feeling helpless
Member
- Joined
- Mar 9, 2009
- Messages
- 28
- Reason
- Loved one DX
- Diagnosis
- 03/2006
- Country
- uk
- State
- West Sussex
- City
- sussex
Hi there, I'm new to this and I need some help and support, all suggestions welcome as i am at a loss for ideas. Please excuse the length of this but felt i had to give full picture.
My Dad was diagnosed in Mar 2006, aged 65. He has always been an active man since a young lad so this seemed an unbelievable illness for him to get. Didn't seem real. Naturally, few months after diagnosis nothing had dramatically changed, his legs remained effected as well as the vasiculations and he would gradually show us muscle wasting away but remained determined to beat this thing. He started with rilotec very early on and is still taking it now. His breathing problems started a year ago and has gradually gone downhill. January his FVR was 36% which meant nothing to me but that was when i started looking at this forum to try and understand what it could mean ? Dad doesnt like talking about his mnd or the problems he faces and so i'm in the dark unless my step mum tells me anything.
Up until last week i still refused to believe he had this awful disease, or that he would die from it, but recent events would soon change that line of thinking.
He is panicking and frightened, something I have never seen in my dad. He talks about committing suicide but he's left it too late.
Four days ago, he had a fall, which left him a bit bruised and battered. We still managed to get him downstairs on the stairlift and he spent the day in his chair recovering. The following day he was exhausted, but again we managed to get him downstairs and into his chair. Yesterday, I got a call at 7am, he'd had a fall and step mum couldn't get him up. I went round straight away and helped get him downstairs , but this was the first time i realised how much he had gone downhill, and so quickly, it was quite upsetting and shocking. That night when I went up to help him upstairs to bed we very nearly didnt get him upstairs. His legs refused to move or do anything, his arms had lost all strength and it was clearly too much of an effort for him as i was holding a dead weight to transfer him from wheelchair to stairlift. ( the stairlift does not come down to the bottom of stairs as it goes round a corner and the first two steps have to be conquered independantly). He was angry, upset and aggitated, understandably.
I went up this morning to help him downstairs and he refused to come down. He says its not just the problems using the stairs, but his speech is almost gone, barely audible .. and he has problems forming words and sentences when he can talk. His breathing is very shallow and he can no longer cough, so he gets a build up of mucas. Swallowing is becoming impossible, and at times he can hardly hold a cup. His wife is at a loss she doesnt know what to doand is barely coping herself, but she doesnt want to 'share him' with anyone other than me (which is fine by me, but we will need extra help soon !).
The biggest prob is that he has made a living will and is already refusing any treatment. He will take his morphine and rilotec, and when needed a dispursant drug to help clear his throat, but thats it. No oxygen/bipap, nothing. His new wheelchair that was specially made for him complete with restraints came the other day and its going back... he tried it but as soon as he saw it i knew it would be going back.
It was so alarming and distressing to see him lying on his bed today unable to do anything and struggling to be comfortable. I feel so useless. I know he's giving up but I dont want him too. He's always been a fighter, but im worried he is giving up and that will be the end. The last four days have seen him decline dramatically and i'm worried we are now talking about weeks and no longer months, but i'm not ready for him to go yet. Help ! Any suggestions, how can i help him , what do i do ?
My Dad was diagnosed in Mar 2006, aged 65. He has always been an active man since a young lad so this seemed an unbelievable illness for him to get. Didn't seem real. Naturally, few months after diagnosis nothing had dramatically changed, his legs remained effected as well as the vasiculations and he would gradually show us muscle wasting away but remained determined to beat this thing. He started with rilotec very early on and is still taking it now. His breathing problems started a year ago and has gradually gone downhill. January his FVR was 36% which meant nothing to me but that was when i started looking at this forum to try and understand what it could mean ? Dad doesnt like talking about his mnd or the problems he faces and so i'm in the dark unless my step mum tells me anything.
Up until last week i still refused to believe he had this awful disease, or that he would die from it, but recent events would soon change that line of thinking.
He is panicking and frightened, something I have never seen in my dad. He talks about committing suicide but he's left it too late.
Four days ago, he had a fall, which left him a bit bruised and battered. We still managed to get him downstairs on the stairlift and he spent the day in his chair recovering. The following day he was exhausted, but again we managed to get him downstairs and into his chair. Yesterday, I got a call at 7am, he'd had a fall and step mum couldn't get him up. I went round straight away and helped get him downstairs , but this was the first time i realised how much he had gone downhill, and so quickly, it was quite upsetting and shocking. That night when I went up to help him upstairs to bed we very nearly didnt get him upstairs. His legs refused to move or do anything, his arms had lost all strength and it was clearly too much of an effort for him as i was holding a dead weight to transfer him from wheelchair to stairlift. ( the stairlift does not come down to the bottom of stairs as it goes round a corner and the first two steps have to be conquered independantly). He was angry, upset and aggitated, understandably.
I went up this morning to help him downstairs and he refused to come down. He says its not just the problems using the stairs, but his speech is almost gone, barely audible .. and he has problems forming words and sentences when he can talk. His breathing is very shallow and he can no longer cough, so he gets a build up of mucas. Swallowing is becoming impossible, and at times he can hardly hold a cup. His wife is at a loss she doesnt know what to doand is barely coping herself, but she doesnt want to 'share him' with anyone other than me (which is fine by me, but we will need extra help soon !).
The biggest prob is that he has made a living will and is already refusing any treatment. He will take his morphine and rilotec, and when needed a dispursant drug to help clear his throat, but thats it. No oxygen/bipap, nothing. His new wheelchair that was specially made for him complete with restraints came the other day and its going back... he tried it but as soon as he saw it i knew it would be going back.
It was so alarming and distressing to see him lying on his bed today unable to do anything and struggling to be comfortable. I feel so useless. I know he's giving up but I dont want him too. He's always been a fighter, but im worried he is giving up and that will be the end. The last four days have seen him decline dramatically and i'm worried we are now talking about weeks and no longer months, but i'm not ready for him to go yet. Help ! Any suggestions, how can i help him , what do i do ?