1. Rose Wood

    Rose Wood Registered User

    Apr 24, 2008
    4
    Hello,
    I feel very lost right now and don't know how to make sense of my emotions. Earlier this year i felt that i had finally found peace in myself, the pain that I have carried on and off for the last four years since my mum was diagnosed with Alzheimers found a way to be held so that i could find joy and find a relationship with her. She is happy and passive and continues to be the most gentle flower in the world(and i know we are very lucky for that). Three weeks ago my Dad, the primary carer had a carers breakdown when i returned home, my brothers and i nursed him through the panic attacks and sorrow that followed as he told us that to him our mother was dead. We cared for him and mum until an emergency home was found after the weekend which quickly turned into the realisation that it would be permanent.
    After a couple of weeks respite mum returned to dad for what we hoped would be five weeks until the permanent place was ready, but even with full time day centre and some home care in place and us going home(we live away), he could not cope, and again this weekend another emergency home was found whilst we cared for both mum and dad.
    It is hard to explain the full extent of the situation, to explain that myself and my brothers have been my dads therapist, carer, friends for a long time as he has refused to access any outside support until this crisis hit (we have tried and tried to avoid this). I know that he isn't well right now, and i know he has cared for mum 24/7 and its different relationship, but there is so much anger in a family that is normally so full of love. We struggling to understand why he can only see death in a mother and woman who we see still has so much joy to give, but it seems to him he is blinded by his grief. i did not initially feel angry until this last week, when I realised that right now even after all our deep and meaningful talks together and all he has said, he has absolutley no intention of accessing the support and networks available to him, and yet he still rings us in sobs and tells us things about our mum that break our hearts, and he doesn't even realise what he is doing. i guess i am angry that my dad will not take responsibility for himself, and that he now talks as if mum really is dead as he talks of his new start and holidays.
    I hope i don't sound heartless, I do not want these feelings, i love my dad so much, but right now i dont know him, and i know my brother feels the same.i cannot bear the thought of my mum in care, she looks so lost. Please do not judge me if my words seem harsh, I am just in a tangle and cannot see perspective right now, does anyone have any? Love, Rose.
     
  2. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Hello Rose

    There is so much in what you have written and the first thing tht comes to mind is how much you are there for your mum and dad and have been for a long time. You say your mum is the gentlest of flowers - how lovely that you are able to see that. On the other hand your dad isn't seeing anything of the sort - he sees that she's gone. What you've described is what is often discussed on Talking Point - how our feelings and thoughts and experiences can change all the time. Sometimes being able to see the person being attacked by dementia and sometimes struggling with the loss. There is no right and wrong I don't think - it's just different.

    One of the hardest things for you at the moment seems to be having to hear your father's experience of what is happening to his wife (but she's your mum). This must be very painful and I wonder whether you can talk to your GP or Social Worker about the position you find yourself in and see whether they can help to encourage him to offload onto someone who isn't going to have to cope with the pain of it.

    Sending very best wishes Rose

    Love Helen
     
  3. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
    Hi Rose

    My heart really goes out to you and your family.

    Your dad is grieving and is frightened and he is at total breakdown point. He is grieving the loss of his beloved wife and mother of his children. He sees things so differently than you and your brothers do. He is also experiencing the sense of fear that we all do feel when we are in the grip of this awful disease.
    Dont' feel afraid to show your emotions also. Talk to your dad when you are able and let him know that you are all there for him aswell as your mum. He is probably feeling very isolated and alone and indeed not wanting to let 'outsiders' into his world because he is afraid of losing his beloved wife.
    My parents won't or should I say my dad won't accept help from 'outsiders' either. Its so frustrating when things could be easier but I just carry on as best I can under these difficult situations.
    Nobody on this site will judge you for your feelings thats why we are all here to let off steam in whatever way we can.
    Never, feel guilty.
    Love to you all
    Andrea
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland


    Dear Rose

    No, you don't sound in the least heartless, you sound like a loving, caring daughter who is at her wits' end.

    You say you don't know your dad -- believe me, he doesn't know himself! He is as sick as your mum right now, and in as much need of your support and love. He's not taking responsibility, because he can't!

    He's talking about holidays, and a new life, because he literally can't cope with this one. It takes much longer than three weeks to recover from a breakdown.

    Please be patient with him. I think you've accepted that your mum will have to go into care, and that must be terribly sad for you. I understand your despair, but there doesn't seem to be any other solution, if your dad is to recover.

    I'm so sorry for you. Please keep in touch, and let us know how you are.

    Love and hugs,
     
  5. Rose Wood

    Rose Wood Registered User

    Apr 24, 2008
    4
    #5 Rose Wood, Apr 24, 2008
    Last edited: Apr 24, 2008
    Thankyou

    It's just amazing that you are there straight away, with time and thought to give to a complete stranger. You have made me think; not right now as i recognise that he is not well, but I wonder if my dad needs to see his children's fear and sadness, so far to him we have just been a strength and now i am hiding away from him as i have no strength left at the moment. I wonder if seeing that we are afraid as well, may bring comfort, that he is not on his own, and i wonder if fear and sadness is easily muddled with anger if it is suppressed? Maybe I am not angry at him, but at Alzheimers-but who on earth do you blame!
    I phoned the care home and mum is very quiet but eating well, they took her into her room for bed last night, then popped out briefly, on return, she wasnt in her room......she was soon found in the kitchen, washing up (of sorts), made me smile, she will have them all clean and tidy in no time.

    I have taken to weeding the garden and de cluttering the house-great therapy

    Its just going to take time isn't it.

    much love to you all,
    chat soon,
    Rose.

    Just got Hazels message,wow, that makes a lot of sense, to see it that he is so so desperate to be out of his present life,(and i know in my heart that he would much rather have the life with the woman he married if he had the choice),I hope you don't mind but i am going to quote you to my brothers as i think your words will really help them to try and understand dad right now.
     
  6. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Rose, of course you mak quote my message. Do you know that if you go to the top of your thread and click on Thread Tools, you can get a printable version, and print your entire thresd out?

    You may be right about letting your dad see that you are worried and upset too. He may think you are all being so strong, you don't need him any more. Obviously, I can't tell, because I don't know him, but it's worth thinking about.


    I'm glad your mum has settled, and it's good that the home is allowing her to be busy. You never know, it may all sort itself out quicker than you think.

    In the meantime, if you run short of jobs.......:)

    Love,
     
  7. Rose Wood

    Rose Wood Registered User

    Apr 24, 2008
    4
    Dear Helen, Andrea and Hazel

    I tell you my house my house will never have looked so good! I am even planning to re paint, so will be a pro at any handy woman job anyone needs in the future!!

    Its been a tearful day, and i just want to make sure you all know the difference you have made. What huge huge hearts you all have and words that I think are going to lead to a much more rest full sleep tonight.

    Keep in touch,
    love and hugs right back at you,
    Rose.
     
  8. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Hi Rose

    I think that each change that this disease brings causes a change to you. Where you find a change and new grief then you have to reblance yourself.

    The anger you feel, is grief out of the disease. Your Dad is exhausted and grieveing as are you. He knows that his life must change and with that change although it is down he probably knows that he can enjoy time with your Mum once more. He is probably just terrified at the sheer 24/7 nature of the task and maybe a recent small change in ability has just been the final straw. yet he may well be frightened to upset you and your brothers. It is not that he has stopped to care but rather that he cares too much and is scared.

    Your Mum sounds as if she is settling well and this may help your Dad to reforge anew a relationship with your Mum. I know with my own Mum I very much have spoken of her in the past tense for the past few years but I really also miss the little old lady who was so like her and grieve for that person too, who died a few short weeks ago.

    ((((((((hugs)))))))))) and wishing you and your brothers the strength to get through this transition that this dreadful illness is bringing to your family.

    Love

    mameeskye
     
  9. andrear

    andrear Registered User

    Feb 13, 2008
    402
    Yorkshire
    Hi Rose

    So your now planning on repainting. We have recently gutted our lounge. 3 years ago just before mum and dad became ill we had planned on gutting the room. But here we are 2008 and only started the middle of January. But for Jon and I its something that we love doing. We maybe taking our time but we have lots of that. I've got used to our patchwork carpet and when our friends come around they think its great because for the first time ever they can come into my loung with their shoes on!!!
    That is all about to change. I've asked the man that knows all about flooring and we are now in the process of deciding what to have.
    Good on you for find a way of destressing (excuse the pun!!)
    Andrea
     
  10. Carolynlott

    Carolynlott Registered User

    Jan 1, 2007
    232
    Newcastle upon Tyne
    Mixed Emotions

    Dear Rose,
    I picked up on your post because like you I have so many mixed emotions right now, and have done for ages. My Dad was diagnosed with AD almost three years ago (had been showing signs long before then) and he went into a CH last December. Being new to AD initially I felt very irritated with him, and my feelings were for Mum as she had to live with him.

    Gradually I realised she wasn't caring for him at all well and I used to get cross with her - "don't you think you could wash his clothes, he's ill, why do you let him go out alone etc". She just didn't seem to be able to do normal things any more, and like your Dad she wouldn't entertain the idea of outside help - aoart for me, and every time I was alone with her I got an earful of how awful her life was. Eventually it became apparent she has AD too - hence her inability to cope. I'm not suggesting that this is the case with your Dad, but it is very tempting to assume that our parents have the same mental capacity that we have - and for whatever reason that isn't always the case. Also all my focus was on Dad and his problems, and I put any signs Mum was showing entirely down to the stress of living with him. Perhaps your Dad has had his own problems that you haven't focussed on because understandably all your attention has been on your Mum.

    Although my Mum is still living at home, on her own, she is declining fast. She has shut Dad out of her mind as much as she can - I think it she finds it too horrible to think about him and she doesn't want to know how he is because she is worried that I might say he is fine and that he will come home again. Her life was an indescribable hell (it would have been bad enough for someone with all their mental faculties) - perhaps I am to blame for not doing something sooner, but in my Dad's case he wouldn't have agreed to any sort of help and all I could do was react when the crisis finally hit.

    Mixed emotions still - I see Dad in his CH and fall apart because he doesn't know me any more or even acknowledge me - I am beginning to accept this but it's so distressing to see him in the state he is now. And then I see Mum - and I can't for the life of me figure out why she irritates me when she can't work the washing machine or remember she has to take one pill a day at lunchtime or believe me when I tell her the people on the TV can't see her. I know exactly what is happening to her but I find it so hard to be understanding and I hate myself, especially when she knows what is happening to her and she is so sorry that she is being "silly".

    Don't know if any of this helps.
    Best wishes,
    Carolyn
     
  11. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    #11 jackie1, Apr 24, 2008
    Last edited: Apr 24, 2008
    Hello and welcome to talking point.

    I don't think anyone on here will judge you, we have all been through all manner of emotions.

    All I can say is please don't be too hard on your dad, and possibly this is not a good time for you so show him how hurt you are, wait until he is a bit stronger.

    I care for my husband 24/7 and am so tired it hurts, and I guess that I am considerably younger than your dad (45). I still love him but he is no longer the man I married. The emotional devastation of seeing your spouse and the father of your children devastated by this disease is too much to describe. And as a carer you do what you need simply to survive.

    When you are with someone 24/7 you have to face all the ups and downs and I know that John's family don't really believe me when I describe some of the extremes of emotion I have to handle, they only see the calm/quiet man. I also know that the time will come when I have to make that most awful of decisions and I hope that both our families will know that I have really done the best I can.

    I hope that you and your family can continue to find the strength and love to support each other.

    Love
    Jackie
     
  12. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    541
    Dear Mameeskye

    What a wonderful way of putting it. I will remember that as I can identify with it but haven't been able to verbalise it.

    thanks

    Love Helen
     
  13. Rose Wood

    Rose Wood Registered User

    Apr 24, 2008
    4
    sending all of you a huge hug and a heap load of love

    Since my first and last (until now) time of reaching out to you for support, my family and I could do little more than survive, as that day was the start of her rapid deterioration until she died at the end of November. Her whole family, all 7 of us sat/slept/ drank copious ammounts of tea at her bedisde for the 4days up until her final breath. we laughed, we wept, we remembered, we hugged, we felt anger, sorrow and exhaustion, we played her favourite music, and surrounded her by all her favourite things. I believe she called us all to her. She could not talk and you could argue that she wasn't consciously there, but we chose as a family not to blink, because if we did we might have missed her, we saw her cheeky wink be it slight, I saw the corner of her mouth rise when I told her that one day i would be a mum, I heard her change in breathing when Dad talked of the wonderful memories they had together, I felt her with us.It was precious, it was traumatic, it was our choice.
    Its been a rocky road, it has not changed the family dynamics, but it has tested them to the brink, and its going to take alot more time for us all to find our way, and we are having to accept how individual this is.
    But this weekend, my Birthday, a year on from my last message, I chose to gather around the one thing that symbolises the change in our family the most, our family table, that holds our traditions, our culture, and will never be the same without mum at it.
    that evening, sure enough it wasnt the same. I hadnt just invited the family, but our closest friends, people I knew we were safe with. And as I sat back I saw the love, the sparkel, the strength and I saw it like this....first there were five, then there were 8, then we really needed the 8, and that night we needed 11, not to replace but to help put the love and strength back around the table, it wasnt the same, but it was wonderful, it was wonderful to feel joy even at a time of grief, to see life after death.I know mum is telling me its time to start living the life she gave me again.Dad made that table when they first decided to have a family.
    Dad has had a new heart (a pace maker), and while his health is much improved part of his broken heart can never be mended.
    I cannot fully express what I feel, but I just want to send you all so much love. I know we can focus on what alzheimers takes away, it took mums ability to talk, to seemingly know who we were, to eat, to stand and finally to breath. I know it is so stressful that it can be hard to have the energy to see what is not lost, but I thought briefly that i had already lost mum even before she died,and it was she who reminded me that she was still there, I was the one who just had to look harder to find her.
    I dont know that I will come back on this sight,this has been hard, and right now I dont want to know what other people think as I just need to be with my thoughts for a while, but a birthday message from the society on my email reminded me to let you know that while out of sight,not out of mind, I am finding strength and I am sending some to you.xxxxxxxxx
     
  14. tillygirl

    tillygirl Registered User

    Jan 7, 2009
    211
    Tyneside
    Dear Rose,

    Sending you hugs

    Sorry for your loss, I never got to know you, Love Tilly
     
  15. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,156
    Toronto, Canada
    Dear Rose,
    Thank you for the uplifting and heartwarming message. You may never visit again but thank you for those words.
     
  16. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Rose

    Thank you for your post, it is very moving.

    I'm sorry you've lost your mum, it's going to take you a while to get over the loss and overcome the grief, but you obviously have a very close-knit family, and sympathetic friends. I'm sure your mum wad watching over your family table.

    I wish you, your dad and all your family peace for the future.

    Love,
     

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