why do I doubt the diagnosis so much?

[Norman]

Most of the time I feel guilt and disloyal at talking about Peg to other people whether it be medics ,friends,neighbours or any body for that matter.
When we go for the tests and Peg cannot draw a circle write a sentence etc,I am filled with remorse because I brought her here and now I cannot help her.
I still feel guilty when I go out alone and feel that I am letting her down.
I hate giving her into the care of strangers especially when she says to them I am pleased to see you,when in fact she hasn't a clue who they are.
I feel so guilty to leave her when I should be with her and she asks me "you won't ever leave me will you?"
I am sorry to go on a bit but today has been a day when Peg seemed more clingy than ever,looling at me with a look of desperation,I do wonder how much they realise and how frightened are they.
Day to day tomorrow will be better
Norman

 

[angela.robinson]

Hi All ,i Also Found It Very Hard To Discussmy Husbands Ilness In Front Of Him ,as He Was Always Very Aware Of His Problems,and I Was Never Able To Get Any Private Conversation ,he Never Knew A Lot About Ad And I Did Not Want Him To Know What Life Had In Store .seven Year S Ago We Was Told He Had A Stroke ,this Was Ruled Out 2 Years Later ,and We Was Told It Was Ad,this Week I Was Discussing His Medication With The Cpn ,who Said There Was Some Medicens They Would Not Give Him Because He Had A Stroke ,she Said The Consultant Was Under The Impression He Had,?no Wonder They Cant Get Things Right ,i Know It Is Too Late To Do Much For Him Now But I Am Writing Of To See All His Notes, Anyone Else Done This .angela

 

[Sheila]

Dear Norm, I can understand your despair, but you do so much for Peg, no one could have done more. It is the illness Norm, it makes us all feel guilty and inadequate by it's very being. We are left with the shell of the person we love so much while the disease has taken their essence. But believe me Norm, it can never take away love, because love will endure, like Perry Como sang, "till the end of time." This was my Mum and Dads song, I had it played at her funeral and it is on their headstone, it can never take that away from us, thinking of you, with love She. XX

 

[Sheila]

Dear Angela, if you feel that is the way to go then do it, I didn't, because I had pretty much all I needed without so to speak. If we don't voice our concerns then things won't change. All power to you. Love She. XX

 

[Lulu]

I had started writing letters to the Dr before we had to see them again, but always ended up abandoning them ...even doing that felt like telling tales on her, and I didn't want to upset the Drs in any way. But, I SHALL write in future.

Well it seems I've been telling you all lies. When Mum came for her meal last night she was wearing different trousers. She has washed the others which I was telling you about only yesterday, presumably in preparation for her day away tomorrow! So she's obviously thought this all through ........this is where all the confusio starts isn't it? Anyway, as she left for home I joked to her about returning to her home town for the day, that once she gets there she may never wish to come back. (and here we are, just on the point of signing for her new home she's buying). But she replied that yes, that may well be the case!!! I asked her what she meant (shouldn't have done that in my new, accepting role), because if she even hinted at going back after all that's happened, then the rst of the family were going to have an absolute field day. Yes, she should have stayed put so soon after dad's death, no, they (us) shouldn't have 'taken' you ....oh, I can hear it all. She angrily retorted that she would never talk about us here just as she wouldn't talk about us there! Only yesterday was she passing these catty remarks about somebody there! But it was the way she said it. She was angry with ME, and this is where some of the difficulty lies because I've never fely quite good enough for her .and it ocurrs to me that I have always had a feeling that I've done something wrong but never quite known what. And all these things from my childhood are breaking through, and I'm trying to make sense of how things really are ..............So, she was very cross with me last night and I felt awful becuase it's all my fault. She can;t remember that she came to saty with us after Dad and then wouldn't go back. We did exactly as she wanted because we could see she couldn't manage alone. She tells people that all her stuff has mysteriously disappeared (even tho most of it is right under her nose) When she moved, we did all the moving -she would take no part in it -but she can't recall any of it. Her new neighbours tell me she is always hankering for her old life, what a lovely home she had ..........
If anything comes of this weekend, I'll let you know. As for guilt that you others feel, I can see you have nothing to feel this was about because you are all in far worse situations than me, and I marvel at it all. You are all wonderful. Lulu

 

[daughter]

It is so confusing to care for someone you love and at the same time having your own past resentments and feelings of inadequacy coming to the surface. This 'acceptance' thing does not happen over night, it's a gradual process, with guilt over the past making it more difficult. Don't be too hard on yourself.

Your Mum will have good days and bad days, it is not any reflection on you, or on the decisions you inevitably have to start making for her. It's not 'all your fault' when you've had to make a decision, with the best intentions, about where your Mum should live and then your Mum says what she did. It is probably your Mum's illness manifesting in this hurtful way.

And as for anyone being 'wonderful' - it's easy when we're feeling low to think that others are 'in far worse situations'. Well, perhaps they are but, if you were to break your arm and someone else had broken both their legs, it doesn't mean that you aren't hurting too. You also need some plaster to help you to mend!

Good luck,

 

[gemini]

Dear Lulu

I can't believe the similarities between what you're going through compared to what we experienced with my husbands mum.

When mum in law first decided to sell her house in Leicester and move closer to us in Nottingham we asked her repeatedly at every stage was she sure that she wanted to do this, and everytime she said how excited she was at making a new start and not being lonely anymore. Yet every now and again she'd pass a comment referring to 'going home'. Silly little things like 'I think I'll get one of these (toaster) when I go back home', or 'do you think I should get a gardener when I go back' etc etc... When she finally did move into her own place all such comments stopped. In hindsight I can see how hard it must of been for her living with us. She was the lady of the house in her own home, but here of course she wasn't...... I was... I think she was longing to have all her old mundane chores back to give her some feeling of usefullness. It's always so difficult to know what to do for the best, and hindsight is a wonderful thing.

However one thing that I think we did do right was to make her new home as she wanted it. It was so tempting to arrange the furniture and hang her pictures as I thought they would look best..... She really has never been very good at 'interior design'..... but no.... I had to back off and let her tell me where she wanted this picture or that vase... Even though she picked some really strange combinations, and it took far longer, I do think that it helped her to settle much easier.

I felt the same last year as you do now. Full of self doubt and totally confused. I've always considered myself a very compassionate, level headed person..... and yet now and again I felt such anger and near hatred towards this 71 year old woman that made me feel so ashamed of myself. I ended up questioning the very core of my soul... That came as a total shock and was something that I was totally unprepared for. In the end it was a comment on TP that made me see things a little clearer. If I was a totally awful person... I wouldn't be beating myself up over her..... I'd be screaming and shouting at her directly.... which I've never done, or I could have a couldn't care less attitude, which I havn't, otherwise you wouldn't be reading this now!!! (does that make sense???)

You have to swallow your anger and frustration all the time, but to get through you have got to find a way to 'let go' or eles you'll go mad and take everyone eles with you or push them away.

It's really hard to try and do the right thing on someone eles behalf, especially when you feel that you will have to answer to all the 'onlookers' if all the t's aren't crossed and the i's dotted. But my husband has developed a saying on that front.......

'IF THEY DON'T LIKE WHAT WE'RE DOING..... THEN LET THEM TAKE OVER..... THEN WE'LL SEE HOW FAST THEY CAN RUN!!!'

I'm really sorry to go on..... but I hope in some small way my post will help. Please don't think that all the 'demons' will go away overnight..... they may for a while..... but they will come back. It really is such a difficult and confusing time for you at the moment. But I gaurantee that what ever you are going through there will always be someone on TP that will understand.

Good luck
Love
Gemini

 

[Lulu]

Hello Daughter and Gemini, Everyone
I am so lucky -all these responses have really helped because finally I can see we do have such a lot in common.
Yes, I think what it is, is that it is like beginning to learn who you are, why you think or act as you do, to examine where you came from, your past .........and all this is added on to what you are going through at the moment. I don't think it is purely a case of accepting the illness alone, but also accepting who you are as a person, as you say. It's painful and very confusing.
Everything was (and is) done for the benefit of Mum, with the best of intentions. Maybe I expected someone to thank me? But Dad would be the only one to do that, and he's gone -but he would know what is going on and what we're going through.
Mum was never able to organise her new home. Things are still sitting more or less where I put them when she first moved in almost a year ago. There are a lot of things she could be doing, but she only does certain things. Her personality is changing ...very apathetic, until a neighbour comes in, then she's like a giggly school girl. She constantly lets me know she's bored, nothing to do, but any suggestions I make falls on deaf ears. This will never make sense, will it. It's the disease.
Gemini, I went back to read your messages - and found them very helpful. How is your mum-in-law now? Has she changed much? I think she is the same age at 72.
Meanwhile, this evening I'm going to watch Dr Who -I used to be scared stiff of the daleks and hide behind the sofa.and tomorrow Mum is away and I have a day off! I shall make the most of it! THANK YOU, EVERYONE. Lulu

 

[gemini]

Hi Lulu

I'm glad you found my previous thread helpful. As you have read I was also at a level where I thought I was going crazy. It is so hard to accept and deal with. At the moment I never know from one day to the next what my role will be on any given day....... What 'cap' shall I be wearing today????? Will it be the daughter in law who lives around the corner, or the financial advisor or the carer or the supervisor. It's all so confusing.

As things stand at the moment she is still able to live a fairly independant life. She attends a day care centre (the group) 3 days a week which she enjoys. However, as we see her regularly we have noticed a small but sharp drop in her ability to do the most simplest things. Her housework and personal hygiene skills have deteriorated considerably. She has recently also started to complain about how annoying all the other people are at 'the group' as they are all GA GA and she's fine.... Our main worry has always been her food preparation. I go round once a week while she's at the day care and clean all through and throw away out of date food in her fridge. etc. I've had to try to balance her own personal privacy with my attempts to keep her from giving herself food poisoning etc. It's been very hard.

Best Wishes
Gemini