Coping Strategies - conversation routines

[Poulet]

Hello,

New to the forum and this is my first post. My father has vascular dementia, and lives with my mum who is his only carer at the moment. He has been diagnosed for about 4 years. He is better at home in a stable routine, copes fairly well in conversations when in company although with a fair bit of repetition, but when he's on his own with mum, the whole day is a series of conversation routines, about the past or a favourite selection of ideas and experiences that aren't real (e.g. what he's got wrong with him, thinking he's paid for people to work on the house and they haven't come to do the work etc.), . Mum has tried both going along with whatever he's saying, and also tried explaining what is true and what isn't. Unless she is very engaged each time (and that can be many multiple times of the same routine in the same morning or afternoon) he gets irate with her for not caring enough or supporting him. Those of you who know this experience will know how wearing and frustrating it is - do you have any coping strategies I can recommend to Mum? I have suggested she join this forum, but she's trying not to see too far ahead with this at the moment as she finds it very depressing. Thank you.

 

[Grannie G]

Hello Poulet

I`m sorry to be negative but there`s no guarantee any strategies for coping , if they work, will continue to work.

There`s a helpful Thread here which the majority of us have appreciated but no one has found to be foolproof.

https://forum.alzheimers.org.uk/sho...ionate-Communication-with-the-Memory-Impaired

 

[saskia]

aah - the exhausting conversations!

there is an excellent book I have read 'Contented Dementia' by Oliver James.

Really gives some fascinating conversation idead for dementia - -however, I do agree with granny g - there is no foolproof answer to these.

this week my mum (in her CH)
-has had to get ready from a visit from the queen - would not give this up.
-has to go back to work (this is on repeat as she used to be a carer)
-thinks she is in a private hospital - next visit, she is at home where she used to live
- one visit my dad has died (he has) the next, its my brother who has died (he hasn't
- yesterday, she was on a loop about where she was going to be buried!

you go through a myriad of emotions with each conversation - sometimes I think I am an excellent actress as the love lies / going along with it - I surprise myself with what I'm talking about.

But its my mum - if she wants to talk about nuns in her garden (yep - no idea either!) than that's what we will do.

photos are the best & does get very very repetitive -but for my mum - its the first time she's seen them years!

all the best

sas
x

 

[LilyJ]

When someone finds out please do tell me!

 

[Witzend]

I just used to go along with whatever my mother came out with, however odd - would make appropriate 'agreeing' or 'oh yes?' noises.
It was harder when she had an irate bee in her bonnet and would go on and on about something that was all in her own head - most memorably when she got the idea that her sister had 'stolen' their mother's house. I did find it very difficult to hear her so nastily slagging off my poor aunt, but it was no earthly use trying to convince her - when I tried I was just 'in league' with my aunt.
So I started saying e.g., 'Dear me, that's awful, I had no idea, I'll get on to a solicitor first thing tomorrow.' Had to repeat over and over, but it would pacify her for the moment.

On one occasion with my FiL, we found it quite interesting when he started telling us that he'd found his housekeeper (he'd never had such a thing) in bed with a MAN, the shameless trollop!
He had recently stayed with Bil and SiL for a few days (to give me a much needed break) and eventually we worked out that a) he had thought theirs was his own house, b) SiL was the housekeeper, since she did all the cooking and cleaning, and c) since he was apt to wander at night, in and out of other people's bedrooms, SiL was the trollop, since he'd found her in bed with BiL!

More than once I've twigged that something has triggered whatever it is. In the case of my mother and the 'stolen' house, she had recently paid a very rare visit to her sister, who still had a number of things from their childhood home.
Those things that had been so familiar way back, made her think it WAS their childhood home, and so her sister must have stolen it.

 

[Poulet]

Thanks Grannie G - I have followed up the thread and copied the Compassionate Communication article. Looks helpful.

 

[Poulet]

Thanks Witzend.

Interesting how you could trace some of the narratives back to actual situations that had triggered them. Dad's got a thing going about the side gate - nine years ago someone quoted to put one in, they decided for various good reasons not to go ahead and out of the blue he's like a dog with a bone with it. But I'm now wondering if it just reflects his general feelings of insecurity.

 

[Scouts girl]

Oh how do we cope with trying to have a 'normal' conversation with a person with dementia. My mum is deteriorating to the state that I cannot now hold a reasonable conversation with her. I'm visit nearly every day to see her but it is the same conversation with her.

>I am so unhappy here, please take me somewhere where I can get better
>why are there children in my room??
> when is your mum coming to see me??
> you don't know what it is like here, you don't want me any more
> I just want to die please help me, I can't go on like this
Etc., etc.,

I just find it so upsetting and stressful having to sit and listen to my mum and if I agree with what she is saying she will just say "well do something about it then" and if i disagree she just gets so agitated and says " you don't understand, you don't care about me" She won't now come out of her room, and says how lonely she is, but try as I and the carers can she now refuses to go into the lounge which she used to enjoy being amongst the other residents and at least it was nice for us to have the distraction of the others but just to be in her room day after day is just causing her to become more apathetic and withdrawn.

I know I shouldn't visit so often as it is just so distressing for us both, but if I don't go, I sit at home wondering how she is and is she thinking I have abandoned her. I know she is probably entering into the final stages of her dementia but just want her to be as relaxed and contented as one can with this awful illness. The doctor has prescribed medication to help but as she says there is only so much one can do at this stage.

I just want it all to end and my lovely mum to have some peace. Does that sound heartless?.

 

[Fullticket]

Hi Poulet, I am sure you will find a lot of information here.
I think looking after someone with dementia is different for each of us. All I can add is what is driving you mad at the moment will be replaced soon enough with something else that will drive you equally as mad but is, at least, a change.
I try to find a link or thread that will take me to what is really concerning my mum and sometimes come up with a reason. Sometimes there just doesn't seem to be a reason I can fathom but may well come from something that happened in mum's life that I know nothing about - and just as likely it is something she has imagined.
Love lies, distraction, whatever it takes, go with it. And if you sometimes have to walk out of the room or, in my case, go down to the vegetable plot and scream, then do it.
Maybe that's why the beans are not doing so well this year...

 

[Anney63]

Oh how do we cope with trying to have a 'normal' conversation with a person with dementia. My mum is deteriorating to the state that I cannot now hold a reasonable conversation with her. I'm visit nearly every day to see her but it is the same conversation with her.

>I am so unhappy here, please take me somewhere where I can get better
>why are there children in my room??
> when is your mum coming to see me??
> you don't know what it is like here, you don't want me any more
> I just want to die please help me, I can't go on like this
Etc., etc.,

I just find it so upsetting and stressful having to sit and listen to my mum and if I agree with what she is saying she will just say "well do something about it then" and if i disagree she just gets so agitated and says " you don't understand, you don't care about me" She won't now come out of her room, and says how lonely she is, but try as I and the carers can she now refuses to go into the lounge which she used to enjoy being amongst the other residents and at least it was nice for us to have the distraction of the others but just to be in her room day after day is just causing her to become more apathetic and withdrawn.

I know I shouldn't visit so often as it is just so distressing for us both, but if I don't go, I sit at home wondering how she is and is she thinking I have abandoned her. I know she is probably entering into the final stages of her dementia but just want her to be as relaxed and contented as one can with this awful illness. The doctor has prescribed medication to help but as she says there is only so much one can do at this stage.

I just want it all to end and my lovely mum to have some peace. Does that sound heartless?.

Hi Scout Girl
No yout not heartless at all. I visited my mil today as I do every week. It's breaks my heart she has bruises where she keeps fighting with her twin sister who is also in the same place. She can no longer see as her eyesight has gone with macular degeneration. She looked so tired and worn out and today she told me she's not tired just weary. There were tears she just not longer wants to be here. I love her dearly but she is just worn out and I wonder how long she is going to go on with no quality of life she is 96 . Such a dear sweet lady I was so close to and love so much. My husband died 10 years ago he was her only child but she doesn't remember him or who I am just that I'm someone who cares. So I do understand how you feel .

 

[Moose1966]

Oh how do we cope with trying to have a 'normal' conversation with a person with dementia. My mum is deteriorating to the state that I cannot now hold a reasonable conversation with her. I'm visit nearly every day to see her but it is the same conversation with her.

>I am so unhappy here, please take me somewhere where I can get better
>why are there children in my room??
> when is your mum coming to see me??
> you don't know what it is like here, you don't want me any more
> I just want to die please help me, I can't go on like this
Etc., etc.,

I just find it so upsetting and stressful having to sit and listen to my mum and if I agree with what she is saying she will just say "well do something about it then" and if i disagree she just gets so agitated and says " you don't understand, you don't care about me" She won't now come out of her room, and says how lonely she is, but try as I and the carers can she now refuses to go into the lounge which she used to enjoy being amongst the other residents and at least it was nice for us to have the distraction of the others but just to be in her room day after day is just causing her to become more apathetic and withdrawn.

I know I shouldn't visit so often as it is just so distressing for us both, but if I don't go, I sit at home wondering how she is and is she thinking I have abandoned her. I know she is probably entering into the final stages of her dementia but just want her to be as relaxed and contented as one can with this awful illness. The doctor has prescribed medication to help but as she says there is only so much one can do at this stage.

I just want it all to end and my lovely mum to have some peace. Does that sound heartless?.

I have replied to you before as everything you are going through is so similar to me, I have been today to see mum as I do most days in her CH , she doesn't mix , won't come out of room , says it's her fault she's in care and that I should leave her as she deserves to die. It's heartbreaking and I sympathise with you so much, I'm even thinking about bringing her to live with me and my family, surely it must be easier if she's slightly happy in a homely environment, but and the big question is can I do it 24/7 can I keep her safe, she's so sad and the guilt I feel is massive, I put her into care home for her safety and now she's so sad and it's my doing . Oh the weight on my shoulders is taking its toll on me and as you know it's the same each day, sometimes I think one day she will thank me for what I've done ! My mum tells me daily how she's planning how to throw herself into a wall so that she ends up in hospital or better still dead, how do you reply to that.....I hope you have good support from CH and family as it is draining . Please keep in touch as I feel our paths are taking a similar route.

 

[father ted]

Agree with Fullticket and LilyJ.

The experience varies so much for all of us. Conversations that make no sense are as draining as the repetitive ones. I have no answers and I must say I find it very hard to practice Compassionate Communication.

In the early days I would correct Mum and put her right as she had asked me to never let her say strange things or repeat herself when she first got her diagnosis but as time goes on this does become harder as she is adamant about whatever it is and there is no point in correcting her as this makes things worse. Chat is on a superficial level. Information is on a need to know basis and kept brief. If it all gets too much for me I make myself scarce ( we live together ) on the pretext of having to do hoovering, cooking, dusting, make a phone call etc and go and sit alone somewhere, take a deep breath and go back when I've calmed down.

 

[Scouts girl]

I have replied to you before as everything you are going through is so similar to me, I have been today to see mum as I do most days in her CH , she doesn't mix , won't come out of room , says it's her fault she's in care and that I should leave her as she deserves to die. It's heartbreaking and I sympathise with you so much, I'm even thinking about bringing her to live with me and my family, surely it must be easier if she's slightly happy in a homely environment, but and the big question is can I do it 24/7 can I keep her safe, she's so sad and the guilt I feel is massive, I put her into care home for her safety and now she's so sad and it's my doing . Oh the weight on my shoulders is taking its toll on me and as you know it's the same each day, sometimes I think one day she will thank me for what I've done ! My mum tells me daily how she's planning how to throw herself into a wall so that she ends up in hospital or better still dead, how do you reply to that.....I hope you have good support from CH and family as it is draining . Please keep in touch as I feel our paths are taking a similar route.

Yes this has all taken its toll on me too but I know I must try and come to terms with everything as I can't go on every day worrying myself about her. I feel her life now is absorbing mine and she is constantly in my thoughts. I am trying to reduce my visits to her as like yourself the visits are not pleasant and mum just keeps repeating how unhappy she is and she just wants to die and I am to blame for her being where she is. A frequent phrase she uses is "I won't be here tomorrow when you come you know" as you say how do you respond to that??? I wish I could wave a magic wand and make the rest of her life content for her but, of course, I can't. The GP has reviewed her medication recently so I am hoping that may have some improvement on her depressive state but I just don't think she will be happy wherever she is now. Please don't think about bringing your mum home, as you won't manage 24/7 and your health and wellbeing will be affected. I would love to bring my mum home to me but I know that I cannot give her the specialised care she now needs and a safe environment and I would again reach carers breakdown as I did at Christmas last year. We just have to accept that we did the only thing we could in keeping our mums safe and just keep bashing away at that guilt monster!!! I have fantastic support from my family and friends, staff at the care home and from the carers support groups I attend and, like you, I just hope that one day mum will know in her heart that I did this through love for her and not because I didn't want to care for her any more and I will walk into the care home one day and see her lovely smile again. Dementia is heartbreaking but it has happened through nobody's fault, I just wish it had not happened to my dear mum. Please keep in touch, as you say our journeys are very similar and TP has been such a great support and relief for me these last few months. Take care xx

 

[Moose1966]

Yes this has all taken its toll on me too but I know I must try and come to terms with everything as I can't go on every day worrying myself about her. I feel her life now is absorbing mine and she is constantly in my thoughts. I am trying to reduce my visits to her as like yourself the visits are not pleasant and mum just keeps repeating how unhappy she is and she just wants to die and I am to blame for her being where she is. A frequent phrase she uses is "I won't be here tomorrow when you come you know" as you say how do you respond to that??? I wish I could wave a magic wand and make the rest of her life content for her but, of course, I can't. The GP has reviewed her medication recently so I am hoping that may have some improvement on her depressive state but I just don't think she will be happy wherever she is now. Please don't think about bringing your mum home, as you won't manage 24/7 and your health and wellbeing will be affected. I would love to bring my mum home to me but I know that I cannot give her the specialised care she now needs and a safe environment and I would again reach carers breakdown as I did at Christmas last year. We just have to accept that we did the only thing we could in keeping our mums safe and just keep bashing away at that guilt monster!!! I have fantastic support from my family and friends, staff at the care home and from the carers support groups I attend and, like you, I just hope that one day mum will know in her heart that I did this through love for her and not because I didn't want to care for her any more and I will walk into the care home one day and see her lovely smile again. Dementia is heartbreaking but it has happened through nobody's fault, I just wish it had not happened to my dear mum. Please keep in touch, as you say our journeys are very similar and TP has been such a great support and relief for me these last few months. Take care xx

Every word you say is spoken from my heart...I also had this last Christmas so the timeline is similar, and yes support from family and friends is priority it helps so much.