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Thread: what a week ......

  1. #1
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    what a week ......

    Hello All,
    My wonderful Dad has been in hospital for the past week, rig is in and working beautifully but boy have we all been through a massive rollercoaster. Dad has coped with it amazingly but I also think it has hit him that life has changed beyond all comprehension and I also think he realises time is short. He has been asking to see fAmily and friends which he hasn't wanted to do since diagnosis.We are bringing him home on Tuesday and know that this going to be the final few weeks with Dad. The neurologist has said that with Dad's swift progression that he is likely to go to sleep one night and not wake up. We are not to watch him like a hawk or not sleep/eat but just make every moment together special. Little bit easier said than done but we will do it for Dad and then fall apart in the safety of our own family units.

    I wake up each am and just for those few short seconds I forget that my Dad is dying and then like a sledge hammer it hits me. Dad said he had a dream the other night that he was young and playing rugby again. My heart just broke and tears are not far away at all. Dad is in Bangor Hospital.and all.I.can say is the nursing care has been amazing and living 70 miles from the hospital they have given us peace of mind when we have left him.

    We've had some good memory moments at this horrid time and I am awaiting a contract from the hospital in order for them to reduce their sedation costs in theatre as I managed to bore Dad to sleep whilst they were putting his rig in! Dad thought it was highly amusing that I was in theatre scrubs and that the Dr and nurses were including me in all.the discussions and what I thought!

    Dad now.follows me everywhere with his eyes and seeks constant reassurance I think me winking behind a pretty nurse the other day caused a twinkle in his eye!

    Today is a new day and it's onwards and upwards with lots of special plans to be made and sorted. I manage periods of being so strong and then I feel so very very bereft and just can't understand why this disease is taking my Dad. No one deserves this illness I guess I'm.hitting anger stage as I have little tolerance for any little niggles or moans by anyone which is not me normally.

    Take care all of you. Xx

  2. #2
    Forum Member computatec's Avatar
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    Hi

    I have had my RIG for over a year now and it has extended my life. I feed overnight by means of a special pump and i have not had any problems at all. I gained weight rapidly and felt a different person. I hope your Dad has the same ,good experience.

    Clive
    Living with MND. There is a solution to every problem - never ever give up.

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    Hi Clive, could I ask when you were diagnosed with MND and pre rig what stage you were at symptoms wise? I am hoping that the rig if nothing else just makes Dad feel a little better in himself.
    Thanks for your positive words from your experience.
    Sarah

  4. #4
    Forum Member pete's Avatar
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    Hi Sarah,

    If you click on Clive's name, computatec, you can see a brief summary of his journey so far, he is and has always been a driving force on here and has researched many things that may help, hope this is of use to you.
    Pete
    All I need is a miracle

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    Thanks Pete x

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    Forum Member computatec's Avatar
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    Hi Sarah

    I got my diagnosis in Sep 2010. I was on NIV by 2011 and using the machine nights only. I refused the PEG as I was able to eat normally. Then my appetite disappeared and I started losing weight rapidly. Because of my breathing a PEG was no longer an option so I went in to Addenbrookes and had the RIG inserted. That was just over a year ago. I put on weight and now I eat three small meals a day as well.

    All my feed, giving sets, flushing syringes and the electric pump are provided by Abbott Nutrition.

    I hope this changes your Dad's life like it did mine.

    Clive
    Living with MND. There is a solution to every problem - never ever give up.

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    Hi Clive,
    Thank you for your reply and information. It all helps with the way different things manifest with MND.
    Dad was diagnosed in Jan 2013 and since then has gone from slurring of speech (we originally thought he'd had a stroke) with delay on conversation but fully aware of what we and he were saying. Plus choking/coughing/aspirating food.
    Dad has dropped 3 stone plus and has great difficulty with eating swallowing and his speech is now pretty non existent.
    Dad is able to walk very short distances bed to chair with walker and carer. After 9 days in hospital having had rig fitted we can see a slight improvement in his mental well being and are hoping that physically it may give him a few more weeks before he is wheelchair bound.
    Allsorts of new problems appear each day, no longer being able to write legibly, problems with toileting, washing etc but there are ways and means and we will make sure he maintains his dignity.
    The Dr's have said Dad's progression is very very swift for MND and that in 3/4 months he has undergone changes that happen generally over 2 years.
    I suppose it's really time, love & caring for Dad that will keep us all strong and his wonderful
    Spirit and dignified manner that will keep him strong.
    It is people like all of you on the forum that keep us all sane and know we have a safe protected place to ask questions.
    Thank you again.
    Sarah

  8. #8
    Forum Member Rory's Avatar
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    Sarah
    I am like Clive with symptoms and timing .The RIG was fitted about 18 months ago and when I couldn't eat last July, I use it twice a day for automatic feeds . No fuss , no choking, and it works fine. Along with the ventilator it keeps me here ( unless the missus decides to stand on the Nippy air tube if I am being naughty ! )

    Best wishes

    Rory
    New Year's resolution -not to get MND again !

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