Compassionate or Honest Communication?

[Witzend]

One point I would just add about telling someone in a CH that they're staying there: if the person can't accept that there's anything wrong with them (as so often, no matter how bad they are) then they are never going to accept that they need to be there, and not at home.

And when I say 'can't' I mean that literally. When someone can't remember that they can't manage at home any more, maybe can't even make themselves a cup of tea, then it's no wonder that they can't be happy that they've been taken from home and put in this place. Imagine being convinced that there is nothing wrong with you, and yet you have been put in this place where you don't want to be - it must be awful.

Hence, IMO, the LWLs are the kindest option. However, as always, every person is different and each of us who knows them best will usually know better than a professional who doesn't really know them, what is best to tell them.

 

[morph]

Compassionate, yes, AND honest yes

Both is ideal if you can achieve it. Listen carefully for the emotion behind the statement. My Aunt actually lives in her own home but no longer believes it. When she longs to go home, I tend to say "It must be awful for you to feel so unsettled" for example. She may shed a tear but the fact that I have taken her distress seriously is what she needs, I think.

If she asks straight out where she is, I tell her the truth - which is clearly what she wants.

If she demands too see her carers less often, I say quite honestly that I would worry myself sick if I knew they had stopped visiting. (She lives 100 miles from me).

My impression is that she may be very confused but she is not stupid - she will probably spot an outright lie, and finds evasive answers unhelpful.

There is no distress-free recipe for a conversation with a person who is experiencing dementia. She lives in a crazy, illogical, patchy and confusing mental universe, and triggers for distress and frequent and often unavoidable.

 

[Witzend]

Do you think my MIL will eventually think we live with her???? Rather than she lives with us??

After only a short time my FIL thought our house was his. I would find him going through 'his' kitchen drawers etc., chucking out things he didn't think he needed. 'What are these darn things doing in here?' (rubber gloves etc.) Had to retrieve quite a few things from the bin.

 

[stanleypj]

I think you make a lot of sense morph.

I can empathise with the people who have to tell LWLs to the people they care for in order to keep them calm.

As always, we should remember that everyone is different.

I am uncomfortable about the fact that earlier in the thread honesty was equated with brutality whereas deception is (always?) deemed compassionate. Compassion AND honesty is certainly something to aim for, as you suggest.

The LWLs are writ large in SPECAL and the Society has a clear and I believe correct view of the deficiencies of this approach:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=1087

 

[Okie]

Compassionate or honest?

Hallo all ... a tricky one indeed and I tend to agree with those who choose the compassionate route. I worked for a while as a community dietitian with elderly people, incluidng those with dementia and, when new to this area, asked the CPN whether one should correct what they are saying and she said, "Yes" However, when I gently did this, there was so much distress and confusion, I decided that that, for me, at any rate, the best thing was to go along with their fantasies but, if possible to distract them from that train of thought, unless the subject in question is really important. Now, I am retired and visit an elderly care home and dementia unit as a Pets as Therapy volunteer with my golden retriever and have the most extraoridinary "conversations", tending to give non-committal answers as others in this thread do - but the dog is a good distraction!

Best wishes to all, Okie

 

[comane]

Make her/him happy

We have lived here for 40 years but my wife insists it is not her home and demands to be taken home. At one time I used to take her out in the car and ask her the way to her home and eventually she would let us come back here. Once she suddenly remembered where she was and happily guided us back here. Now she is much worse and I point out our family pictures and she eventually forgets about it. The other problem is her children who she is sure she is responsible for and gets very worried about them. The youngest is 37 and the eldest is 54 but she doesn't recognise them now and is looking for her babies and young children. I deal with this in different ways. Some people worry about not telling the truth and "white lies" . One must not think of these as lies. As a carer one has the duty to keep the sufferer happy. At a later stage they do not remember what they have been told for more than a few minutes. If the facts are not acceptable to them you are bound to reply in a manner that they can accept if at all possible. One must not put them through the few minutes of misery for the sake of telling the "truth". They will forget and ask again and the cycle will be repeated.

 

[LYN T]

When my OH was at home I had to tell loads of 'love lies' as I call them.

I picked P up from day care once and he was crying and in a temper because he was expecting his Dad to pick him up.(Dad dead about 25 years ago).I couldn't tell him that so I told him that Dad was in Birmingham and there had been a road accident so he couldn't get down to see him.Bingo!Crisis over.

Then we had the 'I must get to work now'. I told him that it was too late for work and it would all be locked up -tomorrow would do.He accepted that.

Looking at photos of people who had died-'Yes my Darling we will see them soon-I'll phone them tomorrow'.Etc etc.Anything but the anguish the truth would bring.

Sorry I just couldn't do 'honesty' with Pete after he reached a certain stage.

Take care

Lyn T

 

[AntheaC]

what home means

Hi to all who have posted
I just wanted to add some of my expereince and also to ask for some advice.
My mum has good and bad days with evenings the worst time. She lives at home with my dad as her carer. Every night she forgets she lives in that house and wants to go home to her 'real' house. At times this is the one I grew up in and at other times it is her parent's house. My dad insists we all tell her this is her home and we do. It doesnt always settle her and we have to go through a rountine of where everything is so she can settle. I think for her it is not so much about telling her the truth as knowing as understanding that the world can be a scary place if you cannot remember things. What my mum needs and what I suspect most people with dementia or Alzheimers need is compassion and someone to reassure them everything is ok.
On the other hand - my aunt has Alzheimers and she is a very active lady who likes to try to go walkabout to go 'home'. She often thinks her husband is keeping her locked in and has even rung the police which as you can imagine was a terrible thing for my uncle. He has tried for years now to remind her that she has lived in their house for 40 years but she won't listena dn begs to go home. She has rung other family who have taken her to the house and the kind lady who lives there has let her look around. She has been shocked and upset evey time adn it has never helped. In this cae honesty definitely hasnt heped but just re-inforced the emotional unsettlement she feels every evening. I think they ahve tried everything now and after three years I don't think she will stop thinking she is not at home. Please let me know if anyone can think of something that might help to stop this evening cycle.

 

[gringo]

A carer at my wife's CH., told me that her beliefs and principles led her to believe it was wrong, under any circumstances, to lie. I found the only way to deal with my anger was to put my thoughts into verse. here are two of the verses which best express my feelings.

Who, knowing dementia’s demands, would judge me
And decide my specious shifts beneath contempt?
You insist a lie is a lie, I don’t agree.
It can be a kindness too, from blame exempt.

If a lie can soothe where candour would confuse.
If lying brings comfort where truth would hurt.
What price your blessed honesty to accuse
Those who only seek confusion to avert?

 

[rajahh]

I am not sure she should be a carer then gringo. I would have expected the policy at the home to be compassion overrules honesty , as your two verses explain .

Every night my husband says he must go home, and I put him off and say it is late and we will organise it tomorrow. In the morning he is calmer and does not mention it. Every evening same old situation.

He used to go to bed totally confised when I tried to explain, bow he goes contentedly andsleeps.

Jeannette

 

[Gill1961]

Hi,

Another very interesting and informative thread, may I add to it.

A few years ago, it was the last Xmas before Mum went into full time care. Mum and Dad were at my house for dinner, I planned for us to eat at 2pm.

At about 1.45 husband disappears with my Dad to show him something in the garage, I have spuds veg etc and cheats easy cook turkey joint all on the go.

We have locked the front door but Mum started to rattle it and saying she had to go home to give her girls their lunch (my sister and I are both in our forties).

I simply said the first thing that came into my head, don't be silly Mum you now know they are having school dinners today!

Mum accepted my explanation, and dinner went ahead.

Should I have sat her down and explained she no longer had small children, schools are closed at Xmas etc etc.

This awful condition means you have develop coping strategies and say whatever works for you in the given situation you find yourself in.

 

[Witzend]

A carer at my wife's CH., told me that her beliefs and principles led her to believe it was wrong, under any circumstances, to lie. I found the only way to deal with my anger was to put my thoughts into verse. here are two of the verses which best express my feelings.

Who, knowing dementia’s demands, would judge me
And decide my specious shifts beneath contempt?
You insist a lie is a lie, I don’t agree.
It can be a kindness too, from blame exempt.

If a lie can soothe where candour would confuse.
If lying brings comfort where truth would hurt.
What price your blessed honesty to accuse
Those who only seek confusion to avert?

I like your verses, Gringo, but to me that carer's attitude smacks of pious stupidity. I can understand anyone with no experience of dementia thinking it's wrong, but a carer who surely ought to understand that sometimes it's kinder - well, TBH I agree with whoever else said it that she's in the wrong job.

 

[Florriep]

Almost a month ago I started this thread with a mixture of feelings about truth vs kindness and whether the two can somehow be combined.

With the help of you lovely TP people I've found it so much easier over the last few weeks to put aside my worries about not repeatedly telling MIL she's in the CH for good in the hope she might grasp it (as advised) - and its been amazingly liberating! I hadn't realised how draining the internal dialogue in my head has been for the last 4 years and how self-consciously I'd responded to the going home question in front of other residents and staff. I'm still not happy about telling LWLs - it still feels morally wrong - but then there's not much to be happy about when it comes to dementia and so I'm just adding LWLs to the list! Having made that leap, I feel much more at ease to just chat and find things to make her laugh, rather than sit dreading the next round of "when am I going homes".

What's interesting is the overwhelming response from people who live with this day in day out has been that compassion, kindness and love is the way to go. Gringo's carer and my memory clinic consultant can perhaps afford to take a different view. That tells me to always put professional advice through your own common sense filters to make sure it is right for you and your situation - after all we're the ones that have to live with the fall out.

 

[Rageddy Anne]

Compassion, hands on experience, and common sense over theory any time is my instinctive reaction.....every Dementia sufferer is different, and often the same person might react in varying ways. My money's on FOLLOWING YOUR INSTINCT EVERY TIME. You know her better than any others.

 

[Amps]

Hi, it is very hard hearing someone say they want to go home, but I agree with Dogcrazy that often people with memory problems think of an idealised place as 'home', maybe even where they were as a child with their own Mum looking after them and where they felt safe. Definitely go with compassion if she is not able to understand or remember what you are saying.
Good luck

 

[Fellman]

Tell the Truth ?

Ethics is the study of moral dimensions.
Telling the truth is a moral dimension.
Hurting someone is a moral dimension.
Balancing the two is an ethical challenge.
Some people have to be black or white because they can't handle the complexity of the rainbow.
Do whatever you have to for the outcome to be as beautiful as you can make it.

 

[pippop1]

Money worries

My MIL worries about the cost of everything (although she has no need to). For example the cost of the carers - for this we tell her that she gets attendance allowance (true) and it covers the cost of the carers (not true).

The chiropodist comes to her house to cut her toenails (true) but it's a free service if you are over 80 (not true). This lie changed her attitude of not wanting to have them cut to being much more compliant!

We do shopping for her and she asks us to give her the receipt so that she can give us a cheque. My husband now looks after all her finances and pays for her shopping out of her bank account so she doesn't need to give us a cheque. I say I'm just looking for the receipt, I'll give it to you in a minute. I just don't give it to her.

Plumber comes to mend a leaking loo and another job. I tell her it costs £25 which she thought was much too much. The next time she asks (1 min later). I tell her £10 which she thinks was fair. True cost was £100+

I don't like lying but if it gives her peace of mind, (and me) then why not. I don't even have to stick to the same explanation, as long as it sounds reasonable to her it's fine.