We Are The Experts....Are'nt We!

Discussion in 'ARCHIVE FORUM: Support discussions' started by NeilJR, Jul 25, 2005.

  1. NeilJR

    NeilJR Registered User

    Jul 6, 2005
    Holt in Norfolk
    I would just like to air a view which i would imagine lots of us have at some stage experienced........'we' as carers of people with AD get to know through our own experiences of what the disease can do to the person and have our own ways of learning to deal with it on a day to day basis and we have techniques and strategies to look after the sufferer as best we can and without causing them extra distress ie by reassuring them etc....why is it that the so called experts ie Community Mental Health Nurses/Doctors seem unable to do the same? If they only listened and learned we would get the correct support. We as carers dont get listened to or if we do they certainly dont take it on board.Has anyone else experienced this or am i being unfair?
    Thanks for reading this post.
    Neil from Norfolk
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Neil

    we may or not be experts for the case of our own family member and their condition and needs; we won't necessarily be so for other people who are diagnosed with the same condition.

    The doctors are experts in the general - things that apply to most patients, and the more common things that afflict patients, and probably the more outrageous things that afflict a few. But they are rarely experts with one person.

    Thats why assessments are done, and these take 1-2 weeks in residential circumstances. It takes them that long to understand what the norms of the condition are for each patient, and they then scratch their heads and try and come up with a medication and care regime that suits each person, on an individual level.

    Problem is the patients condition changes from week to week, so they may get them on a good time, or not.

    Only the 24/7 carers really know how they are, and how they vary from day to day.

    It IS difficult.

    They don't seem to listen because 1) they may believe what they have been told by colleagues 2) they don't usually have time to test whether what we say is correct, 3) we may get emotional, etc

    They do listen if we present a written record that shows we are serious, or if we are firm enough with them.
  3. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Depends on the doctor also. My mother is in an LTC facility and I switched her from the specialist who was affiliated with the home because I found him arrogant and uncommunicative. He was annoyed with me because I had a med order from him discontinued. Had he simply said what he wanted to do with the med, I could have told him we had tried that 2 years earlier & it was a total disaster. But nooooo, he never bothered to phone or even have the staff tell me. So of course the med change was another complete fiasco.

    Sorry, I'm getting off track here. What I'm trying to say is that sometimes you have to change doctors to find someone who will listen. We're lucky now but my blood still boils when I think of that little tinpot dictator.
  4. rummy

    rummy Registered User

    Jul 15, 2005
    WE have been to two different neurologist to get my Mom evalutated. So frustrating. Both of their approaches were bad. One downplayed her condition saying "oh but she is so happy" and the other made it out as eminately terminal. I also had a time getting her GP to address her problems before she was finally sent to the neurologist and an MRI. For sure, you have to take their health well being into your hands because the doctors either don't have time or don't want to get personally involved. We have to become educated and proactive in their care (which isn't easy for me because I'm rather mild mannered)
  5. As an 'outsider' and future heathcare professional, I'd like to 'chip in' here.

    I'm always in favour for listening to the person with AD first, and getting their insight to how they are - even if difficult to communicate/apparently 'lacking insight' that is most important to me - to try to understand their experiences.

    I also value the opinions and observations of the carers, although I feel that at times, what they say might be down to embarrassment factor/'denial' issues, i.e. not accepting diagnosis - a few examples based on what I mean...

    "There's nothing wrong with his memory - he knew he'd been to the shops yesterday..."

    "Mum's never like that at home... it must be this place"

    "He never swears... and as to aggressive? I've NEVER seen that... why're you telling me that he's been aggressive?"

    This to me was always difficult when I worked on a Dementia Assessment Unit - a carer/relative apologising for behaviour changes in their loved one.

    I can speak from experience here as to what I felt about anyone with Dementia issues I was involved in the care of:

    I don't think of them as bad people, nor do I trivialise their distress/beliefs/opinions.

    I generally believe the relative who says "He's never been violent" - I don't think that this has been 'the norm' for the person with dementia, and feel that an apology is not necessary.

    Carers too know a heck of a lot as to meds./MMSE assessments etc. etc... I can only 'observe' stuff, and receive reports 2nd hand at times - they experience what is going on regularly, which I appreciate the input regarding.

    Sorry if I'm rambling here, but I just want to give some of my insight into this.

    Plus anyone who cares for someone with dementia 24/7, or the person living with it 24/7 will be more of an expert than I ever will - I work on 'shifts' and therefore do not have the experience that other people living with this have.

    I don't disregard services, and feel the need and value for proper care, assessment, treatment etc. (if I didn't I'd be in the wrong job).

    But just so that you know - some of us DO listen... I learn more from people with AD and Dementia/the carers than I ever could from Professionals.

    I got a very kind reply from Christine Bryden re: her book "Dancing With Dementia" (I emailed her) - I'm not going into what I wrote, but to say the fact that she acknowledged my comments means more to me than an exam mark.

    For me who has not experienced dementia, that book is wonderful - it tells you hw she feels/copes etc. and I feel that it can put one 'in the other persons shoes' for a time, and gives a rare insight into the experience of someone with Dementia.

    I will promote that book to anyone interested - it helps one appreciate more what a person is 'going through' and is invaluable.

    Here ends this rather lengthy post - hope it makes sense folks.

    All the best.

  6. rummy

    rummy Registered User

    Jul 15, 2005
    Hi Neil,
    It was good to get your post and your perspective. I know AD is difficult to diagnose and that there probably isn't any good way to tell the person that has it or their loved ones.
    When we took my Mom in to be evaluated, my Dad was in denial and soft peddled her symptoms and I'm the one that laid it all out for the doctor. Probably the first doctor was being very delicate and the second was more matter of fact.
    I acknowledge that they don't have an easy task. (That is probably why we were told to bring more than one person for their different observations!)
    It sounds like you are really trying to reach beyond the diagnosis and treat the whole person. That is rather rare and I would say that you are involved in your "calling" more than it just being a job. What a blessing to your patients and their families.
    Best wishes to you and I look forward to reading more of you insights.

    Rummy (Debbie)
  7. Many thanks for those words - very much appreciated.

    As to my job - here's what's happening currently, to give you some idea...

    As part of my training, I am currently working with a Community Psychosis service, and one day per week I work with the Older Person's Community Mental Health Team.

    In October, I spend six months on a 'Functional' ward for the elderly... that's an over 65's service for people with Depression/Schizophrenia etc. - I am really looking forward to that, as I requested to go on there quite a while back, and the folk at University accepted the request.

    Re: Dementia care? Well, that's an area of interest (obviously lol, or I wouldn't be posting here) - once qualified, I'll have to see what's available...

    Hopefully it will be working with an Older Person's service - I'm not specifically relating Dementia to Old Age here, yet the ward I was on previously (Dementia Assessment Unit) was mainly Older People... the youngest lady I remember being on there was in her 50s - the rest being 65+

    I do try and see the 'whole person' - it's what Nursing is geared to nowadays I'm glad to say - we're taught about that at University, so hopefully we future professionals will remember that...

    That's something I've always done though... I see people as having a history, a life, stories to tell, good and bad things to share... sorry if this sounds a little o.t.t. but I'm a bit of a chatterbox, and love a good conversation - always have... and communication is THE most important part of any relationship (always ensuring that listening is important/more important than having your say).

    I'll leave it at that for now - I don't want to 'change the subject' of this thread - just to give you a wee bit more info about myself.


  8. P.S. One more thing as Columbo would say...

    Back to the subject in question.

    I asked in another thread about meds. and got LOADS of invaluable information (including that posted by rummy).

    Folk took the time and trouble to share their experiences re: medication, and side effects and gave me an insight into how it affects people and their lives...

    Sounds like the work of experts to me - I find it invaluable.

    So thanks to all!


  9. rummy

    rummy Registered User

    Jul 15, 2005
    I wish there were more professionals with your attitude, especially in the US ! Perhaps they are out there and we just haven't run across them yet.

    I am reading "The Validation Breakthrough" by Naomi Feil. You might find it very interesting and fitting to your interest. I am only a little into and have already changed how I talk and listen to my Mom and have seen her eyes go from dull to bright again. I am anxious to finish it and put it to practice.

    PS, I found the book on half.com at a much reduced price.

  10. I'll make a not of that one thanks - I need to buy one when I next go into town that's excellent: "Mental Health Care for Elderly People", and covers a wide scope of issues... if you want more details on it let me know.

    The shock of it though... it's £36.99!


    That's $64.91


    Expensive, but a really excellent book... my current copy is borrowed from the library, and I've had the damned thing for a month! :D

    One I think is a really good book is "Alzheimer's For Dummies"... it breaks down all the jargon, is clear and concise and presented in a style that you can just 'dip into' - a VERY useful book... some of the info. in there is U.S. specific (i.e. benefits available etc.) yet the majority of it is universal... anyone looking for a copy should check out eBay first... I got mine from there really cheaply (about £7 including postage).

    More info on this here...
    Click Here To See A Description Of The Book



    P.S. Sorry for going off topic again here folks!
  11. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Yes we are!

    I agree with you completely - why oh why do they not listen to us. Only those with the same experiences can actually understand what we are talking about!!

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