1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. Kelp222

    Kelp222 Registered User

    Jun 1, 2008
    9
    Vermont, US
    Hi Folks,
    This is my first post. I'm 46 and my former partner is 54. She has had memory struggles for many years but only got diagnosed a year ago after having a seizure and another PET. She hasn't been able to work for at least 5 years.
    About 2 years ago we decided to live separately, after 19 years together. We have 2 kids, both 11 years old and parenting was becoming a nightmare together.
    We are still very close and we do our best to raise these kids. She is not able to get them to school or fed and bathed regularly so I have the kids 99% of the time. I'm having a hard time watching the kids get upset with her or be disrespectful when she makes mistakes or forgets to show up. I don't want them to be wracked with guilt when she dies but I also don't want them focusing on that inevitability.
    Do any of you have experience with helping kids through a similar situation? Thanks, Kelly
     
  2. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Kelly,
    Welcome to Talking Point.
    Firstly, do you have any source of support at all?
    Feeling guilty is so sommon and we all experience that but you must know that you are doing your best for everyone concerned.
    Are the School aware of the situation?
    More people will come on line to offer you support.
    We are here whenever you need us.
    Best wishes
    Christine
     
  3. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Kelly,
    How aware are your children of their mum's illness? I dont know if there is any literature written for kids, to help them understand dementia...maybe someone else will have the answer.

    I know that there are several members of tp who have young families....maybe they will be able to share with you how they are coping.

    Love Helen
     
  4. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,110
    Toronto, Canada
    Kelly,
    I think you should make the children aware how the illness is affecting her, so that they (hopefully) will better understand and not get upset when she makes mistakes/forgets.

    I don't think you need to go into the entire prognosis at this time. But I think you should try to help them have good days with her, have them create happy memories for themselves.

    Plus, children understand more than we give them credit for. You know them, you'll know what they can absorb now.

    Take care & let us know what happens.
     
  5. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200201&documentID=108

    http://www.mentalhealth.org.uk/publications/?entryid=45416&EntryId5=38715&p=10

    These two sheets might give you some ideas of how to approach the problem. The first is the factsheet produced by the AZ society and the second is a booklet "The Milk's in the Oven" which tries to explain the problem.

    Mine were a lot longer but I found so long as I explained to them that "nana's brain wasn't working properly" it helped.

    Hope these give you some help. It is so very difficult to explan to a child when you find it hard to deal with yourself.

    Love

    Mameeskye
     
  6. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    No bones about it, your children are at a difficult age ..... younger children can 'shrug things off' (or simply not have the cognitive ability to take things on board which is in a sense a blessing) .......the pre-pubescent and teenagers are already raging with their own insecurities ..... and need stability.

    You are already giving that by showing how much you care. And that's what kids need to know - whatever other turmoil is going on their world - they need to know they are 'Number One'. The important thing here (IMHO) is that those kids understand why they are 'let down' sometimes ... not because they are not loved - but because your ex-partner has issues which prevent her from caring for them in a way a parent normally would ..... it seems more cruel not to attempt an explanation than for them to feel 'abandoned' .....

    I think we have a very difficult path to follow in terms of allowing them respect, allowing them to participate, protecting them, yet sharing as much information as they can be reasonably expected to take on - without patronising them ....... (OK - a bit of air-brushing doesn't go amiss!) ....... and giving them respect too for their own needs - that they need their sleepovers, their Playstations and to live their own lives too .....

    As with much else in parenting, trust your instinct ...... you know your kids best, what to tell, how and when .......

    Love, Karen, x
     
  7. Kelp222

    Kelp222 Registered User

    Jun 1, 2008
    9
    Vermont, US
    Thanks

    Thanks for all of your responses. I particularly enjoyed "The Milk's in the Oven". I guess it is true that there are no universal answers, at least not answers that will make things okay. As always, I'll continue to follow my gut and hope for the best. Thanks again. Kelly
     
  8. sarah<3

    sarah<3 Registered User

    Apr 12, 2008
    24
    Essex
    hi
    well im 16, and my aunty has alzheimers
    i dont really know what to sugest, apart from talking to them
    thats what im finding really hard at the moment, my parents not talking to me about any of this
    best of luck
    xxxxxxxx
     
  9. LizP

    LizP Registered User

    Mar 6, 2006
    10
    Hi Kelp222,

    Whilst I'm afraid I can't offer any concrete suggestions about how to manage things, <Sarah3's advice above seems very wise - maybe just keep talking and give them opportunities to air their feelings and concerns.

    I did see a DVD a while ago produced by the Alzheimer's Society, in which a number of children discussed their experiences of a member of the family having Alzheimer's. I wonder if this might strike a chord with your own children.

    It's called About my Grandfather About my Grandmother and can be found to order here.

    http://www.alzheimers.org.uk/downloads/2007_publications.pdf

    Good luck and best wishes,

    Liz
     
  10. jackie1

    jackie1 Registered User

    Jun 6, 2007
    238
    Cheshire
    Hi Kelly,
    First apologises for not replying to this thread earlier. I tend to come on to this site in fits and starts.

    My husband has alzheimers, he is 55 and was diagnosed 2 years ago. We have two children 10 and 8. I took to the decision to tell then that there daddy had an illness when he was diagnosed. To begin with I just used simple phrases like daddy has a problem with his brain. I kept the words alzheimers and dementia out of the loop for quite some time. I explained that there were reasons for his behaviour and lack of abilities and that we all had to help him the best we could.

    I also told their school the same day I told them so that they could be aware of the reasons if there was any change in their behaviour and support them as necessary.

    I regularly check with them about how they are feeling but without making it an issue. About a year ago the older one started asking questions. These I answered with total honesty and with plenty of re-assurance. The younger one has yet to ask but as he's as sharp as a needle I think he has probably worked it all out for himself, he is also much more resilliant than the older one.

    I know that they both worry about their dad but I do try to keep things as normal as possible for them. But I do know that I am more snapppy than I used to be and I struggle to summon the energy to run around playing football. But I do my best.

    All things considered I feel that they are coping really well.

    If there is anything else you would like to know send me a private message and I will do my best to help.

    Love
    Jackie
    xx
     
  11. kemasa

    kemasa Registered User

    Jun 25, 2008
    3
    Queensland, Australia
    I am all so new to this, so I wont try to tell anyone how to deal with anyones problems as I believe every case is different, and you are the only people that can understand your own position.

    However I have trouble with:-
     
  12. Kelp222

    Kelp222 Registered User

    Jun 1, 2008
    9
    Vermont, US
    Just to clear some things up...We are totally honest with the kids about A's disease. They've seen a great aunt die of it so they have some background knowledge. I want them to know what's happening so they can be understanding and so that they will grieve as we go. It's just a difficult balance for me between being having them fully aware and not having them fully depressed. Does that make sense? I want them to have as normal and happy childhoods as they can and this is a terrible thing that is happening. I'm not sure how much of the disrespect is a result of inner anger or pain or if it's pure frustration. I'm doing the best I can and you're right, every situation is different. Kelly
     
  13. laura92

    laura92 Registered User

    Aug 28, 2007
    47
    Bucks
    hi, im laura, i've just turned 16, and lost my dad last november, shortly after my 15th.
    from being 13 to 15, my dad rapidly deteriorated.
    i was at an age where everyone kept the details half and half and for the first year i was built up of nothing more than hate and anger, and i believe now that's partly because i didnt understand. me and my dad had pretty much no relationship through this time, and never got that back by the time he died. i regret them years, because everyone thought i was too young, and i was hearing bits and pieces.
    my best advice to you, is to make sure your children dont lose that bond with their mum, and try to keep them updated, i know they are younger than i was which is where sugarcoating the truth comes in handy. teenagers dont always deal with things well and if they're fully in the know throughout when they reach teenage years you wont have the added worry of hormones and understanding.
    but everyone is right as a mother you can only trust your instinct, and i hope in the end whatever you choose works out best.
    good luck.
    laura
    xx
     

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