Family fallout, advice please....

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

  1. blooddiamond

    blooddiamond Registered User

    Hi,
    I am new to this board and have come here on the advice of my wife. My mother has Alzheimers and the family, specifically my brother and myself have fallen out badly over whether my Mum should go into a home or not.
    Mum is in the mid to late stages of the disease and she is extremely passive. My father is the carer and he is eighty and disabled.
    My brother has tried to have Mum put into a home for over five years now (to my mind because it is the easiest and most convenient thing to do) and I am against it because I do not believe it is in mums best interests, put simply I dont believe she needs to be in there yet.
    My father has done an amazing job and is now finding it hard to cope on his own, I live in Germany but my brother only lives five minutes away, yet I have seen more of her than he has over the year.
    The problem is that my brother has spoken to social services and my Dad and persuaded them it is time for her to go in and for Dad to move as he wont want the memories. (They are treating it as if she is dead already!) I have fought a constant battle to give my Mum the dignity and respect she deserves! I feel they should try extra help at home before condeming her to a four by four white room with nothing but a bed and bedside lamp.
    I feel she will die if she goes in, but I am fighting a losing battle and my Mums best interests dont seem to matter anymore. Am I really that wrong?
     
  2. sunny

    sunny Registered User

    Sep 1, 2006
    598
    #2 sunny, Sep 5, 2007
    Last edited: Sep 5, 2007
    Hi,
    I have just read yr posting. I am afraid yr Dad obviously cannot manage with yr mum and yr brother is obviously unable to cope either. You are in Germany so I am afraid you are of no help in the practical sense. It seems from what you told us that the best place for your mum would be in a residential home nearby so that your father can visit as often as he can. I know it is hard to accept, but I cannot see any other option working, yr Dad is in his eighties, how can he possibly be expected to cope even with extra help going in during the day what would happen at night. And your brother is obviously not wanting to or able to care. Obviously the Social Services will consider all before anything is agreed to. The only thing I cannot understand is where your Dad is going to go? Have you been in touch with the Social Care Team yourself to put your point of view?
     
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    Hi blooddiamond and welcome to TP

    You pose a difficult question and one to which I'm afraid that no one can give you an answer. So what I'm going to do is pose some more questions for you (sorry).

    What sort of help COULD social services provide? In many areas the help that is available is severely limited, particularly if you come under the category of self-funded.

    Have you looked at any residential homes? Although they vary a lot, not all of them come under the category of "four by four white room with nothing but a bed and bedside lamp": in fact none that I have seen.

    You say you've seen your mother more than your brother. Have you actually spent an extended period of time as her caretaker one on one? With your father not around? Until you've done it yourself it is difficult to judge how much assistance she actually needs. Dementia sufferers can have very challenging behaviours, even the passive ones, and your father may be simply tired of the struggle, and struggle it can be.

    You say your brother is encouraging your father to move: are your parents homeowners, because if so, this might want ot be rethought. When one spouse enters residential care, the marital home is disregarded for the purposes of caluculating the contribution to fees: however when the marital property is sold, that disregard ends. If they don't own their own property this is of course non-applicable.

    Have you investigated any other living accomodation? There are more and more extra care facilities springing up: these are flats or similar where there are carers, laundry meals etc on site. Sometimes they are attached to a nursing home. My mother was in one of these facilities and many of the residents are couples where one spouse has health problems while the other does not. There are private and LA facilities like this.
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Blooddiamond, welcome to TP.

    I'm sorry you're having a family fallout over your mum's care. You'd be surprised how often that happens. Everyone wants the best, but no-one can agree on what the best is!

    It may well be time for your mum to go into a care home, but only your dad can decide that. It is hard work caring for someone with dementia, I know because I am sole carer for my husband. But I want to keep him with me for as long as possible, and I wouldn't want anyone else to make that decision for me.

    On the other hand, if I decide the time has come when I can't cope any longer, I hope the family would support me.

    I agree with you, though, it does seem a bad idea for your dad to move. Why would he want to get rid of the memories? Leave him to make his own decision on that one.

    This is a totally false idea of a care home. These days most are comfortable, well-decorated and furnished, and residents can take in as much of their own furniture as they want.

    Perhaps on your next visit you could look at some, and help your dad decide which would be suitable for your mum.

    Please be prepared to consider all possibilities, and don't force your dad to continue if he is finding it beyond him. Most of us have to give up in the end.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,654
    Kent
    blooddiamond

    I`m very sorry but I don`t think you are in a position to call the shots from such a distance.

    Unless you have had the experience of caring for your mother 24/7, over a continuous period of time, however passive she is, I don`t believe you have any idea how much pressure your 80 year old disabled father can be under.

    I`m really sorry to be so blunt, but I can only suggest you take some compassionate leave, look after your mother as your father does, and then you may be in a position to make a judgement.
     
  6. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    I too found this difficult and had great problems with my brother's attitude. At the time I was put off by his extremely hard attitude. He could not cope and years later I realise that he was in denial. Although he was 30 miles away he only did short duty visits and did not understand how much Mum was able to cope with if not pressured. He also had a wife at the time who I found difficult to deal with but whom he thought cared.

    In the end my mother required emergency hospital care for a condition unrelated to dementia. From the hospital she was assessed as needing nursing home care and was classed as being totally unable to return to her home, eventhough SW had, whilst she was in hospital, gotten a very thorough care package together (she lived alone but it was to involve about 8 visits a day for help with bathing, dressing, tablet supervision, meals on wheels etc.) I have to admit that although needing this on departure from hopsital the home improved her condition totally within 3 months to a state where she could possibly have moved to a residential home for a short period but that is all it would have been so the decision was made to leave her in the home in her own best interests.

    I could not do more than I was doing at the time. My twin sons were not yet 2 but I had great difficulty coming to terms with how little my sibling would do. This continued after she moved into a nursing home. In fact although he was closer the staff within a few months contacted me first regarding any decision to do with my Mum's welfare as they realised the situation.

    I feel sorry for my brother now. He could not cope and was in denial. I was exhausted with no help with twin toddlers and grieving for my Mum. However I managed to spend a lot of time with my Mum while she was at the moderate stage. She still generally recognises me now although my brother reckons he could be anyone on the odd occasion he still visits. I am so sorry for him that he has lost this precious time with her.

    I also know from the weeks and weekends I spent with my Mum whilst she was at home how tiring the 24/7 nature of the illness is, and she wasn't that bad then. It may be for the best for your parents to find some alternative suitable form of care. I would also suggest that your father moving straight away may not be the best solution. I'm not thinking here financially but from the bereavement counselling that my Mum got when my dad died from cancer..basically she was advised to make no big changes eg moving for at least 12 months, possibly longer. It prevents you doing spur of the moment things you may later regret.

    It may be that caring is just proving too much for your Dad. It is hard but I would speak to the care team involved and advise them of your feelings and also get their feelings about the situation. Whatever happens you all want what is best for your Mum and Dad..and this may even be the supported living solution mentioned.

    (((((((((((((hugs)))))))))))))) This is not easy

    Love

    Mameeskye
     
  7. blooddiamond

    blooddiamond Registered User

    Many thanks for the forthright and honest answers everyone has given, here's some more info for you, I hope it doesnt bore. I just am so mixed up now.
    It is a very hard thing to let go as I am sure you are all aware. This is my Mum after all and I love her immensely. She had to put her life on hold 47 years ago when my Dad had a major car accident. She was told she would have to push him for the rest of his life (att hat time he was not expected to live beyond 50)
    Now things have come full circle and try as he might, my Father feels unable to cope any longer.
    It is fair comment that I live too far away to be totally effective but I have done my level best to support my Father and defend my Mother in any way I can. I had a major battle over the drug Ebixa for example, my Father had been informed that there was "No" drug available for mid term Alzheimer sufferers and I surfed the net, found out about it and contacted the drug company in Copenhagen. It then led to a big fight with the local health authority and the doctors, all of whom made decisions based on cost, not quality of life etc. Despite their resistence, I managed to get my Mother on the tablet and for about 18 months it actually brought Mum back to some degree. We had 18 mths with her we would not have had if we had just believed NICE etc.
    Last year I spent six weeks totally redecorating the house and making it safer for them both. During that time I helped look after my Mother on a 24/7 basis.
    My Brother never once came over to see how things were or to offer any sort of help with the decorating.
    In January of this year my brother and I fell out badly, my brother "hounded" my Dad without mercy to get him to give my brother power of attorney over their finances. He pushed so hard that one day Dad phoned me up in desperation and said he was going to kill himself. He then put the phone down and I was unable to contact him. nearly two hours later I finally managed to get hold of him, my brother had been on the phone to him again for two hours nagging him about P.o.A. That evening I was telling my wife what had happened when I suffered a mini stroke.
    I do accept that my Mother will have to go into a home at some point, its just that, because she is so passive now (you put her in a chair and she will stay there until you move her) I dont believe that point has been reached yet, surely home care on a daily basis is worth trying first? She will be in her own environment and Dad will be able to see her and do things for her.
    On Sunday, my sister in Canada phoned her, she has not been able to have much of a conversation with Mum for weeks now, I helped Mum by holding the phone, during the call and half way through, I saw that Mum was crying, she was clearly upset that she couldn't say what she wanted to say to my sister. That showed me that she was still aware of things, but could not communicate effectively and it reinforced my desire to defend her and give her the dignity and respect she should have.
    I read somewhere "An age of dignity is where we give dignity to age" and that is what I want to do.
     
  8. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi Blooddiamond

    It must be very difficult for you at the moment, i have no experience of caring for someone with dementia 24/7 or being a million miles from where my heart is, but i do have experience of wanting to care for someone 24/7 and circumstances not allowing, it must be very difficult to cope from such a distance but i take my hat of to you for trying so hard.

    Its easy for people to say, "don't knock it til you've tried it", but by that same token, most would not know what its like to be so far away and not be in a position to give the help and support you wish to give.

    I can imagine that your mum must need a lot of care at this stage, (showers, toileting, sleepless nights etc) and therefore understand your brothers concern for your fathers health, it can be no easy task at his age and it seems he is struggling both emotionally and physically and what your family don't need at the moment is your father ending up making himself ill.

    It is possible to give your mum the care she needs at home if you have the time, resources and finances .......... but falling out with your family is not the answer, if i was you i'd arrange a meeting (for your mums sake, you need to put personal feelings to one side) you need to get together with your father and brother (if thats possible) and decide which route is best for both your mum and your dad (unfortunately, its one of those occasions where you and your brothers feelings come second to how best to help your father cope) If you can't agree then maybe its time to seek professional advice, if your mum has a medical team then it would be worth making an appointment.

    I wish you the best of luck.
    Love Alex x
     
  9. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Thank you for that explanation, blooddiamond, it certainly makes the situation easier for us to understand.

    I presume your parents have a social worker? Has your father had a carers assessment? He is entitled to this, and it canopen the door to all sorts of home care.

    I suggest that you ring SS while you are here, and demand an urgent assessment. It is possible that your dad would be able to manage with a carer coming in morning and evening to help wash and dress your mum, and put her to bed. It's certainly worth trying.

    But if that fails, I think you have to accept that your father has coped for as long as he is physically able. As I said before, most of us eventually reach that stage. Yes, by all means respect your mum's dignity, but also respect your dad's right to life and health, even though he owes that to your mum's devotion. Would she want to see him driven to suicide?

    As for the POA, I do think it's a good idea. But why not get your father to grant it to both you and your brother? I presume there is already one in place for your mum?

    Please let us know how you get on, and good luck.
     
  10. jude1950

    jude1950 Registered User

    Mar 23, 2006
    182
    Lincolnshire
    Hi Blooddiamond.
    I understand that you want to preserve your mothers dignity and I appreciate that you live too far away to become the full time carer.
    However I am in your fathers situation being disabled and finding it difficult to care for myself never mind caring for my Husband with his Alzheimer's disease. It has come to the stage that I have made the decission that my husband needs more care than I can give so he is going into full time care.
    My question to you is what about your father's quality of life ? If caring for your mother is making him ill surely you want the best for both of them. If your mother were to go into full time care your father would be able to spend more quality time with her visiting her. The Care Home my husband is going into is the best I can find with large grounds and regular activities for the residents I can join them when they go on outings have a meal there with him but I* wont have the physically draining responsibility for his care.
    If my husband were to remain at home with me and I were to die what would happen to him then? Your Father is eighty years old and from what I understand not in the best of health what happens to your Mum if he dies or suffers a stroke or some other debilitating illness? Surely it is better that he remains healthy enough to oversee her care within the care home enviroment.
    Dementia is a dreadfulillness don't let it rob you of both your parents.
    ....As for your brother I would suggest you make sure any POA is at least in both your names.

    Judith
     
  11. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    Judith, as she has been in your father's situation, has given you some excellent advice.

    Fine sentiment, but what about your father? Doesn't he deserve some of this dignity? Caring for someone 24/7, even with help, is a grinding exhausting experience even when you're in tip-top condition, which your father is not. From what you say, your father is not only not coping so well from the practical aspect, he is standing on an emotional precipice, and that's an extremely difficult thing to deal with.

    From what you say, both of you boys are placing your father in an untenable position. Your brother is harrying him about financial arrangements, you're harrying him about care arrangements and neither if you is supporting him emotionally. This emphasis on the practical aspects of care is understandable: you feel if you can get those sorted out everything else will fall into place, but I'm afraid it isn't that simple. I assume from what you say your parents have been married for 50 years or more. Do you really understand what it's like to see a life partner slowly slip away? To watch that degeneration and be unable to do anything about it? Your mother cared for him when he was disabled, and I'm sure he now feels duty bound to do the same for her, but can he, emotionally or physically?

    You mentioned your wife in your first posting: what does she have to say about all this? Sometimes in-laws can see a situation more clearly than family members, if family members take the time to listen.

    I think I am right in saying that you feel that your mother should stay with your father in their own home at this time and that this is non-negotiable? And that's where the error lies: when you're dealing with dementia (heck, when your dealing with people) you cannot say "no way, no how", or not until you have investigated all other possible options. I sense that you have not done this investigation, based on your (erroneous) assessment of nursing home accomodation.

    I feel desperately sorry for your father in all this: stuck between two children who appear to have taken mutually exclusive positions, when what they should be doing is working together to make his life easier. For gods sake, your father has mentioned suicide as his possible solution to this impasse: what does that tell you about how he feels about all this? He's losing his wife to dementia, and his children are fighting. If I could I would knock both your heads together until you saw sense.

    I have no idea if your apparent assessment of the situation is correct: that all your brother is concerned about is money and all you're concerned about is your mother's welfare. I could easily see your brother posting with a rather different interpretation of the situation.

    Forgive me, but from your postings you seem to have staked out the moral high ground. You may have right on your side, it's just not possible to tell from a couple of postings on a forum. What I will say is: even if you do have right on your side this is not going to be much consolation when your father has a breakdown, your mother is hustled off to a less than wonderful nursing home and you and your brother are at each other's throats. So I urge you, be the adult in all this: get down from your high ground and try to meet your brother half way, or more than half way, if that's what it takes.
     
  12. blooddiamond

    blooddiamond Registered User

    Okay,
    I hear what you are saying believe me.
    I don't believe i am taking any sort of moral high ground on this and I do of course care about my Father jus as much, Hell that is why I signed up for this forum, in order to check myself and others assessments etc.
    My Father has mentioned suicide in the past over other issues and indeed his Father did kill himself, so believe me when I say I am very much aware of the situation and have tried extremely hard not to involve him in any fueding I may have with my brother. It is sadly, my brother who continually tells my Dad about it in order to push my Dad into making sometimes rash descisions. However, I have backed off a lot in order to keep the peace and protect my Dad. I am not acting childishly and have acted the "adult" in many, many ways. I have only once to my Dad in recent times explained how I feel about the situation, I have constantly told him that whatever decision he makes, I will support it no matter what I myself may feel, because, as has been said often, my dad is 80, disabled and not coping. So please don't damn me by saying yoo'd like to knock our heads together or whatever, I came on here to ask or maybe look for advice on how to cope with all this. I don't believe we have reached the end of the road with home care options, but my Father has been so convinced by my brother that putting her in a home is the only option now that my feelings and thoughts on the matter are rather academic really.
    My comment on homes was I admit an emotional comment borne out of utter frustration and was probably unfair, however in my Fathers case, the only homes being offered by SS and the council are miles away and would involve two busses at least in order to reach them, not counting the long walk as well, which my Father would find very hard. The last "respite" home Mum went into temporarily managed to lose all of mums clothes in the first day, she was dressed in someone elses clothes including bra and knickers, she had been left in bed all day and when I went to find someone I found the drugs trolley sitting in the corridor, unlocked and wide open, with no-one around apart from two patients who were looking into it. A one off case for sure, but perhaps explains my dislike or at least distrust of homes.
    The P.o.A issue is settled and my brother and I now share it.
    In no way do I want any harm to come to my Father or my Mother, I have to accept she will be put into a home and I have to hope that this will be better for my Father, though quite how he will cope alone is also worrying me a lot.

    I am not a child or even acting like one at all, I apologise if I give that impression at all, I can't help how I feel about all this and want to cry my eyes out but won't until it is all over, but if I may be a child for a moment, I would like to say what I believe most people would..... I want my Mum back!!!
     
  13. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,654
    Kent
    I am so sorry.

    What you want is what we all want. I want my husband back.

    We were all set for a happy retirement travelling the world and doing all the things we didn`t have the time or money for when we were younger, and now we can`t even get holiday travel insurance.

    Your frustration and anger is spilling onto the board, and perhaps you deserve more compassion and perhaps my reaction was too unsympathetic, and if you thought so, I aplologize.

    But you are the only one who can solve your problems. And the further away you are from your parents, the more difficult it will be to solve them. In addition, the fact you are at loggerheads with your brother, only makes matters worse.

    The only solution really, is for you, as a family to sit down together, and act in the best interests of both of your parents.

    They deserve equal consideration as they are both frail.

    Perhaps you could get help from a family consellor who might be able to bring a more objective point of view to the discussion. Perhaps SS could give you the available options. Is it possible both your parents could be found somewhere where they can still be together, but both have their needs met.

    Your concerns are not going to be solved easily and people who don`t know you can only see the picture you paint.

    I do hope you can reach some agreement with your brother, for the sake of your parents, and for yourselves too.

    Please let us know how this problem is resolved.
     
  14. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Dear Blooddiamond
    My heart really goes out to you .....you are in an awful position.

    I just want to welcome you to TP and hope you let us know how things develop.

    You obviously spend as much time as you possibly can with your parents....it can't be easy for you living away.

    please keep posting

    Love xx
     
  15. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,418
    Well of course, that's the thing we all want : our parent or spouse back. And anyone who tells you that they haven't wanted to throw a major temper tantrum about the whole thing is kidding themselves. Some of us, and I'll put my hand up here, have actually done just that. So no, we all have our adult and not so adult moments when confronted with this disease.

    It occurs to me: has your father ever been offered any advocacy services? These services are being set up all over the country (although in many places it's still theoretical rather than anything else). Also has he had a carers assessment (I assume he has as you mention respite, and that normally doesn't happen unless an assessment has been made)? I'm thinking that as the whole thing is so fraught, behaps and objective outsider (i.e. an advocate) might be able to establish exactly what is it HE wants to do. I also assume that any nursing/residential care would be funded by social services? If the nursing homes that are being offered by the LA are unsuitable (and I agree, 2 bus rides is not on at his age) there are various avenues you could explore to force the LA to place her closer, if it comes to that.

    Unfortunately, as a non self-funder, your father is to a certain extent at the mercy (or lack thereof) of whichever LA he comes under. When you realise the going rate for home care is £12-£14 per hour, and probably higher in London, you'll see that placing someone in residential accomodation becomes an attractive option when the calculations are done, which is why I would be hesitant to simply allow social services to make a determination about appropriate placement.

    I'm sorry she had a bad experience in respite: unfortunately missing clothes (teeth, glasses, fill in the blank) is something that happens in residential care a lot. And, there are good and not so good homes.

    Do you mind indicating which London borough we are talking about here? Some of the forum memebers have experience with various boroughs and may be able to point you to appropriate resources.
     
  16. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    BloodDiamond

    Your heartfelt plea at the end is how I felt too. Nothing makes that happen and each of us has to find our own way of dealing with it.

    Believe me I do know how you feel. It is grief that makes you feel this way and fear. I do not believe that anyone seeks to upset you but I also have been the one living miles away. Luckily My brother and I are now reconciled.

    I ensure though throughout to ensure that my Mum didn't suffer and I am sure that is how you feel about your parents too. Luckily we were past the stage for hard decisions about Mum's care when I had problems and I did what I could about the others without regret as I realised that I could not support everyone and myself. I was at a time when many others in my situation are relying on others to help them out, not having to shoulder burdens for parents and their needs and their sibling's needs too. It can be painful.

    I accepted that nothing was going to bring my Mum back and then relaxed about everything else other than spending time with Mum. They were precious hours and by concentrating on that rather than anger at others for not visiting I went back to what were the essentials for me in my family unit and everything else had to learn to wait.

    I hope that you can find a solution.

    Mameeskye
     
  17. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Blood Diamond,
    To want what is best for both parents - but to know that what is best for one is maybe not best for the other. The decision of residential care is always a difficult one - even when the dementia is far advanced you still find yourself wondering if your loved one is aware of the situation

    Not knowing how your father will cope with the isolation - nolonger being needed in the same way - and you too far away to feel that you can help. You are in a difficult situation.

    I am sorry if you feel that you have been damned - that is not what TP is about - it should be a place where we can safely explore feelings and alternative courses of action.

    If the decision really has been made and your views are only academic, then I would see your priority now to be to ensure that your mum is placed in the best care possible, and that your dad is guided to make the best decisions for his life.

    Love Helen
     
  18. alex

    alex Registered User

    Apr 10, 2006
    1,665
    Hi

    At the risk of upsetting some and i apologise in advance if that turns out to be the case, but i find that i sometimes have to say what i feel..........rightly or wrongly (usually wrongly..........but hey...........i've got big shoulders!!!!)

    I'm sorry, but i have to say that i found some of the replies to this thread totally shocking...............when i think back to the first time i came to TP, i was absolutely desperate and the thing i could not have coped with would have been the kind of responses seen here, sometimes people are just looking for a bit of support to get them through a bad time .............and i thought that was what TP was all about.......SUPPORT.............not opinions.

    .

    Blooddiamond.............you are not being damned, no one is here to judge you, we all cope differently, you are doing the best you can under difficult circumstances and if you didn't care, you wouldn't be here on TP asking for support and advice.

    I have always found all the members/mods etc to be very caring, kind and supportive, even though they too are coping with the stresses of caring, grieving ect, please don't be put off from coming to TP when you need help and support.

    OK..............fire away.

    Alex :(
     
  19. blooddiamond

    blooddiamond Registered User

    Thank you all for understanding, this is going to be brief because i am on the verge of tears at the moment and I have no wish to be a drama queen etc, but my previous last sentence was from my heart and I know deep down she has gone on a one way journey, on which I cannot join her at all. I actually wrote a poem about it last year called "Do you remember me?" It said what I sometimes struggle to say.

    The borough we are talking about is Hertfordshire, my parents live in Barnet and the nearest nursing homes offered are Edgware, Collingwood and they seem to favour Borehamwood. All of these are a fair distance and though my Father still drives, he is far from being a safe driver these days.

    I guess I haven't said goodbye to Mum really and that is my biggest problem. She has left the station and I still can't say goodbye.
     
  20. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,654
    Kent
    Dear blooddiamond,

    It is not yet time to say goodbye. Your mother is still here. In a different guise perhaps, but still here.

    Only she knows what she hears, sees and feels.

    Take care.

    Love xx
     

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