yutopia
New member
- Joined
- Aug 18, 2011
- Messages
- 7
- Reason
- CALS
- Diagnosis
- 08/2011
- Country
- US
- State
- PA
- City
- Pittsburgh
Hey all,
Have only posted once or twice before. I'm the caregiver for my partner, Mike, who has been diagnosed since August 2011. He uses a power chair and a feeding tube (although he's fortunately still able to enjoy a beer every night), a sip and puff respirator as he needs, and we use a transfer/shower chair to bathe and toilet. He's had significant decline in the years since diagnosis, but we are thankful that he's still talking a bit (he has a tobii for when that's not the case), and that he's still in the house with me and our three wonderful pets.
However we've reached a point where breathing overnight has started to become more difficult. We give him alprazolam as the doctor has instructed, which does seem to reduce some of his anxiety about it. But we cannot use the bipap that has been prescribed because Mike says that he can't exhale, and then his breath gets "caught" inside of him. Too, he has a severe gag reflex, to the point where use of breathing machines with a mask make him throw up, because he can't take the mask off himself and his reflex is triggered. He's on the highest possible dose of baclofen that we're comfortable with, but it doesn't seem to help. At the clinic, we've been told they've never seen a patient with such severe reflexes.
The problem is this: my husband is now refusing oxygen. At night I've been putting oxygen on him (via nasal cannula) but now he says the oxygen is preventing him from being able to breathe. I know he has a strange/unusual set of breathing difficulties (the gag reflex plus his inability to exhale) but I can't understand the mechanics of his claim. I don't want to disbelieve him, because I've seen doctors and nurses scoff at his very real, very true symptoms, but I also just don't understand. Complicating matters is his reticence to accept new adaptive/assistive equipment, which is no doubt not an uncommon PALS/CALS tension, as even I can see from my occasional wandering onto this forum. (And surely I'd be the same, all of us likely would, as it is really, really difficult to accept the use of a device that sometimes seems only to draw focus on the loss in ability rather than to adequately substitute or replace the loss.)
I'm not really sure what to do. He can't use the bipap, claims the sip and puff is useless or just dries him out blowing on him all night, won't even use a cervical pillow even though his head slides uncomfortably to a very acute angle all night and he has recurrent neck issues, yet at night he can't breathe and it causes him to panic. Despite my reluctance to accept it, I know this issue is only going to get worse, and I 'm not sure how to deal with his refusal of all assistive devices/equipment. I can't force him to do any of this, it's simply not possible to do to a paralyzed, panicking person who gags and can't breathe when they cry (one of the worst things to witness—and something I'm sure many of you have experienced with your own wonderful PALS—my heart just breaks every time).
I am really tempted at this point to put him into the VA, where staff checks on patients every 30 min overnight. We are on the waiting list and our name comes up periodically, and we always say no, we're not ready, because he's only 35 and we want him at home as long as it's feasible. But I am in really deep and can feel my head going underwater, and the lack of sleep is just overwhelming. Luckily I have lots of help (nearly 8 hours 6 days a week!) but nonetheless I am approaching a breaking point.
Is it possible that we are seeing a decline in his capacity to do complex reasoning? I know frontal lobe degeneration can affect one's ability to make decisions, but there are also very real reasons why much of this equipment is not effective on Mike.
I just don't know what to do, and he's not going to suddenly decide to just go into the VA unless I prompt him. I'm so scared of all the changes that would cause, but wonder if I'm letting my fears and guilt about not being adequate to deal with his needs feed my feelings.
Have any of you moved your PALS to skilled care, and how did it work for you? Was the care there superior is some ways and worse in others? And how on earth do you deal with your PALS refusing necessary medical intervention? Staying up all night and talking him through just doesn't cut it when he can't breathe and is refusing (what seems to me to be) very real physical support that could alleviate some of the issue.
Kindly,
Liz
Have only posted once or twice before. I'm the caregiver for my partner, Mike, who has been diagnosed since August 2011. He uses a power chair and a feeding tube (although he's fortunately still able to enjoy a beer every night), a sip and puff respirator as he needs, and we use a transfer/shower chair to bathe and toilet. He's had significant decline in the years since diagnosis, but we are thankful that he's still talking a bit (he has a tobii for when that's not the case), and that he's still in the house with me and our three wonderful pets.
However we've reached a point where breathing overnight has started to become more difficult. We give him alprazolam as the doctor has instructed, which does seem to reduce some of his anxiety about it. But we cannot use the bipap that has been prescribed because Mike says that he can't exhale, and then his breath gets "caught" inside of him. Too, he has a severe gag reflex, to the point where use of breathing machines with a mask make him throw up, because he can't take the mask off himself and his reflex is triggered. He's on the highest possible dose of baclofen that we're comfortable with, but it doesn't seem to help. At the clinic, we've been told they've never seen a patient with such severe reflexes.
The problem is this: my husband is now refusing oxygen. At night I've been putting oxygen on him (via nasal cannula) but now he says the oxygen is preventing him from being able to breathe. I know he has a strange/unusual set of breathing difficulties (the gag reflex plus his inability to exhale) but I can't understand the mechanics of his claim. I don't want to disbelieve him, because I've seen doctors and nurses scoff at his very real, very true symptoms, but I also just don't understand. Complicating matters is his reticence to accept new adaptive/assistive equipment, which is no doubt not an uncommon PALS/CALS tension, as even I can see from my occasional wandering onto this forum. (And surely I'd be the same, all of us likely would, as it is really, really difficult to accept the use of a device that sometimes seems only to draw focus on the loss in ability rather than to adequately substitute or replace the loss.)
I'm not really sure what to do. He can't use the bipap, claims the sip and puff is useless or just dries him out blowing on him all night, won't even use a cervical pillow even though his head slides uncomfortably to a very acute angle all night and he has recurrent neck issues, yet at night he can't breathe and it causes him to panic. Despite my reluctance to accept it, I know this issue is only going to get worse, and I 'm not sure how to deal with his refusal of all assistive devices/equipment. I can't force him to do any of this, it's simply not possible to do to a paralyzed, panicking person who gags and can't breathe when they cry (one of the worst things to witness—and something I'm sure many of you have experienced with your own wonderful PALS—my heart just breaks every time).
I am really tempted at this point to put him into the VA, where staff checks on patients every 30 min overnight. We are on the waiting list and our name comes up periodically, and we always say no, we're not ready, because he's only 35 and we want him at home as long as it's feasible. But I am in really deep and can feel my head going underwater, and the lack of sleep is just overwhelming. Luckily I have lots of help (nearly 8 hours 6 days a week!) but nonetheless I am approaching a breaking point.
Is it possible that we are seeing a decline in his capacity to do complex reasoning? I know frontal lobe degeneration can affect one's ability to make decisions, but there are also very real reasons why much of this equipment is not effective on Mike.
I just don't know what to do, and he's not going to suddenly decide to just go into the VA unless I prompt him. I'm so scared of all the changes that would cause, but wonder if I'm letting my fears and guilt about not being adequate to deal with his needs feed my feelings.
Have any of you moved your PALS to skilled care, and how did it work for you? Was the care there superior is some ways and worse in others? And how on earth do you deal with your PALS refusing necessary medical intervention? Staying up all night and talking him through just doesn't cut it when he can't breathe and is refusing (what seems to me to be) very real physical support that could alleviate some of the issue.
Kindly,
Liz