dementia and living abroad away from relative

Discussion in 'ARCHIVE FORUM: Support discussions' started by edelweiss, Mar 2, 2007.

  1. edelweiss

    edelweiss Registered User

    Mar 2, 2007
    1
    Hi there
    I have just found this site and have already gained information and comfort knowing that my husband and I are not alone.

    My mother-in-law was diagnosed with early V dementia last summer after she spent four months in hospital. My father-in-law passed away three years ago after a long illness during which time Mum was his carer. She has also cared all her life for my sister-in-law (now in her 50s) who has had a variety of mental problems from her teenage years - she is able to llive independently in a MIND flat and is assisted by a care team.

    Mum was forced into hospital for her own protection as, unbeknown to us, my sister-in-law had virtually moved in and was bullying Mum, both mentally and physically.

    Mum is home now and we are paying for a full time live-in carer (Mum seems to thinks that she can cope by herself but does not remember to take her medication, make meals etc and needs protection from my sister-in-law).

    From a distance it is really difficult to get a clear picture of what is actually happening with the care authorities, social services -

    does anyone check that Mum is regularly assessed ? check-ups ?
    is it better to keep paying for fulltime live in care as opposed to residential/nursing home care ?
    the live in care is arranged through the social services but paid for by Mum until her monies run out, do the social services remain completely involved in her care, medical assessments ?

    My husband is tearing himself apart with guilt that we work abroad and does not know which way to go - so much so that at the moment he is almost trying to ignore the situation, he is afraid to speak to his Mum on the phone....

    What can we do ? Any advice, thoughts, views, help would be wonderful please
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,558
    Kent
    Welcome to TP.

    I have no experience of caring long distance, but there are some on TP in exactly that position. I`m sure someone will be able to help you soon.
     
  3. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Edelweiss

    Welcome to TP. It must be so difficult to care for someone from a distance, and we all know abouit the guilt monster.

    The best person to advise you is Jenniferpa, she lives in the States. She'll probably be along soon, allowing for the time difference.

    Does your mum see a consultant? That's probably the only way she'll get regular monitoring. And SS will only visit if you nag them. I'm afraid you're going to be very hands-on to get the attention you need.

    Have you contacted your MIL's local branch of Alzheimer's Society? They may be able to offer some advice. In the meantime, you could read Jenniferpa's posts.

    Good luck
     
  4. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    And here I am! Would have been here sooner but had to drive DH to court for Jury Duty (so pointless, they won't pick him as he's an attorney).

    Anyway, welcome to TP edelweiss!

    Yes, I'm a distance carer: my mother is in the UK and I'm in the US. In a way I'm sort of envious: how come you managed to get social services to arrange for carers? I never managed that. My mother had a stroke over a year ago, and first of all I tried to cobble together care using a private company, which, although some of the individual carers were great, just didn't work out, primarily because there seemed to be no oversight. I finally placed my mother in an extra care apartment attached to a nursing home. She was there for a year, but now, sadly, it looks as if she'll have to be in the nursing home full time (she's had a number of falls). The single thing that has made this workable is my mother's wonderful domicilliary care manager. I cannot speak too highly of this woman. Apart from arranging carers, she also makes sure that mummy gets to hospital appointments, calls the doctor in when there's a problem, and generally smooths my path. She even forwards mummy's mail to me. In effect, she acts like a social worker should (or at least as I think they should), or as I would if I was there full time.

    I think your correct: oversight is the key, and I don't think social services have the time, inclination or even power to provide that sort of oversight. One would hope that the live-in carer would do this, but perhaps not?

    Incidentally, I can really relate to your husband's position: I didn't shirk the phone calls, but I sure wished I could have done. You have no idea (and this applies to any carer who is not actually living with the person) just how critical any complaint or worry that your loved one has when they raise it on the phone. Will it keep or won't it? Is this an unfounded worry or a justified one? You just don't know, so you spend your life sort of suspended between hope and dread. You hope that no phone calls mean everything is OK, you dread the possibility that what it really means is that they've fallen and can't get to the phone.

    Any specific questions just ask. I should mention, however, that as from tomorrow, I'll be out of touch for a couple of weeks: I'm coming back to England again, and will essentially have no internet access.

    Jennifer
     

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