Disloyalty

[Ronnianne]

Does anyone else have a feeling of disloyalty and betrayal to their partner, when having to discuss new symptoms/behaviour with the doctor?
I know I should be more concerned about my husbands feelings, but every time we have a meeting, I leave the surgery in tears at my disloyalty to my husband of 50 years. Does it pass? Will it always feel like betrayal instead of a way to try and help him? Sorry for the self-pity, but we have a meeting this afternoon and I'm dreading it.

 

[Izzy]

Oh it's not self pity at all. It's reality. I used to always write down what I wanted to say to either the GP or the memory clinic. I handed it in a day or so before the meeting. That meant I at least didn't have to speak about Bill in front of him.


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[Ronnianne]

thank you

Thanks for that, to be honest, I never even thought of it, but I'll certainly do that from now on

 

[Izzy]

Thanks for that, to be honest, I never even thought of it, but I'll certainly do that from now on

It's certainly worth a try and kept me calmer! Good luck this afternoon.

 

[Shedrech]

hi Ronnianne
I guess feelings may be different between wife and husband, rather than daughter and father - I used to feel a little awkward at times, having to be brutally honest about how dad was, rather than use the careful phrases we all employ at times - but I feel that not telling the medics exactly how things are would be disloyal to dad as then the medics wouldn't have the complete picture and be able to assess him properly - I want the best for dad, and that can only be got through being totally open - I am fortunate, though, as dad has never been upset by or awkward about what I've said - in fact early on, I got the feeling he was grateful I would speak out as then he didn't have to find the words and maybe that was one way he could deal with what was happening, not having to voice it for and to himself
helpful idea of Izzy's to write down what you need to let the consultant know
nothing about dementia spares our blushes or feelings
best wishes

 

[Ronnianne]

hi Ronnianne
I guess feelings may be different between wife and husband, rather than daughter and father - I used to feel a little awkward at times, having to be brutally honest about how dad was, rather than use the careful phrases we all employ at times - but I feel that not telling the medics exactly how things are would be disloyal to dad as then the medics wouldn't have the complete picture and be able to assess him properly - I want the best for dad, and that can only be got through being totally open - I am fortunate, though, as dad has never been upset by or awkward about what I've said - in fact early on, I got the feeling he was grateful I would speak out as then he didn't have to find the words and maybe that was one way he could deal with what was happening, not having to voice it for and to himself
helpful idea of Izzy's to write down what you need to let the consultant know
nothing about dementia spares our blushes or feelings
best wishes

I am honest to the doctor, but having to speak about my husband to an' outsider' seems like I'm betraying my husbands trust, silly, I know, but I was brought up the old way, keep your moth shut if you can't say anything good or kind, but I have been writing sown all the stuff that needs to be said today, so hopefully the doc will read and understand. Thank you so much for the advice, it's deeply appreciated

 

[Sammyjo1]

I can totally understand how you feel you are betraying your husband but is it possible to try and think of it in terms of helping your husband to get the right support? If you were not honest about how things are, then you might miss the opportunity to get help to make things easier for both you and for him.

I hope things go well this afternoon

 

[Izzy]

With me it wasn't about being dishonest. I felt I didn't want to talk about Bill in front of him. Especially in the earlier stages when he could understand what was being said. That's why I found the notes to the medic in advance useful. I was totally honest in these.

 

[Spamar]

You are dong your best by your husband by taking his problems to an expert. Personally I can't see any disloyalty in that. Rather the opposite, imho. I certainly went with my husband to all appts, and he was not bothered, in fact grateful I was there and could tell it as I saw it.
I also used the ploy of sitting out of his sight line, so that could give the doctor an indication of the validity of my husbands answers.

 

[love.dad.but..]

I totally understand how you feel...for me it is dad rather than partner but I put those feelings into the same box that contain the necessary love lies that I have had to use to dad these past 3 years. I rationalise the betrayal feelings by knowing that in giving a true picture of how dad is he can at best be helped by people at worst I have done my best to get him help.

 

[love.dad.but..]

Also thinking on from your post subject....in the same way that when my children were young I felt relieved pleased and proud to be told they were nice children who caused no problems I feel the same illogical and irrational relief when am told Dad hasn't been difficult when I visit....something totally out of dads control or capability lacking in mental capacity to be they way he was!

 

[Dazmum]

With me it wasn't about being dishonest. I felt I didn't want to talk about Bill in front of him. Especially in the earlier stages when he could understand what was being said. That's why I found the notes to the medic in advance useful. I was totally honest in these.

That's exactly how I feel with my mum Izzy, I always told her I would never talk about her behind her back especially in the early days, but eventually I understood that I had to tell the truth to make sure she got the best help possible, although as Ronnieanne says to begin with it did feel disloyal. So I would email the psychiatrist before so that he was aware; he was a very kind and understanding man and it worked very well. It also helped him to prepare to ask the right questions of mum.

You've hit the nail on the head too love.dad.but, I feel just the same.

 

[jen54]

I am feeling terribly guilty, and of letting mum down...And my dad,who just before he died sobbed and begged me not to put mum in a home and to look after her.
I didn't realise how badly it would effect me when time came to admit we may not be able to cope, we were hoping to have mum with us,move and take her in, but we are stuck at present unable to afford a bigger place, mum has never wanted to move, so hints about selling both houses and her coming with us are not received well,never were.
Actually speaking to a Dr and support worker to say mum is becoming unable to cope with stairs, made me break down, I could hardly get words our to the help line person when it came to saying we were told just run 999
I realised I wanted the control, the idea that I had to turn some controI over to strangers who didn't know or care about mum personally was the issue. I was trying to protect mum from any distress,and time has come I can't do that.
I have never felt like this before, feeling I am letting mum down,and being a failure for not taking care of her myself.
I am still hoping I can get help in her home, and in future have her with us..Still in denial of how it could pan out, I suppose my hand has to be forced as it becomes impossible to carry on or cope.
I had hoped mum would be in her home,pottering,oblivious,while we took care of everything..And then she would slip away in her sleep before she started forgetting us,and became scared,or other issues of confusion

The realisation she may well end her days distressed is a hard pull to swallow,though I now see even if she was with us she would wake up each day totally scared wondering where she was...And living in her house is becoming an issue without outside help.
No escaping my feelings though. I suppose it's the instinctual need to protect ,to hide the vulnerability of loved ones and to look after our own until it is impossible

 

[canary]

(((((((Hugs)))))))) Jen - it is not your fault, but so many of us have guilt as a constant companion, even when its not warranted.

So many, many people on here make that sort of promise - and, eventually, it just cant be kept. Your mum now needs a whole team of people to keep her safe.
Your dad would not have known what he was asking you to do and you would not have known what you were promising.

If it is any comfort to you I would like to tell you that Mum got to the stage where she did not recognise her home and used to go out at night, in her nightclothes, getting lost. I was unable to look after her in her home, or move her in with us because of my husband and she would not accept carers so she moved into a CH. She thrived once she was there - made friends, put on weight and all her fears and paranoia reduced. I think that many PWD get to the stage that trying to function in an "ordinary" home environment is beyond them and causes so much stress. In a CH they are able to let go of this stress and the routine of the home, plus there always being someone around to talk to and reassure them (night and day), calms them.

Mum wanted me to promise not to put her in a home, but fortunately I didnt - I promised to do everything I could to do what was the very best for her and I feel that by moving her to her CH I kept that promise.

 

[Shedrech]

hi Jen54
I agree with canary
some promises are better kept to the spirit not the word
you will keep your promise to look after your mum; maybe not by yourself, you will build a team around you so that you all support her
you may not be able to have her live in her own house all her life; you will carefully and thoughtfully find her a new home for her to live in when the time is right and that is what is needed to keep her safe and cared for
which is what your dad was asking of you
best wishes

 

[jen54]

Thanks,yes realistically I know this..that there comes a time when trying to keep things normal or carrying on is not feasible,