That's not a real friend in my eyes. Didn't we all think that we would be capable of looking after our loved ones til the end? I know I did, but that was before dementia reared its ugly head. No one understands until they have first hand knowledge of living with the challenges of dementia as a carer.
Well meaning friends
- Thread starter PalSal
- Start date
That we do @Grahamstown my dad has cancer and dementia. I can cope with the cancer but the dementia just complicates everything and dad thinks he is perfectly well which is very difficult to deal with.
People seem to think that it is some kind of blessing to have dementia at the same time as cancer because forgetting you have cancer must be good but it's not it just makes it harder.
I can fully appreciate how that makes things even harder. I was explaining to a friend how I never imagined having to hold medical frightened dad down to have his BP taken or a cafeter fitted or bloods taken etc...she said that at least with dementia he wasn't aware! Really...I have just explained how frightened dad was and pre dementia dad would have totally said... well of course take my bp..fit a cafeter..take bloods etc. Not being aware enough to be able to understand made these necessary tasks at times of emergency so distressing for us both.
My parents are in homes now, my mum has been very difficult recently and is considered to have capacity. My neighbour asked me how she was yesterday, I explained that mum may have already changed her will, and that now she wants me to relinquish my POA so that she can deal with her own finances, which she is incapable of doing. My neighbour said that mum can't do that, I explained that she can because she is regarded to have mental capacity. Her reply? She can't have dementia then! I didn't go into further explanation.
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Quite so. And living with a PWD is, in many ways, as close as one might come to a relationship with what it truly means to be a human being. In as much as it, for the most part, negates trivia and ego and leaves one very open to self-awareness, with all its intricate mysteries.
With good wishes.
When my husband was first diagnosed with dementia, he started losing is speech and getting sentences muddled up. A well meaning, but no longer a friend, bossily said "we wondered why he was speaking gobbly-goop". It was so distressing I felt like hitting her. Talk about no tact.
The supposedly highly experienced dementia second live in carer I tried for dad told me..in front of dad...that he talked rubbish so it was too difficult to converse with him!
she had only been there 5 days and I already had some concerns in other areas...I spoke to her agency ..dismissed her immediately ..followed up with a written complaint to them and reported my concerns to CQC. I was told a few days later that she had been suspended by the agency although they defended her initially much to my disappointment.In fairness (and to clarify), my BIL is a really nice bloke and this was right at the start of our "dementia journey" over 4 years ago. Like a lot of folk, I just don't think he thought about what he was saying and they have been fairly supportive since.
My skin has got considerably thicker over the last few years, which is I guess a bit of a defence mechanism. Just occasionally something, be it a remark or something on TV, will pierce that thick skin and the tears come - usually in the quiet of my own home.
I am off abroad on holiday on Thursday for a week, with my mate and his wife, to celebrate his 50th. My wife is going for a respite stay at the Integrated Care Centre where she goes one day a week for day care. It's the first time we have been separated (apart from when I used to go away with work) so I have very mixed feelings about it. I know she will be fine but I am still apprehensive.
I am hoping that the break will "top my batteries up", providing I survive the birthday celebrations in Magaluf!
I am sure all will be fine and a good break for you is needed. Have a lovely timeIn fairness (and to clarify), my BIL is a really nice bloke and this was right at the start of our "dementia journey" over 4 years ago. Like a lot of folk, I just don't think he thought about what he was saying and they have been fairly supportive since.
My skin has got considerably thicker over the last few years, which is I guess a bit of a defence mechanism. Just occasionally something, be it a remark or something on TV, will pierce that thick skin and the tears come - usually in the quiet of my own home.
I am off abroad on holiday on Thursday for a week, with my mate and his wife, to celebrate his 50th. My wife is going for a respite stay at the Integrated Care Centre where she goes one day a week for day care. It's the first time we have been separated (apart from when I used to go away with work) so I have very mixed feelings about it. I know she will be fine but I am still apprehensive.
I am hoping that the break will "top my batteries up", providing I survive the birthday celebrations in Magaluf!
Many thanks. I shall try my best.
Shame the forum doesn't have a "Thanks" button?
How terrible. I just had one saying that people are building six foot fences to keep 'them' in! It came in an email so I could ignore the utter ignorance. Some times these remarks when out of the blue really hurt. Take great care of yourselves.When my wife was first diagnosed 4+ years ago, people's comments used to annoy or upset me.
"Oh you know it's only going to get worse" or "she will eventually have to go into care" are just a couple of examples that I am sure many of you have come across also.
Just before her actual diagnosis (we had already been advised that this was likely), we were at a New Years Eve dinner/dance with one of her sisters and BIL. As the new year arrived and we were all hugging etc, my BIL said "Happy New Year, shame the future will be so bleak for you"!!
I could have punched his lights out - instead I slowly walked my dear wife home - luckily in the darkness, she couldn't see the tears streaming down my face.
I have become more resilient now but some comments, however well meant, can still be hard to ignore.
Phil
One of my husband’s friends said to me that he was very concerned that his immense contribution to their work should not be forgotten because he was starting to forget things. He was anxious that other people should not forget that, and if he showed memory loss, protect him. I thought that was a very positive and wonderful thing to say, and unlike the sometimes unkind glances that certain members of the family exchange when he says the same old thing over and over again. Looks can be just as painful as words. I may have to treat him like a child sometimes to overcome some of the difficulties of dementia, e.g. following instructions, reminders to take pills or stop him doing things that harm him but that doesn’t mean belittling him or his achievements in his life.
I was at my friend's house the other day when her husband walked up the yard with a very heavy sack of dog food on his back. I shouted hello, how are you? "Living The Dream, Living The Dream" he grunted.
I'm using that phrase now when so called friends who never visit or offer help ask me how I am........!
I'm using that phrase now when so called friends who never visit or offer help ask me how I am........!
This was an appropriate thread - I phoned a ‘friend’ yesterday for a chat and she never once asked how we were. She told me chapter and verse about her house move coming up.
I didn’t want to offload, just a nice chat and she wanted to meet for lunch - I suggested a coffee and that I would have to bring my OH to which she replied- oh no , I wanted to have a good chat !!!!!!! Then she told me how upset she was when a friend had dementia and couldn’t bear to visit because she got too upset.
Needless to say she is now off my Christmas list
I didn’t want to offload, just a nice chat and she wanted to meet for lunch - I suggested a coffee and that I would have to bring my OH to which she replied- oh no , I wanted to have a good chat !!!!!!! Then she told me how upset she was when a friend had dementia and couldn’t bear to visit because she got too upset.
Needless to say she is now off my Christmas list
Quite right..actually she was probably self centred all along just that it is now highlighted. We all have had some friends like that...I have distanced myself from 2 over the years before dad's dementia whose conversation was always about them. Some people are just like that sadly.This was an appropriate thread - I phoned a ‘friend’ yesterday for a chat and she never once asked how we were. She told me chapter and verse about her house move coming up.
I didn’t want to offload, just a nice chat and she wanted to meet for lunch - I suggested a coffee and that I would have to bring my OH to which she replied- oh no , I wanted to have a good chat !!!!!!! Then she told me how upset she was when a friend had dementia and couldn’t bear to visit because she got too upset.
Needless to say she is now off my Christmas list
Intellectually I understand when people just don't know but I often find it difficult and/or annoying when they don't. I will promptly educate them, whether they want it or not.
The things said I find most upsetting/ annoying are "Does she know you?" this asked at the very beginning of Mum's illness when she most certainly did and Alzheimer jokes. Oddly enough, I don't mind comic references made by others who I know are dealing with dementia, it's just the world at large. You know, comments like "Oh I'm having an Alzheimer moment". For some reason, people who call AD "Old-timers Disease" induce a nasty state of rage in me.
The things said I find most upsetting/ annoying are "Does she know you?" this asked at the very beginning of Mum's illness when she most certainly did and Alzheimer jokes. Oddly enough, I don't mind comic references made by others who I know are dealing with dementia, it's just the world at large. You know, comments like "Oh I'm having an Alzheimer moment". For some reason, people who call AD "Old-timers Disease" induce a nasty state of rage in me.
@Canadian Joanne ...My pet hate.... “But he looks alright he’s smiling and chatting “ ... I do appreciate people just don’t always understand but please think before you speak. Stay strong A x
PS..the smiling is fine but the chatting could be just about anything really or perhaps nothing at all
Well, I had a better one than that. When my OH was first diagnosed his younger sister who had never been to our house in 23 years, appeared 3 times in as many weeks! The last time, about 15 months ago, she said “oh, he seems to be getting better” She’s never been since. Oh, I made my feelings known, and then of course, spend a good while having a little weep. But hey, it’s a case of pick yourself up, dust yourself down and start all over again. X@Canadian Joanne ...My pet hate.... “But he looks alright he’s smiling and chatting “ ... I do appreciate people just don’t always understand but please think before you speak. Stay strong A x
PS..the smiling is fine but the chatting could be just about anything really or perhaps nothing at all
Hey Philbo,In fairness (and to clarify), my BIL is a really nice bloke and this was right at the start of our "dementia journey" over 4 years ago. Like a lot of folk, I just don't think he thought about what he was saying and they have been fairly supportive since.
My skin has got considerably thicker over the last few years, which is I guess a bit of a defence mechanism. Just occasionally something, be it a remark or something on TV, will pierce that thick skin and the tears come - usually in the quiet of my own home.
I am off abroad on holiday on Thursday for a week, with my mate and his wife, to celebrate his 50th. My wife is going for a respite stay at the Integrated Care Centre where she goes one day a week for day care. It's the first time we have been separated (apart from when I used to go away with work) so I have very mixed feelings about it. I know she will be fine but I am still apprehensive.
I am hoping that the break will "top my batteries up", providing I survive the birthday celebrations in Magaluf!
Enjoy the celebrations.
Totally agree...I was absolutely adamant and said so vocally to friends who suggested in a kind way that for my health and to look after my OH who had then recently been diagnosed with a seeious illness...even so...there was no way he would ever be looked after in a home. Then the decline...the increasing challenges...the cruel reality.....all of it imploded and I had to agree with them that in my early days of naivity of what was to come...they were right.
