1. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Hi mum got a letter today from mental health team they have arranged a visit for Monday this will be her first after being diagnosed on 8 th dec 2014 ! It's a good job I was at mums when the letter came or I probably wouldn't have seen the letter it would have disappeared !!!! (wondering why the consultant took all my details ) I've managed to swop my shift at work so that I can be there
    I imagine they are going to prescribe mum Meds can anyone give me any pointers as to what questions to ask whilst I have them at mums ,will they be able to help with the sun downing and hallucinations I'm thinking once this visit is over we will be in the hands of her GP and I don't have much faith in him ,when I've asked him to see mum about her trigeminal neuralgia he fobs me off telling me to get in touch her consultants at the hospital ( easier said than done ) and I think he will do the same with her AD in November he told me he didn't think mum had dementia!!! She scored 1out of 14 when the community mental health nurse came to visit
    I want to do my best by mum and need to make the most out of this visit so any suggestions would be greatly appreciated xx
     
  2. angecmc

    angecmc Registered User

    Dec 25, 2012
    2,108
    hertfordshire
    Hi, I would write down notes about the hallucinations how often and what she actually sees and also tell them about the sundowning especially if it makes her anxious or aggressive, sometimes medication can help to calm things down. If there are sleep problems, tell them about this, it is your chance to let them know how well or not your Mum is coping and for you to ask what help is available to assist your care, they may be able to tell you about day care or Crossroads, if you haven't been referred to social services they maybe able to do this, its good for both your Mum and whoever is caring for her to have an assessment by social services, because this can give you access to help such as respite or carers to come in and help. Ask about admiral nurse availability in the area or if your mum will be placed under the care of a cpn (community psychiatric nurse). If your Mums GP is not very helpful, perhaps you could consider seeing a different one in the practise. Hope the meeting goes well and good luck xx

    Ange
     
  3. Mannie

    Mannie Registered User

    Mar 13, 2014
    116
    Bracknell area

    Regarding the Gp he does sound unhelpful and you need to get a helpful Gp they will be pivotal to getting u access to the services and meds that you need. What I would do is when u make an appointment, if it is a group practice ,just try another doctor. You can do this without formally changing Gp any time you want , just try different ones until you find a good one and then ask for them for each appointment.

    You can also now she has diagnosis ask your GP and hospital/ consultant for post to be redirected to you, to see if they will do this without an LPA for health and welfare. If u have the Lpa then it makes it easier.

    Regarding the visit I would write down some notes about your observations and concerns concerns so that u can hand that to the cpn to avoid u having to discuss it in front of your mum.
    Also don't feel bad about "showing them to the door" where u can also have a discreet conversation, they are used to it.

    In my experience the cpn does not hand u back to the GP unless your mum is stable and even then will typically have a visit every year.

    Make sure u get the phone, emergency hotline and email of the cpn since for difficult behaviour you can call them to ask for help.

    You need to get your GP to refer your mum to social services they will help regarding what services she can access like home care, day care, volunteer services

    Who does what....

    Cpn - help with dementia behavior and dementia meds and training for you
    GP - help with other health issues and referrals
    Soc services do a needs assessment then help to access dementia services and advise which services are appropriate for your mum ,which she may have to pay for ,they also do financial assessment for deciding that. Can also assess your needs as a carer.
     
  4. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Thanks ange and mannie I've put together a list of all the things you both mentioned it will be a great help . I felt like I'd just been left in limbo in dec yes your mum has dementia we will send you a letter to take her for an ECG which arrived the middle of jan took mum the next day for ECG then I heard nothing rang and the consultant had gone away !!!! Felt like we'd just been left to muddle through I don't even think my mum knows she has AD ? After mum had done the test she scored 31 out of the hundred questions the consultant said he was very concerned I asked him if he thought mum had dementia and he said yes ,poor mum said "what happens now do you put me away " it's never been mentioned since think she will have forgotten (that's another thing I'm worried about because I'm sure it will be mentioned on mon)don't know how mum will react.I knew nothing about AD everything I've learnt about it is from this web site and from all the people on talking point don't know where I'd be without you Thankyou
    . Annie xx
     
  5. Mannie

    Mannie Registered User

    Mar 13, 2014
    116
    Bracknell area
    A further tip if you have not done already.....I got an a4 notebook and I use it to make notes.....for example if something of concern happens I just make a short note with the date. Also details of when I started to use products like bed pressure pad alarm. Also I religiously record every meeting or call eg doctor , social services, CPN, occupational therapist, district nurse, hospital consultants, Home Care provider. This will help you so much in the future because your head will be so full of details. You will need these details for the next meeting with whoever it is like GP etc. you can also have all the contact numbers and emails ready on the inside front page. I have both parents with AD . A good book I am reading is : dementia the one-stop guide by June andrews it is new ,and she was interviewed recently in radio 4.....
     
  6. Anniebell

    Anniebell Registered User

    Jan 31, 2015
    115
    Thanks mannie that's a great tip will get one tomorrow and the book I'm usually super organised but this AD has floored me don't know if I'm coming or going some days !! sOrry to hear you have both parents with AD how do you cope ? That's the thing with talking point you think your living a nightmare until you meet someone on here whose living a worse one thanks for making the time to reply and help I'm so grateful take care Annie x
     

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