1. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Hello

    I'm Linda and my husband has dementia. He was diagnosed a year ago and has been on aricept since last September.

    I have recently joined the Alzheimers and Dementia Association and attended two informal carers meetings which were very helpful. I am very impressed with the help that is available (once you know where to go that is).

    Hope to chat with some of you soon.

    Linda
     
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Linda

    welcome to TP and please post as much as you need! :)
     
  3. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    Hi Linda
    welcome to TP.
    Post whenever you feel the need
    Norman
     
  4. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Hello Linda, welcome aboard. Connie
     
  5. katieberesford

    katieberesford Registered User

    May 5, 2005
    114
    south wales
    Hello I'm new too

    Hello Linda

    I'm Katie and my husband has dementia. He was diagnosed three years ago at the age of 54. I still work full-time and just about coping with everything this terrible illness throws at us.

    Hope to speak to you again, as we are two new birds.

    Katie
     
  6. Anne54

    Anne54 Registered User

    Sep 16, 2004
    147
    Nottingham
    Hello Katie
    I live in Nottingham. Welcome to TP I hope you find it as useful as I do.

    Hello Linda
    That goes for you as well, I hope you will both post when you feel the need.

    Anne
     
  7. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Thanks for the welcome

    Thank you Ann Katie Connie Norman and Brucie for welcoming me.

    Katie seems we made a good choice joining this site!

    On Wednesday I am "working" at Asda for awareness week.

    Katie and everyone have you found that a lot of your friends no longer visit or call? I found this hard to deal with, thought I was doing the right thing telling people as my husband finds it difficult to converse, and now feel maybe I should have waited longer.

    Linda
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Linda

    unfortunately, you will find that friends - relatives too - will start to disappear, except for the ones who are worth knowing in the first place.

    My own feeling is that it is best to be up front about what is wrong as soon as possible.

    That way friends and relatives can at least try and realise what is causing some of the strange behaviours. Then they can either accept it, and adjust their relationship with your husband, and of course with you....... or they won't be able to handle it and you will not see much of them any more.

    The ones that remain need to treat your husband as if he is entirely normal. No talking loudly at him as if he is deaf, or an idiot. Then they need to fit in with his world, on a day by day basis. As do you, of course.

    Continue to do as much as you can that is normal for you both, until you find that is not possible.

    There's no good way to experience dementia of course, but I have found it very difficult to handle having a young wife [Jan was 51 when things started to go adrift] who has dementia. There are challenges for younger people that don't happen for older people - just as older people have challenges that we don't have. The key similarity between the two groups is love.
     
  9. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    I so heartily agree withBruce. Tell it like it is. If you are going to loose them as friends they will go whatever, but those that choose to remain, at least know a little of what to expect.

    We have been out to lunch today with a couple of Lionel old schoolfriends. I quickly realised that they could se a difference in him, so quickly brought them up to speed. Lunch passed off beautifully.

    I am always upfront with people. I find it is the best way. Connie
     
  10. katieberesford

    katieberesford Registered User

    May 5, 2005
    114
    south wales
    Morning Linda

    I think we will be ok now we have folks to chat to.

    Thanks to everyone for making contact. Never done this before.

    Regarding your question about friends no longer visiting. Yes is the answer! Friends of 25 years no longer come round and I personally find this very hard. I am very lucky that I have a mum and dad and two loving brothers and one sister (though she does live in Norway) who care about David and myself. We told all our friends and family as soon as we got the diagnosis, though this took nearly six years in coming. But it was when we got the diagnosis that everything changed. Folks who we thought would run a mile have been the most supportive and pop round and keep an eye on David when he's mowing the front lawn yet again! We have the shortest and most looked after front lawn in Ravenshead!! but it keeps David happy.

    I would hope that I would be more understanding if the tables were turned and it was one of our friends that had this terrible illness. Anyway I think there is a saying "theres nowt so queer as folks" or something like that.

    Take care. Hopefully we will make other friends who are much more understanding.

    Katie x
     
  11. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I found it very illuminating to see who headed for the hills, never to be seen again, and who stuck by us.

    It was quite a surprise in some instances.

    I had a very clear stance..... if they didn't stick by Jan, then I wanted no more to do with them, even if they had originally been my own friends, not Jan's.

    If nothing else, it helps me reduce the Christmas card list.. ;)

    PS perhaps the most surprising was a very very old friend of Jan's, now widowed, who was driven to the assessment unit to see us by her daughter - one of the main BBC TV weather forecasters. Jan's friend had not seen her for 25 years because she lived up north, but she took the first chance to drop in, when she came south to visit her daughter.
     
  12. JANICE

    JANICE Registered User

    Jun 28, 2005
    23
    SOUTHAMPTON
    Friends


    Hi Katie (and Linda)

    My name is Jan and I too am new to this site. I must say it is brilliant to read messages like yours and know that I am not alone in so many things that are happening to us. My husband, Keith, was diagnosed last March at the age of 56 and our world seems to have fallen apart from then on. Like you I have friends, one of whom I have known for 50+ years, who don't want to know us now, she only lives in the next street but on Keith's birthday and our anniversary this year she came round in her car at 6.00 in the morning to put cards through the door rather than have to face us!! With friends like that who needs enemies!

    But to compensate we also have fantastic friends, some of which we have only known for a very short time, who are absolutely wonderful and can't do enough for Keith. I get very embarrassed when we go out and his conversation doesn't make sense sometimes or he gets snappy and even rude with them but they just laugh it off and ignore it. Those are true friends. I work full time at the moment and everyone at work has been absolutely brilliant and so understanding.

    Hope to hear back from you sometime.


    Jan
     
  13. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Off the visiting list!

    So it is a universal problem this friends no longer visiting!

    When I explained to friends and relatives about Vic's condition I asked them to treat him exactly as they had before not ignore him!!

    My family have been very supportive apart from a few unguarded comments like "you don't want to get invoved in support groups" and "you'll have to be careful now as he will get very violent". However his own family no longer make contact unless I do, but to be fair a lot of them live far away.

    Last year the day he was told he could no longer drive was awful I knew it would come but was not expecting it when it did and hadn't prepared him for it. It was worse because his job had been HGV driver although he had early retirement some years ago, however he accepted it and fortunately I drive.

    Thank you all for your replies.

    Linda
     
  14. JANICE

    JANICE Registered User

    Jun 28, 2005
    23
    SOUTHAMPTON
    Hi Linda,

    My husband lost his driving licence last year and I think that is the one thing that hit him hardest of all and like your husband it was very quick, they really don't give you much warning which I think is very unfair. We also found that we had a lot of conflicting information about driving, a lot of people told us that they knew of Alzheimer sufferers who were still driving or had driven for years after the diagnosis so that gave us false hope and it came as a great shock when the letter arrived telling him to send back his licence. It must have been worse for your husband as driving was his job. Keith is still very bitter and upset about the driving. Unfortunately he is the world's worst passenger so it's not easy for me driving him about as he is always trying to tell me what I should be doing!! Even worse is the fact that we go to France several times a year and I have had to start driving down there which was a bit hair-raising to start with. I think this is the cruellest part of this illness that it seems they lose everything at once - job, driving, indepence etc. They think Keith is suffering with depression as well at the moment but really it's no wonder they get depressed with all they (and we) have to contend with.

    Jan
     
  15. CraigC

    CraigC Registered User

    Mar 21, 2003
    6,630
    London
    Hi Linda,

    The driving is the first big upset that many people in the early stages of Alzheimer's to contend with. It such a big chunk of independance taken away at such a difficult time in your life.

    I would like to make a comment on one of your quotes from a friend RE "you'll have to be careful now as he will get very violent". Just to let you know that everyone reacts differently and many people do not get violent or aggressive. My dad has had Alzhiemers for six years and I can honestly say that he has never had an aggressive moment. Sure he says things that you would normally expect, but never been nasty about anyone. It really depends on the individual but no one should make you feel that aggression is an automatic sympton of alzheimers.

    Kind Regards
    Craig
     
  16. daughter

    daughter Registered User

    Mar 16, 2005
    824
    Hi Linda,

    My mum isn't one for going to support groups and she often gives the monthly meeting a miss because she feels she might get upset (I know that's where you're allowed to feel safe about getting upset but I understand that she'd rather not.)

    When she does go she nearly always comes back feeling a bit better, talking with people having gone through, or are still going through, the same things as her. I have been to the occassional meeting myself (when Mum didn't want to go alone) and found it helped me too. They also go out for meals and Mum has a great time with new friends.

    I guess, like everything, it's don't knock it until you've tried it!

    Best wishes,
     
  17. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    Thank you all once again for your replies.

    Re the driving luckily Vic is a very accepting person and it was the consultant who dropped the bombshell, maybe this was a good thing as I met a lady at the support group whose father in law would not accept he could no longer drive so they had to disable his car in case he tried!

    I bought us railcards and we use the train a lot, it certainly helped at first, I made a big thing about us both being able to look around and enjoy the scenery. He now automatically gets in the passenger seat when we do go in the car.

    As regards the "violence " comment Craig thank you for your input. Vic just seems to have got quieter and quieter, but he has always been a quiet gentle person a listener not a talker which is why it was only me that realised something was wrong!

    It just seems sometimes other people are too free with their "doom and gloom" comments.

    Linda
     
  18. Jeanette nz

    Jeanette nz Registered User

    Jun 8, 2005
    17
    Dunedin New Zealand
    Hi everyone
    I am 49 and have early onset alzheimers. I think the driving issue is handled differently in each country. I live in New Zealand and my neurologist had my driving assessed by an occupational therapist who felt I was still safe to continue driving so I do. The only skill I have lost is my ability to parallel park which I now avoid. I have also spoken to people affected with Alzheimers in America, one were diagnosed eight years ago and are still driving.

    I do however ask for constant feedback from my teenage daughter to make sure she feels my driving is still safe as I would hate to hurt anyone. I have been driving for 34 years and is very automatic and my long term memory has not been impaired yet, just short term memory. I can't imagine losing my ability to drive but I know it will come eventually.
    Keep smiling :)
     
  19. Rosalind

    Rosalind Registered User

    Jul 2, 2005
    203
    Wiltshire
    My husband last drove when we were on holiday in Crete - and disappeared for 36 hours! Was found eventually, having damaged hire car and hired another one, perfectly happy but not that aware of what was going on. This is thought to have been due to more small strokes, and his vascular dementia (such a shame one can't shorten this usuing initials, but gives quite the wrong impression) got worse afterwards. He was allowed to drive again, a few months later, but to my astonishment did not want to - this is a man who automatically got into the driving seat when we went out, and used to make his living driving from UK to Nepal and back.

    Re friends, they do say that to have a friend you also have to be a friend, and dementia does seem to make people very self centred and unable to pick up on conversations, or read signals from others in social situations.

    For my own sanity, I keep up with quite a lot of people by e mail, and by myself, and limit joint social gatherings to small groups at home and trips to local pub.
     
  20. Linda Mc

    Linda Mc Registered User

    Jul 3, 2005
    1,881
    Nr Mold
    #20 Linda Mc, Jul 9, 2005
    Last edited: Jul 9, 2005
    I too have found e mailing to be a great help as it doesn't matter what time of the day or night it is you can "talk". :)

    It is especially useful as I have sisters in Australia and perhaps if I am awake late at night it is morning for them!

    I am going to hold a fund raising event in my home next month and hope to make more people aware of how vulnerable we all are with regard to this tragic illness. :confused:

    I want to try to give a little back for the support I have received from my local branch and now too on this site. :)

    Linda
     

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