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This is so much harder than I thought !

Discussion in 'Recently diagnosed and early stages of dementia' started by Joolie58, Jul 12, 2017.

  1. Joolie58

    Joolie58 Registered User

    Jul 12, 2017
    13
    For quite a while last year my husband really struggled with feelings of confusion and anxiety . Eventually his GP referred him for a CT scan and full range of blood tests . When the results came back she said the CT scan had shown up shrinkage in the Cerebellum which can be attributed to heavy use of Alcohol (my husband doesn't drink alcohol ) the GP then made the referral to our local Memory Clinic . A worker came out and did a memory test and then we waited until February of this year for him to be seen by the Consultant . He was diagnosed with Mild Cognitive Impairment and mixed Anxiety and Depressive Disorder .But he was asked to have another CT scan because he wanted to ascertain if the level of problems was actually Alzheimer's , he was then seen again in May again the consultant said he couldn't say it was full blown Dementia he wanted George to have his depression treatment increased but to date his GP has not received the recommendations that he said he was going to make . He also wanted my husband to have an MRI but he suffers badly from claustrophobia and couldn't have the scan . We are again 'waiting ' for the next appointment in August I'm dreading the consultant say we will just monitor it for the next six months !! I've been off work with stress and trying to care for my husband I had hoped we would spend some quality time together however he sleeps endlessly (he would sleep 24hours if I didn't try to wake him ) I struggle to get him to get out of bed every day . He is confused and often doesn't know where he is or who any of the people in the photos are , he has horrendous nightmares and has seen people in the house that are not there but to him they are very real ! I'm at my whits end I'm finding it so much harder than I thought , I already feel isolated and hadn't expected to feel like this yet . I struggle with the thought that I am not enough to make my husband to want to get up and 'live' . My husband gets very short tempered with me if I try to get him to do anything . All I want is the consultant to say right we are going to try some medication that may help to slow the progression down but he has not offered this life line I should have said my husband is only 54 . I just don't know what to do anymore ....
     
  2. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    441
    #2 Oh Knickers, Jul 12, 2017
    Last edited: Jul 12, 2017
    Hi Joolie,

    This is sounding very hard for you at the moment. I am sorry. Not only is there a lack of urgency on the diagnosis but it does sound as though your husband's illness has moved on rather swiftly.

    Please keep posting here to offload or for the guidance that will arrive.

    I am going to suggest some actions for you. Firstly, apply for AA (Attendance Allowance). Explain that you are having to get your husband up and any other actions such as 'he is unable to make a meal so I make the meal'. AA is an important benefit to get as it is the threshold for SS (Social Services) to take this seriously. It is all online.

    Once AA is in place you can then go on to claim Council Tax Disregard. You go onto the local council website and aim for Council Tax, Council Tax Disregard, Mental Impairment Disregard. Horrid name. You need AA in place and a letter from the GP or Consultant with the diagnosis. You need to print out a form to take to either the GP to sign or the original consultant. Check they put the right date of diagnosis as the Council TaxDisregard will be backdated.

    I would phone the GP as soon as you can regarding your husband's nightmares and hallucinations. That must be a worry for you and for him and he does need help. Your husband is also very young for dementia. However, you do need a diagnosis and help.

    What I would suggest as a matter of urgency is to talk with the following agencies. I have found them founts of knowledge and pools of sanity. It sounds as though you are needing both of these at the moment. They can also help you with filling in the forms as the situation sounds as though it has got overwhelming for you. Not surprising as it does sound as though it is moving fast.

    Also, talk over with them POA (Power of Attorney) for Health and Welfare and Finance. The CAB can help you with that for a smallish fee.

    For Alzheimers and AGE UK scroll down the screen and put in your postcode. The local contact will then appear. They will have a lot of local knowledge and will guide you. Good places to offload too.

    Agencies
    CAB

    Alzheimer's Society
    https://www.alzheimers.org.uk/?gcli...TQ-K6Un8wGPGENEz7CqOaC-JGlTP87nB3MaAqBX8P8HAQ

    Age UK
    http://www.ageuk.org.uk/

    Admiral Nurses
    https://www.dementiauk.org/get-supp...rljKp0VSvkcg2FIcg5LAOJZ10yp-HKqmOUaAmfp8P8HAQ

    Age UK also have a befriending service where they match the interests of the PWD (Person with Dementia) to one of their trained befrienders. It can be a rip-roaring success. There is a fee.

    Sorry that this has been such a swift gallop through. Sometimes once you feel you can control something and action is happening it makes the situation less frightening.

    Very best of luck.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    4,331
    South coast
    Hello Julie and welcome to Talking Point.

    I think that the time when you know there is something wrong, but it doesnt seem to show up on tests is the hardest. To make a diagnosis of dementia you either need it to show up on a scan, or you need to show progression. Because the CT scan didnt show dementia (and an MRI isnt possible) they now need to see whether it is progressing - thats why its taking time. A diagnosis of MCI often proceeds a diagnosis of dementia. Despite its name there is often nothing mild about it at all! It just means that so far they havent seen progression. Has your husband had any neuropsychological testing? Its a verbal and pen/paper testing, so shouldnt cause problems and is very good at picking up which areas of the brain are not functioning well.

    I would make sure that your GP knows about what he is like - especially the hallucinations. He may get referred back to the memory clinic or to the Community Psychiatric Team (who are used to these sort of symptoms) as there may be medication that can help.

    By the way - Attendance Allowance is for people receiving state pension. At 56 your husband needs to go for ESA and PIP (if he hasnt got them already)
     
  4. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    441
    Thanks, Canary, for the putting right. Can Joolie also go for Council Tax Disregard?
     
  5. Beate

    Beate Registered User

    May 21, 2014
    7,729
    London
    Well, for the SMI council tax disregard you need to prove a severe mental impairment so a proper dementia diagnosis might be needed before the GP would sign the council tax form off, but I really don't think that this is joolie's biggest problem right now.

    Joolie, can you chase the increase in the anxiety medication up? I think it's imperative that this is being dealt with, irrespective of any dementia diagnosis.
     
  6. Joolie58

    Joolie58 Registered User

    Jul 12, 2017
    13
    Thank you

    Thank you for your response .. Did you mean Carers Allowance ? I can't currently apply for it because we are waiting for my Husbands PIPS assessment , which he needs to be receiving for me to be able to claim ; again this seems to be taking forever to be sorted . I feel this maybe because I had a deadline to submit the form and so I had to submit the form without the medical evidence. I had asked the consultant 3months ago for a letter with the details of my husbands diagnosis for this purpose , he assured me that he would make sure that this was sent out ,that was at the beginning of May and we still haven't received it ! Will the DOWP contact him directly do you know ? My husband goes for his face to face assessment next week (any tips and advice on the assessment and PIPS process would be gratefully received ) every delay that we come up against has a direct effect on the situation at home ! Even waiting for the PIPS with bated breath because if He doesn't get that I can't claim carers allowance or any other benefits and would therefore have to continue working for financial reasons and my stress levels will be through the roof worrying about him in the house on his own ! As it is I will have to go back and work two months notice when we find out if he has won his PIPS claim and face the uncertainty then of knowing whether I would get my benefits because I can't claim the until I am unemployed ! I have made an appointment for the GP as you suggested to discuss everything further but the GPS usual response is that she has to wait and see what the consultant is advising ! .. do you see the pattern of vicious circles happening here ?! I will contact some of the other suggestions you made to see if I can find anything else out . Once again thank you for taking the time to respond
     
  7. canary

    canary Registered User

    Feb 25, 2014
    4,331
    South coast
    Oh jools, Im so sorry you are going through this now. I hated the process of claiming for benefits. I would chase up the doctor who said he would send a letter - things like that often get left at the bottom of the pile - by phoning up and speaking to his secretary.

    If you get refused PIP then go somewhere like Citizens Advice or Age UK (they will help people over 55 yrs of age) and get them to help you appeal the case. I had to appeal OHs application for ESA (sickness benefit that you get if you are unable to work and can be got as well as PIP) and Citizens Advice were really helpful. Yes, once you have got PIP you can claim for Carers Allowance.
     
  8. danonwheels

    danonwheels Registered User

    Might be worth getting the phone number for the consultant's secretary and chasing it up via them. They are generally very helpful, if a little distracted at times.

    Technically they can, but experience shows this is unlikely as the DWP tend to take the easy way out and do as little as possible.
     
  9. mancmum

    mancmum Registered User

    Feb 6, 2012
    338
    Leave from employment to care for adult

    This is a summary of leave you ought to be entitled to. Beware of giving up your job too early if you may be able to take unpaid leave of absence. Things might change quickly and carers too often lose pension rights. Sorry to be bureacratic at a time of stress but I signed away my employment rights too quickly and I know I am not the first person to have done this.

    http://www.nhs.uk/Conditions/social...for-carers-flexible-working-unpaid-leave.aspx
     
  10. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    441
    #10 Oh Knickers, Jul 14, 2017
    Last edited: Jul 14, 2017
    Another good site to go on is Turn2Us. It will help you see what benefits you may be entitled to and what the amount these benefits add up to. All helps in the decision making process. I would echo what Mancmum says about not giving up work early. Hugely stressful though your situation is.

    Start rattling those cages. Because the GPs and Consultants you are dealing with are also under stress does not mean you should be left hanging when things are moving so swiftly. They will actually understand. Polite but firm is the mix.
     
  11. Joolie58

    Joolie58 Registered User

    Jul 12, 2017
    13


    Thank you
     
  12. Joolie58

    Joolie58 Registered User

    Jul 12, 2017
    13
    Thank you
     
  13. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    441
    You are welcome.:)
     
  14. Joolie58

    Joolie58 Registered User

    Jul 12, 2017
    13
    Help !!

    Having already explained to you all my fears and worry , I am now 14 hours away from my husbands face to face assessment ! HOWEVER. As suggested yesterday I managed to get hold of the consultant psychiatrists secretary and she emailed me a copy of the last two reports (the first one was carried out by a different Consultant ) the first report from the beginning of the year is ok but the most recent report which I was going to submit at the assessment tomorrow is a totally inaccurate report of everything that we discussed at the appointment e.g .. it says my husband goes out for walks on his own ; he has not left the house on his own for over a year because at that time he got on a bus to come home and it took him somewhere else he didn't know where he was and got very distressed and was helped by a member of the public and secondly because he has worn discs in his spine and bursitis in both hips he can't walk without being in extreme discomfort now . It stated that he has no Physical ailments (worn discs , bursitis) , it states he has no thoughts of suicide or self harm ; he told the consultant in that appointment that he had been thinking about killing himself .. I remember it clearly as I was stunned because I had no idea he felt like that ... and it goes on with further mistakes .. I am total panic I gave not been able to get hold of him or his secretary today and i don't know what to do tomorrow do I take the report ? In which case I know he will not get his PIPS payment , we will loose his DLA. And I won't be able to apply for Carers to give up work to care for him . Or ?? He has taken the report badly and I have not been able to get him out of bed today ! This illness is like living in a nightmare I can't cope with much more .
     
  15. Aisling

    Aisling Registered User

    Dec 5, 2015
    1,807
    Ireland

    All I can do is send you huge support.

    Aisling xxxx
     
  16. Joolie58

    Joolie58 Registered User

    Jul 12, 2017
    13
    Thank you , it means a lot
     
  17. Oh Knickers

    Oh Knickers Registered User

    Nov 19, 2016
    441
    #17 Oh Knickers, Jul 18, 2017
    Last edited: Jul 18, 2017
    Joolie,

    I think I would be very cross having seen what the second consultant had written. Are you seeing them again? Honestly, as though you haven't got enough on your plate!

    Firstly, get all the documentation, should you have it, regarding the disks and bursitis. At least get the dates down. Should you be seeing the consultant again - God help him - ask him to explain. I'd also double check the patient name and ask for details to be double checked just in case someone else's notes have been misfiled.

    Have your notes, should you have time type them up, of the comments your husband made and the issues in walking et etc. As much as you can remember in chronological order including your poor husband (and poor you) saying he was contemplating suicide. On a vaguely positive side, the consultant may just have confused your husband with another patient. Otherwise, he is incompetent.

    If you feel up to it get PALS involved. There may also be an Alzheimer Soc contact in hospital. They may be able to be an advocate for you. Otherwise, I would be writing a firm but direct letter to the most senior person in the hospital requesting an explanation. No wonder you have not been getting any action.

    Also insist on receiving a copy of any notes send to your GP. How come you have been bypassed?

    Anything you write needs to be copied to your GP.

    Should you not get any joy I would suggest writing to Jeremy Hunt, Minister for Health. I am appalled.:mad:

    I am sure other calmer and more knowledgeable heads will post as well.
     
  18. canary

    canary Registered User

    Feb 25, 2014
    4,331
    South coast
    As the face to face assessment is already booked I would submit the first assessment and just leave the inaccurate one at home. Tell them that things have progressed since that report. If you dont get it, put in for an appeal and go and see someone like Citizens Advice for help.
     
  19. Joolie58

    Joolie58 Registered User

    Jul 12, 2017
    13
    Thank you for your response

    Thank you for your reply you helped me by confirming it wasn't just me over reacting ! I have put in a complaint today via PALS . . And yes we are due to see the same consultant on the 16th August 17 ! I'm hoping before then I will have had some further response from PALS They have already let me know that they are going to investigate the matter . .
     
  20. Joolie58

    Joolie58 Registered User

    Jul 12, 2017
    13
    I take my hat off !

    Having just had his face to face assessment , which was an ordeal from start to finish . I take my hat off to all of you other wives , partners, carers out there that have either been through this process or are going through it now and are managing to keep your heads above water . Up until now I felt like I was paddling at 100 miles an hour under water to keep my own head above water. But since the assessment I'm not doing that either ! I had prepared myself (or I thought I had ) for assessment day and I was ready to fully support my husband . However what I wasn't ready for was two things .. first was the fact that the questions were incessant and twisted one way and another to the point that the interpretation of what we were actually trying to tell them was in tatters !and secondly as my husbands support for HIS . assessment . I HAD NOT EXPECTED TO be personally accused and held to count for what is happening in our family home !!! I was asked if I really left him in the family home on his own all day whilst I went to work in the state that he was presenting he should have someone there ; because my husband sleeps endlessly he very rarely eats or drinks whilst I am out of the house so theassessorthen asked what my working hours are before launching into another attach towards me of didn't I realize how dangerous it is that he doesn't eat or drink ,leaving him like that I was putting him at risk of kidney failure .; I also was criticized because he wasn't on medication for dementia , why hadn't I insisted and got him other referrals . We both came out of there feeling vulnerable and on my part distraught about the way I was failing my husband . . I am also 99.9% certain because of the way the questions were manipulated that we have also failed with our claim for PIPS , SO THE WAITING GOES ON ! And then summoning up the energy to appeal when your ,know what they're just going to hit you with more of the same !!!!
     

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