her in that way.
The situation doesn't compute though. I'd be happy if a virus helped her to peace. I simply couldn't contribute, beyond refusing 'flu jabs for her, and stating 'no resuscitation' in her notes.
When Fiona said something about her mother screaming, I felt relief that someone had the courage to say that on public TV, as I never heard that been mention before on TV, so then thought it was just my mother.
I can’t cope with the screaming anymore even thought I know that it’s the only why my mother can express her distress. I thought that stage passes , been going on years with my mother its only getting worse .
I am getting to the point that for my mother best interest that she does not live me anymore , never thought I would say that on TP, but its getting to that point now. I am not bottling up that feeling anymore . I am not being cruel .
I can’t cope with the screaming anymore even thought I know that it’s the only why my mother can express her distress. I thought that stage passes , been going on years with my mother its only getting worse .
I am getting to the point that for my mother best interest that she does not live me anymore , never thought I would say that on TP, but its getting to that point now. I am not bottling up that feeling anymore . I am not being cruel .
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