Sunday, August 8, 2004
I'm getting a somewhat later start than I'd planned.
I discovered last night that Starbucks opens later up here on Sunday than other days so I rescheduled my leaving time to coincide with their opening. I depend on their triple shot "vente iced mocha valencias non-fat no whipped cream to go" to get me around on travel days, even after drinking morning coffee here.
The following are excerpts from some e's I sent to MFASRF previous to taking my mother down the mountain for health care last Sunday. The excerpts continue through yesterday. They detail my intellectual and emotional journey immediately prior to and including the first few days of this new turn in my mother's and my adventure together. I was on a roller coaster previous to taking her down. I think this is important to note. There are, as well, a few bits of information that might be valuable to someone else traveling a similar road:
8/1/4 - 0143
You're right, there is no way to "make" my mother's stage an easy caregiving task. Today was especially bad. I waffled endlessly over whether to march her back into the ER. She'll probably end up in a hospital sometime this week. Since I'm pretty sure she's still mini-stroking, I think she needs some in-house skilled nursing care of the rehabilitative variety. Medicare/TriCare requires three days of hospital observation prior to commitment to a skilled nursing facility.
This type of SNF commitment is not of the permanent variety. At one point today I did consider permanent nursing homes because I became exhausted earlier than usual. I'm feeling better now but a lot of changes are going to have to be made to our situation, quickly, or I fear I will not be able to continue. I'm hoping that short term (could be up to 120 days) SNF care will take care of some of those requirements but it won't take care of all of them.
Today I found myself wishing that she'd die before I had to do this. My will is so tired I fear I won't be able to be "magnificent" in handling the hospital this time. I'm even considering dropping her off and letting them have at her with the stipulation that they are not to scope any of her tubes or needle her bones. If she's hospitalized in Mesa, which I'm pretty sure she will be since, at this point, I trust the medical circus down there more than the medical circus up here, I'm not going to stay. I'm going to commute from Prescott because, and this probably sounds weird, I am going to need cat contact every day. I've told Mom this. She's okay with it.
I don't know if I'll be able to finagle a "situation" in a skilled nursing facility up here. If not I'll commute, probably not on a daily basis but every other day. In that case I will charge MPS with keeping an eye on her care on the days I'm not there.
If Mom collapses again and ends up in the ER here before I can get her down to Mesa (which I plan on doing Tuesday) then I bring out the big guns and force this medical community to get its head out of its ass and be honorable.
Oh, god, I don't want to do any of this, I don't I don't I don't.
I need to tell you, meant to earlier but the day started hard and didn't let up until a little while ago, I've excerpted more of my e's to you. I seem to write about my mother and my experience of caring for her more clearly when I'm writing to you. In reflection I find myself thinking, yes, that's what I want to say. Thanks for not hitting the ceiling about it. It may happen a few more times.
I need some sleep. Luckily I'll be waking up (as well as going to bed) in Sunday, all offices are closed. Maybe I can reach some peace of mind about what ever is about to happen in my mother's life, and, thus, mine.
This is a very dicey world to visit, the World of the Ancient Ones, isn't it?
8/2/04 - 0217
...just to let you know, we are here in Mesa. My mother was admitted to the hospital here. After tonight I'll be commuting between here and Prescott while she's at the hospital. Without wasting sleep time on details (I just arrived at our Mesa house from the hospital), guess what: I was magnificent again even though I didn't think I had it in me. Yet again, my mother's case connected with a doctor sent by the gods, this time a neurologist. I can't believe it. She agrees with me on so many things I've been doing in opposition to other doctors. She even agreed with me tonight when I questioned the ER doctor's order to give my mother an aspirin because it is "typical" treatment for what has again been labeled a TIA. She thinks it's something els, because of something that came up in her blood work today about which I was curious and she agreed that I was right about not allowing Mom to e dosed with aspirin.
Goddamnit, MFASRF, yea though I walk through the Valley of the Shadow of my mother's imminent death, even though I fear evil, I'm protecting her and I'm doing a fucking good job even when I think I'm not or I don't have it in me.
I'll write more in a few days probably, but, well, once again I see that what I've been doing is worth it. Furthermore, even when I'm not seeing very well, even when I'm not at all sure of myself, I can trust myself and all the knowledge I've gained.
Every Ancient One should have someone like me looking after them, at least medically.
To sleep, to sleep, to buy a fat pig, or, something like that...
8/4/04 - 0720
I have officially passed "magnificent" and am now cruising in the "fucking magnificent" lane. I'm expecting my "S(uper)C(aregiver) costume to arrive at any time. I understand that the model for which I qualify is not caped because it has one of those instantaneous, Star-Trek type "beam around" com badges. I have a preference for capes but beaming transport is much handier.
My mother is doing well despite remaining gimpy on the right side. She will, indeed, be released to a short term skilled nursing facility for intensive rehabilitative care, the length of which will be determined by the following goal: To be able to walk 100 feet unaided (I think, although I'm not sure, "unaided" includes the use of a walker). She is doing so well and loving so much her independence at the hospital that I may drop back my planned visit schedule at the SNF. I have MPS's cooperation with spotting me. Mainly, we want to make sure Mom understands day by day that she is not forgotten; not relegated to long term nursing home care; she will be returning to me, and she and I will continue, under much better circumstances than of late, to be partners-in-crime.
I actually don't want to visit too often or spend too much time with her because, as I think I've mentioned before, she performs for others but not for me. Right now it is extremely important that she perform well. I think she could also use a vacation from me as much as I could from her. As has already been evidenced in the hospital, she is capable of beckoning people to eat out of her hand so I know if we get the right facility she will do not just fine on her own but fucking fine.
It helps, I discovered, to have a powerful, well-known heath care social worker in the family. He is, as I write, negotiating with another MSW he knows who advocates on behalf of people for skilled nursing home placement to find the best, completely covered by Medicare/TriCare skilled nursing facility for my mother, taking into consideration her needs and her condition. The other MSW's agency works very quickly (that's their job). By the time of my mother's release on Thursday she will be transported directly to what I know will be an excellent facility.
Gotta go...I need to schedule an appointment for myself with her PCP to go over her new medication schedule (which will be reduced, once again, thank god) and review what his role will be at her facility.
I hope they deliver my costume by Fed-Ex to the Valley. I could use it later today.
8/7/04 - 0928
You might find it interesting to know that at skilled nursing facilities and/or nursing homes they have their own type of "living will" arrangements which cover situations where revival of heart and lungs or the use of defibrilators and what I call jump starters would most likely return the patient to a state similar to the state in which they were previous to when they required the use of such equipment. These directives supersede a living will when there is good medical reason to believe that the patient will be brought back into something other than a terminally vegetative or terminally comatose state. Did you know that "vegetative" and "comatose" are two separate medical states which can exist together but often don't? In other words, it is possible to be vegetative and not comatose, from medicine's perspective, or to be comatose and not vegetative. Interesting that SNFs/nursing homes would find these provisions necessary but hospitals do not.
The following are excerpts from some e's I sent to MFASRF previous to taking my mother down the mountain for health care last Sunday. The excerpts continue through yesterday. They detail my intellectual and emotional journey immediately prior to and including the first few days of this new turn in my mother's and my adventure together. I was on a roller coaster previous to taking her down. I think this is important to note. There are, as well, a few bits of information that might be valuable to someone else traveling a similar road:
8/1/4 - 0143
You're right, there is no way to "make" my mother's stage an easy caregiving task. Today was especially bad. I waffled endlessly over whether to march her back into the ER. She'll probably end up in a hospital sometime this week. Since I'm pretty sure she's still mini-stroking, I think she needs some in-house skilled nursing care of the rehabilitative variety. Medicare/TriCare requires three days of hospital observation prior to commitment to a skilled nursing facility.
This type of SNF commitment is not of the permanent variety. At one point today I did consider permanent nursing homes because I became exhausted earlier than usual. I'm feeling better now but a lot of changes are going to have to be made to our situation, quickly, or I fear I will not be able to continue. I'm hoping that short term (could be up to 120 days) SNF care will take care of some of those requirements but it won't take care of all of them.
Today I found myself wishing that she'd die before I had to do this. My will is so tired I fear I won't be able to be "magnificent" in handling the hospital this time. I'm even considering dropping her off and letting them have at her with the stipulation that they are not to scope any of her tubes or needle her bones. If she's hospitalized in Mesa, which I'm pretty sure she will be since, at this point, I trust the medical circus down there more than the medical circus up here, I'm not going to stay. I'm going to commute from Prescott because, and this probably sounds weird, I am going to need cat contact every day. I've told Mom this. She's okay with it.
I don't know if I'll be able to finagle a "situation" in a skilled nursing facility up here. If not I'll commute, probably not on a daily basis but every other day. In that case I will charge MPS with keeping an eye on her care on the days I'm not there.
If Mom collapses again and ends up in the ER here before I can get her down to Mesa (which I plan on doing Tuesday) then I bring out the big guns and force this medical community to get its head out of its ass and be honorable.
Oh, god, I don't want to do any of this, I don't I don't I don't.
I need to tell you, meant to earlier but the day started hard and didn't let up until a little while ago, I've excerpted more of my e's to you. I seem to write about my mother and my experience of caring for her more clearly when I'm writing to you. In reflection I find myself thinking, yes, that's what I want to say. Thanks for not hitting the ceiling about it. It may happen a few more times.
I need some sleep. Luckily I'll be waking up (as well as going to bed) in Sunday, all offices are closed. Maybe I can reach some peace of mind about what ever is about to happen in my mother's life, and, thus, mine.
This is a very dicey world to visit, the World of the Ancient Ones, isn't it?
8/2/04 - 0217
...just to let you know, we are here in Mesa. My mother was admitted to the hospital here. After tonight I'll be commuting between here and Prescott while she's at the hospital. Without wasting sleep time on details (I just arrived at our Mesa house from the hospital), guess what: I was magnificent again even though I didn't think I had it in me. Yet again, my mother's case connected with a doctor sent by the gods, this time a neurologist. I can't believe it. She agrees with me on so many things I've been doing in opposition to other doctors. She even agreed with me tonight when I questioned the ER doctor's order to give my mother an aspirin because it is "typical" treatment for what has again been labeled a TIA. She thinks it's something els, because of something that came up in her blood work today about which I was curious and she agreed that I was right about not allowing Mom to e dosed with aspirin.
Goddamnit, MFASRF, yea though I walk through the Valley of the Shadow of my mother's imminent death, even though I fear evil, I'm protecting her and I'm doing a fucking good job even when I think I'm not or I don't have it in me.
I'll write more in a few days probably, but, well, once again I see that what I've been doing is worth it. Furthermore, even when I'm not seeing very well, even when I'm not at all sure of myself, I can trust myself and all the knowledge I've gained.
Every Ancient One should have someone like me looking after them, at least medically.
To sleep, to sleep, to buy a fat pig, or, something like that...
8/4/04 - 0720
I have officially passed "magnificent" and am now cruising in the "fucking magnificent" lane. I'm expecting my "S(uper)C(aregiver) costume to arrive at any time. I understand that the model for which I qualify is not caped because it has one of those instantaneous, Star-Trek type "beam around" com badges. I have a preference for capes but beaming transport is much handier.
My mother is doing well despite remaining gimpy on the right side. She will, indeed, be released to a short term skilled nursing facility for intensive rehabilitative care, the length of which will be determined by the following goal: To be able to walk 100 feet unaided (I think, although I'm not sure, "unaided" includes the use of a walker). She is doing so well and loving so much her independence at the hospital that I may drop back my planned visit schedule at the SNF. I have MPS's cooperation with spotting me. Mainly, we want to make sure Mom understands day by day that she is not forgotten; not relegated to long term nursing home care; she will be returning to me, and she and I will continue, under much better circumstances than of late, to be partners-in-crime.
I actually don't want to visit too often or spend too much time with her because, as I think I've mentioned before, she performs for others but not for me. Right now it is extremely important that she perform well. I think she could also use a vacation from me as much as I could from her. As has already been evidenced in the hospital, she is capable of beckoning people to eat out of her hand so I know if we get the right facility she will do not just fine on her own but fucking fine.
It helps, I discovered, to have a powerful, well-known heath care social worker in the family. He is, as I write, negotiating with another MSW he knows who advocates on behalf of people for skilled nursing home placement to find the best, completely covered by Medicare/TriCare skilled nursing facility for my mother, taking into consideration her needs and her condition. The other MSW's agency works very quickly (that's their job). By the time of my mother's release on Thursday she will be transported directly to what I know will be an excellent facility.
Gotta go...I need to schedule an appointment for myself with her PCP to go over her new medication schedule (which will be reduced, once again, thank god) and review what his role will be at her facility.
I hope they deliver my costume by Fed-Ex to the Valley. I could use it later today.
8/7/04 - 0928
You might find it interesting to know that at skilled nursing facilities and/or nursing homes they have their own type of "living will" arrangements which cover situations where revival of heart and lungs or the use of defibrilators and what I call jump starters would most likely return the patient to a state similar to the state in which they were previous to when they required the use of such equipment. These directives supersede a living will when there is good medical reason to believe that the patient will be brought back into something other than a terminally vegetative or terminally comatose state. Did you know that "vegetative" and "comatose" are two separate medical states which can exist together but often don't? In other words, it is possible to be vegetative and not comatose, from medicine's perspective, or to be comatose and not vegetative. Interesting that SNFs/nursing homes would find these provisions necessary but hospitals do not.
