Tips for conversations, anyone?

[Helen33]

Hello again CG. It may be possible that your mum doesn't feel comforted or confused but she does what she can by being on the phone and asking if you want to talk to B. It may not seem much but it will be sad if the day comes and she us not able to be on the phone at all. I think the sense of powerlessness carers have to cope with is truly dreadful. Awful to know that one can't make it better. I do believe that 'acceptance' can often help one feel better about some situations that can't be changed.

I hope I don't come across an cold or hard and uncaring but nothing could be further from the truth. I really feel for you because you are facing such a painful thing as a daughter. Although you may not be able to help your mother in this situation it doesn't mean there is no help for you.

Love

 

[CollegeGirl]

Thank you both.

AG, don't we love talking about the weather! It's something we've always done and is maybe why mam can still relate to it on some level. With my mam, it's not so much what she can see - because she often has trouble 'seeing' what we see - but what she feels, such as hot or cold. I'm glad your mum enjoys looking out of the window and watching the world and the weather go by. This is something I enjoy doing myself actually! People watching is one of my favourite things!

Helen, you don't come across as cold or anything like that! You are, I feel, a very perceptive person. Mam still knows that to pass the phone to my dad means that I can carry on talking to him, and that means a lot.

Actually, mam speaking to me on the phone is a recent improvement, and one that I'm very grateful for, even though it's difficult. For about a year, while she was in the grips of a very aggressive phase, she just wouldn't, couldn't or didn't want to talk to me whenever I rang. I actually thought it was because she no longer knew what the phone was any more - she certainly can't make a call herself any more - but as she began to come out of that phase, she started to talk to me again when I ring.

It's wonderful in one way, but it hurts my heart to hear how confused she is by any question that I ask of her. If I ask 'are you feeling okay?' for instance, this completely phases her, because she doesn't know what I mean. I'd love to find a question that I could ask her that she would be able to understand, and answer me properly. Perhaps that's a wish too far .

 

[Helen33]

Hi CG,

Have you considered consulting with a speech and language therapist experienced in dealing with dementia patients families? I found ours very informative about what Alan was able to understand and how to make communication a positive experience. She pointed out to me instances of when I confused Alan. One instance I remember was when I spoke to Alan when he was concentrating or doing something else. She showed me that his brain can't just switch to another subject like it used to. Positive communication needs to be short and simple but it also uses body language and facial expression. This can't be done over the phone. Maybe making a very short statement to your mum rather than a question!! There is a chat room on TP now and they sometimes have topics. I wonder whether you might like to request a speech and language therapist to host a topic such as positive communication? I've only been to the chat room once, on Thursday, and I really liked it.

Love

 

[21citrouilles]

Oh, do I empathise with you! Your words describe me experience perfectly.

The longest conversation I had with my mother in the last months is 11 minutes. Usually it's between two and five minutes. She's always in a hurry to get off the phone.

Sometimes I think that I suffer because : 1. I rack my brains for the communication to flow, but it doesn't work. 2. I want us to share something meaningful, but it doesn't appear meaningful to me. 3. I want to give her something that she doesn't have the capability to take anymore. 4. These conversations are such pitiful nuggets compared to the richness of exchanges we had before.

What has worked best are memories from our shared past, sometimes. Some people here in this thread have suggested really great things. They seem to be able to get in the mind of a dementia sufferer and understand what she/he needs.

For me, it's hard to witness my mother's world continue to shrink and her mind to deteriorate. We're not born to accept things that regress - we have to grow into it.

Thanks for introducing this subject.

 

[CollegeGirl]

Hi CG,

Have you considered consulting with a speech and language therapist experienced in dealing with dementia patients families? I found ours very informative about what Alan was able to understand and how to make communication a positive experience. She pointed out to me instances of when I confused Alan. One instance I remember was when I spoke to Alan when he was concentrating or doing something else. She showed me that his brain can't just switch to another subject like it used to. Positive communication needs to be short and simple but it also uses body language and facial expression. This can't be done over the phone. Maybe making a very short statement to your mum rather than a question!! There is a chat room on TP now and they sometimes have topics. I wonder whether you might like to request a speech and language therapist to host a topic such as positive communication? I've only been to the chat room once, on Thursday, and I really liked it.

Love

Helen, that's a really interesting idea that I will explore. How would I go about finding and contacting a Speech and Language Therapist? I also love the idea of a therapist hosting a topic in the chat room, but I've never been able to go onto it yet because I'm always at work when they're on. I'm hoping the service expands in the future to cover varied time slots because I'd love to join in.

Since starting this thread I've been giving everything a lot of thought, and taking everyone's ideas on board. I think I'm realising that short and sweet is the way to go.

For instance, it's no good me saying "Hi mam, how are you, isn't it cold today, did you have to wear your gloves, it's been freezing, hasn't it?" because that's just too much for her, confuses her, and possibly upsets her. Looks obvious when it's written down, but this is the sort of thing I've been saying and getting gabbled nonsense responses as a result. No wonder .

Break it down. Maybe start with a short statement - "Hi mam, just rang to see how you are," with a pause for her to say something, if she can, then one short question - "Isn't it cold today?" and see if she can answer. And so on. Perhaps then I have a shot at a nice conversation.

What do you think? Am I on the right track?

 

[CollegeGirl]

Oh, do I empathise with you! Your words describe me experience perfectly.

The longest conversation I had with my mother in the last months is 11 minutes. Usually it's between two and five minutes. She's always in a hurry to get off the phone.

Sometimes I think that I suffer because : 1. I rack my brains for the communication to flow, but it doesn't work. 2. I want us to share something meaningful, but it doesn't appear meaningful to me. 3. I want to give her something that she doesn't have the capability to take anymore. 4. These conversations are such pitiful nuggets compared to the richness of exchanges we had before.

What has worked best are memories from our shared past, sometimes. Some people here in this thread have suggested really great things. They seem to be able to get in the mind of a dementia sufferer and understand what she/he needs.

For me, it's hard to witness my mother's world continue to shrink and her mind to deteriorate. We're not born to accept things that regress - we have to grow into it.

Thanks for introducing this subject.

Oh I could have written your post! It's heartbreaking to watch a person you love, who looked after you, loved you, taught you so much, disappear and regress. Truly heartbreaking.

When on the phone to my mam I tend to panic and garble. I'm becoming nervous of talking to my own mam! How ridiculous that sounds, but it's true.

Perhaps we can learn together, and share our experiences on this thread? Much love, haven't heard much from you lately, hope all is well?

 

[Anongirl]

Helen, that's a really interesting idea that I will explore. How would I go about finding and contacting a Speech and Language Therapist? I also love the idea of a therapist hosting a topic in the chat room, but I've never been able to go onto it yet because I'm always at work when they're on. I'm hoping the service expands in the future to cover varied time slots because I'd love to join in.

Since starting this thread I've been giving everything a lot of thought, and taking everyone's ideas on board. I think I'm realising that short and sweet is the way to go.

For instance, it's no good me saying "Hi mam, how are you, isn't it cold today, did you have to wear your gloves, it's been freezing, hasn't it?" because that's just too much for her, confuses her, and possibly upsets her. Looks obvious when it's written down, but this is the sort of thing I've been saying and getting gabbled nonsense responses as a result. No wonder .

Break it down. Maybe start with a short statement - "Hi mam, just rang to see how you are," with a pause for her to say something, if she can, then one short question - "Isn't it cold today?" and see if she can answer. And so on. Perhaps then I have a shot at a nice conversation.

What do you think? Am I on the right track?

Because for a while now (even before the care home) my conversations with mum have had a negative undertone due to mum's anxieties I try to keep the conversation upbeat (my brother actually taught me this, not to get sucked into the negativity!).

Example from last week:
Me: Hiya mum. Just ringing to see how you are.
Mum: not good. They've got my coat you know.
Me: no it's fine. It's safe in your wardrobe. Are you having a good day?
Mum: hmm, not really.
Me: it's really windy today. Have you seen it?
Mum: no, I can't go out. It's too windy.
Me: *grandson* nearly blew away it was so bad!
(Trying to get a smile, it sometimes works!)
Mum: (turns to tell the person next to her what I'm saying then forgets she's on the phone to me!)
Me: mum, mum..
Mum: yes
Me: I love you
Mum: you do surprise me. You do say funny things.
(Turns to tell the person next to her then walks away from the phone)

That was a good day!

 

[FifiMo]

Hiya CG,

On thing that they say is that music can sometimes get through when words don't. I was remembering CeiliaW telling us of her and her mum singing on the phone. I know my mother surprised us when she didn't know what day it was but knew the words to loads of songs. Is there a song in particular that your mum might remember? Maybe one you remember her singing when you were a kid? Some simple little ditty. You could say you heard it on the radio today and thought of her.

Fiona

 

[CollegeGirl]

Aw, AG, that's the sort of conversation I'm aiming for! I know your mum's answers weren't what you wanted, but at least they made sense. A good day indeed .

Hi Fiona, thanks for that suggestion - mam loved singing, was always singing round the house, and had/has a very good voice. I will give your suggestion a try.

xx

 

[Helen33]

Dear Anongirl and CG,

It was a really good way of understanding a little of the conversations and although I must emphasise that I am not an expert by any means, I could see that you are attempting to get your mother to be where you are in order to make it satisfactory for your mum and you. You really do need to be where your mum is instead. For example
When mum says she does not feel good and then says they've got her coat. Your reply in fact showed you were not with her. You told her she was wrong. I wonder whether it might have been better to be really with her and say something like "oh dear I will get it back for you - try not to worry".

I hope this helps. I do feel rather anxious in case my written word comes across as critical which is not my intention.

Love

 

[Anongirl]

Thanks Helen33. Problem I find with mum is that it's far too easy for her to get frustrated with what I say, it doesn't matter what words I use. If you try to reassure her, e.g "I'll get it for you, don't worry" as I have tried, the reply would be invariably "oh it's easy for you to say don't worry, you're not a prisoner" or "you only see what you want to see" was a reply when she said she wasn't happy at the care home and I asked why.

Sometimes it's just not worth the mental exhaustion of entering into a conversation about whatever it might be. I have literally had the phone slammed down on me hundreds of times. It's a bit easier now I know she's safe when she slams it down because before I would ring her back to reassure her only to have it slammed down again.

 

[CollegeGirl]

Semi successful phone conversation this morning; this is roughly what was said, after dad passed her the phone and told her it was me, wanting to talk to her:

Mam: Hello, is that CollegeGirl?
Me: Yes, hi mam.
Mam: What's the matter with you?
Me: Nothing, isn't it a lovely day?
Mam. Hmmm, well, not too bad.
Me: Maybe you could go for a run out?
Mam: That's what we thought. B will tell you all about it ... (Goes to pass phone back to dad) ...
Me: Hang on mam ... I might do a bit of gardening today.
Mam: Yes well you need to find the person to do it all about, don't you?
Me: Yes, but I'll manage. Are you going for a walk in the park?
Mam: Hmmm well that's what I think, but now I'm just going back in there to do it all.
Me: You could get yourself an ice cream!
Mam: (Laughs) Yes, we can all do that. What I'm going to do now is to give this back to B ...
Me: Hang on mam, before you go ... I love you.
Mam: Hm? You love me? Oh, well, okay, er, thank you very much.
Passes phone back to dad.

As you can see, actually persuading her to stay on the phone is difficult. Am I doing the right thing by trying to keep her on for a bit longer or should I let her go when she first wants to? If so, our conversation would have lasted only 30 seconds. Is that enough? Am I doing this for myself or for my mam? Would it bother her if she never spoke to me on the phone ever again? I suspect not. I may be torturing myself for nothing. Perhaps it would be better to leave it? I do it for dad too. I talk to dad often and don't want mam to feel I only ring to speak to him and not her (she said this once, but I don't know if it still bothers her).

Why do I never know whether I'm doing the right thing?

PS Helen, you don't seem critical. I asked the initial question because I wanted help and suggestions, and that's all you're doing, it's all everyone is doing, and I'm grateful. It's very thought provoking xx

 

[Helen33]

Dear AG and CG,

First of all thank you for helping me be at ease that I am not offering unwanted suggestions

AG when your mum would then say "it's alright for you to say don't worry as you're not kept prisoner". It is about you staying with her by saying something like "you're right mum of course it is worrying". I think the whole point is about trying to create the kind of feeling anyone has when they feel 'known' and 'understood' and being aware of what it feels like being with someone who doesn't listen and someone who keeps changing the subject.

CG when your mum said "what's the matter with you?", you replied "nothing, isn't it a lovely day" can you see that you didn't stay with her but changed the subject? I wonder what you might have said in order to stay with her thoughts at that moment?

I, too, hope the chat room uses other time slots. The current time is really inconvenient for me.

Love

 

[CollegeGirl]

Hi Helen - yes, I can see what you mean, and did wonder about it afterwards, I must admit!

When it's written down, it's difficult to convey the tone of her voice. She said it in an accusatory way, quite aggressively, not in a concerned motherly way. Saying 'nothing' was my first instinct because I didn't want to continue a negative train of thought. Do you have a suggestion as to what I could have said instead as I'd be really interested and it might help me next time.

I wasn't expecting her to say what she said. In fact, she might have not meant it the way it sounded - what she might have intended to say was something like "Are you okay?" but maybe couldn't find those words when put on the spot.

On a much more positive note, mam and dad have been round this afternoon and we have had such a lovely, lovely visit!

It started off okay, but then started to deteriorate a little. I realised that mam needed more attention. I think this might be something I have to do when they are round together, to focus on mam rather than dad. I can concentrate on dad when I see him on his own.

So I started by giving her a manicure. She seemed to enjoy that. She has lovely soft hands, so I told her so, several times, and she was pleased. We had a little sing song - my hubby and dad had gone out of the room to do something, and I said that she'd always loved singing, hadn't she, and that that was probably why I love singing also. She took hold of my hand, gave me a lovely genuine smile at me and said "That's good!" I was overwhelmed.

Then I put some of her favourite Doris Day songs on the ipod and speakers. She started by singing along, then she actually got up to dance! Dad came back in and I filmed them both dancing. It was wonderful. They also danced to Shirley Bassey's Hey Big Spender, which gave us all a laugh. She said to dad "Do you know you're my husband?" and when he said yes, she said, "Well, you should hold me like this," leaned into him and put his hand on her waist for a waltz! It was so cute.

Afterwards she got a bit tired, so sat back down with a glass of blackcurrant & apple juice and a fig biscuit.

Sorry for the long post, and somewhat off-topic, but I've had such a lovely visit with my mam, I've really enjoyed it.

 

[Helen33]

Hi CG,

I was thinking something like "I wanted to tell you I love you". I can't sort out copy and paste on this ipad so I refer to your 3rd paragraph. Now your thinking here is very like what the S&L therapist showed me. However, she had been able to assess Alan. I am thinking that maybe your instinctive thoughts might be right. Our S&L therapist knew that Alan chose words that were somehow related to what they should ideally be. Eg. He would call me mother - never father or brother. She showed me that he still could tell the difference between male and female in language but couldn't find Helen or wife. So it may be that your mum was meaning 'are you ok?'.

The visit you had today by your dad and mum sounded and felt really wonderful. . You were able to be right with her. She must have seen your loving face and gentle spirit. It was clear that your mum really benefitted from your presence. Alan needed this one to one attention in order to thrive. It is so much easier in the presence of rather than over the phone. I prefer to speak to a person in their presence than speak over the phone.

I loved the image of your mum singing and dancing. I'm glad you filmed them because those moments are unique and it will be a very happy reminder of some of the better times of life with dementia.

Your post was perfect and certainly on topic. These good times need to be shared as well as the difficult times.

Love

 

[CollegeGirl]

Thank you Helen. I love sharing the good times. I need to do this for myself, and I hope it helps others too. We have had quite a lot of bad times, so the good times are precious.

Strangely, I feel somewhat deflated tonight.

 

[Anongirl]

Hi Helen - yes, I can see what you mean, and did wonder about it afterwards, I must admit!

When it's written down, it's difficult to convey the tone of her voice. She said it in an accusatory way, quite aggressively, not in a concerned motherly way. Saying 'nothing' was my first instinct because I didn't want to continue a negative train of thought. Do you have a suggestion as to what I could have said instead as I'd be really interested and it might help me next time.

I wasn't expecting her to say what she said. In fact, she might have not meant it the way it sounded - what she might have intended to say was something like "Are you okay?" but maybe couldn't find those words when put on the spot.

On a much more positive note, mam and dad have been round this afternoon and we have had such a lovely, lovely visit!

It started off okay, but then started to deteriorate a little. I realised that mam needed more attention. I think this might be something I have to do when they are round together, to focus on mam rather than dad. I can concentrate on dad when I see him on his own.

So I started by giving her a manicure. She seemed to enjoy that. She has lovely soft hands, so I told her so, several times, and she was pleased. We had a little sing song - my hubby and dad had gone out of the room to do something, and I said that she'd always loved singing, hadn't she, and that that was probably why I love singing also. She took hold of my hand, gave me a lovely genuine smile at me and said "That's good!" I was overwhelmed.

Then I put some of her favourite Doris Day songs on the ipod and speakers. She started by singing along, then she actually got up to dance! Dad came back in and I filmed them both dancing. It was wonderful. They also danced to Shirley Bassey's Hey Big Spender, which gave us all a laugh. She said to dad "Do you know you're my husband?" and when he said yes, she said, "Well, you should hold me like this," leaned into him and put his hand on her waist for a waltz! It was so cute.

Afterwards she got a bit tired, so sat back down with a glass of blackcurrant & apple juice and a fig biscuit.

Sorry for the long post, and somewhat off-topic, but I've had such a lovely visit with my mam, I've really enjoyed it.

What an absolutely lovely day with your mum. I got a lump in my throat reading that! As Helen says these are memories to cherish. I hate cliches but that one just fits. It's made me so determined to try to get on a level with mum. I will try, as you suggest Helen, to agree with her worries (i.e yes it is a worry) though this goes against my instincts which are to reassure her. As that doesn't seem to work every time I will try a different tack of agreeing with her. Thanks Helen.

To again slightly move from the topic my brother and his girlfriend went to visit mum today. He said she was relaxed and chatty and looked the most healthy he has seen her in a long time (lovely to hear that). She showed him her new room and apart from a couple of niggles didn't complain about living there or ask about going home. She did mention her coat but wasn't wearing it or carrying it which sounds silly but is a huge step forward!

So after his positive visit today, reading your post about today and armed with different ideas on communication I am determined to get the best out of my next visit on Tuesday. I am going to buy her some new pretty things for her new room and some chocolates!

Oh and my mum loves Doris Day too! She has her autobiography by her bed at the CH. Her films have a way of always making you feel happy. Mum introduced me to her films at a young age and I still love them now

 

[CollegeGirl]

Thanks Helen33. Problem I find with mum is that it's far too easy for her to get frustrated with what I say, it doesn't matter what words I use. If you try to reassure her, e.g "I'll get it for you, don't worry" as I have tried, the reply would be invariably "oh it's easy for you to say don't worry, you're not a prisoner" or "you only see what you want to see" was a reply when she said she wasn't happy at the care home and I asked why.

Sometimes it's just not worth the mental exhaustion of entering into a conversation about whatever it might be. I have literally had the phone slammed down on me hundreds of times. It's a bit easier now I know she's safe when she slams it down because before I would ring her back to reassure her only to have it slammed down again.

I know what you mean, AG. My mam often surprises me with her vehement, nasty response to a very innocuous question or statement. She obviously hasn't read the same book about Alzheimer's that I have . I also want to steer her away from negativity, which can escalate into an argument that is impossible for me to win - I shouldn't want to win, should I ? It's so hard knowing what to say, isn't it?

All this effort just for a little conversation! It's exhausting! But the rewards, when they come, are worth it, I think.

xx

 

[Hibni]

Hi CG,

Have you considered consulting with a speech and language therapist experienced in dealing with dementia patients families? I found ours very informative about what Alan was able to understand and how to make communication a positive experience. She pointed out to me instances of when I confused Alan. One instance I remember was when I spoke to Alan when he was concentrating or doing something else. She showed me that his brain can't just switch to another subject like it used to. Positive communication needs to be short and simple but it also uses body language and facial expression. This can't be done over the phone. Maybe making a very short statement to your mum rather than a question!! There is a chat room on TP now and they sometimes have topics. I wonder whether you might like to request a speech and language therapist to host a topic such as positive communication? I've only been to the chat room once, on Thursday, and I really liked it.

I mentioned this to my daughter who is an SLT and she thought it was a good idea.

 

[CollegeGirl]

AG, we cross posted!

So glad to hear the good report of your mum, that's wonderful. Such little things as your mum not carrying her coat - well, that's a huge thing really, isn't it?! We know it is so there's no need to explain how significant that is, we all know.

Another thing I forgot to mention, when mam took hold of my hand, she also took hold of dad's hand too, so there she was, sat in the middle of us, holding both our hands, and singing. I just wanted the moment to last for ever.

One thing that irritated me a bit was that dad kept talking instead of letting her enjoy the music. He was complaining that Doris was singing Secret Love too slow, and wondering why - even though I actually copied it from the film and converted it to a music file, so it's exactly as it was when she sang it in the film. Then when they were dancing to "Oh What a Beautiful Morning" from Oaklahoma, he kept trying to talk about the singer (Don McClure? Edit: No - Gordon MacRae) and how he was a wonderful singer who just seemed to disappear, blah blah. I wanted to shout "Just let mam enjoy the music, dad!" but as usual had to bite my tongue because I don't want to upset him. So mam started to lost interest because she can't concentrate on two things at once.

Ah well. It was still a lovely visit, and my mam enjoyed herself. .

PS - I also love all the old singers and songs and musicals! As well as lots and lots of other stuff. I have a wide and varied taste in music.