Struggling a bit with the pain

Discussion in 'ARCHIVE FORUM: Support discussions' started by helen.tomlinson, Apr 12, 2008.

  1. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Today started off normally or so I thought - or hoped. However, at breakfast, Alan wanted to know how we'd get to the airport. I then understood that he thought we were going today:eek: Maybe this came about because earlier I'd asked him to try on some swimming shorts I'd bought him.

    We then went to visit Alan's daughter and her partner started to say some awful things which he thought were funny. I was too shocked to say anything and it's only now at the end of the day that I actually feel the hurt. He said things like "it must be a barrel of laughs at your house". Then he was joking about making a T-shirt for Alan with the hotel name and address on it in case he gets lost in Rhodes. Alan didn't understand any of this but I did. He was really thinking that it was funny and all because Alan couldn't understand something we were trying to explain to him about an opticians appointment.

    I'm mad with myself for not dealing with it at the time and I just can't understand why Alan seems 10 times worse when we are with other people. When it's just me and him there seems to be so much normality and understanding and conversation (believe it or not). When other people are there Alan is like another person and I so much want people to see how he is most of the time.

    I am seriously questioning my own sanity at the moment and wondering whether what they experience is reality. I sounds crazy but right at this moment I really don't know.

    Helen
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,896
    Kent
    Dear Helen,

    Excuse me for saying Alan`s daughter`s partner is a crass idiot to have such a lack of sensitivity, you shouldn`t expect from a 2 year old.

    You didn`t deal with it at the time because you were in shock, and totally unprepared. But if there is a next time, I`m sure you won`t let it pass.

    Alan is probably 10 times worse in a group because he is unable to follow group conversation. When you are together you talk directly to each other 1 to 1, you know each other and you know his difficulties.

    My son is excellent with his father but when he comes to see him, Dhiren cannot cope with the conversation between three of us and switches off. I usually leave them alone so Dhiren can have some time with our son.

    Don`t question your sanity, just question your understanding of dementia. None of us understand it fully and when we sometimes think we are getting to grips with it, you can be sure something slaps us in the face to prove us wrong.

    Take care Helen. I`m sorry you had such a difficult day.

    Love xx
     
  3. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Helen,

    My Dad too is much better in a one to one situation. When all the family are together and there is a ping-pong conversation going on he can't cope at all and either tries to get the attention back on him or pretends to be asleep.

    Alan's daughter's partner needs to learn some sensitivity. Probably on some level Alan realised that he was not in on the 'joke', but hopefully not that he was the butt of the joke. We all need to keep a sense of humour (otherwise we'd go mad) but poking fun at someone's illness is just not on. Would he laugh at someone with cancer?

    When there is an event coming up, my Mum doesn't tell my Dad until the day or the day before. The concept of 2 weeks on Tuesday is too difficult for someone with dementia, for whom just getting through the day is hard enough
     
  4. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Thank you Sylvia and Sue. Just being able to talk about it and to have a response helps such a lot. I feel tonight like I did when I first joined TP - such pain and aloneness. When I read your responses it helped me because I realise there's no one out there in our world who understands like you all do. You make me feel normal and help me to think things through.

    It's only today that I clearly realise how difficult it is for Alan in group situations. But I read your posts and it was like seeing the situations again with different eyes. Of course he feels left out and probably overwhelmed. Eventually he starts talking about "his football years" which bores everyone to death but he really wants to tell this story. He never does this at home but he always does outside. I think I can see now.

    Love from Helen
     
  5. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Helen, I am the first to try to use humour as my coping mechanism ..... but only when it comes from my mum - not directed at her ... if I think someone is poking fun then I am worse than a lioness with her cub!!!!!!

    However .......
    Perhaps Alan's daughter and her partner really don't know how to deal with the situation and this was a fumbled way of pretending they could?

    We are all on a huge learning curve - and so is everyone else around the situation ...... Impossible I know when we have more immediate concerns, but I think we have to try to understand those who understand even less ...... and learn to forgive - or at least manage - their ignorance.....

    Much love, Karen, x
     
  6. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Dear Tender Face

    Alan's daughter did not offend in this way - it was her partner. She is far more sensitive and I think she was probably embarrassed by him and she, like me, didn't deal with the situation there and then because I don't think she could believe his behaviour either. At one point she said "what have you been on?" to her partner but he wasn't listening.

    I think you are very generous in your attitude but I will have to deal with it one way or another because he will otherwise believe the message is that his behaviour is OK when it is not.

    I am known for being very tactful and I will find a way of getting the message across in the kindest possible way.

    Best wishes

    Helen
     
  7. AJay

    AJay Registered User

    Aug 21, 2007
    123
    Leics
    Hi Helen

    I'm sorry that you had to go through that, those comments were really out of order. I would have just let it go because I'm the eternal peace keeper and then simmered about it on my own but my partner would have launched at that straight away.

    My Dad had problems following conversations aswell when there were more than 2 people, my friends realised he struggled and kept trying to pull him back in. Dad luckily seemed content just trying to listen and would occasionally make comment, usually a few minutes after the conversation had changed track but we all got used to it and would instantly backtrack. It must have sounded quite strange to people who weren't used to it. Sadly people who didn't understand would ignore him.

    How Dad managed to keep up with my rapidfire speech though is beyond me, I can go at some pace!

    AJay xxx
     
  8. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    David is like that - wants to give folk the benefit of his experience!! - these days he cannot remember what he actually did so makes it up! :eek:

    I am sure you will deal with Alan's daughter's partner - tactfully, and, hopefully it will give him food for thought. Not only is he ignorant of dementia but of how it affects the carer - he needs to be educated.

    Take care. Love Jan
     
  9. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    'Quote:
    but he really wants to tell this story.

    David is like that - wants to give folk the benefit of his experience!! - these days he cannot remember what he actually did so makes it up!'

    Many moons ago mum used to do the same.....find something that she felt safe talking about.....a topic that she didnt feel lost in....where she felt that she was participating as an equal. By listening we give back some self esteem, self respect....that message just has to be got across to those who dont understand dementia.
    Helen
     
  10. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    I'm glad you brought up the bit about Alan finding a subject he can talk about. It is really hard to admit that I find it hard to give him the attention he needs and deserves some times. I really like to engage normally but sometimes, when I'm tired or I've been engaging with clients all day, it is hard to keep on going. It's times like these that I'm reminded that I'm Alan's carer - whereas a lot of the time I still think of myself primarily as his wife. The roles are very confusing to me at times and I am really finding it a struggle openly admitting it. I keep saying to myself "I'm in denial" but really I think it's more complicated than that.

    Anyway I'm rambling but thanks for your comments.

    Love Helen
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,896
    Kent
    It`s very difficult to let go of being a `wife` Helen, as you still have a husband.

    It has been insinuated I give my husband too much credence, respect his opinions, listen to him, take too much notice of his wishes, but when to stop.

    You are quite right, it is very complicated. It is a change in relationship but still a marriage, and I have to give the benefit of the doubt until I`m proved wrong.

    And as long as Dhiren feels an ounce of independence, and ounce of dignity and an ounce of self worth, it is not for me to deny him.
     
  12. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    You don't ever stop, Sylvia. And I know you don't need me to tell you that, I know you'll never stop.

    It doesn't stop even then. John has no independence now, can't express himself, but I'd move heaven and earth to preserve his dignity.

    Self worth? I don't know if he has any, but he's worth everything to me.
     
  13. Keely

    Keely Registered User

    Aug 6, 2007
    95
    Dear Helen
    I am horrified that anyone would say the things Alan's son in law did. I ‘m with Grannie G
    I would not even wait for a next time! How ignorant is he? I’d send him some information on the condition and I’d explain to him how you felt and how you wish Alan to be respected as a person no matter how lost he may get in the illness.
    As far as the change in Alan in company my mum is the same she just can’t follow the conversation and looks lost and vague but she isn’t too bad on a one to one. Also if I and my sister are careful in the way we hold a conversation she can be included. You hold on to those moments when you are together but you have to have company.
    I wish I could give you a hug that must have been so… hurtful.
    I won’t say what I wish I could do to Alan’s son in law!
    Take care. xxx
    :eek:
     
  14. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hello All

    It is so good to hear your experiences - it is so normalising. Sometimes I feel alone with it all and I try to sort it all out in my head. Now I can post on TP and it's not just left to me anymore - HOW WONDERFUL IS THAT!!!

    Some really nice news. Tonight Alan went out with his son as they usually do on a Tuesday evening. His son asked me if I would like to come and I said "no thank you because I think Alan benefits more from a one to one". Now I am really pleased because this is putting the new information into practice and being able to verbalise it to family. When they came back I told Lee, his son, that his dad had an opticians appointment on Thursday and he said "yes I know dad told me". I nearly burst into tears of joy. I then told him about the robin that came and stood on Alan's shoulder and he said "yes dad told me". I said I thought it was wonderful that they had the time together and I thanked Lee for listening. We all felt touched.

    Keely, thank you for your anger on my behalf. I will deal with it really. I am a bit slow on the uptake and I must admit I am a bit scared of causing any disturbance. I will deal with it but I will look for the right moment. sometimes I wish I was a bit more turbulent.

    Love Helen
     
  15. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Hi Helen

    I am so pleased that Alan had a good time with his son. It is lovely when they do remember something. I used to treasure these moments. As to his daughter's partner, I'll be kind and say that he doesn't understand.

    To me it is important to preserve dignity, even in the last few weeks to at least go through the motions even when Mum couldn't answer.

    I had great priviledge to watch a wonderful nurse with Mum the night before she died, who explained to her what was to be done. I doubt that Mum knew, but she took the time to explain. Compared to the GP the next day who jsut examined...:rolleyes:

    To me it was important. When I was aksed if I wanted a cuppa, I always asked Mum if she wanted one too. It was about giving control over a life where there was little left to control.

    Hope that you ahve a great time away. I know it won't be the most restful holiday for you but you will have Alan with you and hopefully get some beautiful memories to treasure.

    Love

    mameeskye
     
  16. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Thanks Mameeskye. It is so kind of you to think about us when you've just experienced the loss of your mum. You did well by your mum whilst she had breath in her and also at letting her body go. Even the sunshine paid tribute to you both!!

    Love Helen
     
  17. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Hi Helen,

    Catching up on this thread a bit late as I've been away for the weekend.

    Well I can understand why you were hurt by your daughter's partners comments. I think that when living with dementia we can find things funny in a way that other people can't understand but for me it is more a gentle, ironic sort of humour that helps you to get through.

    My mum is quite advanced with FTD and can't really speak at all anymore but I would never dream of making her the butt of a joke, even more so while she is sat there - for a start she may not be able to speak but I don't know that she doesn't understand some of what I say. Plus it's disrespectful to you and Alan.

    In my humble opinion I would speak to your daughter first - it may be that she has already "roasted" her partner in which case nothing more needs to be said - I know that's what would happen if my hubby said anything so tactless.

    Are they coming on holiday with you? I only ask because it occurs to me that maybe he was voicing some of his concerns as he doesn't feel comfortable just asking straight out?
     
  18. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hello Kate P

    "Are they coming on holiday with you" -- Oh my goodness no. It will be just me and Alan which I think is the best for us all. Alan with have the one to one which he needs and I won't have to consider anyone other than Alan which is what I need.

    Did you have a nice weekend away? I must admit I am really ready for a break. I am hoping that the weather will be good this weekend so that we can do a good cycle ride or do some canoeing.

    You mention that your mum has FTD. Is that Fronto Temperal Lobe Dementia? I'm new to all this and I'm not up on abbreviations yet. Alan has fronto temperal lobe dementia.

    Love Helen
     
  19. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Hi Helen,

    Sorry about that, yes it is. Mum's had it for nearly five years now although she was only diagnosed July last year.

    I understand what you mean about one to one helping - we're at a point now with mum were we feel like we're playing a very un-fun game of charades but dad can still understand her much better than we can and she can sometimes get occasional words out to him were as she can't really with my sister and I (apart from the memorable moment a few months ago when in the middle of a church service she turned to me and said at the top of her voice "you're up the duff!". The only words she's spoke to me in months and that's what they were!!!)

    Yes I had a lovely weekend away thank you - just hubby, daughter and myself - it was so wonderful. I realised how rare it is for us to spend any real time together just as our little family. As bad as I feel abour "deserting" dad I think it's something I need to do more often as both hubby and Milly benefited hugely from having my complete attention.

    I hope you and Alan have a wonderful holiday together - I wish you sunshine and laughter and happy memories - you can't hope for more than that!
     
  20. Keely

    Keely Registered User

    Aug 6, 2007
    95
    lovely news

    Hi Helen
    So glad to hear the positive news about Alan, how lovely that Alan and his son got some quality time. Sorry if I sounded bossy!
    I felt so indignant on your behalf you sound more than capable of handling it all in a calm and measured manner. Its such a help posting isn't - just knowing there is a community of people who undersand and care. Your latest news has cheered my day.
    Keely
     

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