Lack of stimulation or deterioration ?

Discussion in 'ARCHIVE FORUM: Support discussions' started by allylee, Feb 6, 2008.

  1. allylee

    allylee Registered User

    Feb 28, 2005
    180
    west mids
    Hi everyone, well it seems like an age since I last posted on here, still reading all yours and the responses regularly though.

    The issue of loss of communication and speech has been discussed in various posts but your comments here would be appreciated.

    Mum has always been an introvert, very quiet and shy, early demetia exaccerbated that beacuse she became terrified of making a fool of herself by saying something inappropriate.

    Four years into diagnosis and settled into a care home for almost a year, she now barely speaks at all, though her speech is still clear when she does say something.

    I had accepted that this was deterioration, but its also playing on my mind that she isnt getting any mental stimulation not even conversation,because she isnt loud/funny/amusing/social like some of her fellow residents.

    The care staff rarely speak to mum when Im there, Im concerned that that could be the case when Im not.Ive never seen the activity co ordinator sitting with mum either, but can I honestly blame them when I rattle away and barely ever get a response?
    Id love to hear your thoughts.

    Ally xx
     
  2. 117katie

    117katie Guest

    I WISH I KNEW THE ANSWER TO .... that which ....

    ... WAS MY PROBLEM TOO.

    I am a firmly committed member of the "if you don't use it - you lose it" Brigade.

    No matter how hard I tried to introduce for my Introvert from Birth (But wind her up, and let her go, and she was there, strutting her stuff, and leading the pack.... because all she needed was A GENTLE INTRODUCTION) to Day Centres, for contact and stimulation, but then the Social Worker, who knew better than I did, of course, a person who has been in my life ALL OF MY LIFE, but in the life of the SW for only the last 3 weeks and then months, SW would always say "She is not able to cope with it/them/that/whichever" so then I realised, eventually, that I had to retreat and just introduce my own form of language stimulation. Which went along the lines of UMPTEEN phone calls from each and every person who could call at any undetermined time; followed by a radio that could be used at random BUT which required the assistance of staff, before and after she moved into sheltered housing, and then into hospital, and then into care home, so slowly the radio failed. We then introduced a few other ploys along the line, all of which worked fine for as long as we were present. But, as you so rightly say, we never ever witnessed any one person from the sheltered housing or the hospital or the care home even making one tiny attempt to engage in conversation . They were mostly stuck behind their desks, eating their apples and crisps, and not actually engaging with the people in their care.

    Social Services will always know better, which I now know is utter rubbish. If you are a very very very lucky person, then Social Services will come up trumps for you, as will the care home, and each and every department you come into contact with. But it still depends on where you live, and on the abilities of those people you come into contact with to make the effort.

    I do appreciate that for those of you engaged in the 24/7 caring process, that my experience may be different from your own, but I am slowly beginning to understand that the 24/7 caring-from-a-distance is equally valid, equally difficult, equally important in the caring for our loved ones with dementia. Over the last years, I have met a fair few people who have said "oh, yes, but you are not there 24 hours a day, 7 days a week", and I have been left saying "no, I may not be, but it doesn't mean that my BRAIN is not there 24 hours a day, 7 days a week" dealing with each and every aspect of my loved one with dementia. I am beginning to believe that it may actually be MORE DIFFICULT to deal from a distance, no matter whether that distance is 30, 50, 100, 200 miles or even further.

    Just a thought for everyone to ponder.

    Most of them cannot even begin to 'know better' those people we have known for years and years and years.

    Sorry, for being and feeling totally pessimistic about chances, but that is the way our CARE OF THE OLDER PERSON has become.

    I read in the papers today of an initiative in Scotland which at the moment gives me the hope to think that I may not have wasted the last years of my life trying to achieve an improvement in the care of the older person. Shall be watching it, and following it up, but watch this space, I may well soon call on a few people to help me out on this one.

    Katie

    PS. If - by the time I have posted this - someone else has come along and solved your problem of stimulation for you, then all I can say is that I did not wish to intrude on that positive communication which may have come your way. Good on yer!
     
  3. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    #3 sue38, Feb 6, 2008
    Last edited: Feb 6, 2008
    Hi Ally,

    Have you spoken to the activities co-ordinator? There must be others methods of stimulation other than talking, simple games or puzzles? The fact that other residents are more lively is no excuse for your mother being ignored. The activities co-ordinator is not there for her own entertainment after all but to do his/her job.

    Sorry I have no other suggestions, but I agree that a lack of stimulation can only result in a decline of anybody, whether they have dementia or not.
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    68,733
    Kent
    Hello Ally.

    Have you asked to see your mother`s notes? Usually you should be able to tell from reading her notes how she has been during the times you aren`t there.

    You should be able to read about activities she has taken part in and any conversations staff have had with her. That is if the notes are properly kept.

    The notes might also give an indication whether or not your mother is considered introvert.

    I`ve had different experiences with care home staff. Some don`t like to intrude when you visit, to give you some quiet time in private. Some are only too keen to impress you with their familiarity and knowledge of your relative. And others have a natural manner which doesn`t seek to impress but gives you some idea of their attitude to care.

    I would ask to see your mother`s notes Ally, to see what you can learn from them

    Love xx
     
  5. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Ally, I don't know whether it's deterioration or not, and you're the only person who's able to tell, unless your mum has had a mmse test recently.

    But people do deteriorate with this disease, as we all know only too well. And with that deterioration comes a withdrawal into themselves. To be honest, it's quite rare for people in care homes to communicate with each other, though it's lovely when they do make new friends.

    The staff most likely don't talk to your mum while you are there because a) they don't want to interrupt your visit, and b) the fact that you are there means thay can give attention to other patients. Have you seen them talking to the others? If so, they may well talk to your mum when you are not there.

    As for the activities co-ordinator, it may be the same thing, she's not around when you are. Could you ask to talk to him/her, ask her (politely) what help she gives your mum, and ask if she could give her a one-to-one session, say once a week? The AC in John's home used to do that with him, but he's now too far gone even to respond to that. But the AC always comes and talks to me when she is in the unit.

    I don't know (obviously) if your mum's home is a good or bad one, but if you are worried, please talk to the AC and the manager to see if your mum can receive more stimulation.

    But bear in mind that it might be the disease to blame, rather than the home.

    Good luck,
     
  6. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Ally,

    As everyone's progression is different it is a hard one to judge. All I can suggest is discussing it with the staff and even better your mum's key carer (if she has one). During normal daily care and personal care they will most likely need to use verbal communication (they do at all homes I've seen) and they should have a clear idea about her responsiveness. You could ask how she reacts to music or other activities, if she joins in or is encouraged to join in.

    In my experience the people involved in the day to day care get to know a person very well. However, as distant carers we are the ones who tend to notice these more worrying changes or trends over time - we also have focus as our concerns are the wellbeing of the one individual we love.

    I'd be more concerned if everyone in the home was quite - I've seen homes like this too - quite disturbing. Do you notice the staff stimulating other residents when you are visiting? Does the home have regular activities? Sorry lots of questions when you are looking for answers :eek:

    Kind Regards
    Craig
     
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #7 Margarita, Feb 7, 2008
    Last edited: Feb 7, 2008

    Sounds like my mother , she barely talk , only if prompt , day center helps , only in the way that her only thoughts are of someone she likes they .

    On days she does not go if I don' prompt her she does not talk, she seem not to
    remember the past , My daughter says its because she has nothing to think about, but then my mother at the stage she can not retain any information, so she can't remember what happen yesterday, so I can't bring up a conversation of what she said or done at day center yesterday , because she look at me with a blank face .

    A trigger word is " you like Tom " she smile . other them that,

    that leave us both together in are hear now, me wondering how can I communicate with my mother , so the radio go on , because music seem to simulate my mother

    Why not take some music when you visit her , that may
    simulate a smile , a memory of a song she may of like from the past, if your lucky she may sing along with you .
     

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