My father was diagnosed with ALS in September of 09, he however now that I know what he has, had clearly had ALS for quite a few years prior to the diagnosis.
He started out by losing use of his lower extremities and left arm, however he had many ailments for 15 years which made diagnosing difficult ( stroke, heart, diabetes,cancer, etc) his illness had progressed to being bedridden, only out of bed with a patient lift to wheelchair, now thats over.
He was taken to hospital a few weeks ago with Aspiration Pneumonia and a Collapsed Lung.
The doctors wanted to insert a peg tube, to prevent aspiration again but, if they did, due to the condition his lungs were in, he would have had to be placed on a Ventilator prior to, and remain on one, afterwards, and placed in a hospital setting.
There was also confusion on his swallow test - he was told he passed and on the hospital floor he was given food, first a soft diet, then they moved it up to meatloafs, salmon, fruit etc., he went into a respiratory distress one afternoon and was taken to ICU, then released home on Hospice care.
Now he is on 6 liters of oxygen, is wearing a cath, has a neubulizer, a bipap ( which he doesn't use yet all that often), it is getting very difficult to make him comfortable due to skin breakdown ( he is also on coumadin ), he isn't eating enough clearly due to his PT/INR results and what he does eat I now have to puree into a baby food type consistancy as to me I can see tightening of his neck muscles when swallowing, and his forehead wrinkles up.
He panics when I have to lie him flat as he's afraid of mucous ( he has a suction device), his voice is going, and is worst when he doesn't drink enough, this seems to be what bothers him more than anything.
Now my issue is this - I am the sole caretaker, Im 44, and alone, my story in itself is a long one and more of a novel than this post but, clearly I will have to arrange or help my Ma after this disease takes my father, I am trying to find out from those who have experienced this themselves what I am to expect next, if anyones loved one went thru anything close to what I have said above, I need to hear the truth from someone who's been there, does this appear to be the very end of his struggle, or could he go on for months or years ?
I am unable to work away from the house, and if he appears to be able to continue for some time as he is, I may have to make other arrangements, as I am pulling in no paycheck, and have to be sure my mother and him are taken care of properly.
I need answers, and don't mean to sound cool, or aloof about this, but its come down to me not looking at things with an emotional eye, but with an eye on reality.
Thanks
Xx
He started out by losing use of his lower extremities and left arm, however he had many ailments for 15 years which made diagnosing difficult ( stroke, heart, diabetes,cancer, etc) his illness had progressed to being bedridden, only out of bed with a patient lift to wheelchair, now thats over.
He was taken to hospital a few weeks ago with Aspiration Pneumonia and a Collapsed Lung.
The doctors wanted to insert a peg tube, to prevent aspiration again but, if they did, due to the condition his lungs were in, he would have had to be placed on a Ventilator prior to, and remain on one, afterwards, and placed in a hospital setting.
There was also confusion on his swallow test - he was told he passed and on the hospital floor he was given food, first a soft diet, then they moved it up to meatloafs, salmon, fruit etc., he went into a respiratory distress one afternoon and was taken to ICU, then released home on Hospice care.
Now he is on 6 liters of oxygen, is wearing a cath, has a neubulizer, a bipap ( which he doesn't use yet all that often), it is getting very difficult to make him comfortable due to skin breakdown ( he is also on coumadin ), he isn't eating enough clearly due to his PT/INR results and what he does eat I now have to puree into a baby food type consistancy as to me I can see tightening of his neck muscles when swallowing, and his forehead wrinkles up.
He panics when I have to lie him flat as he's afraid of mucous ( he has a suction device), his voice is going, and is worst when he doesn't drink enough, this seems to be what bothers him more than anything.
Now my issue is this - I am the sole caretaker, Im 44, and alone, my story in itself is a long one and more of a novel than this post but, clearly I will have to arrange or help my Ma after this disease takes my father, I am trying to find out from those who have experienced this themselves what I am to expect next, if anyones loved one went thru anything close to what I have said above, I need to hear the truth from someone who's been there, does this appear to be the very end of his struggle, or could he go on for months or years ?
I am unable to work away from the house, and if he appears to be able to continue for some time as he is, I may have to make other arrangements, as I am pulling in no paycheck, and have to be sure my mother and him are taken care of properly.
I need answers, and don't mean to sound cool, or aloof about this, but its come down to me not looking at things with an emotional eye, but with an eye on reality.
Thanks
Xx
