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Thread: A few questions

  1. #1

    A few questions

    Hi all
    I've had a flick through the forum and thought I would post a couple of questions I have regarding my dad's MND.
    So quick back story... My mother passed away 2 years ago and I am my dad's eldest daughter. I live about 100 miles away from my dad who was diagnosed with MND in Aug 2015. I do see him every 2-3 weeks or as often as I can (student finance doesn't enable me to get petrol every week!) He had symptoms for a good few months before seeing a doctor/ getting a diagnosis (kept putting it off as just a weak leg or something). Of course the first few weeks were abit of a whirlwind and Im just starting to get my head round everything that has happened and possibly will happen. My 17 year old sister also lives with me while I am at university (so the only other person who remains at home is my mother's mum, Dad has no family left whatsoever so its just me, my sister, my nan and my dad). I am very aware that I am the executer of dad's will and would be arranging the funeral (which I have no problem with of course). he is currently in a care home recieving respite care after breaking both his ankle and his leg after a fall.
    So my questions are:
    What can I expect in the future R.E. the different care providers?
    Do you think I should be at home when dad comes home to ensure he is getting the right care and over see everything (i still have another year at university starting september)?
    Is it too early or too insensitive to talk about medical power of attorney (adding in clauses to say that i would only get any power when a medical professional okays it, i dont want to come across like i want the power for any reason or be completely insensitive?)
    My dad seems to think things are alot better than they are (he cannot stand or move his legs and he talks about getting into the shower in the upstairs bathroom for example), or he will make a recovery from the muscle loss already occuring from being in the bed for 4 months so far so I am just wondering as to whether dad will actually gain muscle or the muscle wastage will be permanent?

    I apologise profusely for the length of this post and the amount of questions! I am pretty certain I could have posted tons more of them!

    Any advice or answers in any form will be greatly, greatly appreciated!

    Twentysomething x
    Last edited by twentysomething; 28th April 2016 at 18:04. Reason: spelling mistakes

  2. #2
    **** I also want to add dad is so reluctant to getting any help. For example he was referred to the local wheelchair provider for an electronic wheelchair. As he hasn't been home he had missed all the phone messages which I picked up and relayed them to him. He just said he wasn't going to ring them back as he doens't want a wheelchair, he is managing fine at home with holding onto the walls (which was prior to him breaking his leg so goodness knows what he is like now). Its very frustrating trying to talk to him adult to adult about his care when he still views me as his 'child'

  3. #3
    Forum Member Dude's Avatar
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    Hi 20+ Is it possible for you and your sister to go home to get Dad to accept his illness and sort out his short term & medium term needs. Dude xo

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    Hi there my name is jill jilly on here my dad passed away 4 weeks ago in the hospice he got a diagnosis very late as the neurologists thought it was something else that was causing my dad not being able to walk properly, I was lucky in away as I dont work at the moment so I cared for my dad full time as with his mnd it progressed very very quickly and from receiving his diagnosis in dec 20015 he died 3months later the doctors do believe he had had this for up to 2 yrs prior to his death, my dad did have a wheel chair which made life so much easier and also some aids and addsptations to his flat to help him get around better.
    Because my dad had als mnd (there are different types of this disease) he eventually lost the use of everything including his speach wich was really hard for him, he did end up in the hospice towards the end as he had alot of pain not everyone gets that though, they were really great also im not sure what atea u live in but sometimes the hospital had a mnd team attatched to it that can give u support and help for your dad and the family it might b an idea to look into what help and support is avalable for you and your dad in your area thats what I did .
    I hope you and your dad and sister get the help and support you need its an awful desese but together you will be ok and this forum is a really helpful place to get support and information all the best jilly bean xx

  5. #5
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    You might find it helpful to contact MND connect who will tell you about their range of information material. There is a lot to take in at once and, because we all progress differently, it is difficult to predict what will happen next. Some of us can seem stubborn when we don't accept help but it is sometimes because we are trying to be independent for as long possible. Unfortunately falls and broken bones are often the result.

  6. #6
    Forum Member Terry's Avatar
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    Hi 20+;

    Welcome to the forum. Sorry to hear of your dad's broken bones and his long stay in hospital.

    What can I expect in the future R.E. the different care providers?
    It can vary and he won't get much unless he asks for it. A lot depends on if he is eligible for CHC (continuing Health Care) or not, also his financial position.

    Do you think I should be at home when dad comes home to ensure he is getting the right care and over see everything (i still have another year at university starting september)?
    if dad wants you there and you can spare the time then that would be best for him. But you have to consider your life, you maybe would have to put back your studies a year.

    Is it too early or too insensitive to talk about medical power of attorney (adding in clauses to say that i would only get any power when a medical professional okays it, i dont want to come across like i want the power for any reason or be completely insensitive?)
    Yes, you have the right attitude, it can be a tough one to approach. If you can get him to make contact with his local hospice, they will try to make his quality of life better and are also good at giving advice on matters like this.


    My dad seems to think things are alot better than they are (he cannot stand or move his legs and he talks about getting into the shower in the upstairs bathroom for example), or he will make a recovery from the muscle loss already occuring from being in the bed for 4 months so far so I am just wondering as to whether dad will actually gain muscle or the muscle wastage will be permanent?
    If his been in bed for four months doing nothing then he would have lost most of his muscle. He might walk with some aids but it will be hard to put on any muscle.

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

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  7. #7
    Forum Member john's Avatar
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    Hi twenty something and sorry to hear about your situation. A good place to start is probably ringing the mnda connect line. They operate weekdays so today s the day. Presumably they will be shut Monday.
    Welcome to the forum. The answers to your questions may depend on having a bit more information regarding your circumstances. You say you live some distance from Dad and your younger sister is with you. Would it be possible for both of you to return to live with Dad?
    If you did would your University give you the time off to resume your study at a later date. If Dad does return home he will need constant support and may regain only a little of what he was able to do prior to his accident. You would probably qualify for a carer allowance which is currently 62.10 per week. Has anyone suggested a life expectancy for Dad? It may be that you are looking at a short term situation. Regarding the power of attorney then I would say yes this would be a sensible move. You do not need to use it unless the appropriate circumstances arise but better to be there and not needed than needed when it is too late.
    I hope you find a workable solution.

    John

  8. #8
    Forum Member Dude's Avatar
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    John my friend I can't believe you mentioned life expectency. Knock it off. Dude

  9. #9
    Forum Member john's Avatar
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    The young lady seemed very mature and sensible in her post and I just thought it was an aspect which would play a big part in her future planning Dude.
    Twentysomething I hope I have not misjudged you in mentioning life expectancy but if I have please accept my sincere apologies.

    John

  10. #10
    Forum Member Dude's Avatar
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    John Have we not condemned 'professionals' many times on this forum for guessing how long people have left to live. Dude

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