Dementia from one daughter's perspective.

Discussion in 'ARCHIVE FORUM: Support discussions' started by Amy, Apr 1, 2006.

  1. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    I don't know why, but I have felt today that I should share something of my history; maybe because some of my posts are so negative.
    15 years ago I sat at an antenatal appointment and cried, because there was something wrong with my mum's memory, but no-one else seemed bothered.
    My mum came to stop when the baby was due but could not follow the midwife's instructions to call an ambulance.
    12 years ago I unexpectedly found myself on my own with three children, 4years,3years, and 2 weeks old. My dad took us home, but after 3 days we had to leave as mum could not cope with having children in the house (She had always loved young children.) After that I could only stay when the older two were with their father.
    10 years ago I moved to be closer to them; 20 minutes away, a handy distance for dad to drive for an afternoon coffee, and he used to call with mum most days and most weekends for Sunday dinner.
    Beginning of 1998, when mum was having difficulty dressing herself, and sundowning, I forced the issue and went to see her GP and then got dad to take her. We saw a neurologist privately, had a brain scan and multi infarcta dementia was diagnosed.
    Mum was put on some sort of tranquilizer to stop the sundowning - unfortunately it seemed to stop much of her communication. When she came off the tranquilliser she "chattered" more, but by that time it couldn't be understood.
    Mum was a walker, and seems to have spent the last 7 years walking round the house, garden and care home; on a good day smiling, other days just looking very tired.
    Last year she started having falls, she'd just fall over - not trip. Then she became very unsteady on her feet. Now it needs two people to support her and sometimes she cannot walk. In January we moved her into a nursing home, and there she is now. Some days she can move her arms, some days she is still smiley, some days all she wants to do is sleep. We feed her and give her drinks. For a third of my life I have watched my mum fade away, and I am tired and wonder for how much longer it can go on.
    The long goodbye, you can say that again.
    My dad has done the 24/7 care, and I will always be thankful to him for the love that he has shown mum.
    I don't know why I am posting this, other than to say please understand if I talk about wanting it to be over, not just for my mum ( though she does not seem unhappy) but for the rest of us, so that we can finally get on and grieve.
    Amy
     
  2. rummy

    rummy Registered User

    Jul 15, 2005
    700
    Oklahoma,USA
    Amy, I totally understand. My Mom isn't as far down as yours but is steadily and quickly regressing. I figure she has had AD for 9 years. I feel the same way, this is just an awful way to exit this life. On the other hand, I wonder if my Mom had dropped out when she was full functioning if I could have stood it. We have always been so close and I think loosing her suddenly when she was healthy would have killed me. Maybe God knows this is the only way I can let her go, I don't know.
    There are no answers really but we are all in the same boat and we will get through this.
    Take care,
    Debbie
     
  3. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Amy,

    It's too early in the morning and yet again I have been awake since 4am. I'm still not fully functioning at the moment but I just wanted to say that I have read so many of your positive and helpful posts for others that I wanted to send you {{hugs}} and acknowledge how difficult life can be sometimes.

    I have to say that the (one?) benefit of having been through really bad times is that it is easier to understand how others are feeling in similar circumstances. I wish I had more to offer other than a virtual cup of tea and a shoulder, but anyway, here it is, hot and steamy (the tea that is). Love from H.

    P.S. I bet your kids do you proud, bringing them up single-handed is not easy, I know.
     
  4. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    When I visited Dad today, he unlike any other day had his arm wrapped around his chest, his hand on his heart...and my heart leapt to think god might show us some mercy and let Dad have a heart attack:confused: ....crazy how warped you become...to think a heart attack would be a relief!

    I suspect however that his hand was simply just in that position for no real reason....or is God just having more of the same 'fun' he's been having with us for the last 6 years??:( What is the bloody point to it all?


    (above is the negative thoughts I block out most of the time to survive, just put my hands over my ears and sing 'la la la la la' really loud, mumble something about how compassionate and caring I am becoming, and tell myself that there must be some bigger picture that I am missing...I mustn't let myself do otherwise because there is one thing worse than this situation, and that's going through it and not being able to pretend to yourself that its not this bad, pretend to yourself that its going to be all over one day soon)

    Amy love, you've been doing this so long, what you call your 'negativity' to me is an amazing show of strength, your words are as amazing to me as someone turning night into day, to have survived this long you are a miracle and for that very reason you must survive to the end, because you my dear are special and I promise you your fight has not been in vain, its helping people like me keep their hold on sanity! Maybe one day your mum and my dad will meet up in some nice place that exists after here and tell each other what good kids they have?:rolleyes:
     
  5. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    Hi amy
    I cannot imagine how you must feel having to watch your mum suffer for so many years, in a strange way i suppose im lucky that ive only had to watch my mum decline since last august and she's now at the stage where she wants to go home when she was at home, didnt recognise my dad, talking about my nan who has passed away, as if she's still here, we had to admit her back to hospital to EMI on thursday hopefully we'll be able to have her home again soon once she's seen the consultant and had her medication reviewed .
    I know personally i am gratefull thats its so quick and i know that if i were in your shoes i'd be feeling exactly the same, i dont think i could have handled it as well as you have, its people like you who give the "beginners" like me the courage to keep going
    many thanks for that!
     
  6. janey

    janey Registered User

    Jun 29, 2004
    86
    Hi Amy and everybody
    Amy, I think your and my Mums are at a similar stage - my Mum too can only now move her arms, and her hands are getting stuck in a clenched position (which makes it very difficult to keep them clean). Some days when I go she's smiling and laughing - others she's asleep, others she gives me the evil eye, which is upsetting because I with my ok mind imagine she's blaming me for her being in the nursing home etc. I know I'm not being logical but her gaze really gets into my soul. I'm torn between feeding her drinks to help keep her alive, and just holding her. I tend to do the latter, as in the end I think love is more important than food and drink, although I wish I'd never had to think about such a question! I absolutely understand that some days you've had enough and need it to be over - part of me feels like that too, and another part feels like Debbie that at least I'm having the chance for a long goodbye (instead of a sudden one), even though its utterely agonising. Really I don't know what I feel, apart from emotional exhaustion - as you know I cracked a few months ago, but am now back on track, coping, though I couldn't really tell you how. I do admit that some days I just have to mentally detatch myself from Mum in order to remain sane. That's difficult at the moment because Dad's in hospital (the other side of the county from Mum - typical!) so I'm visiting both of them and feeling extra guilty when I don't see Mum - and Dad wants up-to -the-minute reports on how she is too.
    I meant to be comforting here, and I've ended up going on about myself instead. Maybe it'll help to know that me and so many others really do understand because we're in this hellish place too.
    {hug}
     
  7. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Debbie, Hazel and Nat,
    What a sisterhood! I am so pleased that I have met you and others through TP.
    Maybe I posted because I needed those hugs and the cup of tea. I live in a male dominated house, have a strong father and brother, and usually project the image of coping. (Those of you who have had PM's in the bad moments know it is not true!) No that is not correct, I do cope but some days are harder than others.

    I am very proud of my boys Hazel, they are all good lads (nearly young men) - they are spirited but caring. My ex MIL who I am very close to (they are her only grandchildren and they deserved a granny and she deserved a normal relationship with her grandchildren) says its down to me. That acknowledgement means a lot.

    Yes Debbie, a quick death is hard to cope with; last May my (ex)FIL got out the bath and died - he'd been so healthy, we were all so shocked. The boys and I went to see him in the Chapel of Rest. I'd never seen a dead body before. We were all very scared and held onto each other; we were with granny and their dad. It was for us a healing experience; when the funeral came we all knew that it was not grandad in the coffin, just a shell. At other funerals I've always felt that the person was in there. There is a middle path though, enough time to say goodbye, without it being......

    Pretence, that is what it is Nat, we pretend that a smile is so good; if the mouth isn't drooping it is a good sign and the other day I said "Hiya mum" and she went mummummum, and for a moment my soul was uplifted because maybe she recognised my relationship with her. I so want her to know me as her daughter and love me. Sorry I'm crying. But maybe for her if she did it would mean that she was aware of her situation and would cause her pain and I do not want that, so I hope that she doesn't know me, and I can just be someone who feeds her and brings her some love and comfort.

    I need to go. Hazel another cup of tea is needed, and I'm using that hot and steamy shoulder!
    With love,
    Amy
     
  8. Lynne

    Lynne Registered User

    Jun 3, 2005
    3,433
    Suffolk,England
    Amy, and all who have responded ...

    At first glance this thread might seem down-beat & negative, but it's really a testament to the love and courage and strength of you all, and your families.

    Thank you all, SO much, for sharing your heartache with those of us here who have only just started to have to think seriously about Dementia issues. Reading of your experiences will help us to short-cut some of the long & painful struggles you have been through and, by so doing, you help our loved ones as well.

    Humbly ...
     
  9. Bets

    Bets Registered User

    Aug 11, 2005
    100
    South-East London, UK
    Hi Amy,

    My thoughts are with you. Glad you have such a supportive family.
    Big hug.

    Bets
     
  10. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Amy

    It was good this morning – as I skimmed through TP – seeing your story. ‘Joining here’ seemed a bit daunting, seemed lots like of people ‘knew’ each other or their ‘stories’ and given this is such an ‘active’ site, nigh impossible to find the time to delve into everything that is ‘current’ news (to all or individuals)… and I feel I am trying to ‘get to know’ other members on a pretty sporadic basis….

    …..thank you for sharing what you did. But why apologise?


    Would it help to know how bitter and angry and negative I can be?

    13 years ago, I sat in ante-natal appointments, my dad was already diagnosed as terminally ill, my mum wasn’t physically well herself and couldn’t cope with looking after dad on her own, let alone helping me with the wonderfully ‘unexpected expected’.

    My husband had lost his mum, dad, granddad and younger sister within the previous 2 years…..

    Hubby was sad his parents hadn’t lived to see their grandchild. Then we (both) got angry. Angry that neither of us had our parents around to help us. Angry that we seemed to look around every which way and saw mature/elderly parents supporting their children (still) in adulthood as the ‘next generation’ kicked in.

    We had none of that. And then I found myself saying the (almost) unsayable to my hubby, except I think it will be understood on TP…. ‘at least your parents had the good grace to die without causing us a burden’.

    Their demise was tragically young, but my parents have so negatively impacted on my trying to enjoy being a parent or having any other life/career for myself. I have never had a time with my son when I wasn’t also concerned about at least one of my parents. We have sacrificed family holidays, or booked them ‘short-notice’ only to cut them short and dash home because of a ‘cry for help’.

    I envy – no hate – and a good measure of jealousy with loathing – those people who seem to ‘swan through’ life, and ‘don’t realise they are born’. Not about money, or possessions, just having ‘family’.

    How I longed for my mum to be able, my mother-in-law to be there. I had stupidly hoped only a few months ago that now my son is at High School I was not so far away from being able to resume full-time work, to regain a better ‘standard of life’ (financially) for us all, even something more fulfilling - just to dare to think of myself for the first time in 12 years.

    And now this???!!!!

    Angry? Selfish? I trust you can hear the stamping of feet!

    Amy, you are NOT negative. To do what you have is remarkable, but any time you want to stamp your feet I'll dance to the tune!!!!
     
  11. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya me again,
    Donna and Jane, I didn't deliberately miss you out of the earlier posts, but yours magically appeared when I had already sent a reply. Thank you for what you have said. I know what you mean about "mentally detaching" Jane, but doesn't even doing that make you feel guilty, as if in some way you do not love enough?

    Lynne in some ways it is down beat and negative, and I suppose that was what I intended, because if we continually try to suppress that then we are living a lie. I've been with mum this afternoon, and although this is now the easiest stage for us caring for her as she is in a Nursing Home, I think I am finding it the hardest emotionally. Today my brother and his wife were there as well as my dad and husband, and we all walked away and left my mum on her own. It breaks my heart. I pray that she does not understand.

    Thank you for the hug Bets, being honest, I need them at the moment.

    Yes Tenderface, it does help to know that other people also feel bitter and angry and selfish - I think that at times we have to acknowledge the full spectrum of our emotions.

    I believe that as long as the negativity and bitterness is only part of the spectrum, and the love that we feel is not overwhelmed, then we beat the dementia (I have come to feel that I am in a battle with it, that it wants me to walk away, to stop loving). If we acknowledge the nasty bits, and bring them out into the open,they do not eat us from the inside.
    I'd better finish, I'm sounding a bit "bonkers".

    Take care. Thanks for letting me ramble on. Got it all off my chest now. Normal service will be resumed tomorrow.
    Amy
     
  12. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    You mean there is 'normal' somewhere in all this?:D

    What's the phrase/song I'm looking for ...' life here, but not as we know it?'??

    Anyone help?:confused:
     
  13. May

    May Registered User

    Oct 15, 2005
    627
    Yorkshire
    Tenderface
    We need the trusty Mr (beam me up! ) Scotty and his transporter beam to zap the dementia alien back a million light years:D
     
  14. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Thanks, May! Will remember to use that little 'plea' when I next find myself in a difficult situation with mum! I know it won't work but at least it will help me keep smiling!:)
     
  15. janey

    janey Registered User

    Jun 29, 2004
    86
    Hi Amy and everybody
    Amy, you asked: I know what you mean about "mentally detaching" Jane, but doesn't even doing that make you feel guilty, as if in some way you do not love enough? Yes, it makes me feel very guilty indeed and as if I don't love her enough, but I know I'm doing all I can even if its not enough, or as good as somebody else could have done, and I have to detach myself sometimes to remain moderately sane, which I have to for the other people I love as well as myself. You also said that although this is now the easiest stage for us caring for her as she is in a Nursing Home, I think I am finding it the hardest emotionally.Yes, me too. Every time I leave Mum there on her own it breaks my heart. I've cried more since she's been in the home than in all the 10-12 previous years of her illness.
     

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