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My poor Dad
Hi,
As I've mentioned before my Dad was diagnosed with Motor Neurone Diease the day Brendan was born and has been going down hill rapidly ever since. He got taken into hospital a week last Monday with a suspected chest infection and his oxygen levels were very low. They put him on a machine to assist his breathing and gave him antibiotics to clear up the infection and all looked like it was going well at first. Then a few days later he took a sudden turn for the worst and his oxygen levels dropped massively. My step Mum was calledto go in asap as the hospial feared the worst but once they put him on his breath assist machine again he picked back up and surprised everyone. Things seemed to be going ok again and they were talking about letting him go home until Monday when his breathing got bad again and his right lung collapsed. It was touch and go and we were warned that he may not make it through the night. My brother said it was very upsetting to see him as he was struggling to breath so much and kept panicking as he was gasping for air even with the breath assist machine. The consultant has said that basically there is nothing they can do apart from keep him comfortable as this is the late stages of the Motor Neurone Disease so it could be a matter of hours or days until he passes away.
He is now on a morphine drip and is being given a mild sedative to try and help him relax and not panic so much with his breathing.
I'm absolutely heartbroken that he has gone down hill so fast and that it is unlikely he will ever get to meet Jacob. We had already sent off for Jacobs passport so I called the British Embassy (where we have to apply for the passport over here) to see if they could do anything to speed it up under the circumstances. They were fantastic and said they would see what they could do, then I got another phone call from them ten minutes later saying it would be done that day and in the post to us. That was yesterday afternoon so hopefully it will be with us tomorrow so we can look to book a flight on Sunday (there aren't any flights on a Saturday) and get over to see him if we are not too late.
I'm not sure if any of you have known someone with Motor Neurone Disease but it the most horrendous and cruel condition you can imagine and I wouldn't wish it on anyone. It is basically the signal from the brain to the muscles that stops working so your muscles deterioate. My Dad has the type that affects your upper body first which unfortunately is usually the faster progressing one. He has gone from being happy and healthy just two years ago to now having no strength in his arms, little movement in his fingers, having to have a tube fitted directly into his stomach to be fed as his swallow reflex is so poor he would choke if he tried to eat, he has been unable to speak since just before Christmas (the thing I have found the hardest), weakness in his legs, and now it has reached his lungs. The worst part is that mentally he is still there so he is basically becoming trapped inside his own body.
He is only 60 years old and I am so sad that he never got to play with his Grandchildren, even though he has seen Brendan he had no strength in his arms to be able to play with him or even hold him unless he was propped up in a chair. He was looking forward to becoming a Granddad so much too
Sorry for such a depressing post, I just wanted to vent really as I know it can help writing things down. My head is a bit of a mess with it all at the moment and I am so grateful I have Brendan and Jacob to distract me and keep me smiling. xxxx
As I've mentioned before my Dad was diagnosed with Motor Neurone Diease the day Brendan was born and has been going down hill rapidly ever since. He got taken into hospital a week last Monday with a suspected chest infection and his oxygen levels were very low. They put him on a machine to assist his breathing and gave him antibiotics to clear up the infection and all looked like it was going well at first. Then a few days later he took a sudden turn for the worst and his oxygen levels dropped massively. My step Mum was calledto go in asap as the hospial feared the worst but once they put him on his breath assist machine again he picked back up and surprised everyone. Things seemed to be going ok again and they were talking about letting him go home until Monday when his breathing got bad again and his right lung collapsed. It was touch and go and we were warned that he may not make it through the night. My brother said it was very upsetting to see him as he was struggling to breath so much and kept panicking as he was gasping for air even with the breath assist machine. The consultant has said that basically there is nothing they can do apart from keep him comfortable as this is the late stages of the Motor Neurone Disease so it could be a matter of hours or days until he passes away.
He is now on a morphine drip and is being given a mild sedative to try and help him relax and not panic so much with his breathing.I'm absolutely heartbroken that he has gone down hill so fast and that it is unlikely he will ever get to meet Jacob. We had already sent off for Jacobs passport so I called the British Embassy (where we have to apply for the passport over here) to see if they could do anything to speed it up under the circumstances. They were fantastic and said they would see what they could do, then I got another phone call from them ten minutes later saying it would be done that day and in the post to us. That was yesterday afternoon so hopefully it will be with us tomorrow so we can look to book a flight on Sunday (there aren't any flights on a Saturday) and get over to see him if we are not too late.
I'm not sure if any of you have known someone with Motor Neurone Disease but it the most horrendous and cruel condition you can imagine and I wouldn't wish it on anyone. It is basically the signal from the brain to the muscles that stops working so your muscles deterioate. My Dad has the type that affects your upper body first which unfortunately is usually the faster progressing one. He has gone from being happy and healthy just two years ago to now having no strength in his arms, little movement in his fingers, having to have a tube fitted directly into his stomach to be fed as his swallow reflex is so poor he would choke if he tried to eat, he has been unable to speak since just before Christmas (the thing I have found the hardest), weakness in his legs, and now it has reached his lungs. The worst part is that mentally he is still there so he is basically becoming trapped inside his own body.
He is only 60 years old and I am so sad that he never got to play with his Grandchildren, even though he has seen Brendan he had no strength in his arms to be able to play with him or even hold him unless he was propped up in a chair. He was looking forward to becoming a Granddad so much too
Sorry for such a depressing post, I just wanted to vent really as I know it can help writing things down. My head is a bit of a mess with it all at the moment and I am so grateful I have Brendan and Jacob to distract me and keep me smiling. xxxx
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Replies
I'm sorry there's nothing I can say to make it better. My thoughts are with you. Big hugs xxxxx
Your family are I. My thoughts and prayers and I really hope your passports are there in time for the weekend flights. Take care x
take care xxx
safe journey and best wishes, xx
Sending you huge hugs and all the best for a speedy safe journey home. Love A x
Still no passport for Jacob
My Dad is now in his own room and they have put a bed in for my step mum which is fab as she has been sleeping in a chair next to him all week bless her.
Keep your fingers crossed the passport arrives tomorrow for me xxx
Hopefully my Dad will hang on a while longer so I can see him. xxx
Big hugs - fingers crossed you will get back in time.
Thinking of you all.
Em xx
Just to let you know I arrived back in time to see my Dad although he was heavily sedated due to the distress he was in with his breathing so he wasn't aware I was there. He fought as hard as he could against the MND but eventually it was too much and unfortunately he passed away on Friday afternoon. Thanks to the sedation it was very peaceful which was a relief to us all as the last thing we wanted was for him to suffer anymore.
Absolutely devastated at losing my Dad as I am sure you can all imagine, he was only 60 years old and had been very fit and active until the Motor Neurone Disease took hold of him. He had his first symptoms 2 years ago and was diagnosed 18 months ago and in that short space of time the impact the MND had on his life was horrific. We are sorting out the funeral arrangements tomorrow but are hoping it will be either Thursday or Friday as I think we all need the funeral to say a proper goodbye to him.
I know everyone is a bit strapped for cash but if anyone is thinking about giving a donation to charity the Motor Neurone Disease Association is crying out for funding to help them pay for research to find a cure for this devastating condition.
My step mum, Aunt and my brother and I have all said we really want to do something to find a stop to this condition. We are requesting donations to the MND association instead of flowers at the funeral but hopefully we will come up with another fundraising way in the future to have some impact too.
xxxx
Big hugs
xx
Sending hugs and love at this sad time xxx
Lots of love and hugs to you all