Cavalry on the way, thanks to TP

Discussion in 'ARCHIVE FORUM: Support discussions' started by sue38, Jan 25, 2008.

  1. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    As some of you know my Dad was diagnosed with dementia just over 12 months ago. At first we went with a private consultant (long story) and because of this were told that we would not get the help of the mental health team : CPN and so on.

    We then changed to the NHS consultant and expected an army of help, but after the first appointment with the consultant, nothing. Just an appointment for 10 months time in July.

    Since then we have had a few traumas and requested an urgent appointment and were given one for November. This was then put back to December, then to the 3rd January and then just before Christmas this appointment was cancelled until May!

    On Tuesday we had another incident, nothing too serious, just challenging behaviour but my Mum is getting to the end of her tether and we went to see the GP who said she would see what she could do. We didn't hold out much hope but lo and behold she rang on Wednesday to say we had an appointment for today!

    Following advice on TP I wrote the consultant a letter describing the challenging behaviour so that I wouldn't have to say this in front of my Dad. I also asked in the letter why we hadn't had an assessment (something I would have known nothing about save for TP).

    I didn't have chance to get the letter to the consultant before the appointment and hoped to ask the receptionist to pass it to him before we went in. We arrived 10 minutes before the appointment and time and were shown straight through!! Last time we waited up to an hour and the time before that we were told that the appointment had been cancelled because we were under the private consultant and sent away! I stayed behind and demanded an explanation and was eventually seen 2 hours later when I was told we weren't entitled to any help.

    The appointment today didn't start too well as it wasn't the consultant we had seen last time which was a bit of a surprise but understandable as it was an urgent appointment. We handed him the letter which he put on one side. He started with asking my Dad a few questions some of which he could answer and some he couldn't. The doctor then turned to me and in hushed tones told me my Dad had dementia (no!), that he would only deteriorate (never!) and that in all probability he would end up in a home!:eek:

    At this point I said I didn't think he should speak like that in front of my Dad. "Why? Can he understand me?" :eek::eek::eek:

    I asked that he read the letter, which he then did, carefully, making notes as he did so. At the end of it he said "Right I'm arranging a CPN an OT to carry out the assessment...". He also suggested a sedative that we can give my Dad as and when he gets agitated and which he assured us will calm him down in about half an hour (I had put in the letter that we were reluctant for my Dad to be prescribed a permanent sedative). I think the drug was Olanzapine but as I was just getting back up off the floor at this point I'm not sure. He asked if we were agreeable? Well, we'll give it a go. He asked if he could add my letter to my Dad's notes.

    At the end he asked that I stay behind and asked me again if I was happy with what he was proposing. He also asked if we had arranged Power of Attorney for my Dad.;)

    As I came out my Dad was waiting and he said "I hope you told him he was useless" :D

    My Dad has gone out tonight to his golf club's annual dinner (boys-only do) where hopefully he will be looked after.

    So thank you to TP for all your help and guidance. I just hope the support materialises.
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    Well done Sue :)
  3. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    It is good to hear from you. Many will find it incredible, but not unusual, that a professional in the Mental Health Team understands so little of this disease - and how to handle it.

    I have not suffered anything quite as bad (yet) but I am sure others will post with their experiences.

    I hope your Dad enjoys his evening out - long may he continue to do so.

    Best wishes Jan
  4. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Well done Sue!

    Was it the charge of the light brigade?:)
  5. Cliff

    Cliff Registered User

    Jun 29, 2007
    North Wales
    Bless you Sue,

    Don't want to say more about professionals.

    May I send you love
  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Well done Sue.

    I find it incredible that doctors dealing with dementia still adopt the `does he take sugar` attitude without first establishing just what level of communication is possible. I really thought we`d moved on from that.

    Anyway I hope the assessment goes well and your mother does get the help she needs.

    Love xx
  7. Nell

    Nell Registered User

    Aug 9, 2005
    Well done Sue!!

    Altho' your specialist was dopey (to say the least!) at least he tried to help. It isn't the same as knowing what he is doing, but absolutely the worst type of professionals are those who don't have a clue but insist they know what to do. :eek:
    At least this one has set things in motion - let us be grateful for small mercies!!

    Every best wish that you are finally going to get some genuine help with your Dad. Hope he had a great night out!! :)
  8. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Well done Sue,
    At least something positive is in action with your Dad.
    What is really annoying is that these people are suppose to be the professionals.
    Best wishes
    p.s. Perhaps the powers that be should read messages on T.P.they MAY learn something.
  9. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    To be fair to the doctor my Dad will very often say "I beg your pardon?" which we have realised doesn't mean that he hasn't heard you but that he hasn't quite grasped what you've said. Any one else might assume he's deaf, which he isn't.

    But it is frustrating when doctors start with the assumption that you're unintelligent and don't know what you're talking about. Once we had shown that we did have a brain and did know what we were dealing with his attitude changed and he was very helpful and respectful.

    Next time I write a letter I'll put a link to TP on it (where the real experts are!! ;))
  10. Doreen99

    Doreen99 Registered User

    Jan 12, 2008
    glad to hear the good news, after all the hoops you've had to jump through, it's nice to know you're finally getting somewhere.

    It never ceases to amaze me how the professionals/experts who are supposed to be there to help, are either not available or not able to do anything or incompetent!
  11. Scoop

    Scoop Registered User

    Nov 20, 2006
    Seems i have been lucky so far with the professionals I have come across, My parents local Dr's surgery were useless really, insisting on sepaking to Dad before they would give an appointment ( Nothing wrong I'm fine was always his response! ) Once I insisted on an appointment they were seen within an hour ( i had spoken to the mental unit and they had told me my rights and what to say;) ) - Mum was stunned, she had been trying for months to get dad in.

    Since under the care of the centre it's been very good - they also moved near us and the local surgery has been brilliant too, we are now I think and the next cross roads as My mum is struggling to cope with the evenings and nighttimes ( even on Olanzapine) so they'll get tested again now!

    Good luck with it, the olanzapine has been our lifelie for the past few months - doesn't seem towork as well now though :(

  12. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    Well the cavalry hasn't turned up yet and we are getting more desperate.

    Yesterday my Dad was extremely agitated and we had to get the GP to him. I had to leave work in the afternoon to go and try and calm him down. He was mostly agitated about not having a car and wanting to go back to (Ashton) the part of Wigan where he grew up. He had packed a bag and was going.

    I had decided not to argue with him and use diversionary tactics, so I agreed with him:-
    1. Yes it was terrible that he didn't have a car (little white lie)
    2. Yes we are doing all we can to get his licence back (big black lie)
    3. Perhaps tomorrow we would take him to Ashton.

    He calmed down in the evening until later when my Mum stared to hang up the shirts he'd got out and he bacame angry again.

    This morning he seemed fine until my Mum was leaving for work and said 'I'll see you at lunchtime' 'oh, no I'll be gone by then'.

    She stayed at home and rang me He came on the extension. I said to him 'Don't go until I get there'. 'No I'm off now so I won't see you again'.:eek: and despite protestations he set off walking down the road.

    Meanwhile I'm ringing the GP to see if the prescription from Friday has come through - no. On to the mental health team who asked who was his case worker? HE DOESN'T HAVE ONE!!! They then said they would see what was happening and would ring me back. I asked when he was likely to ring me back 'I'LL DO IT NOW!' OK, only asking because my Dad is walking down the road at the moment to which he replied 'Well the prescription won't stop that!' How I managed not to scream 'Have you got a £*%!?*$ better idea?' I do not know. :mad:

    Needless to say they didn't ring back but when I rang again he confirmed that the letter was being typed as we spoke and would be faxed through to the surgery.

    My Mum followed my Dad in the car and eventually persuaded him to get in. After calling briefly at the office she took him to Ashton and they called in somewhere he knows. He wanted my mum to leave him there but eventually came back home.

    I have been a wreck all day, bursting in to tears in front of one client who knew my Dad and asked how he was these days. Well he's walking back to where he lived as a child as we speak! He had no idea about the dementia and was really sorry. People being rude and unhelpful I can cope with (there's some bank clerk at RBS who probably wishes she hadn't got up this morning after ringing me with a stupid question) but anyone being kind and sympathetic and I lose it.

    The prescription did arrive but the GP is not sure whether lorezapan is any different to the valium we already have and was unable to speak with the doctor who prescribed it, so we are carrying on with the valium for tonight. Wondering if there's any going spare for me, that poor woman at the RBS probably thinks I need a muzzle not valium.
  13. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Sue, what an awful day! I'm not surprised you lost it with the bank clerk, perhaps she'll be more careful next time!:eek:

    I hope the medication works, and your mum has a peaceful night.

  14. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Sue.

    You`ve really had an awful time and I can relate to all of it.

    Can I ask what the area of Ashton is like? If your mother had left your father there, or pretended to leave him there, where would he have gone and what would he have done?

    And as far as his clothes are concerned, would a time have come when he would have come out of this phase and agreed that your mother could put his clothes away.

    If I`m asking too much, I apologize, but when Dhiren went off, apart from when he went off in Manchester, I let him go, as I `knew` he`d come to no harm.
    Also when he would see his clothes out the next day, he couldn`t understand why they were there and was quite happy for me to put them away.
  15. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    #15 sue38, Feb 6, 2008
    Last edited: Feb 6, 2008

    Well the CPN came to see my Dad today to carry out the assessment. My Dad was very confused this morning, was insisting on wearing only one sock etc. My mum was not well yesterday and so they were neither at their best, which all in all was not a bad thing. My sister and I stayed away partly as we were busy at work.

    My Dad of course was on his best behaviour when the nurse arrived, polite, sociable, compliant, relevant... why can't he be like this all the time?

    Despite this it seems we are to be offered day care a couple of days a week and maybe a carer to come and help during the day.

    From the hell of last week when it looked as though the time had come for a care home, things are looking a little brighter today and I hope my Dad will be at home for some time to come. Keeping my fingers (and everything else) tightly crossed.

    Thanks again to everyone for their support.

    P.S. The nurse said 'I'm sorry the consultant [who was a bit thick at the last appointment] has had to leave' :confused:
  16. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    That should give your mother a bit of space Sue. And full marks to the CPN who saw through your father`s `best behaviour`.
  17. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    That's good news, Sue. Let's hope your dad takes to the day centre, your mum will appreciate the peace.

  18. sue38

    sue38 Registered User

    Mar 6, 2007
    Wigan, Lancs
    I know this is crazy, but at 77 years old my Mum still works full time (sort of). She gets to work shortly after 9, goes home for lunch at 12.15ish and then works afternoons from about 2 until 4.30, Monday to Friday.

    She doesn't do it for the money, but because she loves her job, her clients love her, and if she and my Dad were at home together all day they would end up killing each other! :rolleyes: The routine suits my Dad. On Bank Holidays he is terrible!

    Whilst she is at work my Dad is home alone, apart from the cleaner who comes 2 mornings a week (he stays out of her way) and the gardener who also comes 2 mornings a week, oh and a mad staffordshire bull terrier who is the love of my Dad's life.

    I asked him last week if he would like my Mum at home more and he looked at me as if I had lost the plot. But we do feel that he lacks stimulation during the day and, as he has demonstrated today, he can thrive in a sociable setting.
  19. Jane1

    Jane1 Registered User

    Mar 3, 2007
    Oh Sue, in the midst of all your desperation with your Dad, you still have your sense of humour! I do understand your frustrations and i think it's wonderful you are there for your mum and dad. However frustrating and angry he might make you at times, at others you just have to smile. The one sock business made me smile. Dad still dresses himself and most days he has 2-3 shirts on, 2 pairs of trousers and 2-3 pairs of socks!! In the early days this might have concerned me but if he's happy then it's fine. The staff do try but if dad says 'NO' then they don't worry either. With all the big things we're coping with this is a little worry! :) Keep plodding on Sue x

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