Well meaning friends

Distressed55

Registered User
May 13, 2018
67
0
Trouble is I can! Just a reminder on BBC 4 The John Wilson Orchestra is doing Bernstein's On the Town. I am raising a virtual toast to all watching.
Ooh, thanks for the reminder!

Betty Garrett and Frank Sinatra - Come up to my place - is just hilarious on film. Hopefully this version will be just as good,
 

Sisu50

Registered User
Jan 17, 2018
14
0
I looked after my mum and dad who both had dementia for three years. In the end my mum's dementia was very advanced, my father's moderate. My dad died six months ago and I consider him to be the lucky one - I consider my poor mother to be in a far worse position and I do more grieving for her than I have done for my dad. My beautiful mum is now in a home and although she receives very good care, she has absolutely no quality of life.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
T


How dare she! People have no idea what dementia is like, they just think that the sufferer gets a bit forgetful. They just don't know what really goes on.

Someone at work overheard me saying that I wanted dad to go to sleep and not wake up. Her response was that I should be grateful he was still alive. Point is, my dad really isn't alive. His body is still alive, but the person that he was has gone. I can't speak to this person now.

I know, they haven't got a clue. My dad is not too bad yet but it is still a stressful situation that I would rather not be in. I understand completely how you felt at that comment and I confess that I often feel the same because I don't want to see dad decline further and I know he would feel the same if he only knew.
 

Marnie63

Registered User
Dec 26, 2015
1,637
0
Hampshire
I was with someone yesterday who I only see every 4 months or so. She told me that someone close to her had been diagnosed with dementia. She then went on to tell me that she will live for so and so years and a few other facts. I mentioned that every person is different and no one really knows how long, what will happen to each person as it progresses, etc., etc, but she seemed adamant about the facts. Sometimes I don't have the energy to correct people or try to gently tell them that it's very much an unknown, and maybe it's not my place to do this anyway. I have to admit that I knew very little about dementia until it hit mum, so have a bit of sympathy for some folk now in that position, as I was three years ago, but I'd like to think I never made insensitive comments about dementia in the past.

I've had the lot from people over the past few years - from suggesting mum could be sectioned (not from a medical expert!) to saying "they might put her in a straitjacket". (I am no longer in touch with the person who make the second comment!).
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Another one I have heard a few times when I say my dad has dementia is 'does he still recognise you' as if that defines what dementia is. I find that very annoying.
It's like suddenly dementia appears and that's it, they have lost it all. No thought of the years of uncertainty before diagnosis and the years afterwards dealing with the progression of this horrible disease.
 

Manc70

Registered User
May 30, 2018
119
0
S. Yorkshire
That must have been upsetting disappointing and frustrating all rilled into one. I don't even think people's insensitivity is limited to dementia...I have been with a friend who has to use a wheelchair because of progressive MS and someone bluntly asked her why she is in a wheelchair and what illness she had :eek: and worse than that...they addressed me first completely bypassing my friend! She says is happens from time to time :(

I have just dead headed and tied up my beautifully big and tall sunflowers ahead of rain tomorrow. Enjoy the peace of your garden both of you
Hi @love.dad.but.. I’m sorry your friend had to go through that, people really need educating don’t they but actually it’s not rocket science, just a bit of thought and common sense.

So pleased you mentioned sunflowers, mine are just amazing this year, one being at least 6ft and a beautiful golden brown colour and attracting so many bees . We had a good hour in the garden and reading your post spurred me on to going back out and tying the sun flowers up before we have this promised rain. Take care
 

Philbo

Registered User
Feb 28, 2017
853
0
Kent
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
 

cumbria35

Registered User
Apr 24, 2017
89
0
A friend is always sending me articles about dementia. There was an article in the New York Times earlier this week.
The title was Unusual Ways of Treating Dementia.
I find things like this so frustrating. It was talking about a facility in the Netherlands with 210 patients of which 90 were being given this special care.....a drop in the bucket.
Clearly the facility has excellent palliative care for people dying of dementia. But the headline is misleading. This is not about “treatment” or “fighting the disease”. We still do not have treatments that restore people enough to function with independence. A less stressed and peaceful environment is of course a very good thing. But staring at pictures of nature on my ceiling does not seem much of a life and is not a treatment but rather comfort care.

I get upset when people send me this stuff.
I told my husband family years ago to quit sending me stuff about cures and care....they stopped.
Angry at the NYT as the writer does not know the difference between fighting the disease and managing the disease. Ignorance is everywhere.
Upset that my friend does not realize that after 16 years I am doing whatever I can to relieve the stress and anxiety in my hubby's life . This information is not new to me.

Oh, well once again it is about acceptance. People do what they want or can to make themselves feel better. She thinks it is helpful, and caring but it is annoying. I guess I should tell her.

Being helpful to me requires action. I have a young expatriate woman friend who is alone here in Basel. She is having a minor operation next week and will have a day surgery. But she will have a long weekend at home to recover. So, I am making her some frozen prepared meals to give her. Yesterday, I made braized meatballs, Delia Smith recipe I love, today I will make enchiladas (i prepared the sauce yesterday so one step in the process completed) and tomorrow, I will make a chicken spinach savory bread pudding. Her dad died two years ago of cancer and her mom died last month after about 7 years of dementia.

This afternoon I will practice guitar and sing with a friend. And dinner out at friends house tonight with hubby.

Just have to keep on keeping on.....find those moments of joy and pleasure. Move off anger.
This says it all about well meaning friends and their suggestion.
 

cumbria35

Registered User
Apr 24, 2017
89
0
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
 

cumbria35

Registered User
Apr 24, 2017
89
0
I understand where you are coming from, at a family gathering for my 80th. Birthday my husband was upset thinking he had brought a card, my birthday was not for another three days and we would be at home with friends. My daughter also made the remark’ it will only get worse’. Not at all helpful, quiet tears in bed later.
 

Distressed55

Registered User
May 13, 2018
67
0
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
That's just breathtakingly awful. How on earth could anyone think that is an appropriate thing to say?? Well done for not punching him - not everyone would have had your self-control.
 

PalSal

Registered User
Dec 4, 2011
972
0
Pratteln Switzerland
That's just breathtakingly awful. How on earth could anyone think that is an appropriate thing to say?? Well done for not punching him - not everyone would have had your self-control.
Sadly, your BIL is a thoughtless oaf....your poor sister.
I am so grateful that I have a lot of experience living in the here and now....a 24 hour program. I am sure it has allowed us to co exist (or manage) the disease for such a long time. So glad you are all here on Talking Point.
We just had an amazing day. We got up to bright blue skies but not hot weather. Cool. Headed into the city to hear Avi Avital the Israeli mandolin virtuoso with some of the string section of Sinfonieorchester Basel in the beautiful old part of the city, in the courtyard of the Cultural museum. It was a free concert. He played, Vivaldi, and Bella Bartok and more ...but I cannot remember...a Georgian composer, so that Russian sound and an Italian composer. It was spectacularly beautiful. Because I called a number of our friends ahead of time, three couples who are all very dear to us showed up. Then we had coffee together afterwards. Then Nick and I walked for 2 hours, most of the way home. So, such a lovely day. My son comes on Sunday evening to give make dinner and do an evening walk and night time routine, I will head off to my weekly community work.
I am just so happy to have such a lovely life, and so glad to be aware and awake for the good times....which keep me going on the really bad days!!!
 

love.dad.but..

Registered User
Jan 16, 2014
4,962
0
Kent
Sadly, your BIL is a thoughtless oaf....your poor sister.
I am so grateful that I have a lot of experience living in the here and now....a 24 hour program. I am sure it has allowed us to co exist (or manage) the disease for such a long time. So glad you are all here on Talking Point.
We just had an amazing day. We got up to bright blue skies but not hot weather. Cool. Headed into the city to hear Avi Avital the Israeli mandolin virtuoso with some of the string section of Sinfonieorchester Basel in the beautiful old part of the city, in the courtyard of the Cultural museum. It was a free concert. He played, Vivaldi, and Bella Bartok and more ...but I cannot remember...a Georgian composer, so that Russian sound and an Italian composer. It was spectacularly beautiful. Because I called a number of our friends ahead of time, three couples who are all very dear to us showed up. Then we had coffee together afterwards. Then Nick and I walked for 2 hours, most of the way home. So, such a lovely day. My son comes on Sunday evening to give make dinner and do an evening walk and night time routine, I will head off to my weekly community work.
I am just so happy to have such a lovely life, and so glad to be aware and awake for the good times....which keep me going on the really bad days!!!
What a lovely day that sounds and to meet up as well with friends who just take the dementia day as it comes... a wonderful bonus.
 

PalSal

Registered User
Dec 4, 2011
972
0
Pratteln Switzerland
Don’t you find some people, even family , think Alzheimer’s is just about “being forgetful “? They’re not the ones who have to put up with mood swings, hiding thinks,....I could go on and on.
But even I had to laugh yesterday, OH wanted to iron some money as he said no one would accept it with creases in it!
Thanks for the giggle Jane M.
 

Hazara8

Registered User
Apr 6, 2015
697
0
A friend is always sending me articles about dementia. There was an article in the New York Times earlier this week.
The title was Unusual Ways of Treating Dementia.
I find things like this so frustrating. It was talking about a facility in the Netherlands with 210 patients of which 90 were being given this special care.....a drop in the bucket.
Clearly the facility has excellent palliative care for people dying of dementia. But the headline is misleading. This is not about “treatment” or “fighting the disease”. We still do not have treatments that restore people enough to function with independence. A less stressed and peaceful environment is of course a very good thing. But staring at pictures of nature on my ceiling does not seem much of a life and is not a treatment but rather comfort care.

I get upset when people send me this stuff.
I told my husband family years ago to quit sending me stuff about cures and care....they stopped.
Angry at the NYT as the writer does not know the difference between fighting the disease and managing the disease. Ignorance is everywhere.
Upset that my friend does not realize that after 16 years I am doing whatever I can to relieve the stress and anxiety in my hubby's life . This information is not new to me.

Oh, well once again it is about acceptance. People do what they want or can to make themselves feel better. She thinks it is helpful, and caring but it is annoying. I guess I should tell her.

Being helpful to me requires action. I have a young expatriate woman friend who is alone here in Basel. She is having a minor operation next week and will have a day surgery. But she will have a long weekend at home to recover. So, I am making her some frozen prepared meals to give her. Yesterday, I made braized meatballs, Delia Smith recipe I love, today I will make enchiladas (i prepared the sauce yesterday so one step in the process completed) and tomorrow, I will make a chicken spinach savory bread pudding. Her dad died two years ago of cancer and her mom died last month after about 7 years of dementia.

This afternoon I will practice guitar and sing with a friend. And dinner out at friends house tonight with hubby.

Just have to keep on keeping on.....find those moments of joy and pleasure. Move off anger.


It would be wrong to dismiss much which has been set down about dementia and ways by means to alleviate its varied traits in the act of caring. A great deal of 'help' has been borne out of direct experience coupled to the ways in which this disease attacks and inhabits the brain itself. I have read so much about the brain and dementia and various papers and research texts, so as to feel almost an authority - which I am most certainly not! But I agree profoundly with your sentiments. The 'reality' of caring for a loved one with dementia is the story, from the very first chapter until the end. In that story comes such a varied and unexpected series of outcomes, often hurtful, often obscure and often deeply affecting. We can apply some of the accepted 'rules' in much the same way as we do in everyday life. Politeness, kindness, common good manners and respect, because without these we are lost. But what goes way beyond these is the ability to sustain a way of life which is constantly challenged at each moment, by the very nature of a disease, termed dementia, which throws at you an unremitting pattern of opposition, manifest in obscure and often aggressive behaviour, confusion, perhaps physical violence, only to transform into calm, lethargy, and maybe, just maybe, that precious lucid moment when all seems to be well in the world. No book, no research paper can portray the reality of dementia care. They can explain the neurology, they can tell you which part of the brain is being compromised, damaged. They can like a doctor with his patient, explain why there is this pain or that rash or why an atrophied brain creates the physical outcome it does and why the hippocampus might be the first call in diagnosing a 'memory loss' and the study of a scan will focus on a possible causation and so on and so forth. All of this matters, is credible and important. But we, as carers, don't have any truck with any of that. We sit across from our loved one, the person we have known for perhaps a very long time indeed,and we are witness to a profound change in that person. A change which is a life-sentence for that person, an indirect life-sentence for a carer, spouse or partner. A change which embraces every single breathing moment of your life, even whilst you sleep, because it is there, somewhere deep down inside your own very brain, the way in which this change has also changed your life. And when things are bad, as they can be, they are truly bad. Unlike a broken leg, or even a general disease, which can be understood and borne as best one can, dementia is none of these things. It is a mystery, an antagonist, devoid of your feelings, a manipulator of the one you love, making them behave in a way alien to you and to them. It claims the life of the one you love for its own and there is nothing you can do about it. Other than call upon the one thing that it is not - love. And that love, which is not the love of pleasure, but another love which goes beyond all self, will touch the one you love as surely as the glimmer of daybreak will come day after day, over a horizon which will always be there. That is a truism. And time and time again, when you see one hand take hold of another, for comfort, there is humanity in progress and despite dementia, that 'comfort' is real and cannot be denied by dementia.

And so, yes, we do not really look to the outside world for things we are actually living , tears and all. When a cure comes about,, we will rejoice and rejoice all the more vocally, because we have 'been there' and survived - just.
 

Grahamstown

Registered User
Jan 12, 2018
1,746
0
84
East of England
@Hazara8 This description certainly chimes with my experience and I find it very comforting in a strange way. Physical illness is just as stressful but, and it’s a big but, the person suffering doesn’t necessarily have dementia and is perfectly sound of mind. We read accounts all the time about living, and dying, with cancer for example, sometimes on and off for years, which are painful to read. Living with a PWD is living hell because of the loss of mind, and caring for such a person is so tough. We all deserve hugs to comfort us.
 

PalSal

Registered User
Dec 4, 2011
972
0
Pratteln Switzerland
@Hazara8 This description certainly chimes with my experience and I find it very comforting in a strange way. Physical illness is just as stressful but, and it’s a big but, the person suffering doesn’t necessarily have dementia and is perfectly sound of mind. We read accounts all the time about living, and dying, with cancer for example, sometimes on and off for years, which are painful to read. Living with a PWD is living hell because of the loss of mind, and caring for such a person is so tough. We all deserve hugs to comfort us.
Sending hugs your way!!