Am new and hi to everyone, just found out mum has Alzheimers

Discussion in 'Younger people with dementia and their carers' started by fiona2007, Aug 23, 2007.

  1. fiona2007

    fiona2007 Registered User

    Aug 22, 2007
    3
    Hi everyone

    Went with my step-dad to my mothers doctor on Monday, its a year since I first contacted the doctor with our family concerns and worries about her mental health, all this being done behind her back as last year my step dad tried to approach my mother by telling her as a family we had noticed changes in her, she flipped, dis-owned my brother at that point but has since forgot about it, but has been very sensitive to any approach, now he feels he can only side with her or his life is hell.

    We were no further ahead even after her many visits to a from consultants and finally a CT scan a few months ago we still seemed to have no answers, though we new deep down the answers, my step-dad was told at the following appointment after the scan there were no abnormalities, as a family we felt in limbo having no answers. My mother co-operated with most appointments, hated the consultant on the first visit but loved them the next.

    The reason we made the appointment to see the doctor as he has become desperate for some help and advice on what to do or where to go for help. As life has become very difficult for him at home, It was a sad day for us all as the doctor did confirm Alzheimers, as we suspected... but today am still in shock.

    The doctor was very understanding and shocked this had not been explained at the later appointment with the consultant as he had all the notes on the results and had already made provisions for the social work to be in contact and was surprised they had not already been, he also is going to try and help her get the medication as she is only 65. But advises it has to be the consultants decision.

    Sadly I do not stay near my parents, a plane journey away, but travel home as regular as I can, my stepdad needs as much support he can get, he still works full time and now my mother has lost all interest in cooking, cleaning, getting up in the nght, he is worn out and I worry for his health. I also worry constantly about the loss of my mother, grandmother and his wife and dread the day she does not know us, brothers and my family.

    I dont really know our understand what stage she is at, only know I have seen over the the few years a drastic change in her mental ability, she was such intelligent woman, sewing, cooking, play any mind games, scrabble, cards, countdown you name it and beat us hands down therfore I found it sad when I tried to get her to play scrabble a few months ago and she could not concentrate, never mind not being able to put words together, taking 10 tiles instead of 7. Have to add I did humour her and believe I do have an understanding on this illness.

    But as a family the stage we are at, is we have been advised by the doctor we need to tell her, before they can get the social services to help, as they do need her understanding and approval before they come into her home. Reading many of the discussions on here tonight am not sure what we should do for the best? Due to the previous approaches and the fear my step-dad has in not siding with her due to the outbursts, the doctor has offered to send out an appointment for her to come and see him and he will tell her.

    I thank you for reading this, I have looked many times at this site for advice and help and have gained great understanding of the illness. And will be visiting many times again from now on. As we probably all do, its not until the diagnosis it becomes reality. Just wish I had came on and talked more about everything that has been happening over the last few years.

    Fiona
     
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #2 Margarita, Aug 23, 2007
    Last edited: Aug 23, 2007
    I do feel that the consultants should of told her, now its left up to the doctor , with my mother the consultant done it , mind you don't think mum took it in , because later on she still thought they was nothing wrong with her , but did take the medication for AZ that he gave her.

    I would make an appointment with doctor so he could tell your mother , if you find it all to hard to tell her .

    Or can't you ask for another appointment with consultants so he could tell her , also so he can talk about medication . seeing that doctor said that medication for AZ , can only be given by consultants

    Welcome to TP fiona

    better late then never :)
     
  3. Cate

    Cate Registered User

    Jul 2, 2006
    1,370
    Newport, Gwent
    Hi Fiona

    Welcome to Talking Point.

    I am so very sorry that mum has had the diagnosis of AD, but at least you have the answers you were seeking.

    we have been advised by the doctor we need to tell her, before they can get the social services to help, as they do need her understanding and approval before they come into her home.

    Fiona I don’t understand this at all. My mum has absolutely no insight into her illness, and quite honestly we decided as a family there was no value in her knowing. It would only worry and distress her further. If you feel the same, I am sure all you need do is explain this to the Social Worker. With regard gaining entry into the home, I am sure your step dad issuing the invitation will suffice.

    It is such early days for you, you need to come to terms with the diagnosis, then take it step by step. You will find over the weeks and months to come valuable information from other members of Talking Point, and also from the AD Society Fact Sheets. Just a word of caution, please be kind to yourself and try not to overload on information in these early days.

    Keep in touch when ever you need to

    Cate
     
  4. fiona2007

    fiona2007 Registered User

    Aug 22, 2007
    3
    thanks

    Thank you Margarita & Cate

    for replying especially at this hour, and the advice it all appreciated, understand Cate I should not try to overload as I have done over the last few days, my partner has just said I cant let it take over my life, I understand this fully but at the moment it has consumed me, with what, when,why and what next!!

    When I asked the doctor if she needed to know, he recomended it was best for us especially her husband to enable her to move on from the denial stage, I am a bit confused about this as well. I am trying to understand , maybe because mum was and still trys to be a very independent woman when challanged. I can see her resenting Social workers coming in, on at least the first approach anyway. I think its the confrontation we may all be afraid of.

    I do agree with you Margarita it should have been the consultants who first approached it with the scan result, the doctor was very appologetic we had to hear it from him second hand. Unfortunately due to where my mum lives the consultants only visit every 3 mths and the last appointment a few weeks ago was cancelled by the consultant. So we will have to wait another 3mths.

    Thanks again and will keep in touch.
     
  5. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Fiona,
    We can have suspicions, but when they are confirmed it does hurt.

    Fight for your mum to be given medication. In many cases it does slow down the progression of the symptoms, and the sooner that it can be started the better. Others will be able to tell you more about this.

    My mum knew that she had problems with her memory but never really understood any more; dad and I organised for social services to make an assessment, and organised carers.

    "and dread the day she does not know us" - I think that is one thing that we all fear - but try not to. The loss is gradual; you have time to come to terms with things; and if the day comes that mum does not know you, you will still know and love her. It will be alright. What you find is that little things take on a greater significance; so though mum may not acknowledge you, there is a special smile, or a look, that lets you know that mum is still mum.

    Take one day at a time; give yourself time to grieve now that you have the diagnosis - because that is what you are doing - and then come out fighting, ready to help mum and step dad live life to the full.

    Love Helen
     
  6. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    Hello

    I have recently had a diagnosis of Alzheimers for my mum, it has all come on so rapidly I feel it is unreal. Three months ago, she was managing everything herself, and now is not allowed to live alone, so she is ina care home which she hates, doesn't really understand why she is there and is depressed (I think, next investigation).

    I don't think you should chastise yourself at all, you do what you can. The illness is not like a physical one where you can see a problem, get a diagnoses and mend it. Alzheimers cannot be mended, it might be able to be controllled, but that is about it.

    And every person is different in how they develope with Alzheimers. Sometimes I visit my mum in the Home and wonder if she should be there, other times she is so confused that I am certain why she is there.

    You will find lots of helpers on this website, we are all in the same boat to different depths, but someone will be in the same boat as you.

    Much love

    Margaret
     
  7. sheena

    sheena Registered User

    Aug 4, 2007
    22
    Hi Fiona

    As you will have no doubt gathered as I did everyone who has AD is different. My husband was given his diagnosis at age 62 and when he was on his way to his 4th/5th 2nd opinion I called a halt. He still says he doesn't have AD although wears and SOS bracelet with all the info in it and is quite proud to show it around, we have two elderly friends who have AD and he says "its sad that has happened to them - they were so bright" and with another who happens to be the same age as him but has vascular dementia he says "I always thought he was short of a shilling ". He also tells people he has been diagnosed with AD, but another day will say he doesn't have it. Everyone is different and there may be days your mum will protest her diagnosis and another accept it. To be honest I think a lot of it goes over their head and you need to deal with each situation as it arises. One thing you or your step-dad will learn is to think on your feet - and yes sometimes the answer you give will be the wrong one but hey you can't do anything about that. Just take it a step at a time. I tried to be too well organised for my husband in the beginning and it doesn't work

    A day at a time

    Take care and keep in touch this site is a great one but remember there will be times when you can have a good laugh about situations as well and your mum will laugh with you. Try to warn your step-dad about everything being his fault it is just something you have to grin and bear I'm afraid - walking out of the room is a good tactic.

    Sheena
     
  8. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Hi Fiona

    ((((((hugs))))))))

    Hearing the words puts a stamp on it and makes it hard. Eventhough you know what is coming it is hard to hear it.

    It will also take you times to come to terms with the diagnosis. I found it a strange thing because by the time we had the diagnosis Mum had changed beyond all recognition anyway and although I saw glimpses occasionally Mum was very far away. Sometimes now, eventhough she is alive, I speak of her in the past tense.

    The person she is now is very different to "My Mum" but I still love her. I know I will grieve again when she goes.

    I was also scared of her not recognising me but for me by the time I got "empty eyes" I was sort of expecting it so it didn't phase me too much. It is gradual process. I also lived far away from Mum so I tried each day to speak to her on the phone, even if I was shouted at, if she walked away from the receiver, or wanted to chat. I discussed it with the staff in her care home and we all felt it gave her a sense of the familiar. Quite often now Mum wont show any signs of recognition until I talk for a while.

    Mum herself asked her GP why she was tired all the time and forgetful. The GP told her she had dementia, but by the time she was told, she was just happy to have a name for the condition that made her feel so awful. She had no insight into what it meant.

    Your Mum also comes from a generation who can still remember the stigma that was attached to any type of mental ill health. I can remember my Mother being horrified that her first appointment with the psycho-geriatrician was at the local psychiatric hospital. Therefore she will have great difficulty as she is losing the ability to think as you and I would about it.

    It is not doom and gloom and you will have fun days ahead. Mum still loved going out shopping and having tea and cakes for a long time. She enjoyed presents and even last year was perusaded to sing Christmas carols with my sons. I think though that in the beginning this is hard to see but for me, as I have accepted what is happening to her, accepting that it is a downhill slope and that what you class as good changes as the months go by, it is more easy for me to be balanced.

    Good Luck in the days ahead as you get the care package set up.

    Love

    Mameeskye
     
  9. fiona2007

    fiona2007 Registered User

    Aug 22, 2007
    3
    thanks to everyone

    hi

    A big thank you to all who have replied with there love and support, all the advice is greatly appreciated, and your experiances are already so familiar, so glad to have come on to TP, I am trying not to let it consume me and allow time to breath and adjust to the news, also have to remember about my own family and spent quality time with them.

    My step-dad has asked us to go on holiday with them, I guess it maybe will be there last, they have been going every year for the last 10 to Tenerife, my mum continues to speak about there holidays and ask when they are going, My stepdad took here last year but was so worried and concerned that if something happened to him she would not cope, so he wants to please her by going but taking the support with him, I am anxious about it but do want to offer as much help as I can. When she went on the plane to attend the hospital for the scan she thought she was going to Tenerife. she was very agitated at the hospital and the Airport, I just hope she can enjoy herself and the travel is managable.

    Well a big thank you again to all

    Fiona x x x
     
  10. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi, Fiona, you're doing the right thing, taking things step by step, and giving yourself time to adjust.

    It's a lovely idea, you going on holiday with your mum and step-dad. It will be so much easier with some support.

    I'd suggest not booking anythings just yet, though. You know your mum is going to deteriorate, but you don't know how quickly. There's also the problem of insurance, although having said that my husband and I continued to holiday abroad until last year.

    Just do as you've already decided, take things easily, and keep the idea of the holiday as something to look forward to. It may be the last, as you say, but you may manage a few more. You never can tell, with this disease.

    The best of luck,
     

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