In the last week, being back at the acute care hospital and watching the doctors scrambling to address the end-stage liver disease that's come out of nowhere during the treatment for the fungal infection, my sister and I have come to the realization that Dad will probably never come home. How long he stays in his current state of incontinent delusion is completely up in the air, but it's unlikely that he'll ever be able to walk by himself or need anything less than 24-hour care.
Sis and I are trying to keep living our lives, to the extent we can while being in the hospital as much as Dad needs, so we're making time for leisure activities to keep ourselves sane. So if y'all see me at Rhinebeck and I'm looking depressed, you know why. I won't want to talk about it, but hugs are appreciated.
29 September 2013
16 September 2013
Running Totals
Since June 28th:
3 buildings in 2 states
8 rooms
2 PICC lines
4 Dobhoff tubes
3 belly taps
3 spinal taps
~12 modified barium swallow tests
5+ malfunctioning organs
dozens of doctors, nurses, and aides
dozens of blood tests
...and counting. We're at a rehab hospital in Massachusetts now, looking at a few weeks (at least) of treatment here before maybe going back to the rehab hospital we were in two weeks ago. There are still a lot of unknowns in Dad's case, so treatment progresses slowly, and every time we change facilities (which is always a joint docs-and-us decision to get him better care), there's a catching-up period of a couple days while we fill everybody in on the things that didn't make it into his chart. He's getting delusional again, too, which makes it even more important that sis and I are with him as much as possible.
Our lives are on hold. I can't look for full-time work and move northward because I have to be in the hospital. My sister can't go back to grad school because she has to be in the hospital. I'm putting about 1K miles on my car every week (yes, you read that correctly) commuting to the hospital and my part-time job in New Hampshire (which I won't quit because I need the health insurance). Projects are on hold, my business is on hold, I haven't seen most of my friends in ages, and I've only just managed to arrange my schedule in a way that allows me to get enough sleep and shower a few times a week... but it's a holding pattern, not a way to live. Stress and frustration are constant and heavy, and I'm pushing my coping skills to the max.
I wish I could say I was handling this with grace. I wish I could come up with something uplifting to say that would give someone out there a sense of hope. I'm clinging to little things that feel like gigantic victories because they're all I have -- things like finding the time to get groceries or Dad not retching after a meal. I feel guilty every time I take time off from the hospital, no matter how much I need that time to keep myself healthy.
All I can do is take it one day at a time, find whatever little silver linings I can, and hope for the best.
3 buildings in 2 states
8 rooms
2 PICC lines
4 Dobhoff tubes
3 belly taps
3 spinal taps
~12 modified barium swallow tests
5+ malfunctioning organs
dozens of doctors, nurses, and aides
dozens of blood tests
...and counting. We're at a rehab hospital in Massachusetts now, looking at a few weeks (at least) of treatment here before maybe going back to the rehab hospital we were in two weeks ago. There are still a lot of unknowns in Dad's case, so treatment progresses slowly, and every time we change facilities (which is always a joint docs-and-us decision to get him better care), there's a catching-up period of a couple days while we fill everybody in on the things that didn't make it into his chart. He's getting delusional again, too, which makes it even more important that sis and I are with him as much as possible.
Our lives are on hold. I can't look for full-time work and move northward because I have to be in the hospital. My sister can't go back to grad school because she has to be in the hospital. I'm putting about 1K miles on my car every week (yes, you read that correctly) commuting to the hospital and my part-time job in New Hampshire (which I won't quit because I need the health insurance). Projects are on hold, my business is on hold, I haven't seen most of my friends in ages, and I've only just managed to arrange my schedule in a way that allows me to get enough sleep and shower a few times a week... but it's a holding pattern, not a way to live. Stress and frustration are constant and heavy, and I'm pushing my coping skills to the max.
I wish I could say I was handling this with grace. I wish I could come up with something uplifting to say that would give someone out there a sense of hope. I'm clinging to little things that feel like gigantic victories because they're all I have -- things like finding the time to get groceries or Dad not retching after a meal. I feel guilty every time I take time off from the hospital, no matter how much I need that time to keep myself healthy.
All I can do is take it one day at a time, find whatever little silver linings I can, and hope for the best.
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