And me too.Like Pickles53 I have often marvelled at the things many cares do.I wasn't able or tbh willing to give up my job or my life.But I did the best I could.And I'm pretty sure Ian Botham did the best HE could.It's all anyone can do.
Ian Botham!
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Yes - what Lynne has said and Pickles comments really resonate with me.
Not everyone can care 24/7, and I think that sometimes on TP comments are too judgemental on those that can't or won't.
My mum, when I moved her into sheltered extra care was very concerned about all the time she was taking up, I work part time, I have 2 children, and in reality the most demanding bit of my time - I have a daughter racing at National standard, which like it or not takes up a lot of time (I was told by a friend that I should give up work 5 years ago as running dau around was going to take up so much time). I don't go to see my mum every week, but I only saw her 6 times a year before she lived near me, and then when she visited she looked after children at the weekend so I had time to myself. Children are older, so don't miss this but she is aware enough to understand and not like the time (ie feel guilty) she is taking from me and my children.
I could never do personal care for her, I think many many children couldn't do that for their parents, how I will be when she forgets who I am, I don't know.
I can't judge IB for what he said, he was being honest, fairly rare from a celeb.
I suspect many shy away from TP due to the overwhelming appearance that many are caring so intensely for their parents and partners and perhaps is something that should be considered by both posters and moderators in comments made on threads.
Making sure someone is in a good care home, and that the carers look after them well is more important than weekly visits, which truth be told, might create anxiety taking them out of their familiar routine.
Interesting that the alzheimers society have just said that he isn't an ambassador! They have edited their post on Facebook perhaps because of the hundreds of upset posts from people living with dementia and their carers worried about the negative message the article put across.
My comment was not judgemental, I totally accept his comment and his right to make his own decision, especially as I have no knowledge of his relationship with his father.
However, I also know whom I feel able to respect and cannot manufacture it from nowhere.
A part of me wonders how his father felt as we do not have insight into the minds of those with dementia and they are often unable to communicate their fear when alone but that doesn't mean they do not feel it.
I know I could not have abandoned my mother nor my husband in their time of need but that doesn't mean that others have to feel the same and obviously they don't.
However, I also know whom I feel able to respect and cannot manufacture it from nowhere.
A part of me wonders how his father felt as we do not have insight into the minds of those with dementia and they are often unable to communicate their fear when alone but that doesn't mean they do not feel it.
I know I could not have abandoned my mother nor my husband in their time of need but that doesn't mean that others have to feel the same and obviously they don't.
I can't see my husband visiting his mother if/when she is in a home, he won't be doing anything to help her stay at home either I shouldn't imagine, it doesn't mean he doesn't care, more that she hasn't over the years.
However his mum will likely be saying to her friends she can't understand why he doesn't visit more than he currently does (once a year if that - she is 90 and fully independent). She had told her friend she was very hurt by his brothers refusal to visit, as this friend wanted us to try and sort it out. I snorted that the only one entitled to be hurt was his brother, and we explained some family history, enough for the friend to shut up, and understand brother was not at fault.
(OH prefers my mum's company despite her dementia, and feels she actually cared for him more than his own mum did)
No one knows the way a parent treated their children, either as children or adults, apart from the people involved, so we really shouldn't judge.
We don't know what Ian Botham's mother or children's opinion was and maybe they were getting very upset when they visited so he thought he was doing the right thing with what he said.
However his mum will likely be saying to her friends she can't understand why he doesn't visit more than he currently does (once a year if that - she is 90 and fully independent). She had told her friend she was very hurt by his brothers refusal to visit, as this friend wanted us to try and sort it out. I snorted that the only one entitled to be hurt was his brother, and we explained some family history, enough for the friend to shut up, and understand brother was not at fault.
(OH prefers my mum's company despite her dementia, and feels she actually cared for him more than his own mum did)
No one knows the way a parent treated their children, either as children or adults, apart from the people involved, so we really shouldn't judge.
We don't know what Ian Botham's mother or children's opinion was and maybe they were getting very upset when they visited so he thought he was doing the right thing with what he said.
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There is an interview with him in this morning's Guardian;he,says his father's illness took years off his mother's life,didn't give the impression that she didn't visit him.I told my kids not to visit their Grandad towards the end mainly because I knew he would have hated them to see him as he was.
You see for me this is what I struggle with. My mother watched her sister and sister-in-law suffer and used to say "I'd rather be dead than live like that." It's very hard to 'unhear' comments said so often by one's mother, over many years, now seeing her living 'her own worst nightmare'.
In the early-mid and even early-late stages it is perhaps not so distressing and from what I gather very few people reach the stage my relatives have, when it is just 'functioning' with no interaction with life, sporadically punctuated by 'emergencies'.
I do still visit once a month but find it so distressing and sometimes wonder even if just holding her hand I am 'passing on' those bad vibes to her- it's just she no longer reacts to anything, but that doesn't mean to say she is not being distressed and so my visiting is actually 'not a blessing' for her?
I think a number of us here on TP could vouch for the lucid moments Kassy.
He didn't see his father for 6 months so he wouldn't know that.
My husband didn't know who I was one day, another I was the doctor, carer or anyone but sometimes I was the person he loved.
At all times, I was the person who could reassure him that he was safe.
He didn't see his father for 6 months so he wouldn't know that.
My husband didn't know who I was one day, another I was the doctor, carer or anyone but sometimes I was the person he loved.
At all times, I was the person who could reassure him that he was safe.
Whereas I have done the opposite and said to my children, just find somewhere safe and then get on and lead your own lives.
I think most of us would acknowledge that yes there are lucid moments, but it's often the carers who get them and the chances of those occurring concurrent with a visit become less as they deteriorate into the most severe stages.
For me during the past 3 years my mother has only once had a 'lucid' moment during a visit. It is also one which haunts me. She seemed to respond to the room (not a usual occurrence) and look round and then say in a very, loud cross voice (in someone who hadn't generally doesn't spoken in that time or not clearly enough to recognise as a word) "NO!"
To me , knowing her as I do, she seemed to be saying , "I don't like this / don't want to be here / how dare you put me in here!" type statements, all with that one word.
That was more than 2 years ago and I struggle with how much she may be suffering during those lucid moments when I'm not there. They may not occur very often as generally she's just apathetic, but if she has those lucid moments, she must feel so frightened, having watched relatives at this stage.
I think most of us would acknowledge that yes there are lucid moments, but it's often the carers who get them and the chances of those occurring concurrent with a visit become less as they deteriorate into the most severe stages.
For me during the past 3 years my mother has only once had a 'lucid' moment during a visit. It is also one which haunts me. She seemed to respond to the room (not a usual occurrence) and look round and then say in a very, loud cross voice (in someone who hadn't generally doesn't spoken in that time or not clearly enough to recognise as a word) "NO!"
To me , knowing her as I do, she seemed to be saying , "I don't like this / don't want to be here / how dare you put me in here!" type statements, all with that one word.
That was more than 2 years ago and I struggle with how much she may be suffering during those lucid moments when I'm not there. They may not occur very often as generally she's just apathetic, but if she has those lucid moments, she must feel so frightened, having watched relatives at this stage.
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A lot also depends on the pattern of visits prior to dementia. My husband left his home town at eighteen and is now 63. He visited three or four times a year, and sees no reason to up that now his mother is in a CH. Others may think that's not often enough. He, on the other hand, does, and really it's no-one else's business.
Lemonjuice - thank you so much for posting, I find the tone on some of this thread very attacking, we all have to do what we can cope with.
I do fully understand those that visit, but I do think everyone has the right to not visit if that is what they want to do and not be attacked or criticised for it.
I think that TP should support people's choices, even if they are different to what they would do, not criticise other's choices when they are doing their best.
Having a different opinion doesn't constitute an attack or criticism and I certainly have not intended any. I also have restricted my posts to Ian Botham and have not commented on anyone else's choices.
I just feel for those dementia sufferers who might feel scared and lonely and in need of reassurance that they are still loved. Perhaps it's my age!
We were told 2 weeks ago that mum was entering the final days of her battle with dementia. She is in a lovely care home and I have no worries about her care there. For the first time I could see why some people would choose to say their goodbyes at that point.
We haven't made that choice and will continue to be there but I think that's more for us than for mum who is no longer responding to anyone.
I know nothing about Ian Botham's journey with his father's dementia but I think once we have ensured that our loved one is safe and cared for, whatever else we do is a personal decision. Today I took the decision to spend a few hours away.
I know my mum would be quite cross at me sitting by her bedside over the next few days/hours (especially if that means me missing work).
We haven't made that choice and will continue to be there but I think that's more for us than for mum who is no longer responding to anyone.
I know nothing about Ian Botham's journey with his father's dementia but I think once we have ensured that our loved one is safe and cared for, whatever else we do is a personal decision. Today I took the decision to spend a few hours away.
I know my mum would be quite cross at me sitting by her bedside over the next few days/hours (especially if that means me missing work).
Thank you for that honesty.
Having sat by my mother's ' potential dying bedside' quite a few times these past 3 years I know that sometimes with dementia they can show all the signs of being in the final stages for several years and each 'incident' could be the 'final one', but also may not, as some have a remarkable resilience to 'fight through'. Even my mothers NH can't believe how she comes through so many emergencies and said 2 years ago they thought she definitely couldn't survive another 12 months. That was coming up 2 years ago next month.
So sometimes you just have to take a break, as long as you know you have no unfinished thoughts, deeds or words and that they are in good hands.
Absolutely. It's such an intense situation and really each family and individual will make the best decision they can. So much will depend on the family dynamics before dementia comes along. Not all people with dementia were saints with perfect family relationships. My brother had little contact with any of us for years. I wrote to him when mum was diagnosed and he did visit a few times but I haven't heard from him since her funeral and don't expect to. There was no big row and I don't suppose I'll ever know why, but it is what it is.
I totally admire those who are able to do the things I couldn't. Personal care for mum would have been my absolute red line, and I know she would have hated that too. But in no way would I criticise anyone who makes a different decision; it only matters that it's the right decision for them.
Hi everyone,
The moderation team has made the decision to close this discussion, as it has now run its course.
If anyone has any questions about this, please email talkingpoint@alzheimers.org.uk
The moderation team has made the decision to close this discussion, as it has now run its course.
If anyone has any questions about this, please email talkingpoint@alzheimers.org.uk
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