Oh my darling, I do understand. I dread rain for reason you say. In fact, when it rains, I wear earplugs. We are on alert all the time. This is not a good way to live. with love, Kindred, and then along comes a bloody list to tell us what to do ... DOH. XXX
So True but so hard to do! - (unless you are a saint)
- Thread starter maryjoan
- Start date
I think the thing is that if you have a terrible experience and I count looking after PWD in this category, then what do you do with that experience? And one thing, of course, is to tell others what to do. Millions of books have been written from this standpoint. Sometimes it would be better to use your experience to support others unobtrusively, but I guess it is not so theraputic. Please please always tell me if my thread about OH home - please don't throw me away - ever falls into this telling others what to do trap. It would never be my intention.
Kindredxx
Kindredxx
Such cheering messages on here, I'm doing my best but I find it very hard. Thanks Hair twiddler for the 'Yes' tip, I will find that very useful, and will give it a determined go.. thank you everyone, so good to know that there are kindly people out there who know exactly what it's like and are fighting the same small but relentless battles xx
That's why, like you, I contribute to TP.
I suppose it's each to their own when it comes to writing books, blogs etc., but I'd much rather think I can help people on a one to one basis within the confines of my knowledge and experience than write a book/list of commandments as if I know it all and every case of dementia fits into a neat box to which my rules can apply.
Keep on with your personal thread as such threads are a valuable part of TP for a great many people - even people like me who may read but rarely/never contribute.
It's unfortunate that the list all came out as shouty capitals. I know some people, me included, tend to do that sometimes - though well intended - but, yes, I was a bit offended at the list of 'instructions' so I guess it made me think a bit. All I can add is that my sainthood sometimes slipped and I was, just occasionally, stirred to a bit of a temper. Being so even tempered (in outward appearance), it sometimes had an effect for the good rather than starting a shouting match or a sulk as it brought mum up short. What she felt inside I can't honestly say but it did stop the behaviour for a short time. Something I should not have done, me oriented not PWD oriented and it made me feel guilty but it didn't happen every day and, most times, I did the agree and move on tactic, so I don't beat myself up about it. Whatever gets you through the day.
This is a great tip. I use it all the time, especially when my wife is on one of her missions and I find myself saying "Yes, yes, yes, yes, yes"!
During my career, I used to present a negotiating skills course and saying 'yes' was one of the skills suggested as it's hard for the other party to argue with you when you are always in agreement, and usually makes them more amenable to whatever you suggest/request later in the discussion.
When a person with dementia loses the ability to reason and/or express themselves they will still usually have their emotions intact so they will probably, to the same extent as anyone else, feel amenable towards a carer who always says 'yes'.
So according to rule 1 I should agree with my wife that I have stolen all her imaginary money?
Ah yes, this is where anything “listed” falls down........yeah what does one say? You can’t really agree can you, or deflect by saying “what money”? In my case it’s our car and my OH telling me he is going to drive no matter what anyone says. It’s caused stress, sometimes I’ve been able to deflect (but not often). So he has to be told No. “Yes yes yes” doesn’t always work if it’s concerning safety on all levels, or agreeing with something that is incredibly upsetting to you personally. Sorry, we know that “compassionate communication” is a good idea, but as has been said, every person with PWD is different and there’s no one size fits all for every occasion, and it’s that attitude that I personally find patronising, not the essence of the idea.
And I should agree with my dad that I’ve been embezzling from the German government.
Yes, these type of lists are full of well- meaning help, but completely impractical when you are confronted by the reality of life in dementia world.
At least here on TP we offer suggestions, not instructions, never criticise when we fall short of sainthood , console each other when we beat ourselves up, and support when there are endless battles to fight.
If I had more energy I’d find that list irritating and patronising, and I’d have a good old rant. But it’s been a trying week, so I’m going to find something chocolatey to eat.
The list is a good reminder of what we can strive towards. Yes, the shouty capitals are annoying but retype it in regular type and the annoyance goes away. I think the writer was simply trying to be emphatic.
Thanks for that. I laughed at the embezzling money from the German government bit.
This list of absolutes appears to be based on the experiences of just one case. Therefore it might not work for everyone., if the writer was a professional dealing with many patients then it may have some worth
Good grief, you haven't been embezzling from the German government have you? My OH was convinced for a long time that I was a mafia moll. (wasn't there a film, married to the mob, or something, back in the day??)/ Kindredxxxx
I think a lot depends on what is being said and the degree to which the person can still recall.
When my wife once queried the disappearance of her stash of cash(she’d spent it but wouldn’t remember doing that) in an accusing tone I just told her that I’d put it in the bank to earn interest and that I’d get some more out for her.
An outlandish tale like stealing from the German government, I’d just tell her I was working for the British government at the time so it was above board - after all, we are often told to enter their world.
When my wife once queried the disappearance of her stash of cash(she’d spent it but wouldn’t remember doing that) in an accusing tone I just told her that I’d put it in the bank to earn interest and that I’d get some more out for her.
An outlandish tale like stealing from the German government, I’d just tell her I was working for the British government at the time so it was above board - after all, we are often told to enter their world.
Now that is interesting, about entering their world. Joking apart, there is some truth to it but I'm not sure what practical use the knowledge has. Back in the day when I trained to work with children with severe learning difficulties, the up to date way to relate to children with severe autism was to enter their world and mirror what they do. So I did, and we had one little girl who was fixated on a strip of silver paper, so I got a strip, stood next to her and was similarly fixated. What I learned is that it is more interesting than you might think and how incredibly anxious making it was when you lost sight of the strip of silver paper. I guess you could relate this to dementia? Love KindredxxI think a lot depends on what is being said and the degree to which the person can still recall.
When my wife once queried the disappearance of her stash of cash(she’d spent it but wouldn’t remember doing that) in an accusing tone I just told her that I’d put it in the bank to earn interest and that I’d get some more out for her.
An outlandish tale like stealing from the German government, I’d just tell her I was working for the British government at the time so it was above board - after all, we are often told to enter their world.
An important thing to remember is that a person with dementia may lose cognitive skills etc., but they don’t lose emotions and their skill at reading body language may even improve as it's all they have left to work with. The other thing is that their expressions of emotion may be heavily disguised because they have lost the ability to express themselves but, like us, there will be a reason for the anxiety or whatever being expressed.
This is why we have to dig and also mirror expressions if appropriate. It helps greatly to know a persons history, likes, dislikes, interests etc., if we are to do this well.
This is why we have to dig and also mirror expressions if appropriate. It helps greatly to know a persons history, likes, dislikes, interests etc., if we are to do this well.
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.
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.
