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.

Diagnosed with AD then what??

Discussion in 'Younger people with dementia and their carers' started by DianeG, Apr 17, 2008.

  1. DianeG

    DianeG Registered User

    Oct 12, 2007

    I have posted quite a few times before now but after reading some recent posts I want to ask you all a question....

    How on earth do you know when someone moves to the next stage?

    I mean medically....My mum was diagnosed at the start of last year with AD (she was 56), she has moved area and now into warden assisted housing with my dad but there doesnt seem to be any regular medical checks....so how do I know when she has moved on - my unprofessional dignosis against what it says in books? what people say on forums like this? I am confused. I just know my mum is getting worse - eating is a real issue, she cant co-orinate the action of getting in a car now (last year it was just the seat belt that was the problem). I could go on telling you how mum is but my point is...I have no clue how I knwo when she is at the next stage. it is obviously omportant to understand this and even more so when many of the threads created on TP talk about the different stages.

  2. EmJ

    EmJ Registered User

    Sep 26, 2007
    It all comes down to everyone experiencing dementia differently really. My family look after my granny. We don't really know what form of dementia she has we've never been told!

    In some areas you are kind of left to figure it out yourself really. We assumed being an illness there would be something in place but we're still waiting. Books, information sheets and TP are our education on dementia. It shouldn't be this way but thank goodness for TP where we can help each other!

    I think the most important thing is to keep looking at what the person can do and work on those areas to raise self-esteem. Then keep an eye on the support required in other areas. We tend to just adapt things ourselves otherwise nothing would happen. There seems to be too many people affected and not enough people to monitor each individual situation.

    Take care,

    EmJ :)
  3. VIB35

    VIB35 Registered User

    Oct 15, 2007
    Hi there. My mother has early onset dementia (now 64 but diagnosed at 60) so i sympathise enormously with what you're going through. Have you spoken to your local branch of the Alzheimers Association. They were really helpful to us at the beginning. We also have a lot of support from the memory clinic at the hospital where my mother had her tests done. Have they been helpful to you? Perhaps your GP can point you in the right direction. it really is a mindfield out there and unless you make a lot of noise, you really are left to get on with it. Does your father have any help? We've used Crossroads, Care UK, Allied Healthcare and have now, finally, found some great carers who give my father the respite he needs. Hope this helps. VIB35
  4. helen.tomlinson

    helen.tomlinson Registered User

    Mar 27, 2008
    Hello Diane

    I think that's an important question and am glad that you are able to voice it. I think every change is a stage and you are noticing the stages. Someone said to me that it would be helpful to write down all the little changes that I notice and this can help to define things. I must admit that I didn't do that but I use Talking Point instead and note things this way instead. Mind you I do think it would be better if I kept separate notes but to me it's just one extra job that I don't want.

    I don't know whether this helps Diane but I hope you find the answer to your question.

    Love and best wishes

  5. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    #5 BeckyJan, Apr 17, 2008
    Last edited: Dec 5, 2008
    Hello Diane:

    It is hard except in hindsight to know about the stages. In Alzh. it is a slow drift downwards (have you seen the stage7/stage3 details - I am attaching one form of it I keep on my files.

    My husband has Alz. - I suspect he is about stage 6 but no-one has told me, we have very little interest from the Mental Health Team. I think that his score on the MMSE test is quite high although I know he has deteriorated very quickly in the past 12 months.

    Has your Mum been prescribed Aricept? If not you really need to do some hassling. If so, then it can take a few months to be effective (although in some cases it does not work or causes side effects :eek:).

    There are so many questions - please keep posting and reading - you will learn so much on TP, but always remember every case is different.

    Take care Jan
  6. dolly gee

    dolly gee Registered User

    Mar 9, 2007
    Hi Diane my thourts go out to you i had my mum and sister.you should ask for more information about mum you need to know there are diferant dementias my sister had loui bodies dementia.you can do what has been sugested writ things down it will help good luck dolly gee
  7. dolly gee

    dolly gee Registered User

    Mar 9, 2007
    Hi Diane my thourts go out to you i had my mum and sister.you should ask for more information about mum you need to know there are diferant dementias my sister had loui bodies dementia.you can do what has been sugested write things down it will help good luck dolly gee
  8. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    Hi Diane,
    Although I knew about AD for a long time, when my husband was diagnoised at 58 it hit me like a bomb.
    I did keep a daily diary writing everything down that I thought relevent for Doctors and Consultants and it was very valueable to have done that.
    Eleven months ago my husband was placed in a E.M.I. Unit and is now in the final stage.
    Ask as many questions from the Professionals that you need answers to.
    Without my family, Alzheimer's Branch and all the support on Talking Point and being disabled myself, I would not have been able to cope.
    So I wish you all the best.
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I believe the stages are a very rough guide and overlap in many instances.
    For me, it is enough just to monitor a deterioration, as there are many deteriorations within each stage.
    Some seeming deteriorations are not constant and I have often found what I thought to be a deterioration was just a blip.

    A diary does help to monitor, for it`s only by looking back, you can appreciate significant changes.

    But although my husband has deteriorated during the last few months, his periods of sundowning have been constant for a few years.
  10. jc141265

    jc141265 Registered User

    Sep 16, 2005
    Hi Diane,
    I know how you feel and all I can say is don't stress too much about recognising the various 'stages' as others have said it all depends on the individual. Also as I said in my post that I wrote just before reading yours, 'No rhyme or reason to this disease' half the time I suspect the medical establishment knows less than the families who have to deal with this on a day to day basis, so don't go assuming that what they say is stages is going to necessarily apply to your mother's situation.
    I have seen people post on here and their loved one seems to go down a completely different path to my father's, it amazes me how quickly this disease can progress in some and so slowly in others. Dad's path started off slow for the first year or two then went madly downhill for a period of about 4yrs and then has slowed right down again, so even if you think 'oh my god she must be nearly at last stage already, that may not mean much from a time perspective.
    To get some real perspective with regards to the meaning of the so called stages, one only needs to look at my post of September 2005 where I said
    Back then I assessed Dad as per the 'stages' and he was apparently in Stage 7 the final stage...so I thought that it was nearly all over...and yet here I am in April 2008 and he is still continuing on in that same stage (cos there aint no other after it).
    Hope that clears things up a little in that the stages assessments don't necessarily clear things up!:p
  11. DianeG

    DianeG Registered User

    Oct 12, 2007
    Thank you


    Sorry for delay replying to you all. I had my mum in London for a mother / daughter weekend.

    I had a look through all your posts and really appreciate you all taking the time to comment. It is re-assuring to know that I am not the only only feeling a little in the dark.

    Mum will not take aricept (both her and dad are against it) - she did start on one drug but it spaced her out and drugged her up so much that she stopped. I did try to explain that it was to help her but I am just the daughter and not the main carer. She ahs moved area into the sheltered housing (just before xmas) and we have extra support from residents and the comfort that the warden and pull cords brings. Dad gets all angry and annoyed when i try to ask questions or offer help i.e. going to the new doctors with them.

    I wanted to share with you my weekend with mum and the thoughts I had - ashammed as I am of them:

    We did crepes and champagne in Harrods, shopping in Harrods, the open top bus tour, an award winning Indian restaurant, Grease the musical, Madam Tussauds, Hamleys, sunday lunch, the London Eye and the Thames River Cruise. The things we tried to do and the places we went were great.

    However, I am mentally and physically shattered. It would have been easier taking my 4 year old son to London. My mum is not the person I had with me in London. How's this for a how it went:

    • she followed me through airport security rather than waiting her turn
    • she wasnt aware of the arm rests on the plane and she sat on them
    • I had to cut up every meal for her
    • she takes about 45 mins to put clothes on and not very successfully, pants on inside out and legs in wrong holes, bra on but not sitting right at front (if you know what I mean), jumpers on back to front, trouser zip undone.
    • struggled on stairs big time
    • so so visible to others that she is not quite right
    • felt like no 'dignity' or awareness of things - walking around room undressed and confused never sure what she is looking for
    • wasn't watching the stage during the show and frequently sitting with eyes closed - getting mad with me when I asked if she was okay
    • dis-orientated if not attached to me
    • 2 panics thinking I'd lost her
    • repeating questions over and over and over
    • fell out of shower
    • fell whilst in shower
    • had to lift her naked body up both times
    • kissed the waiter leaving the restaurant after breakfast
    • pushing doors at wrong sides
    • can't read menus
    • couldnt make a decision about anything - even what she would have to drink
    • no expression to show if happy, sad, angry...
    • smile for a picture? couldn't do that and when she tried the pics look really strange - a vacant look on her face.

      Me? exhausted, conversation dry, feel guilty about feeling bored and on my own and wishing my time away so that I could come home. Not leaving a feeling of being a great daughter or carer. That sounds so so bad.

  12. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    Oh dear Diane: How do we find comfort for you except to say many of us have felt the same in similar situations.

    I think to take on a trip to London on your own with your Mum was a great thing to do. Oh maybe not the most uplifting trip but you have done something good for her. It is difficult when we have to face the reality - things aint what they used to be.

    You sound to be like one excellent carer and daughter.

    Keep trying ;) Love Jan
  13. DianeG

    DianeG Registered User

    Oct 12, 2007

    Thank you for your lovely note. I just wish I felt like I was doing the right thing by mum and the right thing by me.

    All we can all do is keep trying and keep talking I guess. At least on TP people really understand our thoughts and emotions and it feels safe to safe such things.


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.