1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. James F

    James F Registered User

    Aug 3, 2006
    Ascot, Berkshire UK
    My first note, only joined up this afternoon although I have subscribed to AS for a few months now.
    MY lovely wife Linda was officially dianosed with AD about Christmas 2005 she is just 55, I am 52 and our two devastated daughters are 24 and 20.
    It has taken about four years for the official dianosis it has gone from Epilepsy to depression to stress back to Epilepsy coupled with AD.
    Linda lives at home and we now have a full time carer who looks after my wife very well. Uptil April I was looking after Linda and holding down my full time job but I promised Linda that I would never her let her go away - this is something that she worries about all of the time.
    Linda was a school teacher until about 18 months ago, now she is unable to open a birthday card, and it breaks my heart. Linda is always saying this is not fair on you, you are going to have to send me away somewhere even though I know that this is her worst nightmare.
    She takes Epilim (for the epilepsy), antidepressents, sleeping pills and Ryminal this all seems to be working well we are now going to introduce Ebixa to help her with her coordination.
    I just feel right now that any more bad news from anywhere would push me over the edge and I need to be strong for Linda and my two girls.
    It's really tough.
  2. dmc

    dmc Registered User

    Mar 13, 2006
    hello james

    welcome to TP

    so sorry to hear about your wife, just to let you know were all here if you need to unload anything ive only been here since march and i find it invaluable, you'll find you dont feel so alone and the advice people give can be a great benefit.
    we all know what its like to be "at that particular edge" ive come close to going over a few times:rolleyes:
    but you'd be suprised just how much "bad news " you can take there seems to be a popular saying around here its "one day at a time"
    look forward to getting to know you
    take care
  3. alex

    alex Registered User

    Apr 10, 2006
    Hi James

    I'm so sorry that you are finding it so difficult, your wife is very young and it must be so hard for you.
    As Donna says............so many of us have found ourselves on that edge but with the help of others on TP we managed to claw our way back.

    I found that the best way of coping was to not think about not coping (not sure if that makes any sense!) but if you take it one day at a time and don't think about the bigger picture you will get through this. With me it was more a case of not wanting to cope rather than not being able to cope. You might surprise yourself at how strong you are and how well you can cope.

    I wish i could do more to help your pain.

    Best wishes
    Love Alex
  4. Margarita

    Margarita Registered User

    Feb 17, 2006
    #4 Margarita, Aug 4, 2006
    Last edited: Aug 4, 2006
    Your be amazed now much bad new you can take and still not go over the edge or you go over the edge and just jump back up

    I say this because after my mother was diagnosed with AD, later on that year my daughter had a fit in front of me and was later diagnosed with epilepsy my daughter was in the middle of doing her degree she pass:) and now is going on to do her master .
    I found the first few years living with mum hard to cope with and the effect it had on my children. I know its different for your children as its there mum that has AD not there grandmother , but I talking as a daughter i no if I had my father still around just to share talk over my feeling about my mother I could of cope better , so as long as your children have you & you have them that’s all that matter .

    My mother is on Ebixa and it does help :)

    PS Took about 6 mouths before it made a different
  5. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi James F
    welcome to TP.You will find lots of support here,post whenever you need.
    Although my wife and I are much older than you and your Linda I can understand what you are going through.
    I promised Peg that I would never leave her and I have to stay strong to look after her.
    That is my big worry.
    You will cope ,I have coped now for 11+ years,there have been times when I thought I could go on no longer,but I did and so will you.
    Lots of friends in this big TP family,lots of help and support for you.
  6. MandyW

    MandyW Registered User

    Oct 11, 2005
    Daughters and their Mum's


    My Mum is a sufferer and has been ill since I was 22 (I am now 28) TP has really helped me so you should encourage your daughter's to join TP too. I will try to always reply to their posts as I have been through similar at their age and I know how hard it is to watch your mum slipping. It would be nice to read other people's opinions and experiences from daughters (in their 20's) point of view, maybe we could draw strength from eachother.:)

  7. May

    May Registered User

    Oct 15, 2005
    Hi James
    To use Norman's phrase, day by day. You will find you can be strong, for Linda and the girls. Some days it will be minute by minute or hour by hour but you will do it. Love will give you the courage and strength to carry on, but never forget, you need to take care of yourself also. Use TP for support, we all do and I can honestly say it's the folks on here that have saved my sanity at times.
    Take care
  8. Libby

    Libby Registered User

    May 20, 2006
    North East
    Hi James

    Just wanted to welcome you to TP, but in a way, wish you weren't in the position where you had to join (if you see what I mean)

    It's incredibly sad for all of you, but at least on this site, you know that everyone else is in some sort of similar situation and you can say whatever you want.

    Take care

  9. James F

    James F Registered User

    Aug 3, 2006
    Ascot, Berkshire UK
    #9 James F, Aug 10, 2006
    Last edited: Aug 10, 2006
    Hi Donna,

    Thank you for your kind words and offer of support.........:)

  10. James F

    James F Registered User

    Aug 3, 2006
    Ascot, Berkshire UK
    Thank you all, simply for just being there at such a difficult time.
    I love Linda so much.

  11. dmc

    dmc Registered User

    Mar 13, 2006
    hello again james

    how are things with you now?

    hope youve managed to keep away from that edge!!
    please dont be afraid to ask any questions thats bothering you you'd be suprised how many of us are going through the same thing.
    take care x
  12. HLon

    HLon Registered User

    May 30, 2006
    us too

    hi James,

    Thank you for sharing with us. I'm 26 and my mum has had early onset dementia for the last 5-6 years (she's now 58). My brother's 24 and my sister's 19. I noticed that you have two daughters in their 20's - do put them in touch with me if they would find it helpful. I've found it hard to find people of my own age who are going through this, and perhaps you find an element of that too (I know my dad has). At one point I think there was a network for pairing people up, but I think it's folded due to a lack of interest and so it makes me very grateful for this forum.

    My dad's somehow been managing throughout this time to look after mum. I can't speak for him, but I know I've thought many a time, including this weekend when I'm looking after her, how am I/are we going to cope. I suppose somehow we have, and we've got so much better at asking for help, and have learnt a huge amount. Sometimes it's so hard, which is when a forum like this is helpful whether to share the humour or to remember that others have been there too and are managing one way or another.

    Do send me a post if you want any tips, or thoughts on more practical aspects, or coping plans/strategies or whatever you'd like some advice on for you all at home.

    Thinking of you - from one family to another,

  13. James F

    James F Registered User

    Aug 3, 2006
    Ascot, Berkshire UK
    Dear H

    Thank you so much for your note.
    I will indeed pass your details to my daughters because right now they feel so lonely and in many ways helpless.
    They are devastated with what is happening to their Mother but also feel very sad for me and what the future might bring for me and my wife.
    They talk about when eventually they have children and how important it is to have your Mum to help and advise, more importantly the grandchildren not having the priviledge of meeting their Grandmother.
    We all get together either on a Friday or Saturday night and go out for dinner - it's always a very special night for us all.
    Linda is on Reminyl and just started on Ebixa. She just seems to be losing so much weight and looking so frail.
    Can you tell me more about your Mother and your thoughts, sometimes I just do not know what to say to my daughters. I have always protected them from everything but now I am completely helpless.
    Please stay in touch....

  14. mel

    mel Registered User

    Apr 30, 2006
    Hi James
    All I can advise you is to keep your daughters informed every step of the way...
    I'm much older...49...but my father cared for my mum until he died 18 months ago.My brother and I had no idea how bad things were until then....he blamed her sometimes odd behaviour on deafness,vitamin deficiency,diabetes....anything....Looking back I should have realised it was more than that but I was totally ignorant about dementia...
    If only I'd known the full facts at the time I would have helped more...and the guilt that I feel now is sometimes unbearable...
    Like you my lovely lovely dad was protective of me,my feelings,my family....but I think we could have made such a huge difference to him if only he'd shared it with us....
    Take care
  15. lisaw

    lisaw Registered User

    Nov 22, 2004

    Hi James

    I don't come here very often now, mostly because I always end up in tears! Just a brief history on myself, I just turned 27 last month and my mother has AD. She will be 59 next month and has had AD for 14 years now. All my family live in Trinidad, I moved to England 5 years ago. When I was 17 my dad left his job to look after her full time. I have one brother who is two years older than me but was living abroad at the time, when he came back our mum was a completely different person (due to the rapid deterioration) and he detached himself from there so it was just my dad and me. By the time I was 19 my mum was becoming more of a handful and she needed two people to look after her so I gave up my job and became her main carer. When I gave up my job my dad kind of passed the responsibility onto me because he could not cope. He turned to alcohol. He drowned his sorrows in beer and I was the one left to cope. I had to wash her, cloth, feed her and everything else. I started to hate my father. My mum would only sleep two hours a night and if I did not stay up with her she would cause all sorts of trouble. We had to take it in turns to do the night shift. After two years of this I thought I was going to have a nervous breakdown. Because we lived in Trinidad there was no advice on AD, there wasn't any medication recommended and she was just too much to handle. As she deteriorated I deteriorated, as well as our family. We used to be such a close happy family but it completely tore us apart. I didn't want to accept that it was time to put her in a home, I didn't want to have to visit her and deal with her saying "Can I come home with you", it broke my heart so I left Trinidad. I moved back to England (which is where we are from, we moved to Trinidad when I was 8). Mum has been in a home for 5 years now where she is very well looked after. You say that Linda has lost weight, I think that is just part of AD, my mum has always been petit, size 8-10, and a healthy 8.5 stone, but she dropped down to about 5.5 stone at one point.

    With regards to your daughters, talk to them, I wish I had someone to talk to. Talk about the good times, I cannot remember what my mum was like before she was ill because it all started when I was about 12, the first signs that is. Help them remember her as she was. Ask them how they feel, cuddle them, tell them that no matter what happens you will always be there for them and that you will deal with it together. My dad went on a 6 year bender and seemed to think that he was the only person losing something, he never stopped to think that his children where losing their mother. My brother is very bitter towards my dad, I don't think they will ever have the relationship they once had. In different ways we lost our mother and our father. My brother has not been to see my mother for nearly two years now despite working about 3 mins walk from her nursing home. He wants to remember her the way she was. My dad stopped drinking last december and is just starting to get a grip on his life but he is very lonely and cries at least once a day for my mum. How am I? I feel angry, not at my dad, I have forgiven him (how can I not... ?), I am angry at life, I am angry my mother has been taken away from me and couldn't be at my wedding this May, I am scared to have children because I never had a mother figure to follow example by. My mum is still in the nursing home, she seems content there, she has put on weight now and is bigger than I have ever know her, possible a size 12! She cannot talk and only responds to her name, however her eyes no longer focus. She can barely walk (and that's with assistance).

    Please I beg you don't shut your children out, grief will consume you, don't let it take over your life, make time for them, and make time for yourself. My dad has lost his confidence, social skills, sense of humour and everything else. Take one day at a time, and as difficult as it is hold onto your memories of the good days, because as time goes on they slowly fade. Keep them alive.
  16. lisaw

    lisaw Registered User

    Nov 22, 2004

    sorry I didn't realise how long that was
  17. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Oh lisaw, please don't apologise - your story brought a huge lump to my throat. A compelling story, and bizarrely, because I know you only through TP, I felt so proud of you!

    I'm going to be a bit weird and skip all the dementia side of things and just address what you said
    One should always think before having children because the responsibility is huge, but please don't discount the idea because you never had an example.

    The sensitivity and sense of your post above show that you are likely to be an excellent natural mother. ... as always, this is in my opinion.

    We almost made it to Trinidad and Tobago once but had to cancel the week before we were due to go because I wrecked my back. At that time it was my wife who was able to care for me. Some years later I was able to take up the baton for her dementia care, and still do so.
  18. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Lisa,
    My immediate thought was the same as Bruce's.
    Also, though you cannot remember your mum before she was ill, for 12 years she was your mum, caring for you and loving you - those are very formative years, and she will have past on her mothering skills, they may not be there in your conscious, but they are there!!
    Lisa, don't be fearful - you sound a very caring compassionate person - I am sure that when the time is right,you have all the skills needed to be a mum.
    Love Helen
  19. James F

    James F Registered User

    Aug 3, 2006
    Ascot, Berkshire UK
    Dear lisaw,

    Your note has given me strength to focus on my daughters aswell as my wife. You are a very strong lady, an inspiration to us all. You will be a wonderful Mother and your children will be so proud of you. You are right I am losing my wife and best friend but my girls are losing their mother the biggest loss of all.
    This time last year there was fear that Linda's AD could be genetic and whilst we waited six weeks for the results, my daughters were saying that they would never have children because of the pain they might have to go through if they suffered from AD- very difficult time. The results were negative so almost all is OK.
    Be strong.............

  20. lisaw

    lisaw Registered User

    Nov 22, 2004
    I didn't know there was a test you can do to see if the AD is genetic. I would like to find out for myself, is it tested on the person with AD or would it be tested on me and how do I go about getting tested?

    Thank you for your kind words about me being a mother, but that is a sore point for me. From age 13 or so I was the one doing the shopping, cooking, preparing lunches, housework etc. I carried on doing all that whilst caring for my mum and up until I left Trinidad, because of that I feel as though I have done my share of caring for people for now, and the thought of having someone totally dependant on me fills me with horror, I feel as if I have done the sleepless nights, the feeding, the bathing, clearing up mess, I don't think I will be ready for that for a long time.... if ever. I know it will be "different" but it's not something I can face.

    Thank you again, my thoughts are with you

    Lisa x

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