I suspect my father may be struggling with dementia...

Discussion in 'Memory concerns and seeking a diagnosis' started by AztecCamera87, Mar 12, 2019.

  1. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    42
    Dad's appointment has been cancelled. I only found out as I called up memory clinic to confirm the time of it. They told me they called up dad last week and he confirmed that it was ok.

    Of course this was never passed on, I asked for letters to be sent to me about the rearrangement, they said they would try and send me a copy.

    I felt let like crying. I have been using up a lot of my time off allowance from work and arranging my life around him. But nobody really cares.
     
  2. Moggymad

    Moggymad Registered User

    May 12, 2017
    319
    Female
    :( @AztecCamera87 don't you just feel like banging your head on a brick wall. It used to happen to me even with mums diagnosis of Alzheimer's & a letter of consent on file. It was doc receptionists who would ring mum. I complained to the doctor when we saw her. There must be a place on the computer screen to say ring ..... for appointments as the MHN used to get it right & ring me.
     
  3. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    42
    I'm pretty much at my witts end right now. I'm tired all the time, I'm tired of being accused of hiding things being told I want him to stave, I'm tired of not really having much of a life anymore, I'm tired of constantly changing my plans and getting time off from work at late notice. I'm tired my dad behaves so well with anyone else who isn't me or my sister. Dad wouldn't have even remembered who called him a few moments after the call. Why call up the person having the appointment at the memory clinic to tell them it's been cancelled?

    As I said in a previous post, what difference will a diagnosis mean? We will still be in the same situation, my dad will still be completley oblivious of us running around after him and I doubt there will be any further support. I've been pretty much called a liar by medical professionals I have tried contacting Age UK and other organisations, and am just told there aren't any appointments and they would be back in contact. At least without the appointment, I can go to the drop in at my local carers information centre they hold them on Tuesday mornings (again, these things only ever seem to happen at times when I would be working). But I guess I should use the time productively.
     
  4. TNJJ

    TNJJ Registered User

    May 7, 2019
    38
    They always seem to do that.Dad has VD and tells them to send a letter.He cannot use a phone and cannot always use the remote.I look after dad 4days a week and try also to look after mum in her house.My dad sounds similar to yours.Very happy to let me do the running around with appointments etc.I have been lucky with doctors etc as they all ring me and let me know what is going on.4days a week with him is enough.I set those boundaries otherwise he would have me 24/7.Dad has carers in other times and to them he is lovely.Could you do carers?SS would do an assessment
     
  5. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    42
    My dad has carers visiting him 4 tmes a day, they tend to only be around for 15 minutes at a time, and the quality of them varies. He also has district nurses visiting him to give him his insulin injections 3 times a day (although I do any top up injections if needed at night and mornings).
     
  6. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    42
    The memory clinic called, I think it may have been a doctor, they did introduce themselves, but lack of sleep is causing my memory to have small lapses now. They apologised for the appointment being cancelled in the manner it was and have said they will send copies of any communications to me via email.

    I did manage to explain various symptoms and the rather rapid decline (asking where mum/cat/etc is, the incontinence, verbal aggression and personality changes, inability to remember things from 5 minutes previous, the confused yet paranoid theories, etc etc). They did ask about UTIs, B12 etc, I explained that he had been in and out of hospital and they counted these out just a few weeks previous. They said it sounded like from the symptoms that "it may be quite advanced", but obviously he would need to be assessed before any diagnosis can be given. They also said, that dad can refuse to take part in the assessment, including when he arrives to the assessment. No date given, but I was given assurances that he would be treated as a priority for rebooking... how long we will be waiting, I'm unsure, but I felt my concerns were taken into account.
     
  7. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    364
    Glad someone phoned back @AztecCamera87 , and I hope you get an appointment soon. Mum refused to visit the Memory Clinic on several occasions, so be prepared for your dad to be tricky. It's best not to tell him what is happening if you can. Mind you the one time we got mum into the clinic she still refused to see the nurse. I think if the nurse had taken time to just chat to mum in general she could have persuaded her, but she backed off saying mum had the right to refuse.
    It wasn't till mum had a melt down in the doctor's surgery that things moved on. The surgery got a consultant from the memory clinic to turn up on her door step unannounced and he diagnosed probable vascular dementia. By that time the family were already organising moving mum into care so we never followed up on that.
    Anyway they are now aware of your concerns which can only be a good thing.
     
  8. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    42
    I'm sorry you had such a tough time getting your mum a diagnosis, I reckon we could also have a tough time like you. We have a couple of things which may make dad less likely to refuse on the day:
    - on the whole he is always very polite and willing on the outside when medical professionals are involved.
    - he does seem to have sympathy when I say, I've taken to day off work to do something for him.
    - he's so adamant that he has no problem, that I reckon he would look forward to being able to say "I told you so".

    Although, I guess he may not be his old self. When we were teens-20s, he was still quite competitive, so would always be happy when he defeated us in a board game (but, he refused to play things anymore a four years back) or the occasional moment he got lucky in a game of FIFA (mind you he hasn't played one since 2001)
     
  9. Starting on a journey

    Jul 9, 2019
    2
    After a couple of false starts I finally got mum to attend the memory clinic. The first thing they do is tell them they don't have to stay. Surprisingly she stayed.....it was a very draining couple of hours, she found the patient history difficult and I was asked to take over ....then there was the test and I was quite proud of how she managed to get to the end.

    Unfortunately she had refused to attend the follow up appointment (a MRI was already on file from last autumn).After discussion with the nurse it was agreed that I would attend without her as she is too upset. The GP thinks it's ok too. Not sure how much I will tell her, depends what they tell me. I don't think she wants to know.
     
  10. AztecCamera87

    AztecCamera87 Registered User

    Mar 12, 2019
    42
    I made a note in the district nurse's book the other evening, that dad had his insulin post dinner, as they had put pre-dinner, but the carers had given him dinner a couple hours previously. The same DN turned up this morning and said, oh, why has some written this here. So I explained, the situation and told her if she is concerned he hasn't eaten to check the carers book. She told me she had given him dinner (from the fridge) that evening as she was concerned he wouldn't be fed, as "he had been in town all day" (he hadn't), I'm surprised she took him at face value and didn't think to look in the carers book.

    Today my dad went out for a walk to the papershop, I don't mind him doing this, as long as he has his keys and and wallet etc. After leaving the house, the next door neighbour came to the door with him. He was concerned, and said he wasn't sure if I knew dad had gone out, as he has left the house during the week without keys and also with leaving the front door wide open on another occasion. Dad seemed oblivious to it all. I explained that I can't stop dad going out, and I was happy he had everything he needed on this occasion.

    An hour passed, he still wasn't home. I went off looking for him, couldn't find him. Phone call from my sister explained that the carer had found him further up the road and dad couldn't remember where his house was. 10 minuted later I spoke to dad, he denied it ever happened and I was just exaggerating it all, he knew where he was, but just wanted to sit on a wall further up the road.
     

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