How hard can it be to get a diagnosis and help?

Discussion in 'Memory concerns and seeking a diagnosis' started by Moleskin, Sep 7, 2015.

  1. Moleskin

    Moleskin Registered User

    Jul 22, 2015
    6
    #1 Moleskin, Sep 7, 2015
    Last edited: Sep 7, 2015
    Hello, I am feeling pretty desperate and am hoping someone may be able to offer some pointers.
    My mum (aged 82) at Christmas started 'seeing people' in the trees outside her house. My dad died in May and she's gone further down hill since then - so she cooks food for him still, insists he's in the house but not talking to her (and she packs a bag to leave), imagines he's having an affair, that he's in the car and won't come out, says that he's sat in a chair but with no torso or legs or head. In addition she insists her father and mother visit the house. She lives alone since Dad;s death and I can't get any help from social services who insist that as she can wash, cook and dress herself they can offer no assistance.
    GP appointments have led to a referal to a memory clinic - she's now had memory tests, blood tests, urine tests, ecg tests and a brain scan and an appointment with a psychatrist. The psychatrist has offered no diagnosis (though she tells us that the brain scan indicated some frontal lobe changes) - apparently they have to see some deterioration before they can diagnoise - which seems insane to me as the symptoms she has are surely indicative of things not being right.
    The community mental health team tell me they are keeping an eye - which seems to consist of a nurse visiting on an ad hoc basis to see how she is (every 3 weeks or so). She's been prescribed anti depressants and risperidone both of which my mother has (at her own volution) stopped taking as they don't appear to make any difference. She's been advised to not drive. She has a hernia that requires surgery. She has lost over two stone in weight and gags when attempting to eat and suffers from permanent indigestion. She is very weak and her hands tremble. She's suffered a number of falls too.
    Is it usual for so many symptoms to be present and still not obtain a diagnosis? I live 30 miles away from her and am a single parent working part-time and I am exhausted and at my wits end trying to support her. I think she's extemely ill and vulnerable - none of the health professionals involved seem to agree with me.
     
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    Hi Moleskin, welcome to TP
    You could read the comments made on Charlotte's thread (link below) many of the same things apply.
    The thing is that what would getting a diagnosis achieve, sadly nothing changes, as long as the SS are of the opinion she's coping and the mental health team think the situation is acceptable then nothing will happen with or without a diagnosis.
    There is no roll on the drums and "Thunderbirds are go" and help arrives, they just carry on doing nothing until it get's so bad they intervene or there is a crisis.
    I hope that before you do get a diagnosis that you get Power of Attorney for her health and finances as if you get a diagnosis it may be too late to get a POA.
    My mother had some form of dementia lived with my wife and me for 3 years before she died, my wife was diagnosed with AZ 5 years ago and no one has ever lifted a finger to help me other than 2 visits from a community nurse for my mum just before she died, other than that nothing.
    I'm sure all the professionals can see the situation for what it is, to them potentially a huge financial burden and a load of admin so they'll not be in a rush to do anything.
    Have you considered getting her into care and selling the house to pay for it (I'm taking it she is a home owner) if she has over £14k she'll have to pay for some of her care, over £24k and she has to pay the lot, sometimes it's better to manage the situation without SS involvement.
    Given all that you've said it seems pretty shameful than none of the authorities have seen fit to intervene it sounds to me like she's well past the point of help being offered.
    K

    http://forum.alzheimers.org.uk/show...-advice-regarding-responsibility-of-diagnosis
     
  3. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    #3 count2ten, Sep 7, 2015
    Last edited: Sep 7, 2015
    Hello Moleskin, welcome to TP, I know that others will be offering loads of help and advice, but for the meantime I can offer my thoughts from my own experiences and I find it unbelievable that social services are saying there is "nothing to see here". They need to hear words like frail vulnerable adult, risk, safeguarding etc, and then get them along to do their job properly which is to undertake a community care assessment and to provide services to for any needs identified - just because your mum can wash and dress herself doesn't mean she is safe living on her own without some support, and if she has been hallucinating since Christmas then the mental health team should be far more proactive and giving you the support you both need to ensure her safety and wellbeing and your own peace of mind as her carer.

    You are also entitled to a carer's assessment, which they have a duty to provide, and under the new Care Act have to provide services for things like respite, which can include having a personal assistant to help your mum get out into the community, or socialise at a club or day centre, or just sit with her and read the paper or watch the tv. It should be provided to support you to care for your mum, to help maintain her independence, especially if you don;t live on the doorstep. You could also apply for a direct payment from social services so that you can organise any care yourself, although this is not always as easy as it sounds.

    I know it's exhausting and frustrating trying to co-ordinate everything, (which is what social services and the NHS should be doing , but that's another story!) , but if you can arrange to attend any assessments and appointments at least you can get your views across and be able to follow up any decisions made or services offered.

    My mother had similar symptoms, it was such a shock when the hallucinations started, we did everything wrong trying to persuade her that everything was ok and there was nobody under the bed, no one was stealing her things, children weren't hiding in the bushes outside, my father wasn't living with another woman, even telling her that her parents were no longer with us - we had no idea how distressing it was for her to hear us "correcting" her all the time, and it was only when I started posting here that the advice came flooding in and we learned to live in her world and stopped trying to drag her back into ours. We didn't know at the time that the dementia was probably much further advanced than anyone thought. So then we learned to just agree, reassure and distract, which made her less frustrated and less anxious. When things got a bit more intense she was prescribed antipsychotics, but they didn;t agree with her , some of them made her worse I think, so we withdrew these and found ways to keep her reasonably steady and as independent for as long as we could in other ways.

    I wish I could have done more for her and with her, but realistically looking back I was physically and emotionally exhausted most of the time, your batteries run out and sometimes it can be counter productive trying to do it all - but that's where the services need to kick in and support you both. I know you will get lots of support and advice from others on here but I hope this is of some use in the meantime. Sending you best wishes and a big hug tonight xx
     
  4. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    Great post count2ten, but the reality is I was asked if I wanted an assessment on the last visit to the memory clinic, after they decided to give the tests on my wife a miss as she was becoming aggressive. I asked would it get me anything or do any good if I did get and assessment and the nurse just gently shook her head and mouthed no.
    New act or not that's the reality of the situation here in sunny Salford.
    That said I do think Moleskin should do as you say and kick on some doors using the trigger words as her mother is in a much worse condition than my wife and is living alone so it may do some good, I think it may depend where you live others on here get all kinds of things I've never been offered.
    K
     
  5. canary

    canary Registered User

    Feb 25, 2014
    10,779
    Female
    South coast
    My husband has been found to have frontal lobe dysfunction, but the doctors are saying that you have to show progression to make a diagnosis of dementia too. He has an appointment to go back after 6 months.
    If there is obvious progression you could request an earlier appointment.
     
  6. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    332
    rct
    Hi!

    I'm my dad's carer and have been for years.
    He's been diagnosed with dementia with lewybodies. That's symptoms of alzheimers and parkinsons

    I saw it for a long while..my mother wouldn't.
    It got to the stage that even my dad noticed and took himself to the gp.

    That's the last time it was straightforward. 5 yrs ago..

    There's was a humungous year wait to have basic test. I emailed the secretary everyother day until they were fed up.
    Following his house visit by the cpn..It was 9mnths to see a Dr if they felt it was needed.

    It was cruel to see people waiting..
    Our Dr at the hospital went on leave.
    Eventually a locum was brought in.
    My dad eventually saw him. He wouldn't commit to anything...He was very nice but airing on side of caution. No actual diagnosis..no flag on your notes or your record that should also make the register of the national dementia register..

    My dad deteriorated and we were waiting a long wait. We were brought to see the Dr and sidelined to nurse. She treated us appallingly.

    I went above her head and made my feelings known.
    It was almost inhumain to watch things progress and no one do anything.

    I took my own steps..and got a second opinion in a different place.
    Then miraculously out of the woodwork my dad had an appointment with the Dr at out hospital. A diagnosis at last!

    Then the real journey begins...

    Ups downs going round in circles. Fighting for help that the policies say should be available to those that need it.

    If you can get help take it..If you have siblings..tell them when you want them to help not the other way around.

    Always remember you matter too.
    Join groups with people going through the same. The untold understanding is important. You all understand how you all feel..and we re in a choir and yes we still laugh.
    It's probably the only time we do now.

    I always take each day as it comes..
    But having read all the fact sheets now what's ahead. Believe you me that helps..
    It doesn't prevent it happening but you don't get such a shock when things progresses because you are aware it's ahead..

    Best wishes
     
  7. Moleskin

    Moleskin Registered User

    Jul 22, 2015
    6
    Thank you all for taking the time and trouble to reply to my post. I think that the mental health team must have read it too as they informed mum yesterday they had diagnosed a mixed dementia. At least I know what I am up against now.
     
  8. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,776
    Salford
    A diagnosis of "mixed AZ" is about as helpful as my wife's diagnosis of "atypical AZ" it's totally none specific, if (and I do mean if) there's any big difference between the different types, some say there are some not, then mixed (or atypical) is about as much use as the proverbial chocolate teapot.
    I actually believe it doesn't matter what type it is as everyone's different and you have to deal with the person not the diagnosis.
    Expect the unexpected is the best advice I have to offer, "mixed" means you might get a pick'n'mix version, but at least you now know what it is and that's a good thing:)
    K
     
  9. count2ten

    count2ten Registered User

    Dec 13, 2013
    186
    #9 count2ten, Sep 10, 2015
    Last edited: Sep 10, 2015
    Hi Moleskin, my mum was diagnosed with mixed dementia, but I don;t think there was any real clear diagnosis, it seemed to depend on which doctor was involved at any given time- the psychiatrist said it could be mixed but the hospital said it was vascular and therefore no point in offering any anti-dementia drugs although I know of cases where people with VaD are given drugs to help with memory so again it just seems a very selective thing. They can give something for the hallucinations - also, has your mum had her eyesight checked lately? My mother was also diagnosed with wet macular degeneration, which can cause all sorts of visual disturbances, again a lot to do with the vascular problems, she used to see people moving in photos (we used to call them her Harry Potter moments), and other things moving about in the house or outside the window. This wasn't so bad when she had people around her and stopped completely once she moved into the CH - so we wondered if it was worse because she was living on her own . It's such an unpredictable disease, Kevinl is right to say expect the unexpected.

    Your mum will be entitled to Attendance Allowance - about £50 a week, or the higher rate around £85 a week if she needs help during the night as well, and this can mean someone checking on her - which can help pay towards some day care or befriender/sitter , while you're waiting for social services or mental health to get their acts together. There are usually lots of voluntary or private groups and clubs around that most of us don;t know anything about until something like this happens. Our local age UK had a lot of things going on - but the MH team should at least get a small care package sorted so that your mum gets her medication each day. This is a critical need which ensures a service will be provided, also things like eating and drinking, these are also critical needs (which means there is a risk to life if not met), so things like shopping and preparing meals can be considered a need that has to be met (they will look to family, friends and neighbours first to do this, so be prepared to say no - your own family has to come first in these circumstances. If social services or the MH services drag their heels, you can always phone the duty worker - there always has to be someone available every day to respond to any risks or changes (as well as an out of hours service evenings and weekends which will pass details on to the duty worker next day to be dealt with). Sorry for long post, but just want to offer benefit of my experiences if they can help at all. All the best xx
     
  10. Daughter-MHD

    Daughter-MHD Registered User

    Jul 20, 2015
    5
    www.mumhasdementia.com
    Dear Moleskin

    Almost everyone I know who has finally got a diagnosis has been frustrated by how long it took - it sounds as though things with your mum are complicated by her having a few other health issues (you mention indigestion and swallowing difficulties?) and I suspect that the dementia diagnosis only answers some of your questions. It is difficult to co-ordinate care if you live anywhere other than just down the road. I suggest that you try to arrange a visit to the GP with your mum (it doesn't need to be an urgent one so you may be able to book a double appointment - 20 mins - if you explain that there are several issues to discuss). Before the appointment write to the GP you are going to see and list your concerns, be concise. Do the same thing if you can get to a memory clinic appointment with your mum or any other consultation. It means you can get maximum benefit from the time there. I have written about this recently in my blog mumhasdementia.com and there is a letter outline regarding my mother's symptoms that I sent to the psychiatrist prior to her appointment. It may help to have a look at it. Can I just counter the general feeling in some of the replies here that social and health services are deliberately failing your mother. It is simply not the case that professionals identify those with dementia as being potentially expensive and therefore do not bother with them. The situation is that services are stretched WAY BEYOND capacity. All the people you will see are there because they want to help and they are often just as frustrated as you are by the constraints of the system. Good Luck - keep going x
     
  11. Chuggalug

    Chuggalug Registered User

    Mar 24, 2014
    8,007
    Norfolk
    Sadly, Moleskin, Kevinl's description fits what happened to hubby and I almost perfectly. The reasons Kevinl gave are exactly what I thought when I was going through it, alone, for six and a half years. But that's where I live. He's in full time care now, after a crisis (he broke his hip). The care he is under now has saved his overall health. He was in a pitiful state before. Now, he's as fit as a fiddle.

    It was the staff at my local hospital who pulled out all the stops, did the assessment for his care, and made a good decision for him. I still struggle these days, but that's with other issues which I will cope with, albeit, very slowly.

    Your Mum really needs sending for a full health check if she hasn't already had one. If she gets seen by a good doctor, and believe me, they are out there, then they can start documenting what they see when she's in front of them. That's what I asked the hospital staff to do. Start documenting what they were seeing, as, if it's in official black and white, it can no longer be ignored. I got heartily sick of being fobbed off, year after year. It doesn't happen now, and hubby is so much healthier; clean, and eats well and properly.

    Get her to a doctor, my love.
     

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