Monday, August 23, 2004
Non-Alternative Medicine Strikes [Out] Again
Interesting development regarding Home Health Care. It seems that it is specifically for the home bound. Thus, Mom is not eligible. We found this out during the evaluative appointment with the PT sent by Home Health Care here in Prescott. The appointment was going well up to the point where the PT asked if Mom takes acetaminophen. I answered, "Yes, but not often."
"When was her last dose?" he asked.
I laughed. "Well, yesterday, actually. She walked a little too much at Costco and her lower back was bothering her so I gave her 500 mg before her nap."
"She's not home bound?" the PT asked, clearly surprised.
"Goodness, no," I said. "For the last several months she's been refusing to move much, which has caused her to weaken significantly. This, added to the attacks of a few health problems made it almost impossible for me to get her moving. When she started doing what I call mini-stroking but wasn't, for a little less than a week she couldn't move without collapsing. But, generally, no, she's not home bound. In fact, she's improved so much over the last few weeks at the SNF that I'd be surprised if she ever became home bound."
"Well, then, this appointment ends here," he announced. "Home Health Care is only for the home bound."
"Why in the world, I wonder, did the SNF think she was home bound?!?" I asked of the air. "I can't imagine why anyone thought she was home bound!"
Answers to that question were not forthcoming. Before leaving, the PT was kind enough to give me the name of a PT he thought would suit my mother's profile and told me why the two I'd considered through phone interviews a little over a month ago might be too "dynamic" for my mother right now. From what he told me, I agree. I also explained that the reason why I'd selected these over the others I'd talked to was because they were the only two who didn't make assumptions about lack of ability or potential based on her age. He agreed that this can be a problem and assured me that the PT he mentioned, while gentle, was not about to do this.
Just before he left he mentioned that he could clearly see that I took very good care of my mother and he was glad that I was insisting that she get back into movement and not allow her to become home bound at this point. "When that happens," he said, "it's the beginning of the end."
Immediately after he closed the door Mom and I started a comic riff on the medical community that has surrounded her since early June (I'm including the blood transfusion team because at that time Home Health Care was also recommended but the hospital never followed up on it, leaving that to me, which I didn't do) thinking that she was somehow home bound. I can't imagine that anyone would have gotten this idea from her PCP. He knows better.
To be fair, there are some reasons why the hospital and SNF consulting physicians, who saw my mother for only short periods of time, put 2 + 2 together and came up with 22 instead of 4. They only see her when she is extremely weak. Both times this summer when she'd been admitted to the hospital and the time she'd been admitted to the SNF I mentioned that she has been refusing to move much at all since about late March, early April. Of course, now, as it turns out, besides her natural inertia, there have also been legitimate health conditions that have been lowering her energy level significantly, although, truth be told, at least one of those problems would not have been as much of a problem if she had continued to move, even a little. She is 87 and, I guess, the non-alternative medical community isn't used to seeing an 87 year old with what appears to be deteriorating health who also has dynamic recuperative powers. I do tend to refer to her as "frail" because when she's having significant health problems, she is frail, and when she's in good form she has certain conditions, such as her lack of short term memory, which make her a poor candidate for certain procedures, such as scoping. My mother is, figuratively, of the cat family, as well. If someone tells her to stay in bed she rarely argues (although she did at the SNF). I do believe that if there was a way for my mother to stay in bed without endangering any of her physical abilities and causing no one else any problems she'd grab for it as though it was the gold ring.
However, each and every medical professional involved in my mother's care since June 8th has been well informed, by me, of this website and has been told and directed on paper numerous times that her entire, reliable history resides, in several forms, on this site and that the site can be searched in order to successfully and quickly wade through all the words that might be considered insignificant. As well, I have not been shy about voicing my own determinations regarding my mother's health profile, her spirit, her will and her recuperative powers, although I've also noticed that I am usually politely tolerated then ignored. My mother, though, has surprised almost everyone involved in her care throughout the last few months with her ability to suddenly and resolutely stand and be counted, even when she's been told to stay in bed, especially at the SNF, which, this time, was the medical cooperative that recommended Home Health Care.
I don't know. Bottom line is, it's a mystery to me. Is it possible that the non-alternative medical industry, in general, isn't aware that Home Health Care is for the home bound? Or, is it simply that NO ONE IN THE NON-ALTERNATIVE MEDICAL INDUSTRY LISTENS, NO ONE REALLY OBSERVES AND NO ONE THINKS!?!?!? Yes, I shouted that. Really, really loud. Jesus fucking Christ! How in the world does anyone ever get healed through non-alternative medicine?
Nothing like a little tantrum to make one feel better.
Okay, now on to our day. It was a heavy duty moving day. Immediately after the Home Health Care PT excused himself I headed Mom out to our driveway and set her to some concentrated practice at the proper method of using her walker in order to short circuit the possibility of her compromising her back. After about 45 minutes, which also involved surveying our wild, wild yard and admiring our developing apples and one pear, I settled her inside and we went through all the upper and lower body exercises she's been doing at the facility with her new 1 lb. weights. She worked hard. I was surprised. So was she.
After some lunch and a 2.5 hour nap, which she not only deserved but through which she slept deeply, I gathered her up, jump started her and we went to the grocery to replenish some of the staples that had either spoiled during the last three weeks or through which I'd eaten. Her energy level was astounding. I gave her several chances to sit and relax, or "hang out" while I went looking for an obscure or moved item, but she kept up with me, even as I continually corrected her use of the walker. We spent a good hour in the store (in part because her speed is, well, the speed of an 87 year old who is recovering from extreme physical weakness) but she didn't tire.
I am sure that some of her recovered energy level is due to no longer smoking. We had an accidental run-in over smoking today, my fault. It is my unconscious habit, when I pet The Big Girl, who is a long-haired calico, to pick her shed off my hands and clothes afterwards and reach across the distance between Mom and me and deposit it in her ash tray. I did this without thinking, this afternoon, then, again without thinking, laughed and said, "Oh, yeah, no more cigarettes, no more ash trays! I forgot!"
Immediately I realized my mistake. An almost silent part of Mom's brain suddenly shouted. Her expression turned hard, her eyes glittered and she said, "That's right!" as though she'd located something she'd misplaced a long time ago and for which she'd subconsciously been looking. "May I please have a cigarette." It was not a request.
Oh shit, I thought. "Mom, we don't have any cigarettes."
Again, with an edge. "May I please have a cigarette."
"Mom, really, we don't have any cigarettes. You haven't smoked since about a week before you went into the hospital and all the cigarettes are gone, now."
She glared at me.
"Mom, I'm going to remind you why you're not smoking anymore. I want you to listen carefully to me." I launched into her recent history including how, since her blood transfusion, she'd been on oxygen almost 24 hours a day, had cut her cigarette consumption to no more than 7 cigarettes a day, usually 3 to 5. As the days passed, I explained, I noticed that each time she had a cigarette during this period, just one cigarette, she became significantly weaker. I reviewed how I stopped her consumption of cigarettes altogether when her right side started to collapse. I explained that because of this her hospital and her SNF stays she hasn't smoked for almost four weeks.
"Mom," I said, "you know that I've allowed you to smoke as long as I didn't think it was endangering your life. You know I've even fought the efforts of others to keep you from smoking on their behalf. I've made enemies, short and long term, over this issue. As long as it didn't appear to be a problem for you that we couldn't deal with I defended your right to smoke. But, Mom, things have changed. It is very obvious now from your spectacular recovery that smoking no longer belongs in your life. Do you remember, just before I took you down to Mesa to the hospital, how I was beside myself with anxiety knowing that I had finally reached a point where I could no longer take care of you? How your weakness had confined you to a wheelchair, how you could barely get in and out of it, how I talked to both you and MCS about realizing that it was probably time to enter you into a nursing home because your care needs had advanced beyond my abilities and how I was desolate about this? How I sat before you and apologized to you for having reached my limit and asked you to forgive me for what I was about to do?"
She had been quiet and unusually attentive through everything I said. "Yes," she said, her voice deep with obvious memory and seriousness. "I remember."
"Well, Mom, I never imagined this but, apparently, your extreme decline and weakness was due largely to smoking. As soon as you stopped smoking you revived. Look at you now, Mom. You're improving in all areas, daily by leaps and bounds. You're using significantly less oxygen than you have for months. Your breathing treatments have been cancelled. Your energy level is soaring. Everything about you has improved. Dramatically. I can't, in good conscience, anymore allow you even one more cigarette. Do you understand what I'm saying?"
"Yes. I understand."
"Mom, I don't know what the future holds. I don't know that I'll always be able to care for you. But I do know, now, that if there is something standing in the way of my being able to care for you and getting rid of it will improve our lives and keep you going, I'm obligated to get rid of it."
Then, I talked about the issue I brought up here in this journal some days ago. "Mom, believe me, I've thought a lot about this. You know how people have a tendency to say, 'Ahhh, she's old, she doesn't have much life left, let her do what she wants,'? Well, I used to think that, too, until I began to see that the combination of no movement and smoking was seriously affecting the quality and maybe even the length of your life. I realized that while thinking this may sometimes be legitimate it can often be an insult to the person about whom its being thought. I could say, 'Go ahead, let her smoke, let her stay in bed, let her have her way about refusing to move. She's old. She deserves that right.' But, Mom, you don't deserve that. Letting you do that too much longer would have landed you in a nursing home because the level of care you would require would have been beyond me. If you end up in a nursing home you certainly wouldn't be able to smoke because you would most likely be bedridden so you wouldn't be able to make it out to the smoking area. If you were in very poor health and I knew that your days were numbered in the single digits, maybe I'd let you have a cigarette. But that's not true right now. Do you agree?"
She thought for a minute or so, looking at me with concentration. I could see the gears working slowly, hitting a few rusty spots but working nonetheless. I had no idea where those gears would rest. I wasn't sure what I was going to do or say if she said, "No." While she thought, so did I, preparing myself for the possibility that I would need to accept her decision to continue the decline that we'd stopped over the last few weeks. I worked furiously to gird myself to handle this possibility resolutely without disappointment, knowing that I would be carrying out her wishes.
I cannot describe my relief and elation when she said, soberly, and deliberately, "Yes."
I burst into tears and thanked her. "Mom," I said, "I will do everything within my power to make your decision worth your while. I will do everything I can to increase my strength so that no matter what happens to you I can remain by your side through everything whatever that means."
"I know you will," she said, "you already have."
I sat before her on the floor and sobbed. When I was able to talk again I said, "You know, Mom, I can't foretell the future. Despite my resolve, there may come a time when your care is beyond me and there's no chance of reversal. These last four weeks have taught me this. I'll do everything I can to keep up with your needs, and you know I'm pretty spectacular at rising out of the ashes. But, if it ever happens that I find I can't..." I started groping. I had no idea how to finish this sentence. What would I do?
Mom stepped up to the plate. "Then I'll have a cigarette."
We both laughed. "And I'll buy it for you."
"When was her last dose?" he asked.
I laughed. "Well, yesterday, actually. She walked a little too much at Costco and her lower back was bothering her so I gave her 500 mg before her nap."
"She's not home bound?" the PT asked, clearly surprised.
"Goodness, no," I said. "For the last several months she's been refusing to move much, which has caused her to weaken significantly. This, added to the attacks of a few health problems made it almost impossible for me to get her moving. When she started doing what I call mini-stroking but wasn't, for a little less than a week she couldn't move without collapsing. But, generally, no, she's not home bound. In fact, she's improved so much over the last few weeks at the SNF that I'd be surprised if she ever became home bound."
"Well, then, this appointment ends here," he announced. "Home Health Care is only for the home bound."
"Why in the world, I wonder, did the SNF think she was home bound?!?" I asked of the air. "I can't imagine why anyone thought she was home bound!"
Answers to that question were not forthcoming. Before leaving, the PT was kind enough to give me the name of a PT he thought would suit my mother's profile and told me why the two I'd considered through phone interviews a little over a month ago might be too "dynamic" for my mother right now. From what he told me, I agree. I also explained that the reason why I'd selected these over the others I'd talked to was because they were the only two who didn't make assumptions about lack of ability or potential based on her age. He agreed that this can be a problem and assured me that the PT he mentioned, while gentle, was not about to do this.
Just before he left he mentioned that he could clearly see that I took very good care of my mother and he was glad that I was insisting that she get back into movement and not allow her to become home bound at this point. "When that happens," he said, "it's the beginning of the end."
Immediately after he closed the door Mom and I started a comic riff on the medical community that has surrounded her since early June (I'm including the blood transfusion team because at that time Home Health Care was also recommended but the hospital never followed up on it, leaving that to me, which I didn't do) thinking that she was somehow home bound. I can't imagine that anyone would have gotten this idea from her PCP. He knows better.
To be fair, there are some reasons why the hospital and SNF consulting physicians, who saw my mother for only short periods of time, put 2 + 2 together and came up with 22 instead of 4. They only see her when she is extremely weak. Both times this summer when she'd been admitted to the hospital and the time she'd been admitted to the SNF I mentioned that she has been refusing to move much at all since about late March, early April. Of course, now, as it turns out, besides her natural inertia, there have also been legitimate health conditions that have been lowering her energy level significantly, although, truth be told, at least one of those problems would not have been as much of a problem if she had continued to move, even a little. She is 87 and, I guess, the non-alternative medical community isn't used to seeing an 87 year old with what appears to be deteriorating health who also has dynamic recuperative powers. I do tend to refer to her as "frail" because when she's having significant health problems, she is frail, and when she's in good form she has certain conditions, such as her lack of short term memory, which make her a poor candidate for certain procedures, such as scoping. My mother is, figuratively, of the cat family, as well. If someone tells her to stay in bed she rarely argues (although she did at the SNF). I do believe that if there was a way for my mother to stay in bed without endangering any of her physical abilities and causing no one else any problems she'd grab for it as though it was the gold ring.
However, each and every medical professional involved in my mother's care since June 8th has been well informed, by me, of this website and has been told and directed on paper numerous times that her entire, reliable history resides, in several forms, on this site and that the site can be searched in order to successfully and quickly wade through all the words that might be considered insignificant. As well, I have not been shy about voicing my own determinations regarding my mother's health profile, her spirit, her will and her recuperative powers, although I've also noticed that I am usually politely tolerated then ignored. My mother, though, has surprised almost everyone involved in her care throughout the last few months with her ability to suddenly and resolutely stand and be counted, even when she's been told to stay in bed, especially at the SNF, which, this time, was the medical cooperative that recommended Home Health Care.
I don't know. Bottom line is, it's a mystery to me. Is it possible that the non-alternative medical industry, in general, isn't aware that Home Health Care is for the home bound? Or, is it simply that NO ONE IN THE NON-ALTERNATIVE MEDICAL INDUSTRY LISTENS, NO ONE REALLY OBSERVES AND NO ONE THINKS!?!?!? Yes, I shouted that. Really, really loud. Jesus fucking Christ! How in the world does anyone ever get healed through non-alternative medicine?
Nothing like a little tantrum to make one feel better.
Okay, now on to our day. It was a heavy duty moving day. Immediately after the Home Health Care PT excused himself I headed Mom out to our driveway and set her to some concentrated practice at the proper method of using her walker in order to short circuit the possibility of her compromising her back. After about 45 minutes, which also involved surveying our wild, wild yard and admiring our developing apples and one pear, I settled her inside and we went through all the upper and lower body exercises she's been doing at the facility with her new 1 lb. weights. She worked hard. I was surprised. So was she.
After some lunch and a 2.5 hour nap, which she not only deserved but through which she slept deeply, I gathered her up, jump started her and we went to the grocery to replenish some of the staples that had either spoiled during the last three weeks or through which I'd eaten. Her energy level was astounding. I gave her several chances to sit and relax, or "hang out" while I went looking for an obscure or moved item, but she kept up with me, even as I continually corrected her use of the walker. We spent a good hour in the store (in part because her speed is, well, the speed of an 87 year old who is recovering from extreme physical weakness) but she didn't tire.
I am sure that some of her recovered energy level is due to no longer smoking. We had an accidental run-in over smoking today, my fault. It is my unconscious habit, when I pet The Big Girl, who is a long-haired calico, to pick her shed off my hands and clothes afterwards and reach across the distance between Mom and me and deposit it in her ash tray. I did this without thinking, this afternoon, then, again without thinking, laughed and said, "Oh, yeah, no more cigarettes, no more ash trays! I forgot!"
Immediately I realized my mistake. An almost silent part of Mom's brain suddenly shouted. Her expression turned hard, her eyes glittered and she said, "That's right!" as though she'd located something she'd misplaced a long time ago and for which she'd subconsciously been looking. "May I please have a cigarette." It was not a request.
Oh shit, I thought. "Mom, we don't have any cigarettes."
Again, with an edge. "May I please have a cigarette."
"Mom, really, we don't have any cigarettes. You haven't smoked since about a week before you went into the hospital and all the cigarettes are gone, now."
She glared at me.
"Mom, I'm going to remind you why you're not smoking anymore. I want you to listen carefully to me." I launched into her recent history including how, since her blood transfusion, she'd been on oxygen almost 24 hours a day, had cut her cigarette consumption to no more than 7 cigarettes a day, usually 3 to 5. As the days passed, I explained, I noticed that each time she had a cigarette during this period, just one cigarette, she became significantly weaker. I reviewed how I stopped her consumption of cigarettes altogether when her right side started to collapse. I explained that because of this her hospital and her SNF stays she hasn't smoked for almost four weeks.
"Mom," I said, "you know that I've allowed you to smoke as long as I didn't think it was endangering your life. You know I've even fought the efforts of others to keep you from smoking on their behalf. I've made enemies, short and long term, over this issue. As long as it didn't appear to be a problem for you that we couldn't deal with I defended your right to smoke. But, Mom, things have changed. It is very obvious now from your spectacular recovery that smoking no longer belongs in your life. Do you remember, just before I took you down to Mesa to the hospital, how I was beside myself with anxiety knowing that I had finally reached a point where I could no longer take care of you? How your weakness had confined you to a wheelchair, how you could barely get in and out of it, how I talked to both you and MCS about realizing that it was probably time to enter you into a nursing home because your care needs had advanced beyond my abilities and how I was desolate about this? How I sat before you and apologized to you for having reached my limit and asked you to forgive me for what I was about to do?"
She had been quiet and unusually attentive through everything I said. "Yes," she said, her voice deep with obvious memory and seriousness. "I remember."
"Well, Mom, I never imagined this but, apparently, your extreme decline and weakness was due largely to smoking. As soon as you stopped smoking you revived. Look at you now, Mom. You're improving in all areas, daily by leaps and bounds. You're using significantly less oxygen than you have for months. Your breathing treatments have been cancelled. Your energy level is soaring. Everything about you has improved. Dramatically. I can't, in good conscience, anymore allow you even one more cigarette. Do you understand what I'm saying?"
"Yes. I understand."
"Mom, I don't know what the future holds. I don't know that I'll always be able to care for you. But I do know, now, that if there is something standing in the way of my being able to care for you and getting rid of it will improve our lives and keep you going, I'm obligated to get rid of it."
Then, I talked about the issue I brought up here in this journal some days ago. "Mom, believe me, I've thought a lot about this. You know how people have a tendency to say, 'Ahhh, she's old, she doesn't have much life left, let her do what she wants,'? Well, I used to think that, too, until I began to see that the combination of no movement and smoking was seriously affecting the quality and maybe even the length of your life. I realized that while thinking this may sometimes be legitimate it can often be an insult to the person about whom its being thought. I could say, 'Go ahead, let her smoke, let her stay in bed, let her have her way about refusing to move. She's old. She deserves that right.' But, Mom, you don't deserve that. Letting you do that too much longer would have landed you in a nursing home because the level of care you would require would have been beyond me. If you end up in a nursing home you certainly wouldn't be able to smoke because you would most likely be bedridden so you wouldn't be able to make it out to the smoking area. If you were in very poor health and I knew that your days were numbered in the single digits, maybe I'd let you have a cigarette. But that's not true right now. Do you agree?"
She thought for a minute or so, looking at me with concentration. I could see the gears working slowly, hitting a few rusty spots but working nonetheless. I had no idea where those gears would rest. I wasn't sure what I was going to do or say if she said, "No." While she thought, so did I, preparing myself for the possibility that I would need to accept her decision to continue the decline that we'd stopped over the last few weeks. I worked furiously to gird myself to handle this possibility resolutely without disappointment, knowing that I would be carrying out her wishes.
I cannot describe my relief and elation when she said, soberly, and deliberately, "Yes."
I burst into tears and thanked her. "Mom," I said, "I will do everything within my power to make your decision worth your while. I will do everything I can to increase my strength so that no matter what happens to you I can remain by your side through everything whatever that means."
"I know you will," she said, "you already have."
I sat before her on the floor and sobbed. When I was able to talk again I said, "You know, Mom, I can't foretell the future. Despite my resolve, there may come a time when your care is beyond me and there's no chance of reversal. These last four weeks have taught me this. I'll do everything I can to keep up with your needs, and you know I'm pretty spectacular at rising out of the ashes. But, if it ever happens that I find I can't..." I started groping. I had no idea how to finish this sentence. What would I do?
Mom stepped up to the plate. "Then I'll have a cigarette."
We both laughed. "And I'll buy it for you."
