The 'Cliveness of Clive'

Discussion in 'ARCHIVE FORUM: Support discussions' started by Amy, Jan 1, 2007.

  1. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Was reading a Readers Digest article yesterday about a man with a 7 second memory (the result of encephalitis). His wife went away for a while but had to return as she was missing 'the Cliveness', and I quote
    "It's his soul, I suppose, something that is not dependant on your mind or your ability. It's your identity, which is at a much deeper level."

    - I think we all know what she is talking about.
    Love Helen
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,569
    Kent
    Oh yes Helen, I do. Even though my husband is not the man I married, he is still the person I chose to spend my life with, and there is still something deep inside which is HIM.
    After all, we all change through the ages, and are affected by incidents and experiences, but at a deeper level our basic personality and character identifies us as the individual we are.
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Grannie G,
    Mum is in very advanced stages - to 'outsiders', they can nolonger recognise her, but to those of us who love her, and yes, even some of those who now care for her, we and they recognise her light.
    Love Helen
     
  4. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    That is a very silly but very true thought. It makes me want to cry. My mum has got such character that she gets more and more precious as she declines. The care home has said that I should 'back off' from the frequent visiting, long hours and closeness that I have with my mum because when she goes I won't be able to cope. I will just 'go under', they say but I can't help thinking that these final months , or whatever the time might be... (God knows it can't be long because my mum is so appallingly frail and skeletal now)... is so special and it is getting harder and harder to pull away. And how convenient for them not to have me keeping such a close eye on my mum. Even with me present, they still only give what seems to me to be very basic, no frills and not much personalised care.

    If I thought I could trust them to deliver the level of care that I think my mum deserves perhaps I would pull back, but I just don't trust them.
    My mother has gone through a horrendous physical 'fading away'. It is pitiful even to look at her hands but she still has the most striking beautiful face and the intelligent eyes of a very young girl. I don't know how that is possible, but it is. And her personality just seems to me to have ripened. She is forthright, often confused, but she shows, even now, great consideration for carers and other residents. She tells the carers to look after other residents who are in distress before they attend to her. Half dead of starvation and she still thinks other people's needs are more important than hers.
    I hope this doesn't sound as if I am romanticising this condition. It's just as if she has become more essentially herself now, even with the loss of memory.
     
  5. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Deborah,
    I don't think that you are romanticising - I think the impending loss can heighten our awareness and appreciation of the other person - and what has been insignificant in the past becomes a source of joy.
    Love Helen
     
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,569
    Kent
    Hi Deborah,
    It makes me mad when Care Homes make sweeping judgements and prophesies, telling close family to cut down on the frequency of visits becuase THEY KNOW the outcome when the resident dies.
    Has it not occured to them that some families choose to make the most of the time they have left together. However much they might grieve, at least they will know they have had as much time together as possible.
    I wonder if these trite suggestions stem from the fact that it`s easier to run the homes without visitors cluttering the place up all the time and seeing where care is not quite the standard they would wish.
    Cynical maybe, but true?
    Sylvia
     
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I know it’s the the same situation as your Deborah Blythe, but my best friend from childhood cared for her mother who had cancer , she was single & use to sleep in bed with her mother , until the time came that her mother was moved downstairs , she look after her mother at home till the end , she did go under after her mother died and I remember visiting her in hospital as she was section , it was so sad seeing my friend like that.

    Then when my mother got ill , it scared me , as it reminded me of my friend Jackie, so I would not let my mother share a room with me or sleep in my bed ,I got to the point that I distant myself emotionally from my mother , that I feel that I did 'go under' in a diffrent kind of way from not faceing those emostion . Going under use to be my worse fear , not any more .
     
  8. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi Helen

    I would totally agree.
    As with your mum............Ray was unrecognizable to all others...........he was a brain damaged vegetable............but each time i looked at him, i could see he was still there............lost in a body that couldn't move and a brain that had organ failure and a memory that didn't work...............but his soul was still there...........it showed in his eyes.............oh how those eyes will haunt me.

    And Deborah.............the medical team said the exact same thing to me..........to cut down on visits.......as to make it less painful for me in the long run............but i couldn't and yes it was very, very painful...............but i don't regret it.

    Love Alex x
     
  9. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    This "cutting down on visits" cr*p makes me see red. It's not as if you can go back and "do over" and I really, really, REALLY think that feeling guilty becasue you didn't visit as much as you would want becasue of so-called professional advice is a lousy thing to inflict on someone who is going to be grieving. GRRR

    Jennifer
     
  10. Whiskas

    Whiskas Registered User

    Oct 17, 2006
    158
    Corby
    I so agree with you. My Mum lives with me she has done for nearly 6 years ( Dad too before died August 2005 both with dementia). Yes it's making me ill I've been battling depression for nearly 5 years but I don't think I would have been any better if I'd had to live with the guilt of not looking after them. I may go into heap when Mum goes but I'll get out of it because at the end of the day I will have done the right thing for them and me.

    I'm making memories so I need to spend time with Mum. I have 2 special ones of Dad just before he died (he had cancer too). One was when he was showing the OT worker who had brought him a wheeled walker how fast he could go with it!! 'Showing off' he said. He didn't use it again but never mind and the other is just standing with him looking out at the garden from the bedroom window. Nothing much to anybody else but special to me.

    We all have to do whatever we feel is right for ourselves and those we care for. Not easy but worth it in the end.

    Hope we all have the best 2007 we can have.

    Cathy
     
  11. Stimpfig

    Stimpfig Registered User

    Oct 15, 2005
    135
    Germany/India
    I just mentioned in my post about being told to cut down on visiting - I do feel with Deborah and I do feel with Cathy but seeing mum isn't making it easier either for her or me. It seems like there is a no "ideal" solution to this and one has just got to do what seems appropriate under the circumstances. But am finding solace in what everyone here is telling me - It's not in your hands !
     
  12. Whiskas

    Whiskas Registered User

    Oct 17, 2006
    158
    Corby
    Yes I agree even though the circumstances keep changing as well!! My Mum isn't as bad as she could be ... yet, and I expect I might feel differently further down the line so will keep on taking one day at a time and try and deal with whatever, whenever like everybody on TP seems to be doing.

    Cathy
     
  13. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Yes, but your prime motive is because it's not working well for her. That's a different kettle of fish to being told, essentially, well you'll have to do without her eventually, better get used to it now. As if that would save any pain! On that basis, we should all be banned from seeing our parents past the age of 60 (or 70, or 80) because they're going to die anyway.
     
  14. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #14 Margarita, Jan 5, 2007
    Last edited: Jan 5, 2007
    I 2nd that as I shall try & do that from now on Cathy

    PS

    Sorry jenniferpa , but I feel the pain is un avoidable no matter how much you try to get use to it
    You can say that in theory , but really you have to be realistic death come to us all , no matter what way it happen , that what they are trying to tell you in the care home so try to find a balance for yourself
     
  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    Margarita - you didn't think I meant that seriously did you? That's why I said "as if".
     
  16. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    I just realized that when I re read it , please do accept my apologies xx
     
  17. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
  18. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222

    Hello Margarita, thank you for replying to my posting. I was very sorry to read about what happened to your friend. That was awful. My mum would get a terrible shock if I shared a bed with her as I am so robust I would probably squash the living daylights out of her, so that is not something I would think of, purely on Health and Safety grounds!:eek:

    Having read other postings in this thread, I have to acknowledge that the Nursing Home may have been thinking that I was overdoing things and wanted to take some of the strain and guilt off me by telling me to visit less. That may have been the case. I don't know. It's just that I am so very sceptical about their care that I tend to see the worst in everything, which must make it a relief for them when I am not around !

    My attachment to my mum now is so strong, that when she smiles, I laugh. When she speaks lucidly, I rejoice. When she sheds a tear, I anguish. When she eats, I do a dance of triumph ( inwardly), when she sleeps I linger like a bewildered puppy, waiting to be sure that she is really OK and then slinking away tremulously. When she is in pain or discomfort, my heart aches and wails and gets angry. Everything that happens to her affects me in a profound and possibly disproportionate way. The trouble is, that if my current happiness depends so much on raising a smile from her, coaxing her to eat a chocolate biscuit, sup her soup or seeing colour come into her face, what am I going to do when she is gone?

    I understand what you mean about facing emotions, and I think that it is true that doing the utmost for one's mum should help to make the feelings of guilt less, when she eventually goes. I don't know. I'm not particularly good at coping with heavy emotions so any predictions are likely to be way off the mark probably. The closeness is not helping to deal with my tendency to depression, but I think I would be more depressed if I saw her less. I cannot find the right balance between vigilance on her behalf, and 'looking after myself'. I hope that you can, and I admire you for all the care and selflessness you have shown towards your mum. Kind regards
     
  19. jc141265

    jc141265 Registered User

    Sep 16, 2005
    836
    Australia
    Amy thanks for that excerpt from the Reader's Digest story...makes me feel more sure that I am not imagining that Dad is still there.

    Like many on here have said about their loved ones, Dad is still very much Dad to me. I think it even goes deeper than personality, or at least some definitions of personality because Dad was a lot more angry and impatient before he had this disease even though at the same time he was a lot less self centred (not referring to him being mean, but he's not so aware/concerned about others like the old Dad would have been, somewhat like a child or baby).

    Dad has a habit lately of staring into my eyes...and I can't think of any reason why he would do that except to be telling me that he is still there, so I tell him that I know he is (he can't verbally express himself but appears to understand me sometimes).

    My step-daughter said something sweet (and somewhat blunt as children do) to me the other day too, she said to me 'You know Natalie, even tho your Dad is not his old self, y'know he's not all there in the head...I like him.' And I thought to myself...thats because he's Dad, he's still Dad.

    One of the new staff at Dad's home asked me the other day too if I understood what Dad says (he doesn't say words but makes noises as if he were talking) as I appeared to be having conversations with him to her. So I told her, that no i didn't understand what he says, but I base my responses to his sounds on my knowledge of who he is, what he would be likely asking me, and I do point out to him time and time again that I apologise if I am misunderstanding him because we don't use words anymore, but that I do my best to guess what he is saying. I said to her that Dad and I never used to need words to understand each other, so we don't need them now either.

    On that I think I am lucky in a way. I often bemoan the fact that Dad can't talk and am so envious of other people who's sufferer can still talk to them...but in ways I think the fact that Dad can't talk allows us to communicate with each other on a deeper level, allows me to be able to sense his soul without distractions caused by confused words.

    Last but not least on care homes and not visiting. I think some people just can't, my sister can't and I can understand that..it hurts her too much. I do believe tho that if I stopped visiting my Dad he wouldnt die of the disease, he would die of heartbreak or because there was no point for him to keep going on, and I cannot live with that, or he wouldn't die because he's such a strong fighter and then he would just be alone fighting this disease...and I can't live with that thought either! We will fight this together he and I, until the bitter end...most days we aren't even fighting it, we are just enjoying each others company! I've seen how his home treats him when I am not there, and its not that they treat him badly, but they just don't and probably can't care as much as I do. They don't know who he was before, they can't empathise about how the old Dad would feel about the way he is treated by them, some of them think it would be kinder to hasten his death I am sure and that sentiment well intentioned as it is interferes with the standard of their care. They think they know him, but they don't know the real him. Also I find that because I show such devotion to him they assume he must have been great before the disease, that he must have been a very good man, and so they treat him better than they do others that no one seems to care about. Of course they are also aware that I will complain if their care levels are too low.

    Thanks to my visiting the Dadness of Dad, is recognised as being real to the staff at his home and I don't let them forget it for very long.
     
  20. Lila13

    Lila13 Registered User

    Feb 24, 2006
    1,342
    My mother sometimes wanted to get into bed with me, but again that was like a toddler wanting to get into bed with "Mummy" not wanting to sleep there full time. I wouldn't let her, and sometimes put a chair against the door to stop her coming into my room, she was not happy about that. I did wonder about tying us together with a long piece of string so that I'd wake when she wandered. (But then sometimes she'd dismiss me (as if I were a servant) and send me back to my own house.)

    Yes, there were always bits of her adult personality shining through, but we never reached the worst stages of dementia, she was only at the early stage.

    Lila
     

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