1. Suzanna

    Suzanna Registered User

    Dec 5, 2007
    55
    Manchester/London
    hi everyone, hope you are all muddling through ok,

    i have a little (or not so little) dilemma. The background in short is - Mum has genetic early-onset alzheimers, not sure what 'official stage' she would be described as but she is still walking, though not up straight or very far, she sometimes talks but not in context mostly and she can't answer direct questions. She is also unable to cope with her own personal care.
    Currently Dad looks after her weekends and evenings and a carer comes in weekdays during the day while dad is at work.

    so, to the dilemma...

    some days dad sounds relatively up-beat and is managing ok. other days he is clearly struggling (as you would expect!). I am in Manchester at uni (they are in London) and so am not much hands-on help, all i do is ring as often as i can. I have a sister, who is fabulous with Mum, loves her to bits and does everything she can. The problem is that her and my Dad haven't got on for as long as i remember. This isnt just how 'all families have their fights' (unfortunately), it is at the point where she will only deal with him when she has to for Mum, and when that happens it invariably ends in arguing. So. My concern is that what to do when Dad can't cope with Mum at home anymore because my sister is adamant that she won't see Mum going into care. I understand where she is coming from, its not like anyone wants to see that but i sort of also see it as innevitable. From her perspective, if Dad says he needs Mum to go into care it's because that 'suits him', whereas i really don't think this would be the case. Her alternative is to stop working herself and care for Mum, but this would only be financially viable if she could move in to Mum and Dads house and look after her there. The problem there is that she wouldn't do that if Dad was living there - but where would he go!?

    the more i type this the more absurd the whole scenario sounds - but none the less its where i'm at....! So i either have to convince my sister that at some point when dad can't cope we have to consider a care home, or i have to find somewhere for my Dad to live so that my sister can look after mum.... both sound impossible (in particular getting Dad to give up his home). gosh. i feel either way will be an uphill battle, involving mass arguments and many tears....

    well, this has ended up being far longer than planned, apologies, and thanks for reading. If anyone has any pearls of wisdom, or has been in a similar situation, or has any idea how to broach the idea of care with my sister without causing much upset!?

    Cheers,

    Suzanna

    PS: off to see the genetic counsillor now.... but that is a whole other story!
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Suzanna. Not absurd, I don't think, but very sad.

    To be honest, I don't think your sister has a leg to stand on. Your dad is caring for your mum, and also working full-time. No wonder he's finding it a strain. What I think would be absurd would be to expect your dad to move out so that your sister could move in.

    Obviously I don't know why she feels like that, and she may well have very good reason, but ultimately it is up to your dad to decide on the best possible care for your mum, and when the day comes that he feels that is beyond him, as so many of us have had to do, it will be his decision whether or not she goes into care.

    It would be so much easier for all of you if you and your sister could back him on this, so that you would all feel comfortable with visiting her and possibly taking her out for days.

    Quite how you achieve this, don't know, but I can't see any other solution.

    Love,
     
  3. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Skye has given some wise comments.

    However my only thought is that when the time comes and your Mum is really needing a care home, then your sister may think differently. I should imagine that by then CPNs, Social Workers and GP will be involved. At the outset of this disease I never thought I could consider my husband in a care home -BUT as things develop it is easy to see me changing my mind. This could apply to your sister too.

    You may be worrying unnecessarily. If it should come to that and things are difficult then you need the help of the above mentioned 'outside' forces. Try to encourage your Dad to keep them 'informed'.

    Hope all this makes sense. Take care Jan
     
  4. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Suzanna,

    I think you've already had a lot of good advice.

    Could you (and your sister) step back from the family involvement for a while and consider how it is going to be for your mum?

    It may well be that the only way forward is for your mum to be somewhere where she can be cared for 24/7.

    You and your sister care for your mum and dad..does your sister REALLY know what giving up work and caring full time would involve. Ask her to think about it really carefully..loving and caring are different..I would urge you both to think about what's best for mum..

    Love Gigi xx

    ps..I'm not sure where you stand re kicking your dad out of his home so one of you could move in to look after mum..IMHO..not a good idea x
     
  5. Nell

    Nell Registered User

    Aug 9, 2005
    1,170
    Australia
    Dear Suzanna,

    What an awful situation to be in. I'm so sorry for all of you.

    It seems to me that your major dilemma will be, when the time comes, whether to support your sister or your Dad. This is a gut wrenching decision and I wouldn't presume to tell you what to do. I can only offer my perspective.

    I think , as others have said, that it is your Dad who will and must have the final say. He is her husband and the primary Carer. It is lovely that your sister does so much for your Mum, but it is not her decision to make.

    Also, I think your sister is operating from an emotional perspective (very understandable) rather than a realistic one. When the time comes, it will almost certainly mean better care for your Mum, if she is in a Home. This is the absolute guide - everything must be done for your Mum's best interests,even if family members hate it.

    On TP we all understand the reluctance of family members to "put someone in a home" but realistically, it is often the only real answer to an awful situation.

    IF your sister refused to accept this and insisted on caring for her Mum, then your Dad must NOT be expected to leave his home OR to have your sister to live there (as she is so against him, it would be horrific for both of them). She would need to realise that it was HER decision and she must take full responsibility for it. All this sounds terribly harsh, but I think it is the only way to have her realise (if she is adamant) that she cannot make others do what she wants them to do.

    I admire your sister very much for her undoubted love and care for your Mum, and no doubt you love her dearly too. But unfortunately this awful disease has a terrible way of stripping away any emotional or sentimental decisions and forcing each of us to face reality, no matter how much we hate it. Sadly, it may come to this for your sister.

    As for yourself, perhaps you can tell your sister how much you admire what she is doing for your Mum and how much you appreciate it, but also say that the final decision must be your Dad's. . . . . ?? That way you are preparing her for the fact that she cannot expect you to "go against" your Dad's decisions. . . . .?? Only you can know if this is a good idea in your own situation. Sadly, only you can decide what to do in the end. This is very hard for you and you have my utmost sympathy.
     
  6. elaineo2

    elaineo2 Registered User

    Jul 6, 2007
    945
    leigh lancashire
    Hi Suzanna,is it a possibility that you,your sister,mum and dad could agree to respite care for your mum?it may be a temporary measure that will give you all a break to sit back and decide what happens next.the ultimate decision is hers at the end of the day,given she has the capability to make it.
    good luck and best wishes elainex
     

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