diagnosis yesterday- heartbreaking, can the doctor be wrong?

Discussion in 'Recently diagnosed and early stages of dementia' started by gracie2014, Oct 15, 2014.

  1. gracie2014

    gracie2014 Registered User

    Oct 15, 2014
    #1 gracie2014, Oct 15, 2014
    Last edited: Oct 15, 2014
    I am heartbroken as my Mum was diagnosed with AD yesterday. She is 76. The doc said on our first visit to the memory clinic that he doubted it was AD (which got our hopes up) as her symptoms were not typical of AD, in that she seemed quite 'with it', and the fact that her memory problems have been going on for over 9 years (which she is completely aware of) other symptoms which have been going on for years include misplacing things and ringing up me/my sister because she thinks we have borrowed them and repeating information to us that she has already told us. Admittedly she has got a little worse in the last 12 months, but not much, but she now repeats the same questions two or three times in quite a short space of time, and seems to feel she is being left out if people don't talk to her and gets quite upset and jealous when this happens. Also it now takes her longer to count money (but she is still able to do it), she is able to care for herself, cook, clean, sew, knit, shop, find her way around town, do crosswords and sums and mark 6 bingo tickets at once. She is still proud of her appearance, wears makeup and has her hair done weekly. On the first visit to the memory clinic she scored 78% (I believe a score of 82% or over is classed normal and no further investigation needed) so doc suggested an MRI scan as he thought it could be furring up of the arteries (she mainly lost points on the short term memory questions). However the scan results yesterday showed shrinkage of the Hippocampus which doc said indicated mild AD (although no one can say for certain)and he has suggested she starts medication. My question is; could it not be AD. Could she go on like this for the next 9 years without much deterioration as she has the last 9? Or does AD always get worse? or might she be stable for a good few years? or am I just in denial? Mum is aware of the diagnosis and seems to have taken it quite well, but does not want anyone to know as she is still proud and wants to be as independent as possible. Mum lives with Dad who is still very 'switched on' and his brain is as sharp as a knife. He is very patient with her, reassures her and they 'have a laugh' about the little things like him having to repeat himself to her. They walk daily and socialise in their local every weekend. Mum won't go on holiday this year, but I try to interact with her on a daily basis and take her out one day a week. Am I in denial about AD?
  2. marionq

    marionq Registered User

    Apr 24, 2013
    She sounds as if she and your Dad are coping very well whether or not it is AD. I wouldn't look for problems until it is necessary. At her age anyone who is living as well in the community as she is cannot be too far down the dementia road.
  3. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    Hello Gracie and welcome to the forum.

    There is only one thing definite with dementia in any of it's forms and that is it won't getter better.

    Having said that people living with dementia vary greatly in how they progress. Many, many of our members have lived very well and coped wonderfully for many years. It is always best to not think too far ahead. Enjoy each day as it comes doing everything that you usually do. Encourage your Mum to stay as independant as she is now and just be ready to help in any way if she is having a bad couple of hours or a bad day. We all have those don't we?

    You sound as if you are all doing very well and there is no reason this cannot go on for along time. It would be good to get a few of the bits of legal 'stuff' dealt with sooner than later. Arrange Lasting Power of Attorney so that should your Mum become incapable of running her own finances then someone of her choice can deal with it for her. She could do the same to cover health and welfare. Making sure wills are up to date too would be good. It is all insurance that later on everything is in order and won't cause you any problems.

    Please join us on the forum for help and support or just somewhere to come for a chat.

    Take care,

  4. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    British Isles
    Please remember Gracie that there are now medications which can slow the progression. Although a diagnosis of AD is very depressing try to remember that at least the formal diagnosis opens the door to the medication. Above all, she has good support from you and your Dad.

    Although you are naturally shocked and frightened about your Mum's future, as others have said - getting a diagnosis makes your Mum no worse than she was the day before the diagnosis. Please take care and try not to worry about the distant future. None of us knows what is around the corner.
  5. janemit

    janemit Registered User

    Sep 7, 2014
    Sounds like you have a good GP. It was a long road to get my Mum a diagnosis she has mixed vascular and Alzheimers.
    No one knows what is round the corner, life isn't all doom and gloom with dementia and no one knows how things will progress.
    As was mentioned before there is medication to help symptoms. Enjoy your Mum as she is now and keep communication open with GP and others health care professionals they can be very supportive. Joining this forum has been a help as you will never be alone.
    Big hugs
  6. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    Hi there..my dad had symptoms for a few years and at 76 has had a diagnosis of dlb..dementia with lewy bodys....one thing I will say is that scan very rarely lie..people can exaggerate the symptoms but the scans tell a story....I found that my mother after years of covering up and filling in when my dad mixed something up..this was out of love but didnt allow us to see what dad couldnt do in order to help him...all people are different and behave differently...but alzheimers will get worse..in different ways and speeds for different people...one thing I find is that my dad has managed to cover up and lie unintentionally about how hes feeling..this is to do with the communication in the brain..what it tells them....you will notice by spending time with your mum away from your dad and in new situation what she can really do and cope with...with my dad hes deterioarated and my mum has only just noticed...I read all the literature and have read about the worse case senario...this means that when we have good days it uplifting when bad days happen theres no kick in the teeth...like mt mum feels as she still has an element of denial...
    If medication is available try it..not all dementias can have it dementia with lewy bodys or vascular....the stigma of dementia does cloud peoples minds sometimes...take everyday as it comes learn things about your mum that you ll notice from time to time..arrange things so that they suit your mum and dad...your family and friends should adapt to suit her not her them...dont be afraid to talk to her or your dad about ad...and look after yourself and your dad...it can be an emotional rollercoaster ups and downs...join society activities...spend time together ...whatever the diagnosis help will be needed in thefuture...drs have protocol to follow and would need to convinced the evidence is there...thousands are waiting for diagnosis so im so glad youve managed to do so. Good luck and best wishes

    Sent from my GT-I9505 using Talking Point mobile app
  7. loza

    loza Registered User

    Jul 4, 2013
    Dementia Diagnosis, my story

    Mum was diagnosed in 2009, they made a decision to go to Auz to see my brother, they made the most of it enjoying the devils in Tazmania as that had been on a list of to do things, they knew that would be their last long haul flight.
    Mum started going to a memory club a couple of afternoons a week, (driving licence revoked)Dad coped fine for a couple of years, I would take mum out to give him some respite, then he was getting poorly, nothing anyone could diagnose, I would go there Mum would be in a terrible state (2012) as he did not feel well enough to get up, so she had'nt had her breakfast etc, mental health nurse kept telling him what a wonderful job he was doing but we could see the whole thing falling apart,Dad was in and out of hosp in 2012 she would come and stay with me until dad come home they would both stay until they were well enough to go home, I had a bed and breakfast and a 6 year old, Mum would be wandering about in her nighty before I had showered her, after guests breakfasts ( worrying about Trip advisor reviews!!!) so time juggling and visiting was an art, we shared cooking meals and freezing them between my sister and myself, things were getting so out of control ( mental health nurse was still saying your doing a smashing job!) we persuaded him to have a helper to come in eventually you find someone who is passable, but ohh so slow, and would phone me with any problems at least twice a shift!!!
    December 2012 I moved to have a different life from the grind of a B&B, things moved so quick Mum had had enough dad was still poorly I could give them more time but on 9th Jan 2013 mum made the decision to go to live in a care home dad was not coping and mum was at risk, Dad was distraught that after all these years of her caring for him he was not able to do the same back, we asked the carer to leave and i went to cook and clean for dad and to help with the things he did not want 'outsiders' to help with. Dads health deteriated he was in and out of hosp tests were done nothing found he just gave up, i would cook his lunchtime dinner and leave him a sandwich which would still be there the next day he had forgotten about it, dementia was diagnosed he went home for 1 night it was awful I stayed with him as I was soo frightend for him as he was so poorly, doctor said they would arrange for him to go to a long stay rehab unit, ended up in hosp with awful halucinations, so would take mum from her care home to see him she was so worried but did not have the right words to express what she wanted to say, I would then go back to visit him in the evening juggling a babysitter for my 7 year old, who was so sweet with them and vice versa, dad gave up eating and died on Fathers day 2013, dementi with LB was on the brains for dementia report ( they had donated part of their brain for reasearch on death) we had been so wrapped up in mums dementia i think we overlooked dads as mum had always done everything for him even down to putting his underwear out!!! we just thought he would be able to do it.
    Mum seems to be late stage (no one tells you) she hardly ever speaks, her eyes are closed 90% of the time, she has to be hoisted as she can no longer weight bear, she is has double incontinence, she has to be fed, she can't work out how to get her hands to move to try and find an itch, they shake and move slightly so you can see what she is trying to do and pre empt it for her, she has a beaker she cant do this, she is totally dependant on care staff, Wed i went in she was eating breakfast looked at me and said 'lovely' gave me a kiss!! this makes the weeks of not seeing her awake all worthwhile, just that fleeting glimpse of her x
    (mum had worked in a dementia hosp in 70's) she knew the devastation this disease would cause as did my sister (she also worked in care).I had never worked in this field I wish I had thought harder about the disease and how it would progress and gone to see someone with late stage, so I was prepared for this stage, this poor little shell isnt my mum and selfish as it may seem I miss my mum.
  8. Oxy

    Oxy Registered User

    Jul 19, 2014
    Gracie, don't worry too much. Worry will not change anything. Your mum appears to still have a very good life. Laughing, socialising and walking are excellent for the upkeep of the brain at any age and will help her to keep the worst ravages of this disease at bay far longer. Encourage them to keep to a healthy diet to keep atherosclerosis to a minimum as much as possible. I wish your parents long and happy years together.
  9. Gigglemore

    Gigglemore Registered User

    Oct 18, 2013
    British Isles
    Ioza - so sorry that dementia has been devastating for your family. Hope your poor Mum is at peace soon.
  10. loza

    loza Registered User

    Jul 4, 2013
    Many thanks for your kind words, have not been on here recently as been totally involved in care home life, mum is being nursed in bed, having to work at things she will eat, I HATE DEMENTIA.
  11. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    Wishing you strength loza. x
  12. Pickles53

    Pickles53 Registered User

    Feb 25, 2014
    Radcliffe on Trent
    Me too Ioza, my mum is just like yours, it's so sad. I think she knows when I visit,but usually now she won't even open her eyes, not even to see her little great grandson who until recently was the only one who could get a smile from her. We keep hoping,but it's so hard to watch her just fading away in front of us.
  13. loza

    loza Registered User

    Jul 4, 2013
    Ohh pickles, ( so sad to find someone else in these circumstances) I have never seen any one else like this, the best mum has been for being awake is the last couple of days, but she is now confined to bed, but drinking slowly, not much intrest in food unless its sweet and just slips down her throat, she know longer responds to us even the children, but yes they would also make face faces to each other and laugh like drains, she was quacking to me but even that has gone, i just feel i cant reach her no matter what I do:(
  14. stanleypj

    stanleypj Registered User

    Dec 8, 2011
    North West
    Could it not be AD? Yes, it's possible and the doc seems to have acknowledged this. Someone said that scans don't lie but the reality is that they have to be interpreted. During the 12 years that it took for my wife to get a diagnosis, there were often disagreements between various medics - she had three different types of scan. Like your mum's, her progression was very gradual though since diagnosis 3 years ago things have mostly deteriorated but she has also had troughs from which she has recovered so it's important to bear in mind that not all declines are necessarily permanent.

    It's important, I think, to understand the limitations of medication:

    'medicines have been developed that can improve symptoms, or temporarily slow down their progression, in some people.'

    The quote is from The AS factsheet which you may well have read:


    Note that if the drugs 'work' at all and do not have unacceptable side-effects, they can help with the symptoms, but they do not even claim to slow down the disease.

    Some people do have long periods of relative stability.

    Are you in denial? I doubt it. Hope is better than despair so many of us keep trying to find ways of helping to improve the situation, and find little things to celebrate, and keep asking questions - even if we know, pretty much what the outcome is most likely to be.

    And we all have to die sometime, of something.
  15. gracie2014

    gracie2014 Registered User

    Oct 15, 2014
    #15 gracie2014, Apr 4, 2016
    Last edited: Apr 4, 2016
    upset with Memory services error

    Update on Mum who was diagnosed in Oct 2014 with mild AD. She was put on a cognitive enhancer and also takes Souvenaid daily. At her next appointment in April 2015 her score improved. In Oct 2015 her score was fractionally worse at 26/30. Her checkup last week, March 2016 showed a score again of 26/30. This is all very encouraging and we are grateful that things seem stable. My concerns are this; whilst Mum was doing the memory test, myself & Dad were taken in another room to answer 'confidential' questions about Mum, ie. if we had seen any changes, could she add up money, cook etc and the answers that we gave were typed by the nurse at the time. Two days later, Mum receives a letter through the post addressed to her which detailed the questions that me and Dad were asked and the answers we gave..ie she finds it difficult to count money, she needs encouraging to do housework, she is less patient etc. The letter also talks about Mum as if the letter isn't to her!! This letter talks about AD, her medication, dementia and the details in it have really upset my Mum and destroyed any confidence that she had in her abilities. We are disgusted as we thought this was confidential! Mum is paranoid that we are all taking about her .....how can this possibly help her condition? I have phoned up the memory service who have apologised for sending the 'care plan' to her, assured me that it wont happen again as they will log it on the system and said I can formally complain if I wish. The manager is supposed to be calling me back to discuss it but so far has not. I am interested to hear if anyone has experienced this and what you all think of this.
  16. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    #16 Shedrech, Apr 5, 2016
    Last edited: Apr 5, 2016
    Hi gracie2014
    thanks for the update
    you want to do the best for your mum and tell it like it is so that the medics wholly understand her position - but not too helpful if she is then distressed by such a letter
    I hope it goes to the back of her mind and she doesn't retain any negative feelings from it
    good overall that the system now tries to keep the patient in the loop, however some thought needs to be put into to whom the letter is sent
    I hope the manager does call and you get to make your situation clear so letters are sent to you
    best wishes
  17. vannesser

    vannesser Registered User

    Apr 4, 2016
    hi grace.

    my name is vannessa .my husband as been diagnosed with dementia yesterday .witch is hard
    he did test but only got 48.as with other illnesses he had trouble with wrighting and seeing things {he is 72}he as trouble with words and forgetting.
    on a few times he as fellout with people for no reason then acts as thoue every things ok
    I like you don't no how bad its going to get or when .some of my family no I have told them and one of them as asked me if we still going on holiday as if he that bad he can not do eny thing but he can
    so I am just going to carry on as normal while I can and take it one day at a time

    hope you ok
  18. Shedrech

    Shedrech Volunteer Moderator

    Dec 15, 2012
    Good for you vannesser
    one day at a time is the way to go
    a warm welcome to TP - it's a good place to share your experiences with people who are walking the same route

    I'll just mention - your husband has a right to an assessment of his needs by your Local Authority's Adult Services - and you have a right to a Carer's Assessment - so when you have some time, do contact them
    and there may be carers cafes in your area, just an informal way to chat over coffee

    one financial help may be that your council may disregard some of your Council Tax, worth having a word with them

    you'll find out about much more as you have a mooch around the forum

    best wishes to you both :)
  19. Trisha4

    Trisha4 Registered User

    Jan 16, 2014
    Sending the letter to your Mum was a bad thing for them to do. When you speak to the manager ask him or her what has been put in place to ensure the does not happen again to you or anyone else.
    The progress of her condition seems slow which is great. I think that 'enjoy the moment' is important with anything that could lead to a deterioration and concentrate on the 'can do' elements of life with your Mum.
    I wish you all well X

    Sent from my iPad using Talking Point

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