1. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Well mum's appointment with the consultant yesterday could not have gone worse. I don' think I've ever been so annoyed - then again I say that every time. At one point I felt that blood should have been coming out of my ears.

    Point 1. We get in there and she asks mum how she is and mum says fine. Dad agrees with this. She asks if there's been any changes/incidents since she last saw her and dad says no.
    Well, let's see - she's become very aggressive again, she stormed into my house and threw her handbag at the guy trying to do paperwork for my conservatory, she's tried to get out of the car when it's still moving, we've found her walking home from town because she lost the car and she's locked herself out of the house

    I told the consultant this and dad said "oh, I forgot about that". Who wouldn't?

    Then we come to the driving - she asks mum if she thinks she's safe to drive and of course mum says yes. Dad backs her up on this and says she's perfectly safe (despite the fact that her best friend won't get in with her anymore because she nearly crashed into another car). Well, that's good enough for the consultant who says she's fine to drive and she won't inform the DVLA yet because "technically" we still don't have a diagnosis. Even once we have a diagnosis the DVLA will send us a form to fill in and as long as they're happy with those responses she can still drive and as dad will help mum fill the form in she'll be driving forever!

    That was basically the end of the discussion as we go to Walton next week and she wants to see what they have to say before she does anything else.

    I then told her that after doing research I believed that mum had FLD and she said it couldn't be because that has no impact on speech.

    Now correct me if I'm wrong but my research so far leads me to think that this is one of the first and biggest indications of FLD.

    I just can't believe it - I was so feeling so hopeful at the beginning of the week and now it's all gone to pot again.

    I'm so sick of it all - I've been battling for two and a half years and I'm still getting no where - I don't even have the full support of dad who backs down as soon as mum is in the room.

    I don't want to give up on it but I'm so tired of fighting and arguing and if everyone else wants to stay in denial why shouldn't I?
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,738
    Kent
    I`m so sorry Kate, you are trying so hard to do the right thing and you are being so supportive too.

    Is it time to have a heart to heart with your father? I know it might be difficult to get him to yourself, but you need to ask him what he wants from you.

    If you and your father want to move along two different routes, perhaps you might have to let him, until he realizes he needs help.

    But as far as the driving is concerned, I would write to the consultant and explain the true situation, because that issue could be dangerous. I think your father thinks he is being kind to your mother and wouldn`t want to do anything to hurt her. But you see the bigger picture and should be listened to.

    Love xx
     
  3. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Kate

    I am so sorry it didnt turn out a good appointment. I think the advice Sylvia has given about talking to your dad is the only road you can go down. Having said that, I can understand he doesnt want to hurt mum by 'spilling the beans' on her behaviour, I am sure he would think he was being disloyal, however misguided this is.

    It might be helpful to keep a diary of how mum is on a day to day basis, as best you can, keep it going for a month or so, then I would be inclined to send it to the Consultant.

    To be fair to her, she can only go on the information she is given at the time, and if dad is glossing over some of the problems, she is not getting the complete picture. In your covering letter I would reiterate your concerns about mums ability to drive her car, if mum is putting herself and other road users at risk, then she is under an obligation to inform the DVLA.

    If mum deteriorates further, there is nothing stopping you requesting an early appointment. Incidentally, I would also copy any correspondence to the Consultant to mum’s GP as it is general practice for the Consultant to write to the GP following patients consultations, so it would be useful for the GP to have any correspondence related to mums health on file.

    Love
    Cate
     
  4. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Kate,

    I agree with Cate, the driving is something that you need to pursue.

    The human brain is fantastic - it only lets through information that it is able to take; and I suspect that at present your dad's brain is just not able to accept the future. Yours however is.

    I adopted the approach of drip feeding dad information - making leaflets and books available; highlighting important sections, so that he didnt have to read the whole thing - just the pertinent bits. I tried to speak to dovtors and as you are attend appointments; tried to find out what help was available and make dad aware of it.

    But our parents are adults, and their wishes and feelings must be listened to and respected. At times we believe that we know what is best for them, and we are probably right - but we cannot make decisions for them. I know that I have spent my life doing the 'wrong' thing in my parents eyes - all I have asked of them is that they stick by me and love and respect me - and more than once they have been there to pick up the pieces. I think that is what we as adults have to be there to do for them too.

    Just my opinion.

    Love Helen
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,437
    Hi Kate

    Well what can one say? It doesn't really instill you with confidence does it? I wouldn't say that language difficulties are the primary presentation of FLD (or FTD) but it definitely occurs

    "Language problems are less common but do occur in the early stages of FTD before other thought processes, such as memory, are affected. Patients may experience difficulty speaking or finding the correct word when naming objects. Difficulties reading and writing then develop. As the disease progresses, less and less language is used, until the patient becomes virtually mute. Other patients may have a severe problem recalling words and understanding word meaning, but continue to have otherwise normal speech."

    The good (???) news is that even if it is FLD, there is no treatment available for it, so even with an accurate diagnosis it wouldn't really affect her treatment.

    More worrisome I would find is that, even if this consultant is wonderful in other respects, it's going to be difficult to build a relationship with someone who you think has dropped the ball. I don't know how you get over that: I think once you've lost confidence in a doctor (or any other professional) you're unlikely to get it back. On the other hand, I have seen reports on TP of similar problems occurring early on, but the relationship improving dramatically over the long haul. I imagine, that as in any area, some doctors are better at diagnosis than long-term care and vice-versa. Of course they should be good at both, but that's not how life works sometimes.

    At the risk of sounding like Little Miss Echo, I would reiterate what Sylvia and Cate have said. You may have to employ some tough love with your father: if he is determined to take one path and you can't follow him along it, you're going to have to step back, I think. Easy to say of course, not so easy to do. In other circumstances I would encourage your father to keep a diary of incidents of concern, but it may be he simply can't do that (emotionally) at the moment, so it may be down to you, and forward it to the consultant before your next meeting. Perhaps if you do it for him (keep the diary) he might be willing to forward it in his name: it allows you both to air your concerns to the consultant without appearing to be disloyal in front of your mother (which sounds like it is a big issue for him).

    The driving issue: well I know you've been posting to Dee's thread in the main support forum so I don't think there's any other suggestions that haven't been made there. The whole thing horrifies me, and makes me so grateful that my mother gave up driving when she did (in her 70's) so this was never an issue for us.

    How's your daughter doing?

    Love
     
  6. Kate P

    Kate P Registered User

    Jul 6, 2007
    565
    Merseyside
    Thanks for the support everyone.

    I think I do need to take a step back to some extent - he is an adult and I can't make him do what I think he should - it's just difficult when you can see that things aren't going as they should - sounds a bit arrogant but you know what I mean.

    The ironic thing in all this is that if dad was the one who was ill mum would have been the first one demanding answers and taking the car off him.

    Jennifer - Milly's doing quite well thank you. Still waiting for the brain scan (07th November - they should make a smilie for impending doom!:) ) and they seem quite sure that it is a neurological problem as all other tests coming back clear so far.

    While they were so convinced it was neurological I asked the consultant what he thought it was and he said it was too early to say for sure and besides he didn't want to worry me!:eek:

    What could worry you more than that???
     
  7. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,437
    Kate: I've had some dealing with neurologists and they're the same both sides of the pond: absolutely non-committal until they get the results with all their little graphs in front of them. It does seem to be one of the medical fields that is more evidence based, if you see what I mean. I have a slight inkling about what you're going through: my son was bedridden for a year due to a fairly rare neurological condition although he was older than your daughter is. The only virtue of that time is that now, when he's driving me nuts (he's 18), I can look back and think: well we got through that, he's healthy now, we can get through this (if he doesn't drive me to an early grave) :D

    Love
     
  8. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    HI Kate

    (((Hugs)))

    It can be so difficult. We had a battle with Mum's GP gettting a diagnosis. I would definitely write a letter to her and I agree with the others that your Dad may have given different responses if your Mum had not been in the room. You may find that the Consultant gives different responses in this situation too and has to be gentle to ensure that your Mum trusts her.

    You may also find that the COnsultant will speak to you by telephone where you can voice your concerns, particularly once you have written a letter detailing the problems experienced.

    Good Luck with your daughters scan. At least it is more straightforward when dealing with you kids!:rolleyes: Well most times!!! However I think that it is more terrifying!

    Love

    Mameeskye
     
  9. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    Hi Kate,

    I'm really shocked tha the consultant didn;t speak to your and your dad on your own. Both the local consultant and the main one at Salford arranged fior John to leave the room so that I could give information without upsetting him.

    I hope that your Daughters scan goes well, thinking of you.
     
  10. bel

    bel Registered User

    Apr 26, 2006
    757
    coventry
    speach fld

    i am with you bob has fld speach is a big problem
    driving --i had to report driving my self to dvla
    as specialist sat on fence
    gp said she thought he should not drive
    it was an awful time so i feel for you even now bob thinks he can drive
    bless you bel x
     

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