A dreadful question

Amy

Registered User
Jan 4, 2006
3,454
Hiya Inmyname,

However to even discuss possible views on this on this forum is outlawed
Is it? I didn't know that.
I think you have touched a raw nerve with people. Certainly for us the decision to place my mum in a care home has been a very difficult one to take; we cannot think of it as being degrading to mum, because that is saying that we have chosen to degrade her. We are not talking logical, thought out , rational responses here (I speak for myself), but an emotional reaction.

Of course your mum is entitled to her opinion, as are we all.

I know when I responded to Lynne last night I was feeling a bit shirty, but that was partly because of the sort of day that I had had.
We are all in this together. I hope that you ar not feeling got at, it wasn't intentional.

Best wishes

Amy
 
I

inmyname

Guest
I feel got at by my Mother but then i always have

I have to respect her views but that does not make it any easier dealing with the extreme mood changes ,bad temper and swings from one extreme to the other on the end of a phone

I am thankful to not live close and theres no way she could live with me

I am an intensly practical person able to tackle most electrical/diy but have now had to refuse to do or touch anything when i do go because she sees it that i am responsible even 10 yrs down the line and the minute something does not work ( usually only needs a battery in the handset ) she is phoning me claiming whatever it was i touched/fixed is broken and its all my fault and i should drop everything and run there in 5 mins

Clearly neither sensible or practical but as others have said you cant reason with AD sufferers and certainly not my mother

All this is against a background of someone who at 89 and with major memory loss and hallucination episodes still insists is perfectly capable of driving ........will not hear of getting a taxi cos that costs money ....as if tax, insurance, mot and servicing on a car is free !!!

To me if she is too "stupid" to fathom that the handset to open garage door needs a new battery she is definitely not fit to drive or try to maintain a home thats too big for her

Maybe I am being cold and hard but thats how i feel and of course i have to balance everything against the way she has treated me over so many years

Obviously for anyone coping with much younger sufferers of AD the whole scenario is very very different and appallingly sad

To me who ever we are and whatever we have been we all have an end date and the thing that really upsets me most if i have to go to a cemetary/funeral is anything to do with the death of a baby or a child
 

Jude

Registered User
Dec 11, 2003
2,287
66
Tully, Qld, Australia
Dear All,

I'm not sure that I agree at all with Inmyname's comment that you cannot 'reason' with AD sufferers, because I do think that this is possible some of the time - especially during the early and mid stages of the disease.

I have always found that 'reasoning' with my parents has been the best way to maintain harmony and daily routines and for most of the time they have been very happy and understanding 'in the moment'.

For me, calm and rational explanations have usually been the way to go over the past 6 years. Mum and Dad are now very happily living together in a Nursing Home since July 2005, so I'm speaking retrospectively here. If they didn't want to comply with my request to variously eat dinner, have a bath, go to bed, etc then I would just leave them alone and try again ten minutes later. Odds on, they would be more amenable to listen to me later.

My parents are both 88 years old. OK, they have AD - but they are NOT babies, stupid or mentally ill and as far as possible I've tried to treat them like the rational, intelligent people that they once were - and still can be on 'good' days.

I also made LARGE allowances for the fact that they are incredibly frustrated by their loss of memory and can get cranky and irracible at times. [So would I...!!] It does help a great deal to focus on the fact that it is the AD that is giving you a hard time and not the person. Be flexible.

Requests for 'action' were always taken much better with a smile, rather than a direct order. Also, give choices. For example: 'Would you like to have a shower now or in 15 mins after the news'? is great for getting what YOU want.

It didn't always work - but it did work 99% of the time.

Hope this helps.

Jude
 
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jc141265

Registered User
Sep 16, 2005
836
45
Australia
Absolutely in agreeance Jude. The best results I found for getting Dad to do the things we needed to get done was to approach him in a non-threatening, relaxed and open manner. If he didn't want to do something at that point then I would respect that (after all no doubt after losing so much control in life dementia sufferers want to feel like their own boss at times) and then try again later. Getting frustrated, upset and angry about it (although at times unavoidable) never did any good especially if that emotion was directed at Dad. Yes sometimes he would do things if he was yelled at, but he would then also give you a look later as he 'innocently' tipped his coffee onto the carpet! :p

The thing to ask yourself I guess is 'if the dementia sufferer doesn't do it my way, what is the harm?' if there isn't major harm, then let it go or come at it again later with a different tac. If not doing what you want them to do is life threatening or could have other major consequences, then maybe sometimes in these cases drastic action is needed.

As the saying goes 'Don't sweat the small stuff'.

Something else to also keep in mind, I have no doubt that past relationships have an effect on one's current relationship with a dementia sufferer. I.e. Stormy relationship in the past, can mean difficulties with cooperation now because of the underlying feelings of both parties. This could be the problem for inmyname. Thinking a dementia sufferer is stupid is however a mistake, most of Dad's naughtiest behaviour easily mistaken by others as 'stupid' was due to the workings of a very mischevious quick witted mind that was only held back by the limitations placed upon him in that he could no longer make his body do what his mind wanted it to do.

Likewise the ladies who throw their cups of tea on the wall at the home Dad lives in aren't being stupid, they are expressing how they feel. The problem is a lot of the time, our loved ones know they know how to do things like driving, but when they try suddenly they can't get all the thoughts required to connect. It is the not realising that they can longer put the thoughts required together that makes a person with dementia appear stupid, but the fact is, I believe they still actually do have the knowledge there, they just can't access it.

Well enough blathering from me,
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Nat, you never blather! And all you say above is spot on.

Jude, too!

Anyone who has been to a care home and seen the staff in action will have observed that much of the time, the behaviour of a resident is almost predictable, based on the care worker who is with them. On how well they can empathise, and adjust their thinking to fit the world of the resident.

In other words, often some of the problems are caused by the person who is not the one with dementia.

I've been there, I've been the one causing the problems. Hopefully, over time I've learned.
 
I

inmyname

Guest
Unfortunately my Mother is/has always been pretty stupid about some things
and had a very stubborn refusal to update poor knowledge even in the face of pages of proof put in front of her .
 

CraigC

Registered User
Mar 21, 2003
6,632
London
Hi All,

I too find that a bit of TLC goes a long way with someone suffering from dementia. A lot of care staff seem to get this right and well, just a few I've come across seem to be in completely the wrong job.

Nats comment "The best results I found for getting Dad to do the things we needed to get done was to approach him in a non-threatening, relaxed and open manner" hit the nail on the head for me. Sometimes it is better to just go with the flow rather then fighting the illness. As far as reasoning goes; it has always worked well with dad and still does, just takes a lot longer than it used to, that's all (lots of eye contact, lots of reassurance and bags of smiles).

Kind Regards
Craig
 
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Tressa

Registered User
May 18, 2004
31
N. Ireland
I have to admire the thoughts of some on this thread, namely Nat, Jude, Brucie and Norman. I wish I could think the way you all suggest. I love my mum to bits and have been told I am too overprotective, I tend to be able to deal with the practicals like making sure she is fed and clean and warm but when it comes to the everyday situations that AD throws at me I just can't deal with them. I do shout at my mum and lose my temper, I am not a patient person at the best of times and I know I shout at her too much. Mind you, she gives as good back. I know I shouldn't do it and when I have been called down urgently to the house because she can't turn the tv over I walk up the path telling myself not to be cross with her and telling myself to stay calm but it never works. There isn't any reasoning with my mum, that seems to have been taken by AD so it is very difficult to explain to her why she can't go out to the neighbours house and leave all the doors of the house open. I know I treat her like a child because that's how it feels, like I am the mum and she is the child, and again I know I shouldn't do it, its not fair on her. So then the guilt sets in and there it goes on.

So I do have to admire the way you all deal with your loved ones, I just wish I could do the same.

Tressa.
 
I

inmyname

Guest
Tressa ......you are not alone in feeling inpatient with your Mother

Without doubt many dementia patients do give the impression of stupidity and we cant all be saints or possesed with infinite patience

5 mins on the phone to mine and i am at screaming pitch
I am sick of trying to guess the word associations and what she is talking about it makes my head spin

Add on her insistance on staying in a house thats too big and needs lots of things doing to it and i give up in despair
 

Michael E

Registered User
Apr 14, 2005
619
Ronda Spain
Tressa hi,

I do think there is something childlike in the only person I have very close contact with who has AD. My personal experience is that lots of times there are very real problems she is experiencing and it behoves me to help - point her in the right direction and tell her for the 20th time what the day and date is. Sort out mild incontinence problems without saying a word because I am 100% certain they are not intended.

Ok that's the bit everybody agrees about. I think the other side of being child like is demanding attention, pushing the limits of my willingness to do things and having tantrums. I believe that folks with AD are human beings with memory, co-ordination, spatial awareness problems but they are also the people they were before they got this horrid sickness. They can be cantankerous, difficult and unreasonable. I recently 'lost it' because I felt I had been pushed too far. Not an intellectual process but a human reaction. The result has been that my wife has really been brighter - more aware and more courteous than for weeks before. Also I might add appears happier and we have talked about her problems - a bit - for the first time. Cannot attribute it all to my bad temper but it does not appear to have done lasting damage.. Quite the opposite.

Naturally there is a very narrow path to walk between being caring and being a bully. Between trying to understand the mist of disorientation and allowing tantrums and bad temper spoil your life. Just because they have AD they are not angels all of a sudden. They have become simpler and childlike and which of us has never lost our temper with our child? And in receiving this admonishment has not that child learned something of the society in which we live? It is possible to actually do harm to people by worshipping them - look at your average pop star...
Might have to really duck this time...

love

Michael
 

jc141265

Registered User
Sep 16, 2005
836
45
Australia
Michael on your comments on the narrow path between bullying and caring and then the analogies to childish behaviours. I totally agree.

I always reminded myself that Dad's behaviour had to be taken with the thought in mind that he had reverted somewhat to the behaviour of a child. Thus the petty getting back at us by tipping his coffee on the carpet! :p He also gets nasty if he doesn't get enough attention and has whacked me in the face for not paying attention. :eek: What are young children all about, ego, ego, ego, me, me, me, no wonder dementia caring is tiring!

So yes that path is very narrow, because you have to kind of tread a line where you still make it clear that certain behaviours are not appreciated but you have to also be aware that sometimes or even most of the time, the dementia sufferer cannot help their behavior. Another important thing to remember when treading this line is that although it is good parenting to punish a child for their 'bad', 'selfish', 'stupid' behaviour as this helps them in the learning and growing process, for a dementia sufferer often, all punishment does is make them feel bad, and lower their self-esteem further. And when I say punishment I mean even simple things like yelling at them for being 'stupid'.

For example, if my Dad would not sit down for my mother she would start with asking him to sit down, then raise her voice, then yell, then shove him into a seat. All the while her stress levels would be elevating, Dad would be getting more confused by the second, if I was watching I would be upset, the whole thing was a complete debacle all of the time. :eek: My approach on the other hand would be to ask Dad to sit, if he did not do it immediately I would let it go, if I really needed him to sit, I would while chatting to him about why I would like him to sit, guide him physically but gently if he appeared not be getting the picture. If he still did not want to sit and the situation was not life threatening and I could compromise (i.e. feed him his dinner mouthful by mouthful as he passed by) then that is what I would do. Thats not to say you should let someone with dementia constantly make life harder than it already is for you their carer, but I found most of the time, the desired behaviour wasn't about making life easier, but simply was a habit or convention and there is actually something relaxing about ad libbing and doing unconventional things like feeding a man who walks past you every minute or so! :p

In ways dealing with Dad is like using your artistic side, approaching things from a new angle and one can take quite a bit of delight from achieving the seemingly impossible via unconventional means.

By the way I have found when Dad does things that are just plain mean, like hit me for not paying attention to him, the tactic that works for me is to turn away for a bit to regain my composure as I suffer both pain from the physical and pain emotionally. Then I simply tell Dad that I wish that he wouldn't do that as it hurts (in a calm and rational voice not accusatory), hold his offending hand lovingly but yet raise it to where he hit me, and then I tell him also that I understand if he can't help it.

[Bear in mind that my Dad can't tell me why he does the things he does and he can only hit me if I am not paying attention and being careful, otherwise he is too slow, uncoordinated and his blow is not very heavy.]

This is just what works for me and Dad, and I offer it only as a suggestion, aware that everyone is different in personality and symptoms.
 

Michael E

Registered User
Apr 14, 2005
619
Ronda Spain
Nat hi,

sometimes I really cannot express exactly what is in my head - Also the danger with all these debates is that most of us are having only one experience and someone said 'if you have seen one case of AD you have seen one case of AD' I think I am trying to say that I do not agree with ...

the dementia sufferer cannot help their behaviour.

It is much more complicated than that. They have memory loss - spatial awareness loss - and probably a whole lot more losses as well but they are not ga ga!

Monique is frequently the same Monique - recently we have talked more and discussed the edges of her problems - she is still in there. She gets/got angry (I think reasonably) when the nurses try to talk to her as if she is a child. In fact she has been so rude to the worst offending nurse (nice lady but not the brightest) that this nurse now speaks to her respectfully ....

Monique cannot cope with lots of things as I have mentioned before and I am so sad and sorry about that - but- I am convinced in my particular circumstances, that keeping life as 'normal' as possible is the best route. That includes me behaving and reacting to Monique as I would have done before. If she pushes the boundaries of what I can cope with then I will let her know. She lets me know what she wants allright!

She has to live in this world for as long as she lives.... Life is mixture of good and bad - happy and sad and treating ones loved ones as if they are fragile, unreal and not part of our society may actually diminish their well-being.

All very dodgy territory and if I ever saw anyone abuse Monique I would take some very un PC appropriate action...

difficult and maybe not the same for everyone..

It is just that if a child was in darkness walking towards the edge of a cliff you would phisically grab them and pull them back. If the same child were walking towards a shallow ditch in daylight you would issue a verbal warning perhaps.. The problem lays in knowing a cliff from a ditch in the dark... Ouch!!!!

love
Michael
 

daughter

Registered User
Mar 16, 2005
824
Nat, your comparison between how your Mum was dealing with your Dad, and the ways you have learnt are best, reminded me of trying to break cotton wool! It's the difference between tugging really hard and teasing it gently. Use the first method and there is stubborn refusal, try the other way and (eventually) it works every time. :)
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
It is just that if a child was in darkness walking towards the edge of a cliff you would phisically grab them and pull them back. If the same child were walking towards a shallow ditch in daylight you would issue a verbal warning perhaps.. The problem lays in knowing a cliff from a ditch in the dark... Ouch!!!!
and sometimes the person can't relate to our warning, the relevance of that warning to them or what they are doing, nor to the proximity of anything that alarms us, but not them - regardless of whether it is a cliff or a ditch.
 

jc141265

Registered User
Sep 16, 2005
836
45
Australia
Michael wasn't disagreeing with you at all and in fact I was saying something along the lines of 'I don't need to explain this too Michael because he gets it, but I really want to clarify for others...' to myself when I wrote the last post, because I too have balanced along that tightrope of not wanting to treat Dad like he was an idiot, i.e.ga-ga and then knowing at times that I also had to be careful that I wasn't asking too much of his capabilities.

I guess I'm scarred because I saw my Dad treated really really badly a few times whilst my mother got lost in her stress and frustrations, and I don't want that to happen to others needlessly, although I am aware that with the emotion of love and sadness coming into the whole thing people will still at times make the same mistakes as my mother nonetheless....my post was for those walking the edge, trying to say, that there is also a point where one has to forgive what appears to be bad behaviour, understand that our loved one at a certain point cannot control some of these behaviours and take a deep breath and try to let go of the inside screaming turmoil, and even try to have some fun working out ways around our frustrations.

Remember though I am reflecting back on my mother's behaviours towards Dad not at all yours towards Monique, my mother's response was abusive, out of control and completely unproductive, yours was obviously the kind of grounding Monique needed.

Hope that clarifies the direction of my post....its easy for me to go off on a tangent when a few key words remind me of something distressing. :eek: Hope I didn't offend.

I guess I'm dealing with guilt of not stopping my mother from leaving the bruises on Dad....perhaps I put out messages asking for care and gentleness here, because I wish I had been able to point my mother in this direction. I wonder would she have listened to me? :confused:
 

daughter

Registered User
Mar 16, 2005
824
P.S. Mum frequently used to tug too hard on the cotton wool - not so much now though because Dad's in a Home and she doesn't have the constant day-to-day (and night-to-night) care of him any more. Hats off you to Michael and all those who care full-time, I couldn't possibly imagine how hard it must be.
 
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jc141265

Registered User
Sep 16, 2005
836
45
Australia
On being scarred

Hazel,

I don't think you mean to do it, but part of why we don't often see eye to eye is that I feel that every time I try and say 'sometimes abuse is not acceptable' your next message often, perhaps in an attempt to soothe the feelings of those who might be hurt by my words, points out the high stress of the job of a carer, and that you could never imagine it (and I read between the lines there and guess that you also mean I could never imagine it), and that hats off to those who do it.

You may not mean it, but your words hurt me, as they bring back for me the years of pain I was in watching my father being abused (and I am not just talking about being shoved into chairs or yelled at, but I am not prepared to put down in type what I am ashamed of having witnessed) whilst everyone around me belittled my concerns and kept telling me that I had to understand how hard it was for my mother.

I completely understand why you post what you do, and funnily enough I agree with your sentiments, but I also need to be able to be my father's (and other dementia sufferers in the same boat's) advocate. So.....

would it be at all possible for next time that you post a thread like the last one, that you also add a disclaimer along the lines of:

I also cannot possibly imagine how hard it must be to watch your loved one be unnecessarily abused as the level of 'tugging' my mother had to do was no doubt nothing like real abuse witnessed by some.
I completely understand that there is no malicious intent in your words, it just makes me cringe everytime I read them in case there is someone like my mother out there who reads your words and feels that their actions are completely justified.
 
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Brucie

Registered User
Jan 31, 2004
12,413
near London
Maybe I'm missing something here, but I read Hazel's posts as agreeing with you, Nat.

For my part, I'm trying to get my head around the concept of 'necessary abuse' vs 'unnecessary abuse'. Or 'acceptable' abuse...

I can't get there.

The noun 'abuse' means:

Improper use or handling; misuse
Physical maltreatment
Sexual abuse.
An unjust or wrongful practice
Insulting or coarse language

How can any of that be other than not only unnecessary, but wrong?

I accept that sometimes we do something - in the heat of the moment - that may be considered abuse, but that still doesn't make it 'necessary'.
 

daughter

Registered User
Mar 16, 2005
824
Oh dear Nat, I would never deliberately want to hurt anyone. I may not have made it clear that my first post re the cotton wool was to try to let you know that I applauded the fact that you understand the need for gentle persuasion instead of your mother's ways of dealing with things.
My PS was not directed at you at all, it just unfortunatley ended up under your post because I take so darned long trying to decide the right words to put down in case I upset someone - ironic eh?!! :eek:

It was actually in response to Michael's reply where I didn't want him to think that gentle persuasion can by any means be easy every time, when you live with someone with dementia. If anything I think I try too hard in trying to show I understand nearly everyone's view points and maybe end up doing the opposite! So apologises if I caused you distress but I think we were on different wave lengths of thought.
 

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