1. Expert Q&A: Living well as a carer - Thurs 29 August, 3-4pm

    As a carer for a person living with dementia, the needs of the person you care for will often come before your own. You may experience a range of difficult emotions and you may not have the time to do all the things you need to do. Caring can have a big impact on both your mental and physical health, as well as your overall wellbeing.

    Angelo, our Knowledge Officer (Wellbeing) is our expert on this topic. He will be here to answer your questions on Thursday 29 August between 3-4pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. seaurchin

    seaurchin Registered User

    Oct 24, 2009
    164
    My husband who is only 48 years old received a diagnosis of young onset dementia last week from an excellent and very sensitive consultant. We have a 7 year old daughter and whilst I feel devastated it didn't come as a complete shock because of our increasing difficulties over the last three years. One of the hardest parts I am coping with is my husband's indifference to and frequent lack of interest in our daughter which I know he sadly cannot help.

    Our daughter seems to be coping quite well and is talking to me and other family members about her father's illness. I have felt that being honest with her from the outset was a better way to explain what is happening but at a level to suit her age. I am making sure that I spend quality time with her and I am trying hard to keep her life and activities as uninterrupted as possible. Has anyone experience of caring for a husband who is ill and a young child at the same time and could offer any advice. Many thanks.
     
  2. Scottie45

    Scottie45 Registered User

    Jan 25, 2009
    1,409
    CoAntrim
    Hi Seahrchin

    Hello and welcome to TP,sorry you had to find us.What a terrible thing to happen to your hubby at such a young age,sorry i don,t have any advice for you reguarding your daughter but i am sure there will be others along who do have advice,take care Marian xx
     
  3. milly123

    milly123 Registered User

    Mar 15, 2009
    896
    England
    hello seaurchin so sorry to hear of your husbands doignoses at such young age i think you are right to tell your young daughter in your own way it was dificult to tell our small grandaughter what was the matter with grandad we also had to be very protective of her because sometimes he couldnt stand them making a niose and thought they were being naughty when they wasnt i hope you get the help you are looking for my heart goes out to you milly
     
  4. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,143
    Kent
    Hello seaurchin

    I am so sorry to hear of your husband`s diagnosis at such a young age. There are others on the Forum who are of similar age but only one who I can recall having such young children and I haven`t seen her online for quite a while.
    However I do hope you will soon receive help and support from others with young partners, and there are sadly far too many.
     
  5. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,265
    Female
    Dundee
  6. Norrms

    Norrms Registered User

    Feb 19, 2009
    5,285
    Male
    Torquay Devon
    Hiya

    hello and welcome to TP. I am only 52 myself and was diagnosed with early onset of Ad about a year ago. All my children are grown up but i dohave grandchildren and one great grandson ages ranging from 3 months to 17yrs old. Sometimes it is hard for me to cope with my grandchildren who i love dearly and would lay down my life for anyone of them, but sometimes, just sometines it all seems a bit much for me. But my wife and family all know its part of the illness. This ilness is so unpredictable that spending quality time with both your daughter and husband is the best thing i can suggest. Telling people early on is something you have done and as i did, it worked for me, so i wish you well, any questions, please dot hesitate to ask, very best wishes, Norrms and family xxxxxxxxx
     
  7. sah

    sah Registered User

    Apr 20, 2009
    332
    Dorset
    Hi and welcome:
    My husband was diagnosed earlier this year - and although he and my children(he's their stepfather) are ten years older-it does throw up a whole new set of issues. My son is 17 - living at home-and he finds the whole thing tough-as teenagers do with most things! I know it's not the same as your situation-but do shout if you need an ear. TP has been a lifeline-hugs coming your way.Sahx
     
  8. robertjohnmills

    robertjohnmills Registered User

    No Perfect Way

    Hi there.

    My Partener was diagnosed at 44 years of age. The dementia was of sudden onset and exclusively to his frontal lobes, meaning that his personality and behaviour changed instantly. His daughters were 15 & 17 years from his previous marriage and although not very close the effect emotionally was devastating to all.

    Interestingly his daughters also responded very differently. The younger withdrew completely, refusing to see him and going totally wild!! Whilst the older one became older than her years and took a keen interest in her father's care.

    I think every experience and every child will be different, but my personal feeling is that children are far more able at a younger age to accept and adapt. You have not hidden the saddness and greif you feel and your honesty with your child will help them understand it is nothing they have done wrong, but rather help you share and be your comfort as over time your husband and a wonderful Dad I'm sure, slowly slips away.

    All our love and thoughts with all three of you.

    Robert & Mark
     
  9. julieann15

    julieann15 Registered User

    Jun 13, 2008
    2,012
    Leicestershire
    Hi
    My sons are 17 and 12. Unlike you it is their granny that has AD. I have at all times been totally upfront and honest with them with regard to mum's AD. To such an extent now that while we are visiting mum in the CH they are comfortable. I thought one of the ladies was going to kiss my younger son on Friday. As she lent towards him -he offered his hand and said it was nice to meet her. She shook his hand and introduced herself and he did the same.:) My older son saw me telling C who was looking for her coat downstairs that she had probably left it on the back of her door- she wandered off down the ground floor corridor in search of her room muttering yes that was where she left it.;)
    They are both aware of what possibly lies ahead as many in the CH are further along the line?:(

    Glad you have found us

    Love Julie xx
     
  10. seaurchin

    seaurchin Registered User

    Oct 24, 2009
    164
    Hi,

    Thank you to everyone who gave their time to reply to my message. I have read the suggested factsheets and I now feel much happier that my approach with our young daughter is a reasonable way to help her to understand what is happening to her beloved father. Maybe she will learn valuable lessons for her future and I don't feel quite so alone as I did yesterday. Your kind words and advice is much appreciated x
     
  11. larivy

    larivy Registered User

    Apr 19, 2009
    5,225
    essex
    hi sorry to hear about your husband but you have come to the right place the people here are great and they will all be here for you welcome to TP
     
  12. Westie

    Westie Registered User

    Hello

    Hello Seaurchin,

    I'm so sorry about your husband and understand what a devastating effect this has had on you. My husband, Peter, was diagnosed 3 years ago with Fronto temporal dementia at the age of 51. Our children were 13 & 9 at the time and had already lived through several difficult years of their Dad's completely changed personality/behaviour. Like your husband, he was/is distant and uncommunicative towards them...appearing uncaring and showing no interest in anything they do. The hurt I feel on their behalf has been one of the hardest things to bear.

    But you are right to be honest with your daughter. Let her know that her Daddy can't help his behaviour and that he is ill. She will amaze you with her ability to cope and adapt....probably better than you sometimes!! I think it is important that she has people she can talk to openly about her Dad. My son wouldn't talk to any of his friends about Peter - still hasn't - but relaxed in the company of family who fully understood Peter's condition. I guess he didn't feel the need to 'explain'. My daughter was far more open about it, telling friends about her Dad. She was/is more accepting of his condition and is the best of all of us at communicating with him now.

    Keeping up her normal outside activities/interests will help both of you but try to accept that some things will have to change to adapt to your husband's needs. Both my children have time consuming outdoor activities which have given them something really positive and enjoyable to focus on away from the home environment. I asked other parents/friends for help with transport, collecting etc. as i couldn't always be there myself. It's very hard to ask for help, but once I'd plucked up the courage I found people were willing to help.......almost relieved to be able to do something practical.

    You are bound to be worried about the effect of this on your daughter and , as a Mum, you want to protect her from it all. With your love and support though, she will cope with everything and make you so proud. Try not to look too far ahead, live for the present and make the most of the good moments.

    Mary-Ann
    x
     
  13. seaurchin

    seaurchin Registered User

    Oct 24, 2009
    164
    Hello Mary-Ann,

    Thank you for your message. Your words have brought me a great deal of comfort and I am sorry to hear that you have and are experiencing similar circumstances to ours. I am going to try to stay positive and like you say, take it a day at a time. Thank you so much. Helen x
     
  14. Rosie

    Rosie Registered User

    Jun 10, 2004
    235
    South East Wales, UK.
    Dear Seaurchin, as others have said, welcome to TP. I have been a member since 2004, and found this forum my lifeline when my Mam was diagnosed with AD, i know your circumstances are different, but my Mam was diagnosed quite young with AD, sadly my Mam passed away September 26th & i log on here most days to read postings & get valuable help & support when i need it. You will get loads of advice & support from the lovely, caring people here & no doubt make some new friends as well. Hope you find strength to cope, take care luv & hugs Rosie x x x
     
  15. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    My husband was diagnosed at 53 when our children were 6 & 8

    Dear Seaurchin,

    I'd just like to add to the comments above and let you know you're not alone. As I know this is how I felt when my husband was first diagnosed. No one else seemed to be in the same situation and I felt (wrongly!) that they could never understand what we were going through. I know that it is different when it's the children's daddy and I still don't think unless you're in that situation yourself you can't fully comprehend the implications. BUT everyone touched by dementia is trying to get by the best they can and they are able to empathise with most of what you're facing and offer help and support.

    When John was finally diagnosed we sat the children down and explained things as simply as we could, giving them time to take it all in and ask any questions. I have continued to give them both, individually and jointly, opportunities to express how they are feeling and answer any concerns.

    The older one has been more affected than the younger one, in some ways this is due to his nature. But this wasn't helped by the fact that John "took against" him. Sadly this changed to physical aggression and I took the decision that John had to go into care. This was earlier in the year.

    John no longer knows who any of us are, the aggression is sort of contained.

    The boys are I are now moving on with our lives they have said that they don't wish to visit their dad and I respect this, They are aware that I go but I don't mention it unless they ask (this is what they have requested I do).

    I have now got back the happy boy I lost for awhile. The sadness behind his eyes nearly broke me and I still feel I kept John at home too long. But it was a terrible balancing act that I wouldn't wish on anyone, caring for my husband as long as I could and caring for our children.

    If there is anything else you would like to know please send me a PM, I don't come on here that often but I will check.

    Take care of you and your family
    Love
    Jackie
    x
     
  16. ness688

    ness688 Registered User

    Sep 9, 2009
    17
    cornwall uk
    Dear Seaurchin,

    Firstly Im very sad to read about your lives , I only wish I had a magic wand to take it away .

    I am very new to this and to be honest dont know the right words to say to you .My husband is 51yrs old and just been diagnoised with vascular dememntia but it has effected his frontal temple badly .I do have some simular problems with his ways but greatfully our children are older but dosnt make it easier .

    His mood swings are horrid especially when your very used to a person that is very placid and has never shouted at you for 25yrs. he treats use badly and says the most horrid things . The kids cannot understand that he comes across as a child and not the father they looked up to , which is very sad .


    All I can do is say I think about you and wish you well . My eyes have been opened very fast and cant take it all in .

    Im reading here all the time about young dementia and didnt even know it excisted .

    Take care of you and your family
    kind regards
    Ness
     

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