So what's the diagnosis now?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Amy, May 2, 2006.

  1. Amy

    Amy Registered User

    Jan 4, 2006
    Mum was forgetful 15 years ago.
    In 1998, eventually persuaded doctor to take us seriously, and then went privately to neurologist - after scan told multi infarcta dementia.
    Mum put on tablets to lower blood pressure and aspirin to thin blood. Has had one period on something else to making sundowning manageable. As she did not have AD we were told that no drugs would help.
    Since being in NH I looked at blood pressure readings (that they were having difficulty reading), and asked "There a bit low , aren't they?" GP now taken her off tablets (only because I asked the question). Dad now tells me that they have stopped the aspirin.
    I am lead to wonder what the hell the GP has been doing for the past few years?
    Does anyone in the medical services really care about people with dementia -
    no-one in authority has shown any interest in actively trying to improve the quality of my mum's life. Medication has only been changed at our instigation and suggestion, and what the hell do I know about it? We saw a psychiatrist once; he had lost mum's notes, turned up an hour late for the appointment, and then refused to let me in the room, saying that it could be mum (who had no idea of the day of the week) and one other. What ****!
    Now mum cannot communicate, is doubly incontinent, cannot feed herself, is on food supplements, is beginning to choke when eating, at times cannot weight bear and certainly cannot co-operate when moved, has to be turned three times a night to protect her skin, regularly gets UTI's - but is only deemed to warrant the middle band of nursing care.
    Right. Finished ranting.
  2. rummy

    rummy Registered User

    Jul 15, 2005
    Hi Amy,
    Wish there was something I could say to help except, rant away! I have run into so many doctors that just want to skirt the AD issue. I don't get it either. When my Mom was showing signs of memory problems I called their doctor before they were going for checkups to fill him in on the problem. Instead of being tactful and asking the pertinent questions, he told them I had called. They were furious with me, changed doctors and it was two more years before they finally went to the doctor with it. And that was only because my Mom looked at her husband one day and asked "who are you?" Too bad really, I think if she had gotten on meds earlier she wouldn't be so progressed now.
    We are somewhat at the mercy of the medical powers that be and parents that have the say so. But we can still Rant!
    Take care,
  3. susieb

    susieb Registered User

    Apr 16, 2006
    I think it may be worth applying again ' appealing on the care.
  4. zed

    zed Registered User

    Jul 25, 2005
    I totally sympathise. Many medical professionals seem to have a "you've got dementia, see you later" kind of attitude. It took us for than 2 years after we originally went to her GP to meet a doctor who was willing to keep her case open and monitor her. At one point about a year ago, we were being told by two different doctors that the other one was responsible for her, both saying they were discharging her as the other was responsible.... Neither of whom cared at all.

    Now we have a great neurologist who has changed her diagnosis from Pick's to Alzheimer's, and given her Aricept. Mum says her mind feels clearer now. If we'd just sat back and let the doctors discharge her, we'd be no where now. It is the people who shout like you and me who get somewhere, but it shouldn't be like that.
  5. susieb

    susieb Registered User

    Apr 16, 2006
    We didn't have to shout but it was initially difficult to get past one GP - as soon as another one was approached there was an immediate referral to a consultant who has monitored mum for years. But I agree it depends too much on who is involved rather than a reliable system.
  6. Amy

    Amy Registered User

    Jan 4, 2006
    Was a bit up tight last night as we had 3 month review today, went OK, still on middle band. At times you can't help but question if you have done the right thing; has my lack of knowledge made things worse for mum? But I shouldn't have to do the pushing, the GPs and others should have been wanting to do their best for my mum. Hasn't happened.
    It is too late for my mum now; it is just a case of how long is it going to take?
  7. calamityjane

    calamityjane Registered User

    Apr 13, 2006
    Amy i think a rant now and again is a good thing ,read your post with interest and although i dont post much as i am new here i learn so much from you all and feel for each and everyone one of you ,snippets from most posts relate to my mam and as she is in the early stages things that have happened with others already are either showing up now with my mother or could in the future and its not so frightening when you know this is regular behaviour with people suffering from dementia (i dont feel so alone ) your post tho about the Doctors i have experianced already our G P has sen my mother once when she was in a very paranod state although he was very nice to us and listerned he did nothing the psychiatrist who she has been under for 20 years is out of this world i cant speak highly enough of him when i phoned and spoke to his sectary earlier in the day about the paranod thoughts that i was over doseing her within half an hour he was on the phone to me ,he knew we had an appointment with her GP to pacify her and told me to get him to hurry up the memory clinic appointment i told him of the psychiatrist request but he took no notice just said oh he is arranging that .Thank God for good careing Doctors you are right Amy they can differ so much and i think a lot are uninterested when they know there patients have demenia but one out of two ant bad we still havnt got to the memory clinic mind .
  8. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    My mum is due for her 3 month review soon. When the initial assessment was done (or rather, determination) we weren't involved, as the 'powers that be' believed that my mum was local authority funded. After a lot of messing about we had a meeting with someone from the PCT who advised us that my mum was on the middle band, as your mum is. We were told that we would be advised when the 3 month review would take place and would be invited along. I was very sure at that time that I would be pressing for fully funded continuing NHS care. However, 3 months along the line, the spirit is willing and the flesh is weak :eek: I've read up on it so much and i truly believe in it, but I have no faith in a good outcome. Also, I have lots of other irons in the fire, including the complaint against my mum's previous 'don't care' home., which is now on hold as the CSCI manager is on sick leave!

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