So True but so hard to do! - (unless you are a saint)

[kindred]

I have absolutely no idea where that came from! There is a slight family connection with Germany, but that's all. I wish that I'd been more quick witted, and used @karaokePete's line about being a spy. Instead I tried the 'someone has stolen my identity' thing. It did not go well....!

Yes, @kindred , Married to the Mob was a film with the lovely MIchelle Pfeiffer in. Maybe you reminded your OH of her?

I'm glad that I posted about the German thing. I've just come from a not wonderful visit to dad in the NH, and combined with venal siblings, I've not had the very best day. But it's reminded me that even dealing with this wretched disease and the awful situation that we all find ourselves in, there is still humour to be found.

My darling, what an amazing expression venal siblings - I am so sorry, sound awful. Ah yes, and the gorgeous Matthew Modine? (in the film I mean, not the venal siblings). I am so sorry visit not wonderful, but yes, there is humour. Thank you so very much. with love, Kindredxxxxx

 

[Grahamstown]

That is a very fair comment. These 'rules' are often borne out of long-term experience and thus demand the appropriate respect. Engaging with 'dementia' continuously can be one of the most demanding of acts - especially when we consider the one-to-one situation at home, as is so often cited here on TP. My own experience was with my late mother and was enabled in terms of 'care', by the fact that we had a wonderful loving relationship from the very start. Many people do not enjoy such a relationship and it must be extremely difficult to apply 'rules' as an ongoing regime, without moments of despair, frustration, anger and so on. The fundamental in all of this, rests with the nature of dementia as it presents in a loved one. Each and every case will be different. But the process, the 'change' in the brain remains the elusive factor and is a reality. The change or degradation of capacity, the way in which a dementia person perceives the world and what is taking place at each and every waking moment, is a mystery. Their 'behaviour' is an indication, a communication if you will, however bizarre, antagonistic, strange or unpredictable. After a time, you see a 'pattern' in this behaviour, albeit varied, as are the many 'dementias'. And then you see what works, as a rule. "Yes" can mean "No". "I had my breakfast" is followed by "When do I have breakfast?" "What time is it?" might be asked twenty times within ten minutes. A trip to the shops to buy some groceries, can be as 'real' to the person relating it, as the cup of tea in their hand - despite it being a 'fantasy' to us, as carer, as observer. And so, some of the well versed 'rules' can be utilized as a matter of course, depending on the situation. At the end of the day, dementia is complex, as is the brain itself - extraordinarily so.

Caring within a controlled environment (Care Home) is also very demanding, if you are to adopt the person-centred care which is really an imperative. Carers of long-standing, good carers with integrity and compassion, can make mistakes. The tone of voice, the posture adopted, the delay in response and so on - these can evoke distress, anger, fear, mistrust et al. And so, one has to go beyond 'commandments', however constructive and effective these can be. You enter another world and you remain there for the duration. If you falter, then that can be a problem. This means enormous reserves of energy, empathy, compassion and AWARENESS. All of this, embraced in love. And if you ever witness the desperate and heart-rending sobs of a human being immersed in a world which has no meaning, no respite, no handle onto which to grab, nothing - but simply the open hand of another, to take hold of and cling to, in order to feel safe and wanted and protected - then you can understand why Care means more than the word, more than is usually considered and much more than is, alas, so often perceived as Care in this all so frantic world.

This is a thoughtful and helpful article about compassionate communication which so many of us seem to find difficult to put into practice even if agreeing with it or not. Being able to do it 24/7 is the challenge that I fail many many times. Seeing it being effective in action is the acid test so that must be the standard in CHs. At home alone non stop is a huge challenge which most of us are doing. After every bad moment I gird up my loins and carry on.

 

[Starbright]

This is a thoughtful and helpful article about compassionate communication which so many of us seem to find difficult to put into practice even if agreeing with it or not. Being able to do it 24/7 is the challenge that I fail many many times. Seeing it being effective in action is the acid test so that must be the standard in CHs. At home alone non stop is a huge challenge which most of us are doing. After every bad moment I gird up my loins and carry on.

So true Grahamstown...I do the same, “it’s a challenge” ...when people ask how he is I used to say that ..but now when they say “but he looks so well you just wouldn’t know he’s lost his memory” Arrrgh!!! ...I say “ that’s the nature of this disease “... I know people mean well but really until you care for someone with this vile dementia how can you know?? “Hugs” stay strong A x

 

[Starbright]

That is a very fair comment. These 'rules' are often borne out of long-term experience and thus demand the appropriate respect. Engaging with 'dementia' continuously can be one of the most demanding of acts - especially when we consider the one-to-one situation at home, as is so often cited here on TP. My own experience was with my late mother and was enabled in terms of 'care', by the fact that we had a wonderful loving relationship from the very start. Many people do not enjoy such a relationship and it must be extremely difficult to apply 'rules' as an ongoing regime, without moments of despair, frustration, anger and so on. The fundamental in all of this, rests with the nature of dementia as it presents in a loved one. Each and every case will be different. But the process, the 'change' in the brain remains the elusive factor and is a reality. The change or degradation of capacity, the way in which a dementia person perceives the world and what is taking place at each and every waking moment, is a mystery. Their 'behaviour' is an indication, a communication if you will, however bizarre, antagonistic, strange or unpredictable. After a time, you see a 'pattern' in this behaviour, albeit varied, as are the many 'dementias'. And then you see what works, as a rule. "Yes" can mean "No". "I had my breakfast" is followed by "When do I have breakfast?" "What time is it?" might be asked twenty times within ten minutes. A trip to the shops to buy some groceries, can be as 'real' to the person relating it, as the cup of tea in their hand - despite it being a 'fantasy' to us, as carer, as observer. And so, some of the well versed 'rules' can be utilized as a matter of course, depending on the situation. At the end of the day, dementia is complex, as is the brain itself - extraordinarily so.

Caring within a controlled environment (Care Home) is also very demanding, if you are to adopt the person-centred care which is really an imperative. Carers of long-standing, good carers with integrity and compassion, can make mistakes. The tone of voice, the posture adopted, the delay in response and so on - these can evoke distress, anger, fear, mistrust et al. And so, one has to go beyond 'commandments', however constructive and effective these can be. You enter another world and you remain there for the duration. If you falter, then that can be a problem. This means enormous reserves of energy, empathy, compassion and AWARENESS. All of this, embraced in love. And if you ever witness the desperate and heart-rending sobs of a human being immersed in a world which has no meaning, no respite, no handle onto which to grab, nothing - but simply the open hand of another, to take hold of and cling to, in order to feel safe and wanted and protected - then you can understand why Care means more than the word, more than is usually considered and much more than is, alas, so often perceived as Care in this all so frantic world.

I read all your posts and have tried to-learn from them and I’m hoping I have ....there’s a comfort in what you write thank you so much A x

 

[Grahamstown]

So true Grahamstown...I do the same, “it’s a challenge” ...when people ask how he is I used to say that ..but now when they say “but he looks so well you just wouldn’t know he’s lost his memory” Arrrgh!!! ...I say “ that’s the nature of this disease “... I know people mean well but really until you care for someone with this vile dementia how can you know?? “Hugs” stay strong A x

Absolutely true and very appropriate today because a friend is going to lunch with him, he didn’t want to go and felt anxious and stressed and asked what he could talk about. He has gone off happily and his old friend will take him home so that I don’t have to rush about to get back to him. We are so glad to have such a good friend too.

 

[kindred]

This is a thoughtful and helpful article about compassionate communication which so many of us seem to find difficult to put into practice even if agreeing with it or not. Being able to do it 24/7 is the challenge that I fail many many times. Seeing it being effective in action is the acid test so that must be the standard in CHs. At home alone non stop is a huge challenge which most of us are doing. After every bad moment I gird up my loins and carry on.

Now, this does not come from compassionate wotsit, but the one thing in my communication that made a difference was to praise everything with the expression Good man!! I'm still doing it in Keith's nursing home and I notice the staff doing it now, good man or good woman! Gxxxx

 

[Starbright]

Absolutely true and very appropriate today because a friend is going to lunch with him, he didn’t want to go and felt anxious and stressed and asked what he could talk about. He has gone off happily and his old friend will take him home so that I don’t have to rush about to get back to him. We are so glad to have such a good friend too.

It’s good you have trusted friends to give you a little time and space...I miss my own space, because now he has begun looking for me if I’ve left the room ..did I mention the non- stop talking as soon as he wakes up ...you have to laugh

 

[kindred]

It’s good you have trusted friends to give you a little time and space...I miss my own space, because now he has begun looking for me if I’ve left the room ..did I mention the non- stop talking as soon as he wakes up ...you have to laugh

Oh yes, Keith went through the non stop talking lark, and still is really at his nursing home. With you all the way here. Gxxx

 

[Grahamstown]

It’s good you have trusted friends to give you a little time and space...I miss my own space, because now he has begun looking for me if I’ve left the room ..did I mention the non- stop talking as soon as he wakes up ...you have to laugh

I would say that he doesn’t like it if I am not there and he didn’t want to go this morning, but he will still go if I encourage him. I was able to get a few things done with one failure to get a special battery. ‘Good man’ sounds better than ‘well done’ @kindred . When I say that he says ‘at least I can do something’, which sounds quite sad, so I shall try that and report back.

 

[Hazara8]

I read all your posts and have tried to-learn from them and I’m hoping I have ....there’s a comfort in what you write thank you so much A x

A very kind response and much appreciated.

 

[WA123]

The bullet point list might feel a bit condescending the way it is written but is essentially right and not much different to the compassionate communication that is listed so often. Maybe people respond better to an article with examples in it but once you've read that, there is no harm in printing this and putting it somewhere where you can look at it now and then.

One thing I have learned while looking after a PWD is that there is no value in needlessly being right. When OH and I went to a place we had never been to before, he looked round and said "We've been here before, right?" What good would it have done to correct him? So I said cheerfully "yes, you're right, we have been!" And smiled at him like he was very clever. So instead of feeling small and corrected, he felt good and encouraged. That's the essence of compassionate communication. And yes, it doesn't always work, and if you don't feel able to follow it, don't - but people giving these recommendations are only trying to help.

I'm with you Beate. I was given this advice about 3 months after we got my husband's diagnosis by a friend who was much further down the line with his wife. These 'rules' changed my life and my husband's overnight and I find if I follow them life is quite good. If I forget then life goes downhill very quickly. Everyone chooses their own way through dementia but this list definitely works for us so I stick to it as well as I can.

 

[AliceA]

Probably the most effective way of dealing with the situation, with a touch of humour too. X

 

[AliceA]

I have to agree with you @Bel72 even if the intention is good with the list, it does get my back up a bit. I read it ages ago when an in law posted it on Facebook, but never thought I would be in this position. As I have posted already somewhere, I am very bad at this even though I have some experience in my working life, and break ‘the rules’ a lot and then try harder next time. My daughter obviously knows all about it because she says the same things when I get at my wits end, and I think well maybe he should come and live with you! I know she is right so my current mantra for dealing with it is, ‘Think 5 year old, think 5 year old’ and yesterday it worked when I got a bit steamed up at an outpatient consultation, which I have written about on another thread.

It’s like the compassionate communication thread - what we should do in the perfect world. I take such things as targets and reminders but don’t beat myself up when I fall short.

The bullet point list might feel a bit condescending the way it is written but is essentially right and not much different to the compassionate communication that is listed so often. Maybe people respond better to an article with examples in it but once you've read that, there is no harm in printing this and putting it somewhere where you can look at it now and then.

One thing I have learned while looking after a PWD is that there is no value in needlessly being right. When OH and I went to a place we had never been to before, he looked round and said "We've been here before, right?" What good would it have done to correct him? So I said cheerfully "yes, you're right, we have been!" And smiled at him like he was very clever. So instead of feeling small and corrected, he felt good and encouraged. That's the essence of compassionate communication. And yes, it doesn't always work, and if you don't feel able to follow it, don't - but people giving these recommendations are only trying to help.

i just remind myself it will all be the same in a 100 years. Some times there is no point, but when tired we tent to react instead of acting. i know I have to pace myself when I can, then something unexpected crops up!

 

[Distressed55]

Now, this does not come from compassionate wotsit, but the one thing in my communication that made a difference was to praise everything with the expression Good man!! I'm still doing it in Keith's nursing home and I notice the staff doing it now, good man or good woman! Gxxxx

I will try that with dad. I usually do the 'good idea' or 'well done', or even 'good job' which is an Americanism that I hate, but is usually ok with dad. All that I really try to be is kind and compassionate. And even then, I seem to fail, like when he told me I was embezzling from the German government.

Re your previous post - v pleased that you liked venal siblings! I surprised myself with that one too, usually I'm far more -ahem - sweary! But you can't really do that here. And yes, I think that it
was the lovely Matthew Modine in Married to the Mob. I think it calls for a rewatch!

A far more successful visit with dad today who is doing a little better. The home is doing a great job, even if there seems to be a degree of chaos that I don't quite like. But then I'm a control freak. So that means that I'm coping with the dementia really well!

Anyway, thank you for your kind post.

 

[kindred]

I will try that with dad. I usually do the 'good idea' or 'well done', or even 'good job' which is an Americanism that I hate, but is usually ok with dad. All that I really try to be is kind and compassionate. And even then, I seem to fail, like when he told me I was embezzling from the German government.

Re your previous post - v pleased that you liked venal siblings! I surprised myself with that one too, usually I'm far more -ahem - sweary! But you can't really do that here. And yes, I think that it
was the lovely Matthew Modine in Married to the Mob. I think it calls for a rewatch!

A far more successful visit with dad today who is doing a little better. The home is doing a great job, even if there seems to be a degree of chaos that I don't quite like. But then I'm a control freak. So that means that I'm coping with the dementia really well!

Anyway, thank you for your kind post.

Thank you! It's hard for us who like order etc, but there is energy in chaos that is real. I know exactly what you mean but chaos propels the day. Better than silent conformity. I know, I know, it's hard and I love a good swear, I do!
love and best, Geraldinex aka kindred.