Family fallout, advice please....

Discussion in 'ARCHIVE FORUM: Support discussions' started by blooddiamond, Sep 5, 2007.

  1. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    This thread has 'haunted me' for different reasons ...

    I'll mention two ...

    1) I admit there has been a very personal trigger for me in terms of a family fallout ... not with a sibling (I don't have any) - but mum's next 'next of kin' after me. No love lost between us for many years but I have tried since mum's diagnosis to keep channels of communication going for mum's benefit but no more. It's all one way effort. I would have loved to have her feedback on the many repeated and late night phone calls I have discovered mum makes to her, but she doesn't see it as important to tell me anything she 'observes' from a distance in order to capture the information to inform professionals ...... you all get the jist ....

    Hence, just recently I too determined to use blooddiamond's words 'history'. If there is something vitally important I feel 'she' needs to know, I will pick up the phone (she too is physically distant although not overseas). But I am not expending effort anymore on a relationship which was difficult to start with and only ever causes angst and different opinions. Blooddiamond, I wholeheartedly agree with Cate's previous post - aside from all the very positive messages - it's a case of keeping some communication open because even if we have conflicting views with 'kith and kin' - there is a common bond (much as I'd like to refute it!) of 'wanting the best' for the person who forges the bond between us even if the view of what's best is itself in conflict.

    2) I have just seen Sandwichboy's post. I've said here before how I admire people who care from any distance. I am five minutes drive away from my mother and know I am absolutely not meeting all her needs on a day to day basis. I can't. I have other things I need to do. Like going out to work and helping to pay a mortgage, raise my own family. Even allow myself time to be me.

    I find some of my stresses lie not in the 'being with mum' time - but in the 'organising' of everything that needs to be done .... even very locally .... there are members here who achieve probably far better 'organisation' of their loved ones' needs from far greater distances (including overseas) than I ever do ..... I cannot imagine the frustration of not being able to 'pop down' and check on things if there are concerns.

    We all have our own emotional and logistical (often including financial) burdens and restraints here .... 24/7 caring for a partner or parent, juggling being a parent and looking after our own parent(s) ...... the permutations are endless .....

    We are all for different - although parallel - reasons under varying degrees of stress or stages of loss ...... else none of us would need be here ....

    From someone who is 'close at hand' to the person I 'care for', I suspect those who are geographically distant have yet another unique 'stress factor' amongst the parellel universe we all embrace here.

    I believe the difference between TP and a 'local support group' (should anyone have the luxury of being able to attend one) is the diversity of different caring roles and a global network which makes the sharing of experiences so much stronger and beneficial to the membership as a whole.

    From someone who has had their own 'flashpoints' and said things in heated moments to the wrong 'audience' perhaps better left unsaid :eek: , I hope both Sandwichboy and blooddiamond will both gain as much from TP as I have, even though at times I have felt wronged or misunderstood (and been wrong too)... I would ask ......

    Keep with us ..... we all need to keep learning from each other,

    Love, Karen, x
     
  2. Netty

    Netty Registered User

    Feb 24, 2007
    47
    South Wales
    Just a quick one, until recently I lived a mere mile away from my mother and mainly due to not feeling I was able to meet her needs, we moved her to live 15 yards away in a cottage on our premises. I still don't feel as if I am managing to meet her needs....

    I too have been a little un-nerved with some of the replies on this thread. I have not posted often, but when I have, I have found TP members to be very supportive. Please can we keep this up?

    Love to you all
    Annette x
     
  3. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Hi Netty,all anyone does on this site is give advice on thier own experiences,Nobody will tell you what to do but will advise if asked for their opinion.don't ever feel you can't post for fear of replies.your post is valuable in giving others insight to situations that occur from living with A/Z and Dementia.its a challenge that changes daily.love elainex
     
  4. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    The 'TP' Family

    O.K. We are a family..........and, as such, families, 'fall out'

    However, here on TP, we really need not to 'fall out'. We are all too vulnerable.
    It goes with the territory.

    I know none of us ever deliberately 'read on toes'. Once again, it goes with the territory.

    Some of you are 'blessed' with a family that pull together.......others may feel that their family are oposite. Each and eery one of us are entitled to an opinion...........but that does not make us "right".

    Personally, my darling Lionel has just had his 65th birthday........we celebrated in style....he might not have 'known', but would have picked up on the ambience.
    Where was his family? I do not know......so we will gloss over them.

    All I ask is that we 'support' each other'.....our views may differ, but (come on....when did you ever really agree with your siblinsg) they need our support
     
  5. blooddiamond

    blooddiamond Registered User

    Wow!!!
    I can't begin to understand why my postings should generate such strong reactions amongst the members on here, but one thing I do want to make clear is that everyone is entitled to their own views.
    I do not begrudge anyone, anything that has been said to me, I will admit that I was initially shocked at some of the things said to me as they did seem a little insensitive to say the least, but I reconcile that now with the fact that people can only respond to whatever I may chose to write and tell and therefore do not have the full picture.

    I do not want to cause upset amongst any of you, all of whom have or are suffering from Alzheimers etc in some way, either as a carer, sufferer or family member or friend.

    My wife encouraged me to come on here as she felt I needed an outlet for all the bottled emotion welling up inside of me. She became worried for me when it seemed I was being overwhelmed by all the involvement etc. (This is because of a mini stroke I suffered in January, brought on by the situation at my parents) I believe she was right and I certainly very nearly cried when I wrote "I want my Mum back". That is all I want really and of course it is the one thing I cannot ever have.

    So I did the only thing I could and that was fight for her and Dad, defend thier rights to the hilt and not take any .......rubbish! The trouble is I guess, you can lose sight of the realities of an ongoing situation and I didn't want to say goodbye to her in any way. So we disintegrated as a family unit as a consequence.
    I do not accept it was all my fault, but perhaps I am guilty of loving too much and not wanting to quit.

    In any case, no matter that my brother is history to me, I do not want to be the cause of any trouble, life is hard enough for all of you living with this hateful disease. Please, everyone, peace!
     
  6. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi Blooddiamond

    Its ok............. as a few have already pointed out, TP is a family and sometimes we have disagreements just like any family, we all have different thoughts/ideas/opinions etc, but we normally come together again, as i'm sure you will with your brother some day, lifes too short for holding grudges.

    When some people have a bad day, its sometimes reflected in their replies (guilty of that one myself :eek: ) and likewise, some jump to the defence of someone they see as vulnerable or going through a bad time (guilty of that one too i'm afraid :rolleyes: ) but whatever happens, we are all singing from the same hymn book, even though we might have different voices.

    Love Alex x
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,751
    Kent
    Amen to that Blooddiamond.

    Everyone who comes to this Forum comes with a very sad story. We are all under different levels of stress. As well as the tragedy of dementia, many on this forum have suffered family conflict. Sometimes a post touches a nerve, causing knee jerk reactions. Sometimes there are hurtful misunderstandings.

    But we really are about supporting each other and sharing experiences and all of us need as much peace as we can possibly get.

    take care xx
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I've just this afternoon returned from a few days away, so I missed the entire development of this thread in real time.

    Reading it after the event perhaps adds a different perspective. Rather like reading a retrospective blow-by-blow account of something. Distance removes some of the sting.

    I'm not going to pitch into the thread with suggestions or comments to add to those already given from all sides as I think most avenues have been covered, and as we know, there is never really any solely right answer to anything involving dementia. There are simply different perspectives.

    In this case, as with others, someone asked for views, and members contributed their views. Admittedly, some were not presented as I would have done, but that's life.

    What I would like to say, however, is in defence of forums when they discuss difficult topics - often things that cannot be discussed in any other place.

    Many people pitch in their views, based on their understanding of a situation [which understanding may or may not be flawed], and based on their own experiences or imagination of their reactions if placed in a similar position.

    The nature of all this is that others will either agree, or they may disagree most strongly. That is their right, as it is the right of anyone else to make their own views known, as long as this all conforms to the conditions of use of TP.

    I find that frequently, I can learn more from the responses made to responses than I might have done had the thread contained a question, which was then answered by one person alone.

    Sometimes it is enlightening to discover that something that might appear ok to us is actually a horrifying thing to another person. It may open our eyes and educate us. DementiaWorld is all about education.

    We are all a bit unnerved by replies here at one time or another. It is the nature of the beast. If we were all nice and calm then we would never have been touched by dementia in some way. We don't come here because things are going well, or because we seek the blindingly obvious.

    Dementia presents us with challenges that are neither nice, nor easy. Bouncing views off other members enables us to gauge what others think, feel, or might do in our situation. What we must not do is take a reply as a judgement upon us, or what we may have done. We can ignore the views of other members or take them on board. It is all grist to the mill, that's all.

    Here's an extract from some forthcoming documentation on replying to others:

    Posting replies – rules of thumb

    There are some good rules of thumb to be applied when replying to something that someone else has written.
    o Make sure you have understood what they have said, in the context of the thread itself.

    o If you strongly disagree with what has been posted, take a few minutes – don’t simply charge in and make clear your disagreement in words.

    o Think whether the person who posted really meant what you believe they did
    o Think whether they are simply stating their own point of view, which is something every member has the right to do
    o Think whether you are about to start a war of words in a public forum
    o Think whether your own view is a sustainable one
    o Think whether your own state of mind is right for posting the reply

    o Get the words of your reply right before you post
     
  9. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Dear Blooddiamond,

    Well I've read all that, and I feel you've have a bit of stick from some people, partly cos you didn't give us the full story up front and some people jumped to conclusions. I have to say that is unusual for this site, don't think it is typical. Some people were a bit quick to pitch in, and most have now realised that (we are all, in the end, very caring people, just give us chance!), But now we have the full story about your mum and dad, and the siblings, we are perhaps more sympathetic to your case.

    We shouldn't have jumped to conclusions, which I feel some people might have done. I might have done the same. I often do, and Brucie tells me so!

    Well, I can't offer any advice, I'm afraid. Unfortutely all these decisions land on me alone, because I am an only child, but fortunately I have no one else to answer to. There are pros and cons in being an only child, and I'm beginning to think the pros outweigh the cons.

    It is a traumatic time for children to "put" their parent into a home. We all still see it like that don't we? I have a friend whose elderly mother said "I don't want to be at home any more, find a care home for me". Phew. Wish that was us.

    I appreciate now that you seem to be the main observer of the situation at home, and hence feel you are best placed to make a decision, and I would run with that. But don't think that your brother doesn't also care, even though he is only 5 minutes away and you are abroad. People are different in how they regard their parents. Some may not see them for years, but love them to bits even if they don't show it, some are with them 24/7 and find it a chore. I'm not saying this is your situation, but at the end of the day you are siblings, and mature adults, and should be able to look at the facts and the needs of your parents and reach a sensible conclusion.

    My dad always said to me "When I start to become a burden, however slight, bang me in a home". Of course, I'd never have done so, and didn't get the chance cos he died before that stage arrived. But people do have different views on what is the best for the elderly, and they are mostly valid to some extent.

    All sorts of care is out there, mostly expensive, the cheapest seems to be the Care Home however funded, cos they have 20 or so residents. Individual care in the home is naturally more expensive per person, and for most people not an option. You won't find anything perfect. You will only find something satisfactory. It is sad, but true. But not sad if you think of what might be the case if you weren't there to arrange it.

    I'm not saying any more cos I can't add anything useful.

    Discuss, think carefully, be gentle with everyone (ha, ha, that's a laugh coming from me, but I'm trying to learn from all the nice people on this site), and when you make your decision, feel glad you have done it in the best way possible. It might not be ideal, but you will have done it with all the information you had at the time. You can't ask for anything more.

    My mum hates her new care home, not cos there is anything much wrong with it (it isn't perfect), but because she is having to sell her home. I understand that. My dad would have sold the house instantly if he had needed care, even though he spent years repairing and improving it - it was his life's work. My husband doesn't want me to sell it cos it is the "family home". The two grand-daughters think it is sad to sell the house, I think it is the sensible option and must be done pronto (and is being done pronto - lovely young local couple buying it, just the type my dad would have been glad to have his house, I am delighted, rather than the three property developers who put in bids). Well, I've always been a practical person!

    These decisions are all hard. Mine is easier cos my dad died 3 years ago, so he isn't in the equation. Our next door neighbours have a situation where the mother needs care and the father insists he can do it himself, and he clearly can't. I'll keep you all posted on their position.

    There is no one right answer, or even any right answers.

    Discuss with the family, try to reach an amicable agreement, don't get angry or shirty, put the facts forward (says she with no family to discuss it with), and whatever decision you reach, live with it. It might be right, it might be wrong. It is the best you can do.

    Yep, for the first time in my life, I see the benefit of having no siblings. It doesn't make decisions any easier, I have cried alone at the kitchen table, but having washed my face, and made the decision, there is only me to answer to. Phew.

    Do your best, it is all you can do.

    Much love, and let us know what happens, whether good or bad. And everyone who didn't at first understand your situation now does and will give you every support.

    Margaret
     
  10. blooddiamond

    blooddiamond Registered User

    Today I had a call from my Father, whose voice sounded a lot frailer and care worn than I have heard in some months.
    He phoned to say that he had decided Mum has to go into a home as a matter of urgency as he can no longer cope. He feels it is the best thing for Mum and I respect that. At the end of the day, he has to deal with the situation on a daily basis.
    On Monday he will be phoning the S.W and asking her to put everything in motion.
    He paused several times but I did not pass comment. If he feels he has had enough then he has had enough. I believe he was waiting for me to pass comment or protest or something, but I didn't.
    I have read carefully what has been said to me on here and consequently deeply questioned myself and my motives. I believe I always only ever had the very best intentions for both of my parents, but maybe lost sight a little of the fact that my Dad needs me too (at least to shut up if nothing else) and anyway, Mum has let slip the ropes and ties that held her in this reality and is now off exploring, having fun no doubt in her dreams and fantasies, visiting places only she will ever know.
    Dad knows how I feel, but I won't say anything anymore, I have lost Mum to her illness, I don't want to lose Dad as well.
    Thank you for all your thoughts and words guys, despite the uncomfortable start on here, I have nonetheless gained some comfort from some of you and I thank you for that. Giving up is never easy and I doubt I will ever forgive myself for letting Mum down, but at least I tried, it was all I could do. I hope she is happy wherever she is wandering.
    I think I need to cry now.
     
  11. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,751
    Kent
    Dear Blooddiamond.

    Can I say you certainly have not let your mother down. You have clung for dear life to keep her at home.

    I`m really sorry for you most of all, that it`s come to this, as you seem the one most deeply affected. But I`m sure you are now beginning to realize you can`t put off the inevitable.

    I`m sorry you have had to learn some harsh truths in the way you have. Perhaps I could have been a little more sensitive. But as a 24/7 carer myself, and much younger than your father, my heart went out to him and his struggle to keep your mother at home.

    Please take care and if you would, after all the aggro, it would be lovely to have an update on your mother.

    Love xx
     
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Blooddiamond

    You are on a learning curve like everyone here, and it is not an easy one, as we all know.

    The mantra of a day at a time is an effective one for all of us, and I guess, 'never say never' can be a corollary.

    Sounds like you are doing fine - fighting the whole dementia thing is something we all get injuries from, and not everyone has had the appropriate experience themselves to be able to say what is right for another case. Not everyone has the facility with words. Not everyone has the empathy.

    ..... but by golly, most of the membership do, in spades.

    Please keep us up to date with how things proceed.
     
  13. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    A warning has been issued

    This is to inform readers of this thread that a warning by PM has been sent to Sandwichboy, regarding a PM they sent to a member of this forum, who has made an official complaint to me.

    I reviewed the content and have issued an initial warning.

    The content of the private message will be known only to the moderators and the subject of the complaint.

    The fact and content of any further warnings, which hopefully will not be necessary, will be entirely public.

    The first and second such public warnings will include one-day bans from the forum, and a third will automatically result in a permanent ban.
     
  14. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear blooddiamond, my heart aches for you, and for everyone else in your situation, including myself.

    Please do not feel guilty, you have certainly not let your mum down, and neither has your father. There comes a time in this illness we are all struggling with, when the illness has won, and it is no longer possible to give our loved ones the care they need in the home. The only alternative is to hand over to the professionals, secure in the knowledge that we have done our best.

    Cry as much as you need to, but forgive yourself, and forgive your father. Please be kind to him, he must be feeling devastated just now.

    Please keep in touch.

    Love,
     
  15. TinaT

    TinaT Registered User

    Sep 27, 2006
    7,095
    Bolton
    Dear Blooddiamond,

    Although I am much younger than your dad, I have been in his position and had to phone to tell my children that I have reached the end and their father would have to go into care. They both live hundreds of miles from me, hence having to use the phone for such a difficult message. The pauses I made in our telephone conversation was my way of reaching out to them for their understanding of the very, very difficult situation I was in. They each did their best to understand but most of all I cannot tell you how glad I was that it did not cause strife between them. I was then, and still am, very emotionally vulnerable and need all the love and support I can get. Family strife on top of all the stress I was already under would have 'tipped me over the edge'. Your dad is a very brave man and deserves a medal for all the love and care he has given to your poor, poor mother.

    You are a caring person who obviously loves your parents. I hope and pray that you can give your dad the love and support he so desperately needs at this heartbreaking time.

    xxx TinaT
     
  16. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Bloddiomond
    I have not been posting of late ,but reading your posts I felt some understanding of you r dad's situation,I always said that I would do my best that my Peg would not go into care.
    I did manage to look after her for some 13 years but in the end I could not manage any longer.
    I was lucky that I had one Son living near and the other one came as often as able.
    The pauses that I made when talking to them were periods when I needed to regain my composure,although I was broken hearted I wished to not upset them any more than they were already upset.
    My Peg did go into a home and I felt guilty and felt that I had failed her,even now I still go through the if only,and the what if and did we done the right thing.
    You have done all that you could and Dad has done his very best so neither of you need feel guilty.
    Dad now needs the support and love to help him cope with the situation,so look after Dad.
    Regarding this Talking Point site,it is a big family with people often having different views subjects,but you will find that the majority are very nice caring folks who do really care about others.
    Tell Dad I am thinking about him.
    Norman
     
  17. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    #57 Nell, Sep 15, 2007
    Last edited: Sep 15, 2007

    I think I need to cry now.


    Dear Blood diamond,

    Cry as much as you need to. We have all felt that need from time to time. A time like this, when your Mum is going into a home, is very much a reason for sadness. Just know you have our caring support (and keep the tissues near the keyboard! ;) )

    I believe he was waiting for me to pass comment or protest or something, but I didn't.

    Congratulations on this. We know from your posts how much you dreaded this moment, yet when it came you coped with it and did not let your Dad down.

    I have read carefully what has been said to me on here and consequently deeply questioned myself and my motives. I believe I always only ever had the very best intentions for both of my parents, but maybe lost sight a little of the fact that my Dad needs me too (at least to shut up if nothing else) and anyway, Mum has let slip the ropes and ties that held her in this reality and is now off exploring, having fun no doubt in her dreams and fantasies, visiting places only she will ever know.

    The whole business of Care Homes is fraught even when everyone feels the same way about the decision. None of us wants it for ourselves, nor do we want to see it happen for those we love. Also, "society" has a nasty way of making it seem as if we are "letting down" our nearest and dearest if it has to happen. I say to "society" - "You would change your mind pretty darn quick if you were faced with what many on TP face!".

    So please know that this decision, sad as it is for all of you, is probably the right one (perhaps the only one) at this stage.

    One of the hardest things for those of us who do NOT have dementia is to "get inside" the minds of those who do. For example, many of us on TP are anxious that Care Homes provide lots of stimulating activities for their residents, only to find our loved ones show not the slightest interest in the activities!! I like your description of your Mum "slipping the ropes and ties . . . . and visiting places only she will ever know". I fervently hope this is true for her.

    You have shown great courage in fighting for your Mum's rights - and IMHO, even more courage in accepting what seems to be the inevitable.

    When you feel you can, may I suggest you ring your Dad and tell him that you now realise it had to happen and you support him in his decision?? Even if this is stretching your personal truth a little bit, I think the comfort and relief it will give your Dad to know you are on his side, will be worth it.

    And finally, to help you through those tears, lots of {{{HUGS}}} for you! :)
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Good reply, as ever , Nell.

    Please try to do this, when you think you can do it calmly, blooddiamond, it will make such a difference to your dad, and you will feel better when you have made peace with him.

    Take care, and keep in touch.

    Love,
     
  19. DickG

    DickG Registered User

    Feb 26, 2006
    558
    Stow-on-the-Wold
    Hi Blooddiamond

    I have just returned from a respite holiday and feel sad that all the responses to your thread have not been understanding and sympathetic. Our experiences and responses are all different and no one is in a position to criticise.

    On my return from my holiday I brought Mary home from the NH and was taken aback to find that she had enjoyed her stay, she was bright and cheerful which I put down to the stimulation provided by the staff. I now have to consider whether I am right not to let Mary go into a NH, I am not doing as well for Mary as they are. It seems that love may be in the way of sense.

    My point is that going in to a NH may be a positive move and not the failure that most of us assume. I know that it is very difficult but we must look at what is best for our loved one and not confuse their wellbeing with our own wishes.

    I hope that you can come to a conclusion to the problem which will be best for your mum and will bring some comfort to you.

    Dick
     
  20. blooddiamond

    blooddiamond Registered User

    Oh dear!
    I really hope that no-one thinks it was me who complained about Sandwichboy, it wasn't. I have been surprised by some of the comments on here, but it is an open board and everyone is entitled to their own opinions.
    I understood what he meant by his "go back to England and give up your life" comment, they were harsh words sure, but I understood what was meant.
    Please, I asked before and I ask again, peace.
     

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