1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. mark2160

    mark2160 Registered User

    Aug 19, 2015
    6
    Nottinghamshire
    Around 21 months ago after concerns about my 50 year old wife I took her to the GP’s. I was aware of Alzheimer’s as my poor Mother in Law died of the disease aged just 61.

    After carrying out the standard tests (I was quite shocked how poorly she did)
    The GP made an appointment at 'Memory Clinic'
    My Wife was very emotional and made it quite clear she was unwilling to go –
    “If I find out I've got what my Mother had I will kill myself"

    Around eight weeks ago I finished work after deciding her condition was at a stage where I was no longer confident in leaving my Wife on her own.
    To date my Wife has had no treatment for Dementia. She seems happy enough and is either in denial about her condition or is at a stage where she doesn’t realise that she has it.

    My rational is that although her memory and cognitive skill are in decline my Wife’s Dementia is still quite manageable and she appears to be relatively content.
    I make no secret of her condition to friends and family and I am under no illusion the journey we as a couple are going to go through and will need support at some stage in the future.
    I appreciate medication can help but worry about the side effects plus by seeking help the psychological impact on my Wife having to except she has Dementia.

    Your honest views on this matter would be appreciated.
     
  2. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    #2 piph, Aug 20, 2015
    Last edited: Aug 20, 2015
    IMHO, then as long you you are happy with the way things are, then why change it? Having a diagnosis will make no difference to the progression of the disease, and, as for the Memory Clinic - ours here is as much use as a chocolate teapot! :mad:

    The only plus I can see to having a diagnosis is that your wife will be 'in the system' when the time comes that she needs more care than you are able to give. The important thing is to keep her safe and happy, and it seems you are doing just fine. Any medication will probably only slow the progression down slightly, if at all. In my Mum's case, Donepizil doesn't seem to have made much difference, although, obviously, I don't know how much worse she would be by now if she hadn't taken it.

    Good luck
     
  3. 2jays

    2jays Registered User

    Jun 4, 2010
    11,594
    West Midlands
    The only benefit for a diagnosis is that LPA is done, but that should be done anyway....

    And council tax relief, Attendance Allowance could possibly be applied for and you are "in the system" mainly financial benefit.


    Sent from my iPhone using Talking Point
     
  4. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    You don't need to have a diagnosis for AA - my mum had it long before the dementia diagnosis due to her arthritis - you just have to prove there is a need. Age UK are brilliant at filling the forms in in such a way that all the right trigger phrases are used. Council tax relief came with the AA for Mum as far as I remember.
     
  5. Beate

    Beate Registered User

    May 21, 2014
    11,641
    Female
    London
    I disagree. I think it's important to get a proper diagnosis. Nothing says your wife needs to be made aware of that diagnosis, but if medication can be subscribed, it could slow the disease down for years. Attendance Allowance can be got without a diagnosis (though what medical reports will support the application?) but I don't see how council tax relief on the grounds of severe mental impairment can be signed off by a doctor without a diagnosis for that. Likewise, a "label" is better when dealing with social services, and support can be tailored to specific needs better.

    If you are worried how your wife will react to a memory clinic visit, you could ask them whether they would make a home visit and not say exactly where they are from to combat her anxiety. Not all Memory Clinics are useless, and their input can also help you access further support.
     
  6. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,061
    Toronto, Canada
    We never told my mother that she was diagnosed with Alzheimer's, as every time we tried she was in a state of extreme and vicious denial. But she did agree that her memory "wasn't what it used to be".

    Mum has been on AD drugs since and she's never been told exactly what they were for. I simply mentioned vitamins.

    I do feel it is important to get a diagnosis to get medications and also to get "in the system" as mentioned by other posters.
     
  7. kingybell

    kingybell Registered User

    Feb 3, 2015
    115
    It is really difficult to get a diagnosis but glad we did for my 56 yr mil.
    It made benefits easier to get and she was happy to go along to the tests but is oblivious of having dementia.

    It is tough when they are so young. Not sure what attendance allowance is as my mil is on ESA and PIP. She also gets a care component to spend however she wants and on who ever she wants.
    Age UK were rubbish for us and dismissed me by saying she was too young for their help.
    Alzheimer's association were fantastic and have given me lots of advice as have everyone on here.
     
  8. Owly

    Owly Registered User

    Jun 6, 2011
    538
    #8 Owly, Aug 20, 2015
    Last edited: Aug 22, 2015
    A number of dietary things may help slow down Alzheimer's disease. You can look up spices such as cinnamon, turmeric, and also coconut oil, as there are research findings that suggest they may be able to break down the amyloid plaques in the brain that are characteristic of Alzheimer's.

    http://www.greenmedinfo.com/blog/turmeric-produces-remarkable-recovery-alzheimers-patients

    Amyloid was found a few years ago to be antimicrobial, so dealing with 'microbes' in the body via eating anti-microbial foods/spices (eg garlic, many spices, tea tree essential oil, etc) may be one way of tackling the disease.

    Some articles suggest that the brain produces amyloid plaques as a response of the immune system to infection. If you can keep down the level of infective agents in the body, then the brain should produce less of the amyloid.

    That's my view anyway.
     
  9. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    2,482
    Radcliffe on Trent
    My mum got AA well before diagnosis, though she had been referred to the memory clnic. Her GP signed off her application for SMI council tax exemption after diagnosis 5 months later, but it was backdated to the date of referral.

    If it takes that long in your area to get an appointment, I would ask for a referral so that your wife is 'in the system'. If when the date cones around you feel it's not the right thing to go ahead, you can always postpone. On the other hand, if the situation changes, you may be glad in a few month's time that you don't have any longer to wait.
     
  10. canary

    canary Registered User

    Feb 25, 2014
    9,902
    Female
    South coast
    Attendance Allowance is for people who have reached state pension age. Your MIL will be receiving ESA and PIP because she is younger. Some branches of Age UK only deal with people who are aged 60yrs +, although my local one will help people aged 55yrs+.
    Hope that explains things a bit.
     
  11. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    2,951
    Of course doing nothing is an option. But how about getting a diagnosis and then doing nothing more? I for one do not intend taking medication if I get AD as I do not want to prolong the agony for myself or those around me. But if/when I actually get it I will probably find the decision is taken out of my hands anyway.
    This is as a result of seeing my mother with AD. Your wife has basically told you she does not want treatment by the sound of it, though I think it would be incredibly difficult for you to not investigate what can be done - a real dilemma.
     
  12. mark2160

    mark2160 Registered User

    Aug 19, 2015
    6
    Nottinghamshire
    Dear all,

    Thank you for the advice.
    Of late I have probably been guilty of sticking my head in the sand . Even after 20 months it’s still difficult to except.
    I’d love to say something positive but let’s face it – No happy endings for Dementia
     
  13. piph

    piph Registered User

    Feb 4, 2013
    1,530
    Northamptonshire
    Head in the sand - I know that feeling well :( You spend so long worrying and wondering what to do for the best, that you end up doing nothing at all!
     
  14. Rubylou

    Rubylou Registered User

    Jan 20, 2015
    18
    Female
    Cambridgeshire
    Yep head in the sand..... Know that feeling well! Along with unzipping my life and going back to the one i had with my husband before Ad bullied its way into our happy life ..... If only!!!
    My husband was diagnosed last year at 59 i am glad we went through it all ss it gave us/me a deffinate reason why these things were happening. But you have to fo ehat is right for you in your situation. It was a very long haul getting soo many forms filled and benefits are making life that bit easier, especially with 2 teenage daughters!!
    Hope all peoples opinions are helping you even if its to feel a little bit of you are not alone
     
  15. Sue J

    Sue J Registered User

    Dec 9, 2009
    8,042
    Hi Mark

    I still have no diagnosis, other than my own, since having symptoms for 6 years now starting in my late 40s. I got some help through Age UK via CAB when I was 50.

    I still feel I need a diagnosis to aid me getting more help, I still battle to increase my benefits to fund the little help I do get. I think it is important to be in the system as it makes getting help easier, or should and you don't know how things will pan out and it's far harder to get help on board when you are in a crisis situation. You may not need the help now but down the line may be different.

    I am not improving just learning to cope and adapt to my new and very different life:( I often feel that not giving me a diagnosis is a denial of my needs, maybe the medics think it might tip me over the edge:confused: instead they leave me walking along it not knowing when I'll fall off. I try, as best I can , to come to terms with things but it is made more difficult when not addressed by medics or SS.

    Best wishes to you and your wife
    Sue
     
  16. AlsoConfused

    AlsoConfused Registered User

    Sep 17, 2010
    1,958
    Dear Sue

    Hugs ... Can't think of anything else to say.
     
  17. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    10,630
    North West
    I think you are taking a brave stand and your wife is much less likely to get depressed as a result.

    I think also that although some drugs can help with the symptoms for some people, as can some lifestyle changes (which clearly don't need a diagnosis), nothing can slow down the progress of the disease. Even the drug companies don't make this claim, as I understand it. In addition the drugs can have very unhelpful side-effects for some people (as evidenced on TP). If I am wrong, I would like to see the evidence that any authoritative source has ever claimed that the drugs can slow down the disease.

    Your wife seems relatively content. That's pretty good. Long may it continue.
     
  18. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #18 Margarita, Aug 25, 2015
    Last edited: Aug 25, 2015
    With hindsight my mother was showing loads of symptoms of dementia
    while my father was alive
    It was only when my father past away that my mother mental health got so bad that it felt like
    a pandora box had open in mums mind

    I got my mother diagnosed . My Mother was diagnosed with late stages of AZ / VA . lucky my mother was given Ebixa which had a positive effect on mum .
    I know Ebixa does not have the same effect on everyone, but it help my mother.
    Which enabled me to Support, Care for my mother Full time at home with me .

    I am only assuming from my own experience, while your fit healthy to look after your wife while making sure you are looking after your own health, your wife can function ok without being diagnosed

    I don’t know if you have children / adult children

    If you have then for their sake in their future in case anything happens to you
    Or if you don’t have children setting up LPA could help your wife with

    1 -Health and welfare lasting power of attorney
    2-Property and financial affairs lasting power of attorney
    https://www.gov.uk/power-of-attorney/overview
    1. Overview
    A lasting power of attorney (LPA) is a legal document that lets you (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help you make decisions or make decisions on your behalf.

    This gives you more control over what happens to you if, for example, you have an accident or an illness and can’t make decisions at the time they need to be made (you ‘lack mental capacity’).
     
  19. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    #19 Beannie, Aug 26, 2015
    Last edited: Aug 26, 2015
    Hi Mark 2160,

    I think it is important you get some financial help. My husband was awarded DLA or PIP as it is now known and that would help financially as you have had to leave work early. It is always difficult to decide what to do for the best and for your partner, however, it is also important to think about yourself as well, as you say you are under no illusion of the journey you are on. Your wife must be very frightened as she saw what happened to her mother. I agree with others that the medication (in my husband's case donepezil) can only slow it down (if at all) for a short while. I came into contact with the Alzheimers Society through an information stand they had at our local Tesco's and one of the Alzheimers Team went with my husband to his DLA interview, and he was awarded the higher rate for mobility and middle rate for care. Do you or wife have close friends or family that could be brought into a conversation around a formal diagnosis? My husband was in denial in as much as when he was told what he had he said okay started taking the tablets and wouldn't talk about it. Hope all of us have been of some help to you and I am sure we all recognise you know your wife best and it is you who has to live with any decisions that are made. Do let us know how you are getting along.
     

Share This Page

  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.
  1. This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
    By continuing to use this site, you are consenting to our use of cookies.