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Thread: emotional challenges

  1. #1

    emotional challenges

    Living with mnd is without a doubt a challenge in its own right. But I am beginning to realise that the biggest challenge of all is not my own fears, but those of my young children of 8 & 10 years. How does a little boy and his sister even start to understand that their dad is slowly losing the ability to run and play with them. Let alone struggle to feed himself or dress. mnd is cruel beyond that of my own acceptance that my life is changing. Surely I am not alone with such huge emotional and very upsetting challenges. I welcome others experiences.

  2. #2
    Forum Member
    Join Date
    Nov 2014
    Hi CaravanMan - I can assure that you are not alone in your fears for your family - be they young to old. Tell them about MND - what it does to you and what the future might hold - engage with them now as you are but tell the what is likely to come. I told everyone of my family and friends and I think they are better for knowing - some will fall away because they won't know how to handle it - but most will support you in ways that you have yet to experience - and I can tell you - that is very uplifting - for you and for them.

    Tell them all.

  3. #3
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Hi Caravanman;

    Children normally are more accepting than adults.

    There is a booklet by the Mnda on the subject:-

    I hope it helps.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
    Forum Member WendyWooG's Avatar
    Join Date
    Oct 2015
    Hi caravanman
    My children are in their 20's but I have a four year old granddaughter who stays with us quite a lot. We don't go into detail with her but we are open and honest when she asks questions. She handles everything amazingly well. When we say I can't do something because I'm poorly she just adapts.

    I had to have a commode for a little while while we were sorting out the bathroom, she found that was hilarious and called it Nanas potty! She insisted on trying it out.....
    A sense of humour when around kids is essential, their honesty and acceptance is much easier for me to deal with than the shock and discomfort of the adults.

    Her favourite place to be is tucked up in my hospital be with me watching movies, she walks up and says lower the bed Nana I want to get on. When she stays with us she has breakfast in bed with me every day. She also has a little electric ride on car and is gleeful about racing me in my power chair. The thing to do is make lovely memories with your kids spending time with them adapting so you can still do fun if different things with them will help them and you cope. I can't run and play with her but I can read, watch movies and play games on the computer and have lots of snuggles. I honestly don't think it occurs to her that she may be missing out.

    Big virtual hugs and give yourself time to adjust.

    Wendy x

  5. #5
    I welcome all responses on this forum, never did I believe that the active life I led only last year would be taken from me and my family so quickly. I have 4 children from 30 years, 26, 10 and 8. All struggling in their own ways to understand what is happening to their dad. It is the hardest thing I have ever had to live with. Nobody can begin to understand the true depth to which this diagnosis impacts, unless like others on this form are actually dealing with mnd.

  6. #6
    Forum Member
    Join Date
    Oct 2016
    Andover Hampshire
    Quote Originally Posted by caravanman21 View Post
    How does a little boy and his sister even start to understand that their dad is slowly losing the ability to run and play with them. Let alone struggle to feed himself or dress. mnd is cruel beyond that of my own acceptance that my life is changing. Surely I am not alone with such huge emotional and very upsetting challenges. I welcome others experiences.
    How indeed. But there is a classic mistake we all make when looking at something big. We zoom out and try and look at the big picture.

    The things we fear often never happen and your surmising that you are going to suffer the classic MND symptoms and your forgetting that this is a one day at a time condition. Today, your not going to turn into TransFatty acid. Your going to be what you were yesterday.

    And the other mistake your making is your forgetting what its like to be like a child. Your kids wont care how this affects you. All they really want to know is that your still there dad and that you love them. Thats it. Just be yourself.

    Lastly. No one knows the future. And an MND is not like Cancer. We are all conditioned to fast progressing conditions like Cancer. Where the results are predicable. MND is not like that and although you have an MND you actually may not have it at all. There are many looky likey conditions like MND. And the diagnoses is hit and miss. MND is not predictable. It can progress quick or slow. It can start fast and stop. It can even go backwards and get better. So you dont know how your going to present to your kids in 1 month. 6 months or 6 years. No one can tell you for sure. All anyone can give you is averages. And no one is an average.

    So.... What I recommend you do is stop over thinking this. Take one day at a time. Learn all you can about this condition and make it your mantra to be a survivor by fighting it tooth and claw.


  7. #7
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi caravanman,

    Lovely replies from Wendy and Chris. I want to add my advice, if I may. (my kids were young when I was diagnosed)
    You're still their dad and always will be. Atm it's beyond difficult to see how your MND can be compatible with raising kids and maintaining a family life, BUT people do adapt. For sure it's not what the plan was but people are resilient!

    For the little ones;

    Be open and honest with them. Kids know when things aren't right.
    Let them be involved in your care; they'll like helping their daddy.
    As you get equipment, let them try it so they're not frightened of it. Even if door frames take a few hits!

    My own two are now teens and are happy, well-adjusted and very caring kids - with an impressive knowledge of ALS/MND

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  8. #8
    Hi Chris, thankyou so much for taking the time to reply. I totally understand what you are saying and I will do my level best to see things as you say. I spent my whole working life helping others as part of the emergency services. Never did I believe my real challenge lay ahead for me.
    Kind regards

  9. #9
    Hi Ellie, very kind advice and well received thankyou. I will remain positive and active with my children.
    Kind regards

  10. #10
    Forum Member
    Join Date
    Mar 2017
    Thank you for this thread!

    My dad has recently been diagnosed and although me and my sister (from his 1st marriage) are 30 and 28 he also has other kids of the ages of 13 / 11 / 10 / 4 / 2 / 9months - the last 3 he still lives with, the other 3 he barely sees and then myself and my sister see him often along with my 2 kids who are 5 and 3.......I worry so much what to tell them as he deteriorates.

    Thank you for that PDF guide, I will have a good read through talk to the children together about it and how we can help him. The hardest thing is the young ones jumping on him, at the moment Ive just been telling them not to jump on him or be careful but I guess thats not good enough, they will soon wonder why? Im struggling myself to comprehend it and accept it so maybe its harder when we are older, kids still accept everything adults tell them!

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