1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. worf

    worf Registered User

    Aug 8, 2015
    10
    redditch
    My partner was diagnosed with Alzheimer's over 7 months ago! Although for some of the time she is absolutely fine there are times when she gets quite confused,agitated etc! One or two members of extended family virtually accused several members of closer family that we were making it up about the memory and confusion and that we were kind of making it worse????? They only seeing my partner for a few hours every week is this how other people's family react?
     
  2. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    Oh, absolutely. Mum is really good at holding herself together for very short periods of time so that she can appear quite normal and she is in mid-late stages!
    Its often referred to on here as "hostess mode" and isnt it annoying? Family members who you never see (invisibles) turn up - shes in hostess mode - they dont believe you and tell you everything that you are doing wrong and what you should be doing :mad:

    They are not doctors, but still think they know better. Take no notice, or perhaps get them to look after her while you have to go out!
     
  3. Blimey

    Blimey Registered User

    Jun 6, 2012
    20
    Mmm this is how it effects some people, phasing in and out is the new normal.
    Suggest to the doubters they do some research. I suggested this in the kindest way and found the worse offenders never raised the matter again:D
    I don't actually believe they researched anything because they still occasionally make comments based on ignorance but I now just laugh, oh and my serene attitude has taken 3 years to perfect...they used to drive me up the wall. All the best.
     
  4. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,919
    Male
    Bristol
    Never had such an extreme reaction worf, but it has taken OH's daughter a while to realise how bad her mum can be when she only sees her once a week or so. Her son rarely visits and only seems to see her on good days mostly, so hard to get him to understand. I liked canary's advice, though I wish you luck persuading family to help out with caring, so probably best settle for ignoring their criticism.
     
  5. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    Unfortunately, the world is full of "experts" who know everything about someone they see now and then, whereas you, and close family members, who see your partner much more frequently, are the only ones who really know how things are.

    One "friend" who saw my late husband once in a blue moon, announced "well, he looks fine to me!", as if the fact that I had shaved him, persuaded him to shower, and he had a clean shirt on, somehow meant that he couldn't have Alzheimer's!

    After a while, even though I found myself wanting to strangle people like that, it was easier to just murmur something than to argue. You know what the true situation is, and that's what matters. I wish you well. xxxxx
     
  6. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,519
    Ireland
    Oh yeah. During the first several years of my husband's illness, I was asked more than once " Why would you say such things about your husband? " - those people were convinced I had some sort of problems - either marriage or psychiatric - to say such things , when my husband assured them he was fine. Only when his illness progressed and his behaviour couldn't be hidden - nor could his loss of memory and language skills - was I believed.
     
  7. raptorman1957

    raptorman1957 Registered User

    Jan 5, 2016
    14
    manchester
    Hope i am posting appropitly i was diagnosed three mounths ago (early onset alzheimers) i took the veiw if anybody asked i would tell them. On balance i now regret this at least half the poeple i have told have disbeleived me and one told me flat out i was lying .
     
  8. 1mindy

    1mindy Registered User

    Jul 21, 2015
    539
    Female
    Shropshire
    My OH was diagnosed in 2012. Only at our annual Christmas eve get together with old friends this year has anyone of them said he is not good is he. Up until then they said he seems OK to me etc he has covered it for years. You just need to ignore comments, one day they will understand.
     
  9. raptorman1957

    raptorman1957 Registered User

    Jan 5, 2016
    14
    manchester
    Just reread this awful spelling sorry.
     
  10. maryw

    maryw Registered User

    Nov 16, 2008
    3,805
    Surrey
    That's exactly what happens to my husband, he goes into "host" mode. He sees his sons for a few hours 2-3 times a year. I'm sure they think I'm neurotic, and it makes you feel alone and unsupported. However, our next door neighbour is one who has noticed the changes and the mood swings.

    I think you just learn to accept that empathy is not always forthcoming and to trust your own instincts. TP is a great place to find empathy and it helps to write it all down.
     
  11. canary

    canary Registered User

    Feb 25, 2014
    10,531
    Female
    South coast
    Dont worry about the spelling.
    Im sorry you have had such a bad response from people.
     
  12. eve67

    eve67 Registered User

    Jan 23, 2015
    31
    Agree with everything Canary says. It is just amazing how well my OH can seem to be 'normal' for long enough i.e. a couple of hours visit. Is it possible you could get any of them to stay the odd night and that you have to slip out for a an hour or two?
     
  13. Casbow

    Casbow Registered User

    Sep 3, 2013
    994
    Colchester
    worf

    My husband was diagnosed 7 years ago. Most of the time visitors still say he seems ok.
    The truth is he cannot follow any conversation. He doesn't know up from down. In from out. He doesn't know where the loo is in our little bungalow. I could go on but the truth is when we get visitors (not very often now) he is so pleased for a change in his day that he does seem a bit better. For a start he sits down. Normally he is on his feet pacing most of the day. People probably expect to see them worse and therefore find them OK!Love to you.x
     
  14. Jinx

    Jinx Registered User

    Mar 13, 2014
    2,333
    Pontypool
    I well remember after we moved to a new area, a young social worker arrived, spent less than 20 minutes with my husband and declared that he seemed fine. I suggested that he read the file from the previous council's social services department, hospital etc. He rang me a day or so later rather sheepish saying he had read the file and understood the extent of the problem (I'm not sure he really did even then). I don't know why people take things at face value and think they know it all. grrrrr!


    Sent from my iPad using Talking Point
     
  15. optocarol

    optocarol Registered User

    Nov 23, 2011
    315
    Auckland, New Zealand
    So agree with all above! As the doctor said the other day, "How many of them have had him stay, or stayed with him for 2 weeks?" Also, support group leader who said, "Most of them wouldn't last a week, let alone a month!"

    Mostly, I think it's ignorance, but doesn't help how we feel.
     
  16. theoh

    theoh Registered User

    Nov 11, 2015
    24
    oh so agree with the comments. my stepchildren (all in their 30s so not kids) branded me a drama queen and just trying to upset them. We live overseas and they visit maybe once a year and so one year I emailed them all confidentially to warn them of his deterioration prior to their visit and go utterly vilified.

    now when they visit they are On Holiday and Coming to Visit Daddy so as well as having a stressful high end job, caring for their father I get phone calls as to what is for lunch and they will go out in the evenings leaving me to babysit and look after my OH - would never enter their heads to suggest I get a break and an evening out.

    My OH does his best to rise to the occasion but ends up being utterly exhausted, stressed, anxious (he forgets they are all grown ups now). on their last visit he fell three times and ended having to spend two days in bed.

    they reckon they are coming to visit again in the next 8 weeks.......

    so yes family not in daily contact don't see the changes, don't appreciate the issues and daily dealings. From the main carer point of view it is so frustrating and soul destroying but at the end of the day I love my OH he has been my soul mate for 23 years and yes I get upset with remarks but it is him I am there for not them.
    Chin up.
     
  17. worf

    worf Registered User

    Aug 8, 2015
    10
    redditch
    Thanks to all for their comments and experiences ,it really does help to know that this is not an uncommon scenario! However it is very difficult to bite your tongue sometimes,especially when they are virtually accusing you of lying!!
     
  18. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    After a while, you'll find you can lie with ease. ;) Another friend, who again we saw once in a blue moon, told me that I should speak to John s-l-o-w-l-y and clearly. Wow! I'd never have thought of that myself! Instead of finding a sharp knife and stabbing her, I said "What a wonderful idea! I must try to remember that!" :mad:
     
  19. Onlyme

    Onlyme Registered User

    Apr 5, 2010
    4,999
    UK
    #19 Onlyme, Jan 9, 2016
    Last edited: Jan 9, 2016
    As long as we understand you who cares about spelling. Mine is dreadful and Shakespeare's wasn't too good either!
     
  20. Jean1234

    Jean1234 Registered User

    Mar 19, 2015
    254
    Charming with the consultant

    My OH put on his charming self when we visited the Condultant and therefore his report said that he didn't seem to have any behaviour problems. Why don't the consultants take a few minutes with the carer on their own to ask questions so that they get a better understanding of how things really are. You can't chip in and say much infront of the OH?
     

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