Compassionate or Honest Communication?

[Mamsgirl]

Trouble is, we tend to think professionals know best even though we often have evidence to the contrary.

I agree. Kindness, goodwill and a lifetime of knowing somebody are pretty good qualifications too I also wonder if the memory clinic doctor was just floating an idea that she/he'd seen work in other instances, rather than being prescriptive. Good luck.

 

[1954]

When MIL came to live with us last November I tried several times to explain why she was with us. We knew this was a one way ticket-that she will never go home. I sat down calmly and talked to her and tried to explain (she could remember that we had always said she could live with us if she became ill but she said that time had not come yet!!). She looked at me blankly like I was talking to her in a foreign language! She was not happy with me at all, in fact the more I tried to explain the worse she got. She became very angry indeed (this was before I had found TP)

I hate telling lies I really do, but I have to come to learn that giving her information she needs to keep her calm/safe and some quality of life is more important than giving her the brutal truth. She is never going to get better she is only going to deteriorate

If I have to tell her she WILL go home when she gets better to keep her calm and happier than that is what I do. I have even promised her she will go home when she is better because I know that will never happen. Not that she will remember I have said that

We all deal with things differently and have different values and views in life. We need to preserve ours and that of those we care for even if they are completely different

 

[rajahh]

I am surprised that a professional earning his/her living by working in a memory clinic feels that by telling the truth and upsetting someone , that the person will eventually LEARN???????????

My own husband lives with me, has done for 25 years, we have been in this bungalow for 5 years. He asks daily, when is he going home, how much longer must he live here, he says it is ok here but I would prefer to be in my own house with my wife!!!

I cannot even tell him I am his wife as he just cannot believe it.

I just say his wife is very busy and that I am helping her,and that he will be going home soon.

I have watched his face on the few times I try to tell him the truth,he is always amazed and struggles with my responses. All the truth. Does is to cause distress.

Jeannette

 

[1954]

Jeanette

It must be awful for you, my thoughts are with you. At least it is my MIL not my hubby that has the dementia (so far that is!!)

 

[rajahh]

I am not the only member on here in this situation, you just have to ". Go with the flow" easier said than done.

 

[1954]

Yep I agree go with what ever the flow is for the moment

 

[Florriep]

Thank you all so much for your replies - they've really helped.

Dealing with this illness seems to not only put your life, but your principles on hold as well. I've never told so many "white lies" in my life than over these last few years. It doesn't get any easier to be untruthful to someone who when she was well showed us nothing but kindness.

However, your responses, based on daily living have made me much more confident that we're doing the right thing. In the dr's defence, my MiL is always said to "present well" so could have given the impression that she could take more on board than she actually can. Perhaps if the Memory Clinic didn't keep losing her file they would have met her more often and be in a better position to make a judgement! The letter which said we should be more honest ended by saying they'd review her again in a month - that was nearly a year ago, but I think we get on better without them tbh!

 

[1954]

I absolutely agree about putting your values etc out of the window, its awful. I say I am giving information to my MIL that she needs (not you notice that I am lying!!)

 

[at wits end]

I've thought a lot about this thread in recent days, because on Sunday I told my gran (who has been in a NH for six months) that her house had been sold.

I was fed up of the constant wanting to go home, and who has the keys, and who is looking after my house questions. I was fed up with lying to her about her possessions when the house had been cleared, and pretending I would take her home for the day to help sort her stuff, and conversations about adapting the house so she could live wholly downstairs. I was sick of it all so i resolved no more lies and told her the truth.

She cried and I felt like an a**. Suddenly she had always loved the house she had moaned about for the last 40 years. She said she was so looking forward to being able to go home, it was all that was keeping going.

I havent seen her since, I'm going this afternoon. In some ways I hope she remembers the conversation, and can start to settle. But in reality I suspect it will just throw up a whole new set of questions around where else she can live, she wants to be anywhere but the NH, even though she admits it is a lovely place.

My guilt has lessened and I have felt better in myself now she knows the truth. But I fear I may have broken her little heart unnecessarily, living a lie is hard work, but dementia is even harder.

I'll report back later how she was, if she has forgotten the conversation I dont think I will be reminding her of it.

 

[Scarlett123]

I am surprised that a professional earning his/her living by working in a memory clinic feels that by telling the truth and upsetting someone , that the person will eventually LEARN???????????

My own husband lives with me, has done for 25 years, we have been in this bungalow for 5 years. He asks daily, when is he going home, how much longer must he live here, he says it is ok here but I would prefer to be in my own house with my wife!!!

I cannot even tell him I am his wife as he just cannot believe it.

I just say his wife is very busy and that I am helping her,and that he will be going home soon.

I have watched his face on the few times I try to tell him the truth,he is always amazed and struggles with my responses. All the truth. Does is to cause distress.

Jeannette

I absolutely agree with every word. John knows I'm his wife, most of the time, but also thinks, occasionally, that I'm his Mum. She died from TB when DH was 10, so we're talking over 60 years ago, but he asks me "are you my Mum, have I been a good boy?", which is heartbreaking.

I admit I probably lie every day. If DH asks me when he's going to get better, I answer "well, these things take time, as you know ..." and leave it at that. I'm amazed that a so-called professional thinks that someone with dementia should be constantly told that they'll always live in the care home, as if regularly repeating this would make it sink in!

I think this is definitely a case of the carer knows best, as we know our loved ones better than anyone. How many times does a compus mentis friend enthusiastically ask if we like their new hairstyle, and we think it's awful? Yet, because we like the friend, personally I'd say that it looks great!

Take care.

 

[Canadian Joanne]

She died from TB when DH was 10, so we're talking over 60 years ago, but he asks me "are you my Mum, have I been a good boy?", which is heartbreaking.

It broke my heart to read that and brought tears to my eyes.

 

[at wits end]

Well I went to see Gran, she didnt throw me out!

She didnt mention the house at all so neither did I, but she did talk about moving elsewhere, so I lied a little and said I'd look into it. I think she remembers but is blocking it out now.

Lovely visit actually, though she did seem a bit wobbly on her feet.

 

[Scarlett123]

It broke my heart to read that and brought tears to my eyes.

The sad thing is that John was evacuated at the age of 2, and when he returned, his Mum was already in a sanatorium, so he never knew her. I always have the sub titles on the TV, partly because I can't hear so well, and partly because DH gets so much pleasure watching the quiz shows.

The answers are often shown before the contestant answers, so John reads them, and when the answer is given, he's excited because he got it right and calls out "John's right again!" I always praise him, and I often think that he never got the encouragement he should have had, when he was younger.

 

[garnuft]

Compassionate every time, Dementia is as unimaginable to me as it is to my mother.

Self-preservation Society.

I am glad. Why would you want to know the pity in which the world views you?
How they disregard your views?
How little your opinion seems to count?
How they ridicule your mistakes and take it on board as their troubles, leaving your dignity behind at the expense of the sympathy others derive for being your carer?

To me it does count, even if it's the wrong opinion, it's my Mam's.
She doesn't need to have her fate rubbed in her nose all the time, dying is a frightening thing, anyone who says otherwise is not being honest, IMO.

Mam said to me today 'I think every night, as you do when you're 85, will I wake up in the morning?'.
We were talking about an old lady who was celebrating her 106th birthday...'too long' we both said.

Different thing when it's you.

Compassion, kindness, lies and avoidance of the truth.
Comfort to the end, that's what I shall give me mother, if the old b*gger doesn't finish me off first.

 

[marisarose]

telling a kind lie

Hello there, your post really resonated with me. My dear Mum was in a CH for 4 years. Only once at the beginning did my sister tell her that she was not well enough to go home and would have to stay there, I will never forget her face, she was heartbroken. From then on I always told her that she would stay in the CH until she felt better. I told her that I was doing her housework in her flat and my sister was doing her garden. It always comforted her, and really what is the point of keep giving her heartbreak, even for the short time she remembers it. I have never regretted telling her those kind lies, I know I did the right thing and actually I really would have taken her out of the CH if she had improved, but we had to let her flat go as it was owned by a trust. For a consultant to say eventually she would have taken the words in is ridiculous. Her memory was only about 30 seconds sometimes and it would never have improved. Please do what you know to be right and what you know will comfort her. All the best, thinking of you and your husband (and of course your MIL). Linda

 

[jaymor]

I really believe your MIL is at the stage where nothing will stick. Either way she will be upset by your answer only to forget again. I think I would prefer to be upset but have hope for a few minutes than be upset and have no hope for a few minutes. Compassion for me every time.

Jay.

 

[Witzend]

When my mother first went into the CH, staff told me that I should tell her this was her home now. And maybe it was all right when they said it. However, whenever I visited (for the first several months at least and on and off ever since - nearly 6 years now) it was an endless litany of 'I want to go home!' and 'Get me out of here!' And a very angry litany at first. So it was all very well for staff to say it, but I do think it's often very different for the family.

What I did was say whatever it took to keep her (relatively) happy for the moment. She could not remember anything from one minute to the next, so what I hit on was to say I was looking for a nice little flat for her, just down the road from me, and as soon as I found a nice one we'd go and have a look together. This invariably pacified her for the moment (she was an inveterate 'mover' anyway) and she never remembered that I'd said exactly the same before.

IMO it's all very well for CH staff or other professionals to say this or that, but people often behave completely differently with non-family, and it's family who often get it in the neck for 'putting them there'.
If a person's short-term memory is already very bad, for myself I would recommend whatever little white lie will keep them happy for the moment. In such cases you can recycle the LWLs endlessly - heaven knows how many times I used mine, though they're becoming less necessary now, and when she talks about 'home' it's her parents' home she's thinking of.

So I say I'll give her parents (dead 30 odd and 50 odd years) a ring when I get home and see when they'd like us to go - we wouldn't want to go all that way and find them out, would we?

 

[jyjulie]

I think that instead of looking at the words being said 'I want to go home' you should think of the feelings that are being conveyed. This phrase could mean that they are feeling a need for security/privacy etc. If you pay attention to the feelings behind the messages and acknowledge those feelings you may find it easier. An earlier message said that if you upset them then it wont matter because the will soon forget that. I disagree, they may forget or not remember the words that have upset them but the feeling of ill being will remain with them. I would try to look into why they are feeling the need for security or privacy and if this is being addressed by the care home.

 

[Green Granny]

So helpful

This thread has been so helpful to me. My husband is relatively fine a lot of the time and the progress downhill has been very slow. But I realise that for some years now we have kept news of "bad things" from him but we thought that a) he would be very upset, b) not understand the implications and c) would forget after the initial distress. He hasn't been told about a daughter's serious illness or the fact that a son is gay (that's not a "bad thing", of course, but would be difficult for him, I hasten to add). And other minor things, other people's minor ills, problems with friends and neighbours etc.
I have wondered whether we are excluding him too much but he seems to have his own little world, based largely not only round his own childhood but the childhood of his father! His family always heard so much about some perfect upbringing the father had had! So going back well over a hundred years.
But I think although we try and make life as happy and peaceful for him as possible, that we are also trying to protect ourselves in some way too. We do our best but it's not always easy, especially when you have to react quickly and don't have time to think.
I am full of admiration for people on this forum -what love and care you show!

 

[cathy baldwin]

Communication is often a grey area with dementia, often we assume meaning in what the person might say, based on how we perceive the words used. If the factual information in the brain has been damaged, is is likely that the person is talking about where they 'feel' they are or expressing an unmet emotional need.

If you insist on your reality, you may be overlooking what the person needs to feel, relaxed and calm.

First point is that MIL is stating a fact, this is NOT her home as she remembers it, nothing you say is likely to convince her of something she believes.

Second point is that she may not be talking about a physical place but more about what she is feeling on an emotional level. Think about what 'home' means to you? Comfort, safety, security, familiarity? Where you 'belong'? Is it possible that MIL is saying she is feeling insecure and uncomfortable as she doesn't know what she is supposed to do in this place?

I am uncomfortable with the suggestion that if you tell her often enough it will sink in, if this lady has damage to her hippocampus (part of the brain that stores new memories) then she is physically unable to hold the information, therefore each time you say it, she is hearing it for the very first time - not helpful.

You can explore her meaning by validating the emotions she is expressing, "you must miss your house very much but we love having you here with us". Try to engage her in something that might help her to feel useful, perhaps some light housework or preparing the meal together?

There is rarely a simple solution but it can make a big difference if you focus on the feelings rather than the facts.

Good luck!