1. Kelly Blackburn

    Kelly Blackburn Registered User

    Dec 16, 2005
    2
    Nottingham,UK
    Hi everyone, My Dads recently been diagnosed with dementia and Parkinsons disease. He is only 58. Its hard to accept the diagnosis because he is so "himself" most of the time. He has Lewybody dementia, I've been reading about it as much as possible but would really appreciate any 1st hand knowledge of this condition.
    When i was first told about my dads illness i was just relieved he didn,t have a brain tumour but now i.m gaining knowledge of this terrible diagnosis i.m finding it harder and harder to stay positive. I can't imagine how my dad must be feeling.

    My mum thinks he needs a second opinion and they've got it wrong but perhaps she just can't face the reality.

    Has anyone got any advice? or just a chat would be lovely.

    Looking forward to hearing from you all.
    Kelly
     
  2. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi Kelly, welcome to TP. My partner Lionel was diagnosed with Alzheimer's just as he was 60, symptons for many years previous.
    Can understand you mum's reluctance to accept diagnosis - it is hard to come to terms with.
    Please try to accept the situation, and do as much as you can NOW, as dear Lionel says "today is as good as it can get" so treasure all these good days.
    Please continue to visit the forum and post again soon, Connie
     
  3. JANICE

    JANICE Registered User

    Jun 28, 2005
    23
    SOUTHAMPTON
    Hi Kelly,

    My husband, Keith, was diagnosed with AD at 56 (hes now 58) so I know just how you and your mum are feeling. Our two daughters are finding it very hard to see their dad gradually deteriorating. It is very difficult for us all but you find the strength to deal with it from somewhere. Some days are better than others I must admit but the Consultants advice to me when we first got the diagnosis was to do everything you want to do sooner rather than later, don't put things off. So that is what we are doing as much as possible. Anywhere he wants to go I am doing my best to see that we get there while he is still well enough to know about it and appreciate it and I still plan holidays etc with him so that he has something to look forward.

    It is hard but keep your chin up and support your mum, I know from personal experience how much I appreciate the support my girls give me.

    Love

    Janice
     
  4. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    639
    West Sussex
    Hello Kelly

    I am sorry to hear about your Dad.

    My Mum was diagnosed 5 years ago when she was a very lively 70 years old. Dad looked after her for 4 years until his sudden death last year. Mum has been in residential care since then.

    It is a tough road ahead for you all, but if you take just one step at a time, you will make it.

    Cherish each day your Mum and Dad are together and give your Mum as much support as you can, my Dad was totally exhausted sometimes, despite our help. We could go home for a breather, he did not have that luxury, nor did he want it he was totally devoted to her as she was once to him.

    Your relationship with both your parents will change, but there are so many postives along the way. I grew closer to my Dad during the years he cared for Mum, and got to know him as a person rather than a Dad, if you see what I mean.

    I have always been very close to Mum and my relationship with her is now more as a best friend than a daughter, as she does not really know me at all any more.

    This new relationship is lovely though, and one I want to keep forever as long as Mum is happy in her own little world, as she is most of the time.

    Take things slowly and ask for all the help you can get, if your friends, neighbours and so on know what your Dad's problem is it will make life easier, although be prepared for some friends disappearing as they "can't handle it".

    Best wishes to you all.

    Kathleen
    xx
     
  5. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    939
    Hi Kelly

    Welcome to TP.

    It's very hard for anyone to accept this horrible illness and often even when it has been diagnosed, families still think when the sufferer has good days, that maybe they don't have alzheime's at all! I always did with my mum who had it.

    It's very hard to come to terms with this illness, but you will cope. You've found this site which will be of great support to you. Talk as much as you like here. It will help you not feel alone and you might even get some good advice if you're looking for it.

    Again, welcome to the family.
     
  6. twink

    twink Registered User

    Oct 28, 2005
    265
    Cambridgeshire UK
    kelly

    Hi Kelly,

    My husband is 55 and has been diagnosed with Alzheimner's and there have been symptoms for 3 or 4 years now. It is very hard and there are indeed days when you think they haven't got it but you will get through. It's all new to me too and I've no family nearby, our kids are down South, about 70 miles away.

    Stay strong and as everyone else has said, this is a great place to be for support.

    Twink/Sue
     
  7. Claire D

    Claire D Registered User

    Nov 30, 2005
    11
    Catch the moments

    Kelly

    I too have just joined the AZ society and this website - although my mother has been suffering from Parkinsons for about 10 years now, she also has osteoporosis and now has AZ (which has rapidly got worse over the last year).

    If you can accept the diagnosis and work with it rather than against it you will not only provide great support for your father and family but also be kind to yourself.

    Relationships will change, the meaning of words and places will not be the same and gradually their memory will fade but you can make a difference by caring, loving and being there for everyone who will be touched by this illness.

    Whatever medication is offered - please encourage your father to try it. My mother was in denial for so long about the Parkinsons that by the time she did take some medication the effect on her was very minimal.

    Remember they can't help the way they become but you can give much love to them however frustrating it may be.

    Keep in touch with TP - it is a great place to share with some very caring and experienced people. Take care of yourself.
     
  8. BRANDY

    BRANDY Registered User

    Nov 29, 2005
    3
    lanarkshire
    Hi Kelly,

    I am new to this forum also. My dad (59) was diagnosed is September with alzheimers. I guess I was expecting it as I have known for the past year in particular that he was having problems. Eventually I persuaded him to see the doctor.

    Mum has been indenial ever since but has just recently went through a tough couple of weeks where she has final come to believe that the diagnosis is right.

    I feel devastated. Dad tries to put a brave face on it but I can see that he gets really down sometimes, but he won't admit it to us as he doesn't want to upset us.

    The problem is, that my mums mum also had this dreadful disease but at that time (20 years ago) people were just left to get on with it. So we all have really upsetting and awful memories of how gran deteriorated.

    I think thats why it has been so diffcult for my mum to take it in as she knows what the future holds for my dad.

    I feel now that I want protect and look after them, as I only have one other sister who lives in London, sort of role reversal really.

    It is so difficult some days not to just break down and cry. I have 2 young girls of my own and I cant help think what my dads mental state will be when they grow up. I know how hard it was for me with my gran when I was young and I don't want them to feel the hurt that I felt when she couldnt remember me.

    It is just so unfair.

    Love

    Brandy
     
  9. susie

    susie Registered User

    Nov 30, 2003
    82
    shropshire
    Hello Kelly
    welcome to TP. This is a marvelous place to get info and support. You are going through emotions that many of us have gone through after diagnosis. My husband is 62 ,diagnosed 3 years ago after 8-10 years of "odd" behaviour. It is very hard to take it in at first and with all the information on the internet, it can also be frightening. Take it one step at a time and provide whatever supprt you feel able to to your Mum and Dad. They will be just as frightened as you.
    When things get tough, this is a place to have a moan! We'll be here for you.
    Regards
    Susie
     
  10. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hi Brandy, warmest of welcomes to TP. I am so sorry to read of your posting, it must be so hard for your mum. Try to stay strong for her and accept the changes as they come. I have found that this does make life easier to bear.

    As you have already witnessed some of the pitfalls associated with AD , i.e. your grandmother, I know this is not easy. "Day by day" as our dear Norman says.
    Regards, Connie
     
  11. Jude

    Jude Registered User

    Hi Kelly and Brandy,

    Welcome to TP to both of you. I hope we can all offer a lot of support to you both. Don't be afraid to ask questions or just drop in at any time. When it all gets too much to cope with some days, then TP is a wonderful forum in which to get it off your chest and find sympathy.

    Best wishes,

    Jude
     
  12. Kelly Blackburn

    Kelly Blackburn Registered User

    Dec 16, 2005
    2
    Nottingham,UK
    Thank you all so much !!!!!!!

    Hi Everybody,

    A belated thank you for all the wonderfull messages i recieved following my recent thread.I kept putting off logging on, i don.t know why.. after a good cry it actually makes you feel better doesn't it!!!!

    We,ve had a brilliant christmas and after all your good advice i savoured every minute i spent with my dad. He was on great form and i think he was savouring every minute too. After spending so much time with all my family(i,m one of 5) i realised most of us were in denial still. I'm probably accepting it the most as i,ve always been a little morbid!!

    We,re planning a big holiday this october and everyone is coming (about 18 of us) i just hope Dad will still be ok to enjoy it. Got to start saving!!!!! Also learning to drive this year!!, as i fear dad won,t have his licence for much longer. My mums never driven and wouldn.t want to so it,s the kick up the bum i need to finally get on the road at the ripe old age of 30!!!!

    Hope you all have a happy new year and thanks again for your support.

    :)
    Kelly
     
  13. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hello Kelly, thanks for bringing us up to date, sounds as if you had a lovely time.

    Go for the driving........I never learnt to drive until I was in my middle 40's, both my sons were driving before me. It is the one thing I am proudest of, and I always say a little 'thank you' to myself when I get behind the wheel ( and thats after 20 odd years).

    Happy new year to you and your family, Connie
     
  14. JANICE

    JANICE Registered User

    Jun 28, 2005
    23
    SOUTHAMPTON
    driving

    I thoroughly agree about the driving. I passed my test when I was nearly 30 but over the years since Keith and I have been married I had practically given up driving as he preferred to take care of that, being such a bad passenger!! Consequently when he lost his licence because of the AD I either had to get back in the car or get rid of it. I took the bull by the horns, very nervously I might add, and over the last year I have driven down to our caravan in Brittany three times and this weekend I drove from Southampton to Manchester and back to visit our daughter. We bought a satellite navigation thingy for ourselves as a Christmas present so I felt a bit more confident in case Keith couldn't remember the way and it was brilliant (although he did try and argue with it!!) I feel so proud of myself. I know a lot of people would probably say, well so what you drove to Manchester, but believe me if anyone had told me a couple of years ago that I would be doing all this driving I would have laughed at them, I really was very scared of going anywhere other than round our local roads. AD certainly changes all our lives and it has certainly given me the confidence to do a great many things I would not have done before Keith's diagnosis. Of course it goes without saything that I would rather have things back the way they were but I suppose I can say that in a strange sort of way I have almost benefitted from it.
     
  15. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Brandy,

    It is so difficult some days not to just break down and cry. I have 2 young girls of my own and I cant help think what my dads mental state will be when they grow up. I know how hard it was for me with my gran when I was young and I don't want them to feel the hurt that I felt when she couldnt remember me.

    My kids were only babies when mum showed first signs of dementia. Now they're in their teens. They don't remember mum when she was well. They are wonderful with her, helping walk her to the loo, feed her, cuddle her. They have grown up with her illness, and I think that it has made them more loving and accepting of people "as they are" than they might have been. They have learnt the importance of a smile, a stoke, a hug. Your girls will be OK. I grieve for the relationship that I have lost with my mum, and for the times we might have shared, just as you will with your dad. Your girls will love their grandad 'just as he is', and they have you to help them.
    Hope this is of use. Take care.
    Amy
     

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