Compassionate or Honest Communication?

[Florriep]

Hi - I'm a bit of a lurker - not posted much, but I'm very grateful for all the wisdom and tips I received here over the last couple of years.

I'd love your advice on our ongoing situation - after three years in a CH, my MIL hasn't begun to settle. She always wants to be taken "home" and the only thing that varies is her intensity of feelings on this. DH believes we shouldn't challenge her as it only causes her great distress to be told the truth, she forgets the conversation and the cycle starts again. So we tell her she's there for respite for the time being, take a day at a time, see what the dr says, make the most of being looked after, etc -along the lines of the compassionate communication link that was posted here recently, which I found really helpful.

Its his mother and I take my cue from him and I certainly don't want her (or us) to be any more distressed than she already is.

However, a dr from our next-to-useless memory clinic (long story) visited her without our knowledge about a year ago. They commented that the CH staff don't challenge mil when she says speaks about going home and we should all get her used to it being her permanent home - if we say it enough it will stick. Although we ignored the advice, its gnawed at me ever since - should we give it a whirl as our method hasn't worked? Maybe she always feels in limbo and knowing the CH is home would help her to relax? In your experience, is there a role for more brutal communication as the Dr suggested or was it another example of the memory clinic missing the mark?

Florrie
x

 

[starryuk]

A very good question. Sorry to say I don't know the answer, but am interested to hear what others have experienced.

 

[snedds57]

I would go for the compassionate communication every time. Stress is not good for the brain, so avoidance of it would be a high priority! What is the point in winding her up over and over? Since the information isn't going to go into the long term memory even with repetition I see no point in going that road. What is more likely that she will move on a stage and the situation will resolve itself (hopefully not by turning in to anything more difficult!). Anyways, that's just my opinion. If you do decide to tell her for a couple of times and she gets anxious, the one advantage is she won't remember!

 

[KingB]

I would be inclined to trust your own judgement rather than that of the person from the memory clinic. It is you that will have to deal with the fallout if they are wrong.
I took my lead from my mum - and although on occasion we did the "give it a little while longer, see how things go, you need the support just right now" a fair bit, there were occasions when she would say "well, I suppose I am here for life now" - and then I would reinforce that as much as I could while she was in the right mood for it (keeping it as light hearted as I could).
It is hard sometimes to know what to do for the best - but what you are doing at the moment seems to work best in the moment. What do the care staff advise?
I will admit that the care staff at mum's CH were a bit variable. Some would say "its just for a while, lets see how you are tomorrow" - and others would say "this is your home now". I think both approaches had their merits - and probs were appropriate at the time.
Anyway - bottom line is do what you feel is best for MIL - and compassion does seem a very good way to go.

 

[Florriep]

Thank you for your quick responses. In my heart compassion wins but, I worry that we're causing her more harm by not following the "professional" advice. I guess at some point this stage will pass, but its lasting a very long time!

KingB our experience is much like yours - some staff have had a crack at saying this is home, while others go along with the see how you are tomorrow routine. When people have said she's there to stay it causes enormous, hysterical distress especially if they tell her how long she's been there - just seems cruel and pointless to me so very pleased for your reassurance. Good idea about being more honest in lucid moments too.

 

[stanleypj]

For three years she hasn't settled. As far as I understand it, during those three years you haven't told her she is there permanently - no criticism intended. My question would be: What do you have to lose by introducing the idea that this is now her home?

You don't have to be brutal about it. But I do think that, if you decide to try Plan B, you should be consistent about it and try to get as any people as possible to say the same thing.

She may get upset, but then she is upset at the moment.

I would think it is worth a try since your understandable decision to go along with DH's wishes is not improving the situation.

I've often wondered about 'compassionate'.

 

[Canadian Joanne]

You can try telling her she's there permanently but my personal preference is to cause the least amount of distress as possible. If telling white lies is necessary, that's fine.

When dealing with dementia, I strongly feel that honesty is an over-rated virtue. I never told my mother that a sister, a brother and her husband died. It would have caused great distress in the moment and accomplished nothing in the long run. If there is no memory of what was said, what is the point in saying something upsetting?

 

[Aquamanda]

I feel you are doing the right thing by treating your MIL with compassion. My own mother still wants to go home after 2 years in a CH and I know it would really stress her out if people started to say 'this is your home now' or whatever. My mother says she is 'going home tomorrow' the minute any amount of stress is put on her (and I mean like trying to get her to put shoes on)! and I just either say 'ok' or ignore it and change the subject. The thing my mother kept saying when she first went in the CH was 'I don't want to die here'. I can fully understand that some residents will never be able to see a CH as their own 'home' and to tell them it is a permanent arrangement may not make them accept it - instead, they may become really frightened and agitated and more keen to leave. I have heard so many times that many people in CH will always express the longing to go home - it doesn't necessarily mean they are unhappy, I think they just want their old lives back. It's so sad.

 

[Carara]

dogcrazyuk
You are so correct in what you say

My Mil is with us and at beginning she hated it ,we don`t get that anymore

The reason is,is because she thinks this is her home and we live with her not the other way around

When she lived in her flat, for 2 years ongoing she wanted to go "home"
That had been her home for over 30 yrs

Now,today she has actually said she wants her life back

So basically I know exactley what she means

She wants to go back to the days she lived with her hubby,she was very very happy with him before this dementia kicked in

 

[Pross]

Trouble is, we tend to think professionals know best even though we often have evidence to the contrary. Put three experts in a room together and you'll get three different opinions. Go with whatever seems right for you.

 

[Aquamanda]

Carara,
I loved the bit when you said that your MIL thinks you live with her, not that she lives with you. That would be my mother all over. It really did make me chuckle.
I actually have said to my mother at times 'Mum, it's not really that you don't like this place. I know what you really want is to have your old life back. I am so sorry I can't do that for you but we have done the best we can and the staff are lovely aren't they, you have made friends and there is always something going on'.
Then she normally agrees with me - until the next time!!!

 

[Carara]

Oh dogcrazyuk

Not only does she think we live with her she wants board money too

Crazy Hubby agreed to pay her £3.50 a week,she thought that was good

She wants it from me too so I smiled like a loon

And last night she told 19yr old & 16 yr old its about time she got some money off them too as ALL this meat she buys isnt cheap

I had to laugh myself

Its not funny when she sits there shouting
"This is my home and I will have you out in a flash you know"

Im like "Ok I`ll close the door behind me "

 

[Aquamanda]

It's so great that we can keep a sense of humour even when we are dealing with dementia. I think that Carara and her family are showing great and compassionate communication with the MIL - so much better to go along with things, keep the peace and even have a giggle occasionally. xx

 

[elizabet]

Carara,
I loved the bit when you said that your MIL thinks you live with her, not that she lives with you. That would be my mother all over. It really did make me chuckle.
I actually have said to my mother at times 'Mum, it's not really that you don't like this place. I know what you really want is to have your old life back. I am so sorry I can't do that for you but we have done the best we can and the staff are lovely aren't they, you have made friends and there is always something going on'.
Then she normally agrees with me - until the next time!!!

HI Dog crazy I must remember what you wrote above about having your own life back and being sorry but you have done the best for your relative. A family friend thinks I should be honest and tell my Mum she will always be in the care home and I posted about this a few days ago . I think what you wrote is a lovely way of telling someone .

 

[1954]

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

 

[Carara]

1954

Yep Im 100% certain she will


sorry

xx

 

[Fed Up]

Some of the comments are so very observant of the fickleness of the disease. In my mums home someone believes in honesty each time she tells her mum her sister has died so can't visit. The mum wails in anguish and its awful takes the care staff to calm her. So honesty is great provided the person you being honest with understands, I'm all for the kind fib that protects someone or the evasive or distracting question that changes the subject. Just do what you think is right and then you have nothing to worry about.

 

[1954]

Carara

Oh no I will never cope if she thinks this is her home and asks us for keep!!

 

[stanleypj]

Thank you for your quick responses. In my heart compassion wins but, I worry that we're causing her more harm by not following the "professional" advice. I guess at some point this stage will pass, but its lasting a very long time!

KingB our experience is much like yours - some staff have had a crack at saying this is home, while others go along with the see how you are tomorrow routine. When people have said she's there to stay it causes enormous, hysterical distress especially if they tell her how long she's been there - just seems cruel and pointless to me so very pleased for your reassurance. Good idea about being more honest in lucid moments too.

My previous was written without this new info. If people have already told her it's permanent and this has caused enormous, hysterical distress the it's obvious - 'unsettled' is way better than that.

I don't think you should worry about ignoring what one 'professional' has said.

 

[Big Effort]

Hi Florrie the 'Lurker',

Glad you have come out of hiding - face to face is much more fun! Good for you!

Regarding telling the truth, white lies, compassionate lies and so on. Hmmm. Personally I would only deal in the truth - after all the world needs honesty (gentle honesty). Just my life philosophy.

Caveat: dementia. People with dementia are vulnerable. They have often lost the ability to make decisions on their own behalf. Thus if we make decisions concerning them, on their behalf, well that is a big responsibility.

We often have to take decisions we don't like, and they won't like either. Honest me has no qualms in diluting the truth, twisting the truth or telling compassionate lies. Not now. I would like to be honest and straight forward with Mum, but I know the truth can cause so much distress.

One personal example. My brother was extremely ill in hospital in early January with a burst aneurysm. It was touch and go. We siblings were in bits, crying, traumatised and very very worried for him and his family with young kids. That's us 'normals'.

I would have opted to wait a few days to tell Mum just to have a clearer picture and be able to give her a clear and consistent diagnosis. Sister (an invisible) and brother in law (can be supportive) wrote a terse email to say Mum "has right to know about her son, better the news comes from me, otherwise they will do it" left me with little choice.

Result: nose dive since January. And this in a person who has been very stable for 4 years and last visit to neurologist had him (erroneously) believing she was making progress! So pre news Mum was stable and well, post news she has gone at the speed of light to stage 6.

My lesson: never ever give someone with dementia bad news unless strictly necessary. They have enough to contend with without interfacing with death and destruction. Of course this is a generalisation. However if your loved one already wants to come home..... well saying it is permanent really does drive nails into an already tight coffin. For such an emotionally distressed person who thinks they should be able to come home, well telling them they never will is taking away hope.

Do no harm.
Never remove hope.
There is honesty and there is brutality.

Just my views based on my personal experience. Hope things pan out well in the end, sounds as if you are doing a great job, BE