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. lena

    lena Registered User

    Nov 28, 2005
    1
    scotland
    After over a year of looking in on tp I have decided to post!
    I am new to all forums and am not the most computer literate but here we go..
    I have read many posts on this site and agree that it truly gives support to all people affected by the monster that is alzheimers.
    My mum was diagnosed with AD nearly three years ago at the age of 60.Her decline in the last 6 months has been unbelievable.She is now unfortunately in the latter stages;she is unable to communicate bar a few words here and there,is immobile ,needs a lot of help with eating and drinking and is now immobile.This has been a very hard and sad journey for all the family and has been and still is difficult to come to terms with as I'm sure you are all too familiar.
    At present my mum is in hospital waiting on a care home place and we have the horrible task of coming up with a shortlist of homes for the SW Dept.
    I was wondering if anyone else has seen the disease progress as quickly.Until 4 months ago my mum was at home and able to go shopping with us ,talk and walk for Scotland (although disorientated and incontinent).The psychiatrist has now said that my mum had vascular dementia as well.
    It has been so quick.Has anyone else had the same awful experience of seeing their love one decline so fast? Don't know what to expect next and when....
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Lena,
    Just wanted to welcome you to TP.
    My experience with my mum has been over a much longer period. I am sure that there are others in a similar position though.
    Love helen
     
  3. j.j

    j.j Registered User

    Jan 8, 2007
    91
    hello lena i am also fairly new to posting on tp. we like yourselves have watched our mam go downhill rapidly after living on her own for six years with the disease. only two weeks ago we were out shopping together and now she is in hospital on an assesment ward looking like a lost soul. we have been to look at care homes at the weekend and it seems unbelievable to us that we are at this stage in such a short space of time. i wake up in the night and think how did this happen. we have never had any diagnosis at all about mam. i wish i could offer helpful advice but yout post just sounded so much like our own situation,we search and hope someone can guide us in the right direction.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,572
    Kent
    Hi Lena, I would like to welcome you to TP too, although I`m sure you`d much prefer not to need it.

    From what I`ve learnt, there is no timescale with Alzheimers. My mother was in a home for 6 years and probably had Alzheimers for about 3 years before that.My husband was diagnosed in 2005 and might have had Alzheimers since 2002. Yet a friend of my mothers died within 6 months of being admitted to a home.

    There are additional factors that may affect the progress, like heart and circulation problems, diabetes, and general health.

    This makes it so difficult to assess and really, no one knows what to expect.

    Now you have finally posted on TP, I hope you will continue to do so, as we learn from each other.

    Love Sylvia x
     
  5. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Lena
    Welcome to TP
    My mum was showing quite a slow decline until December until she fell and broke her hip..........from then her deterioration has been rapid.....she can't walk,feed herself,drink unaided, and is unbelievably frail.......when(or if) she is fit for discharge she will be transferred to a nursing home.......
     
  6. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi lena welcome to TP

    my mums dementia started with a heart attack which caused the brain damage she was ok for a year or so but went downhill very rapidly, so rapidly the consultant told us she would die within the year.
    that was last february, she apparently now has levelled off and the consultant dosent know how long it will be,
    i think sometimes perhaps with some it can be rapid at the start, then it levels off for a while.
    not sure if this helps?
    good luck anyway
    donna
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    This was the way it went for my wife Jan. Slow decline. Went in for assessment. They let her fall and she fractured her pelvis. Never walked again, needed feeding etc. Moved to nursing home.

    That was 6 years ago. Today, all the disabilities remain, worse of course, but she is physically quite strong.
     
  8. Lillie

    Lillie Registered User

    Oct 21, 2006
    15
    Midlands
    Hello Lena,

    My mum has been diagnosed for 6 months now but we had serious concerns for over 3 years prior to this. Her decline is difficult to chart. When I think back to how independent she was a few years ago - driving, shopping, looking after others - to how she is today, unable to be left alone due to confusion, not able to handle money or do the puzzles she used to love, needing instructions on how to wash/dress etc. it is truly astounding and heartbreaking. This disease is so cruel because nobody can give you any answers at the time when you need them most. All we can do is go with the flow, watch and wait, and try our hardest to enjoy the time we have left with them. My heart goes out to you and I am glad you have posted on TP - I have found it a real source of support. You, as with all of those in our wretched situation, are in my thoughts and prayers x x
     
  9. micksuehilton

    micksuehilton Registered User

    Feb 22, 2007
    6
    East Sussex
    My wifes sudden decline.

    HI, I to am completely new to this, only got my first computer at xmas.
     
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I don't know whether to congratulate you, or commiserate with you! ;)

    Seriously, though, welcome to TP.

    If you have any questions about using TP itself, by all means ask. And of course also post anything you may wish to know about this whole area of dementia and caring. There are carers with experiences of most things here on TP, and they will be happy to try and help, or to learn from your experiences.
     
  11. micksuehilton

    micksuehilton Registered User

    Feb 22, 2007
    6
    East Sussex
    My wifes sudden decline.

    HI, I to am completely new to this, only got my first computer at xmas.

    My wife diagnosed with Posterior Variant Alz 6 years ago has taken a dramatic turn for the worse. She has had irregular seizures for around a year (very scary).Going back to November last we were st ill maintaining some quality of life . Shewas able to walk several miles converse and share a joke or two. Three months on and she can no longer stand, has to be hoisted from bed to chair, and virtually does not communicate. Its becoming very difficult to feed and drink, she is currently taking anti epelectic liquid medecine. Confined to bed and chair has, now developed sores. Its very worrying and I dont know what to do to help her, even though I have carers come in to wash and dress her via hoist,(most distressing for her and me!!) As has been observed every case seems to progress differently the consultants certainly do not have the answers, she was inthe LOndon research hospital for Neurology and Neurosurgery(Holborn) for a week for tests without much outcome.Its very lonley careing 24/7. But I live in hope and tommorrow is another day. All the best, and this site certainly helps
     
  12. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hi,
    It must be so hard having to watch your wife change so quickly.
    Does your wife have a special air mattress for her bed, to help reduce the risk of sores - my mum is in a NH, and I know that she has this special mattress; I think you can get them for chairs as well.
    You may be able to get these through the district nurse or Occ Therapy.

    You are doing well to find your way around the computer - getting on the Internet and finding us. There is always someone on here, so do keep visiting.

    Take care.
    Love Helen
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi

    Welcome to TP.

    I am caring for my husband, who was diagnosed 7 years ago. I know what you mean about loneliness.

    TP is a lifeline, someone to talk to at any time, and a source of information when the problems arise.

    Well done for finding us so quickly, and keep in touch.

    Love,
     
  14. micksuehilton

    micksuehilton Registered User

    Feb 22, 2007
    6
    East Sussex
    #14 micksuehilton, Feb 25, 2007
    Last edited: Feb 25, 2007
    Your kind Thoughts

    Hi, MIck again,

    Thanks for those kind thoughts it helps.
    My wife Sue does have a presure matress on the bed supplied by OT, but strangely enough I was told it was not in there remit to supply one for a chair!!.
    So I am looking into this via District Nurse. I think a reclining chair maybe a answer for daytimes, whch hopefully will alter positions regularily, will will see.
    Any thoughts on eating problems??. Also not such a pleasant subject, constipation, my wife seems to fluctuate from freely going to being constipated for a week or more which she must find most distressing, but sadly can not tell me.
    I just wish I could help her more.!!!
    Thanks to you again . Mick
     
  15. micksuehilton

    micksuehilton Registered User

    Feb 22, 2007
    6
    East Sussex
    #15 micksuehilton, Feb 25, 2007
    Last edited: Feb 25, 2007
    Mick again.

    Why at the end of my thread does the Edit not disapear as in all the other threads????
    Thanks.
     
  16. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Mick,
    High fibre and prunes for breakfast. But if swallowing is a problem - that wouldn't work.
    In the NH clients are regularly given Movicol to keep things moving!

    Mum has a recliner chair which does help change the pressure points - though she is now put to bed in an afternoon, to relieve the pressure on her bottom.

    Mick, sounds to me as though you are doing all that you can - that is all anyone can do.
    Love Helen
     
  17. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,439
    #17 jenniferpa, Feb 25, 2007
    Last edited: Feb 25, 2007
    Just a post to see if I can work out what the problem is.

    Ok I think what you're referring to is whether or not you edit in advanced mode or not.

    If you're in advanced you can enter a "reason for editing". If you go back and sunsequently edit the same post, unless you go to advanced again, you can't change that "reason for editing"

    Or are you talking about something else?
     
  18. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Mick

    I think the edit button only stays on your own posts, i.e. you can edit your own posts, but not anyone else's.

    Was that what you meant?

    Love,
     
  19. micksuehilton

    micksuehilton Registered User

    Feb 22, 2007
    6
    East Sussex
    #19 micksuehilton, Feb 26, 2007
    Last edited: Feb 26, 2007
    edit query

    Hi, Thanks to y0u all, I think I understand it now.

    I might get the hang of this computer lark some day, its all a bit of a mystery!!

    Cheers Mick.:confused:
     

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