Dad's condition deteriorated quickly over the past 2 days, and yesterday (after a run--not yet showered), I had "the discussion" with his primary care physician. I will spare you the details, but at this point, any further treatments are at best invasive, intrusive and hit-or-miss, and at worst, speeding him onwards towards death.
So the PCP and I each had our conversations with Dad, and actually Dad decided for himself before I got the chance to discuss much with him (he has been barely cognizant for the past 2 days) that he did not wish to continue treatment.
I got hospice all set up, and now we wait. I don't think he will make it through this weekend. At least he gets to die with a bit of dignity rather than being 1/2 human, 1/2 machine like some Borg! Although in a way, I know that if he/we knew he could achieve the Borg state without being tethered to machinery, what the hell!
For as much anguish as I had been putting myself through before this all came up in terms of being at the end of my season and figuring out what I want to do, all I can say is this: I will be so grateful if I am physically, financially and logistically able to do another Ironman race! For right now, though, my only moments of being able to take myself away from my Dad's pain is when I am able to sneak in a short workout, and even then I've felt a bit guilty. But I know he would want me to stay healthy, as I must to get through the next few weeks.
Thank you everyone for all your kind words. Should you ever go through this, I am here for you!
Saturday, November 03, 2007
Sunday, October 28, 2007
The Good, the Bad and the Ugly
Yesterday I spent 8 hours on the phone (with intermittent breaks to just drop my head in a state of exhaustion) with the insurance company, the hospital case worker and various nursing facilities.
Let me back up. In the morning, I called into the nurse's station to check in on Dad's conditions--not that I or anyone else can change what they are--I think we all just feel better when we are receiving information. I don't remember when, but I had been told that once he became "stable" (stable being a word relative to requiring hospital care vs. some other type of medical care) that he would be checked out of the hospital. While speaking with the nurse, I began asking her how imminent such a transfer might be and she informed me it could be next week, depending on how things went.
Now, you may think that a person on hemodialysis (i.e., an artificial kidney) would need hospitalization, especially with all the other things going on with Dad, but that's not the case. Depending on the other medical issues, a person can travel to a facility, receive the treatment (which is a 3-5 hour affair each time, typically needed 2-3 times weekly) and go home. Well, Dad is really not mobile at this point, but the next transition, assuming his kidneys respond to the dialysis (remember we are NOT treating the cancer at all) is to get him into a nursing home type of facility. So I told the nurse that I would try and work on that today, just so that we were prepared.
Frankly, I don't think Dad can be transferred early next week, but what the hell do I know? At any rate, it gave me some comfort that the nurse was impressed that I was going to start that process and she said, "I'm giving you a pat on the back."
Next, I contacted the case worker to get an idea of how to proceed. I had already been given a list of facilities that might be covered by Dad's insurance, but I needed to know what to look for. My brother Mike and I decided that Dad needed to be closer to us for ease of visitation. The complicating factor became the need for hemodialysis. The case worker and I discussed that it would be best for Dad to receive this onsite at his new facility rather than transporting him back and forth.
Next stop--insurance company. They were actually very helpful in showing me how to find the information I needed, and they did a bunch of it with me. I ended up with a list of 15 facilities that met the location criteria, and then I began making phone calls.
Here is when I became frustrated, as most of them do NOT have onsite dialysis available; however, they all will make transportation available. After about 10 calls, I decided to contact the insurance company to see about coverage for transporation. Turns out it would be $100 per dialysis session; at 3x weekly, that's $300 week. I wouldn't have an issue with that, but again, for comfort sake, onsite dialysis would be better.
I soldiered on, and finally found one facility that offers it, but it's tough to do the whole tour thing on weekends, and my time was running out for the day anyway--I had done nothing but be on the phone and hadn't showered or moved about much at all, and I needed to make a short trip for some groceries and be prepared for when my siblings arrived at my house. But, I did speak with them, visited their website, and decided that's going to be the place, as it will be our "best fit."
I thought it would be good for me AND my siblings to summarize my findings, if nothing else so I could organize my thoughts in speaking with them in the evening. I found that in summarizing things I had a few possibilities left out that I hadn't done any planning for, but that turned out to be OK. I reviewed my thought process with the case worker again, finalized a summary document, updated an information file about Dad that I could share with my siblings, took a deep breath, made a really quick grocery trip, finished my strength workout (about the only thing I've managed to get in this week) which took all of :15, quickly showered, got a call while I was barely out of the shower from one of my sisters-in-law, and then my siblings began arriving.
Mike arrived first, so I debriefed him personally, and then the rest arrived. I ordered pizza and salad, as I've had no time to plan for or actually cook anything for the past week. After giving everyone some time to catch up with one another (the last time we were together was at Mom's funeral last year, and before that I don't remember), I herded my actual siblings (spouses were left upstairs) downstairs to review things.
First, I went through a discussion of Dad's medical care, and discussed how I had learned that we needed to plan for a hospital discharge, and the process that I went through, and the conclusions that I had drawn. If somehow by the grace of God we are able to take Dad off of dialysis, then we can move him to a facility really close to me where one of my sisters-in-law already has a Great Aunt residing, and that would be just great. Otherwise, we only have the one logical choice of facility, and so we will go with that. I explained that while I'd like to be able to visit daily, that it's just not feasible for me to do, and that I understand we are all doing the best we can.
Next, I began discussing all the other tasks that we need to begin attending to, the most major one being the disposition of Dad's house. It's a mess, it's unclean (not as bad as it could be, but still not pleasant), and as far as we know, he won't be able to return there EVER, although we haven't told him that. I think he may know at some level, but you never know someone's state of mind. I said that while Mike and I were taking charge of the medical care decisions and that we would handle all the financial stuff during life and after death, that we needed someone else to step up and manage the whole house project. I had already prepared a checklist of the major activities that needed to occur, and we began throwing ideas about. I was pretty frank about the 2 sisters who live out of town needing to allocate some time to being here to take care of some of it, and I said that all I needed was for them to tell me when I needed to be where and I would give of my time accordingly.
My 2 sisters, Lisa and Carla, indicated they would collaborate on this. That's a HUGE relief to me! Now, this is not going to be easy for Dad to absorb, and now is not yet the right time, but at least we have a plan for that.
We discussed end of life decisions, and while we all agreed we thought that Dad wouldn't want anything heroic, that it would be good to (as best we can) find out whether he's still on board with that. I have no clue how long we have to do this. I know there are going to be a number of not so pleasant discussions. I was pretty frank with everyone that this would all be easier if it was just a sudden death--not out of disrespect for Dad, but that's just the way it is.
Meanwhile, for today, I am now going to the Y, and will see how much running I can tolerate and then maybe a short swim. I will be so grateful for it! And then Mike and I will go to the hospital and do whatever we can. Right this minute, I am enjoying the ability to be in my pajamas for an hour and write this!
Let me back up. In the morning, I called into the nurse's station to check in on Dad's conditions--not that I or anyone else can change what they are--I think we all just feel better when we are receiving information. I don't remember when, but I had been told that once he became "stable" (stable being a word relative to requiring hospital care vs. some other type of medical care) that he would be checked out of the hospital. While speaking with the nurse, I began asking her how imminent such a transfer might be and she informed me it could be next week, depending on how things went.
Now, you may think that a person on hemodialysis (i.e., an artificial kidney) would need hospitalization, especially with all the other things going on with Dad, but that's not the case. Depending on the other medical issues, a person can travel to a facility, receive the treatment (which is a 3-5 hour affair each time, typically needed 2-3 times weekly) and go home. Well, Dad is really not mobile at this point, but the next transition, assuming his kidneys respond to the dialysis (remember we are NOT treating the cancer at all) is to get him into a nursing home type of facility. So I told the nurse that I would try and work on that today, just so that we were prepared.
Frankly, I don't think Dad can be transferred early next week, but what the hell do I know? At any rate, it gave me some comfort that the nurse was impressed that I was going to start that process and she said, "I'm giving you a pat on the back."
Next, I contacted the case worker to get an idea of how to proceed. I had already been given a list of facilities that might be covered by Dad's insurance, but I needed to know what to look for. My brother Mike and I decided that Dad needed to be closer to us for ease of visitation. The complicating factor became the need for hemodialysis. The case worker and I discussed that it would be best for Dad to receive this onsite at his new facility rather than transporting him back and forth.
Next stop--insurance company. They were actually very helpful in showing me how to find the information I needed, and they did a bunch of it with me. I ended up with a list of 15 facilities that met the location criteria, and then I began making phone calls.
Here is when I became frustrated, as most of them do NOT have onsite dialysis available; however, they all will make transportation available. After about 10 calls, I decided to contact the insurance company to see about coverage for transporation. Turns out it would be $100 per dialysis session; at 3x weekly, that's $300 week. I wouldn't have an issue with that, but again, for comfort sake, onsite dialysis would be better.
I soldiered on, and finally found one facility that offers it, but it's tough to do the whole tour thing on weekends, and my time was running out for the day anyway--I had done nothing but be on the phone and hadn't showered or moved about much at all, and I needed to make a short trip for some groceries and be prepared for when my siblings arrived at my house. But, I did speak with them, visited their website, and decided that's going to be the place, as it will be our "best fit."
I thought it would be good for me AND my siblings to summarize my findings, if nothing else so I could organize my thoughts in speaking with them in the evening. I found that in summarizing things I had a few possibilities left out that I hadn't done any planning for, but that turned out to be OK. I reviewed my thought process with the case worker again, finalized a summary document, updated an information file about Dad that I could share with my siblings, took a deep breath, made a really quick grocery trip, finished my strength workout (about the only thing I've managed to get in this week) which took all of :15, quickly showered, got a call while I was barely out of the shower from one of my sisters-in-law, and then my siblings began arriving.
Mike arrived first, so I debriefed him personally, and then the rest arrived. I ordered pizza and salad, as I've had no time to plan for or actually cook anything for the past week. After giving everyone some time to catch up with one another (the last time we were together was at Mom's funeral last year, and before that I don't remember), I herded my actual siblings (spouses were left upstairs) downstairs to review things.
First, I went through a discussion of Dad's medical care, and discussed how I had learned that we needed to plan for a hospital discharge, and the process that I went through, and the conclusions that I had drawn. If somehow by the grace of God we are able to take Dad off of dialysis, then we can move him to a facility really close to me where one of my sisters-in-law already has a Great Aunt residing, and that would be just great. Otherwise, we only have the one logical choice of facility, and so we will go with that. I explained that while I'd like to be able to visit daily, that it's just not feasible for me to do, and that I understand we are all doing the best we can.
Next, I began discussing all the other tasks that we need to begin attending to, the most major one being the disposition of Dad's house. It's a mess, it's unclean (not as bad as it could be, but still not pleasant), and as far as we know, he won't be able to return there EVER, although we haven't told him that. I think he may know at some level, but you never know someone's state of mind. I said that while Mike and I were taking charge of the medical care decisions and that we would handle all the financial stuff during life and after death, that we needed someone else to step up and manage the whole house project. I had already prepared a checklist of the major activities that needed to occur, and we began throwing ideas about. I was pretty frank about the 2 sisters who live out of town needing to allocate some time to being here to take care of some of it, and I said that all I needed was for them to tell me when I needed to be where and I would give of my time accordingly.
My 2 sisters, Lisa and Carla, indicated they would collaborate on this. That's a HUGE relief to me! Now, this is not going to be easy for Dad to absorb, and now is not yet the right time, but at least we have a plan for that.
We discussed end of life decisions, and while we all agreed we thought that Dad wouldn't want anything heroic, that it would be good to (as best we can) find out whether he's still on board with that. I have no clue how long we have to do this. I know there are going to be a number of not so pleasant discussions. I was pretty frank with everyone that this would all be easier if it was just a sudden death--not out of disrespect for Dad, but that's just the way it is.
Meanwhile, for today, I am now going to the Y, and will see how much running I can tolerate and then maybe a short swim. I will be so grateful for it! And then Mike and I will go to the hospital and do whatever we can. Right this minute, I am enjoying the ability to be in my pajamas for an hour and write this!
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