- Joined
- Feb 23, 2014
- Messages
- 2,636
- Reason
- Lost a loved one
- Diagnosis
- 01/2014
- Country
- US
- State
- NC
- City
- Littleton
It's been some time since I've been able to make much of a post. I think of things I'd like to share, but then I just can't. What's that about?
What is this part of the rollercoaster that leaves me not feeling. I think. I respond. I plan. But I don't seem to be able to feel.
This past weekend we were snowed in, and Matt decided that if he couldn't leave the house there was no point in getting out of bed. This after a night of not wearing the bipap because he wanted "a peaceful night's sleep". After a night without it, he then slept the next day away. And the next night. And then most of Sunday also. He slept through meals--not good for a diabetic. It was so clear to me that this would be his life if he didn't get back on the Trilogy, so I finally insisted he use it and that he get out of bed (I told him he needed a shower).
I didn't feel upset. I just thought, Oh, so this is how it happens for some. So this is how he could decide to make his exit--just stop using the Trilogy and go to sleep. Why didn't I get upset? Why didn't I cry?
I'm finally tearing up now, now that I've forced myself to share a bit.
THe HHA that provided Matt's physical therapist discharged him last month. The paperwork was messed up and they hadn't been paid, and I think they finally realized that they would have the therapist driving three hours round trip forever for one patient, since he is a maintenance patient, and that that was not cost effective. What pissed me off was that when I called the VA to change companies, I found they'd written on the discharge that he'd met his goals.
Met his goals? I lost it and told the poor social worker that he'd meet his goals only when he's dead and had managed to get there without suffering contracture and extreme pain.
The VA was great and got a local company in pretty quickly (the one I requested). Then, two days ago, a nurse from the other company called to see how he's been doing since they last saw him. I told her fine since we'd gotten another company in to care for him. Poor gal, it wasn't her fault, but I explained what had happened and told her the same thing--that he would never meet his PT goals until he's gone. That taking a "break" from PT will only and always make him worse. That ALS doesn't take breaks and he needs this care for the rest of his life.
Again I didn't cry. I did finally feel a little bit of anger, but I should have not been able to say those things without feeling pain.
I've found that I have to look backwards to feel loss, and I can't do that. I even avoid old photos, because they remind me of what we've lost.
Maybe I've just done too good a job of living in the present.
So, is this a good thing or a bad thing, and is avoiding posting here just another layer in the cocoon that I seem to be creating for myself?
I'm just really feeling kind of lost.
Becky
What is this part of the rollercoaster that leaves me not feeling. I think. I respond. I plan. But I don't seem to be able to feel.
This past weekend we were snowed in, and Matt decided that if he couldn't leave the house there was no point in getting out of bed. This after a night of not wearing the bipap because he wanted "a peaceful night's sleep". After a night without it, he then slept the next day away. And the next night. And then most of Sunday also. He slept through meals--not good for a diabetic. It was so clear to me that this would be his life if he didn't get back on the Trilogy, so I finally insisted he use it and that he get out of bed (I told him he needed a shower).
I didn't feel upset. I just thought, Oh, so this is how it happens for some. So this is how he could decide to make his exit--just stop using the Trilogy and go to sleep. Why didn't I get upset? Why didn't I cry?
I'm finally tearing up now, now that I've forced myself to share a bit.
THe HHA that provided Matt's physical therapist discharged him last month. The paperwork was messed up and they hadn't been paid, and I think they finally realized that they would have the therapist driving three hours round trip forever for one patient, since he is a maintenance patient, and that that was not cost effective. What pissed me off was that when I called the VA to change companies, I found they'd written on the discharge that he'd met his goals.
Met his goals? I lost it and told the poor social worker that he'd meet his goals only when he's dead and had managed to get there without suffering contracture and extreme pain.
The VA was great and got a local company in pretty quickly (the one I requested). Then, two days ago, a nurse from the other company called to see how he's been doing since they last saw him. I told her fine since we'd gotten another company in to care for him. Poor gal, it wasn't her fault, but I explained what had happened and told her the same thing--that he would never meet his PT goals until he's gone. That taking a "break" from PT will only and always make him worse. That ALS doesn't take breaks and he needs this care for the rest of his life.
Again I didn't cry. I did finally feel a little bit of anger, but I should have not been able to say those things without feeling pain.
I've found that I have to look backwards to feel loss, and I can't do that. I even avoid old photos, because they remind me of what we've lost.
Maybe I've just done too good a job of living in the present.
So, is this a good thing or a bad thing, and is avoiding posting here just another layer in the cocoon that I seem to be creating for myself?
I'm just really feeling kind of lost.
Becky
