Saturday, March 18, 2006
Four days of rain and snow have begun...
...I'm thrilled to report. We began reading out loud, again, in the evening a couple of nights ago after a break of a week or so (could be more, I can't remember). We're still working our way through A History of Old Age. It goes slow because Mom becomes easily bored with the scholarly tone of much of the writing, although she loves the pictures. As we finish each page she insists on taking the book, scrutinizing the plates and reading the captions to herself; they contain much information. We've also been working through Whose Bible Is it?, which is a compact well considered history of the Abrahamic Bible as it is used and regarded by all three Abrahamic faiths. This book, too, though, tends to lose her when it gets slightly technical. Last night, as we were contemplating what to read, Mom noticed Anne Rice's Christ The Lord Out of Egypt on the floor by the TV where it was discarded after we'd finished it. "We haven't read that one yet, have we?" she said.
"Well, yes, Mom, we have, a few months ago. You really enjoyed it."
"Really. I don't remember reading it. Is it good?"
"Oh, yeah. It was so good that we read through the entire book in three days. We put off other things to read it."
"No wonder I don't remember it!" Funny, funny woman! "Well, let's read it again."
So, after we reached the end of the section in A History of Old Age we reread the first chapter of Christ The Lord Out of Egypt. By the end of the chapter Mom was sitting on the edge of her rocker, eyes flashing, lapping it up.
Mom "suggested" that this cloudy, precipitous weekend would be "a good time to do some baking", so we'll try to get in as much as we can. I've already promised her a Tomato Biscuit Pie for one of our dinners, maybe tonight, since everything I need is thawed and handy. We've got a couple blackening bananas, too, so I might make banana bread, if I can find my favorite recipe. I also suggested that we catch up on Northern Exposure, since we haven't completed all three seasons. That sounded like a cozy choice for a cozy weekend to her. I ordered her a three dozen bunch of petite roses which were delivered yesterday and will fully bloom over what she would consider a dreary weekend. I did this on purpose, to help keep her spirits up out of "the gray". She was delighted. They are sitting on the table right next to her rocker, available for close admiration.
Am I feeling better? Maybe, on alternate moments. Funny, a couple of months ago I began experiencing, at odd and what seemed to be unrelated times, my internal voice whispering the following, "It's just us, now." I've shaken it off several times since it started but, last night after the events of this week, some of which I haven't gotten around to recording, yet, but hope I will, finally, I contemplated the echoes as it rattled inside my head, sighed and said, "Yes, well, I suppose it is." Somehow, that acceptance seems to have lightened my burden...not completely, mind you, but, well, little by little...you know...
....later.
"Well, yes, Mom, we have, a few months ago. You really enjoyed it."
"Really. I don't remember reading it. Is it good?"
"Oh, yeah. It was so good that we read through the entire book in three days. We put off other things to read it."
"No wonder I don't remember it!" Funny, funny woman! "Well, let's read it again."
So, after we reached the end of the section in A History of Old Age we reread the first chapter of Christ The Lord Out of Egypt. By the end of the chapter Mom was sitting on the edge of her rocker, eyes flashing, lapping it up.
Mom "suggested" that this cloudy, precipitous weekend would be "a good time to do some baking", so we'll try to get in as much as we can. I've already promised her a Tomato Biscuit Pie for one of our dinners, maybe tonight, since everything I need is thawed and handy. We've got a couple blackening bananas, too, so I might make banana bread, if I can find my favorite recipe. I also suggested that we catch up on Northern Exposure, since we haven't completed all three seasons. That sounded like a cozy choice for a cozy weekend to her. I ordered her a three dozen bunch of petite roses which were delivered yesterday and will fully bloom over what she would consider a dreary weekend. I did this on purpose, to help keep her spirits up out of "the gray". She was delighted. They are sitting on the table right next to her rocker, available for close admiration.
Am I feeling better? Maybe, on alternate moments. Funny, a couple of months ago I began experiencing, at odd and what seemed to be unrelated times, my internal voice whispering the following, "It's just us, now." I've shaken it off several times since it started but, last night after the events of this week, some of which I haven't gotten around to recording, yet, but hope I will, finally, I contemplated the echoes as it rattled inside my head, sighed and said, "Yes, well, I suppose it is." Somehow, that acceptance seems to have lightened my burden...not completely, mind you, but, well, little by little...you know...
....later.
Friday, March 17, 2006
Something I've been meaning to do...
...for a couple of months and finally got around to it. I added a bullet to the "parallels" between child care and Ancient One care in the This Isn't Your Mother's Caregiving essay (the second set of bullets). It's an important bullet.
Ho. Well. Where to begin?
How about some quick review? Yes, I'm still having "cold seizures", so I went back on drugs today. I've been keeping up with The Dailies pretty well and mentioning my over-all physical status in there occasionally, so if you've been keeping up on those, you know how I feel. My Caregiver Burnout Status? Shaky, at best.
The big development is that MPS called this weekend to announce that hers and MPNC's spring break started and their plan was that they'd arrive here Thursday night or Friday morning and stay until Monday. I had already looked up their spring break on the web in anticipation of a call, hoping that warning myself in advance would give me some time to work myself into visitor mode. It didn't. The call went badly. First, I outright refused the visit. Then I suggested she and her family take Mom for the time she would have visited here to give me a break. When she mentioned that she'd talk to her MPBIL about it, I don't know, it very well could have been my perception but there was something in her voice, something about the pauses, and suddenly, my exhaustion and anger took hold and I was off and running. Somehow I first turned the conversation into a "No Nursing Home!" litany, then I talked her and myself out of allowing her to decide whether they'd take on Mom, then I began to rant about how tired I was, how bad I felt, how much I needed a break, how I would consider it if they'd spend the nights in a motel, which they can't afford, that morphed into an agitated defense of my position on nursing homes and my annoyance with "the literature" of caregiving and, whoa, it was pretty bad. Somehow, though, she and I ended up laughing, about something, I'm not sure what, and, at her request, I promised to consider a one nighter. We concluded the call with a promise that we'd talk again "Tuesday."
That night I had what at that time seemed like a brilliant idea: Invite them up for a one-nighter with the stipulation that I would put her through a sort of caregiver bootcamp, as described in the immediately previous link. Essentially, I'd have her do everything I do, exactly as I do it, explaining it all to her, talking to her about the history and necessity of everything and adding in little snippets of background pertinent to why I wasn't hiring others to do these things. Sounded like a wonderful idea as I was drifting off to sleep. I realized, at that time, that I'd have to prepare some supplemental reading for her, which is what the aforementioned link is.
Once I got involved in creating the supplemental reading the next day, I realized how exhausting the whole process was going to be for me, how I already felt both emotionally and physically challenged and I simply wasn't up to even this. In addition, I couldn't stop thinking about something she'd said when, after ranting about the lack of help and the need for a break, my absolute disgust with the idea of putting Mom in a nursing home to allow for a few days of "respite" (a word I am truly beginning to hate) for me, and my experience and how I was sure that, in fact, it wouldn't be respite at all, I'd simply be doing, yet again, what I did when Mom was in the SNF before, making sure she didn't come home dehydrated, bowel impacted, hopped up on unnecessary insulin, with dry, irritated skin, in a near insane voice, triggered by her silence at my long outburst, I asked her if she believed me.
"I believe that this is your perception," she said, very, very carefully.
This, you see, is the one sister who has never read any of my online material about taking care of Mom. She knows only verbal snippets, here and there, of the many challenges I've faced and the history of my decisions about how to handle those challenges. At one point in the conversation she questioned a very snide remark I made about the possible organizers by of the NFCA by asking me if I'd actually checked on this. I was taken aback that she, first, didn't understand that I was ranting about this but also that she was completely unaware of how much research I have done and continue to do on everything that touches mine and my mother's life, despite the fact that in order to conduct such research I have to put off other things. Essentially, I felt as though she was saying, "Hey, you're not an expert, watch what you say."
The thing is, I am an expert. I'm an expert both by virtue of my experience with my mother and by virtue of my research on the subject. But, she would have no way of knowing this because she doesn't read my online account of Mom's and my journey and we talk so infrequently that, when we do, there is very little time to devote to me recounting, with any complexity, Mom's and my adventures.
So, finally, on Monday, I decided that I would charge her with the following "visit" and informed her of my decision on Tuesday: I asked her to use the time she and MPNC would have visited with us up here to read the journals and really get to know Mom and me and our situation. When I talked to her I started her off with a list of terms to search and essays to read. The following day I FedExed her a further apologia with yet another list of posts to read and terms to search within the journals. Then, I emailed her with another phrase to search. Some of these search terms and essays were as follows:
Part of the additional letter I FedExed her is below:
I should mention, I also bluntly told MPS when I talked to her Tuesday evening that part of "my" problem was my lingering cold, my continuing experience of severe caregiver burnout and, not least of all, my anticipation of yet another rare (this season) weekend of rain and now, thus, not wanting to spoil my possible enjoyment of that weekend with "an invasion". Yep, that's the term I used.
So. The post immediately below this, which is linked above toward the beginning of this post, is the supplemental material I devised had I decided I was up to managing a bootcamp visit. I wasn't, but, you know, as I read through it I thought it would be valuable to publish it, anyway. It's the first time I've ever recounted, in detail, most of what I do in a normal day (that doesn't include errands, doctor or lab visits, attempts to get Mom "out and moving", etc.). I think it's important to include it in these journals.
Maybe, someday, I'll put one or more of my sisters through such a bootcamp. Maybe not. In the meantime, the idea certainly has merit and maybe someone can use the following post as a template for launching a bootcamp for extended family members of their own.
One more thing I wanted to mention to my "audience"; during the prickly phone call that preceded my decisions about "the visit", I mentioned to MPS that when "all this" began we should have worked it so that all four of us were directly involved in Mom's care sequentially, much like brainhell's comment on a long ago post. I also said that, at this point, it's probably too late to do this. It probably is, for several reasons, two of the most important being that continuity of medical care and direction would be severely compromised and Mom may be a bit too easily confused, now, to handle traveling from home to home four times a year, since we all live long distances from one another. An additional truth is that, when I began this journey with Mom, four pairs of hands and four houses were not only not necessary but would have been onerous, considering the distance involved. When her health went through its initial deterioration in the fall of 2000 everything happened quickly and needed to be addressed with such concerted force that dividing her year into four places and four different approaches would surely have been a very stupid move and would probably have had less than felicitous consequences for her health and her need to remain in a stable environment. I don't know; I suppose, under the right circumstances, this sort of arrangement could work but, frankly, from my experience with my mother, I actually can't see any time at which it would have worked for us. What would have worked, though, is if, after the health crises were over, my sisters would have learned the objectives I've set for her health and her life, learned the routines and the modes of thought that make these possible and learned how to host her successfully for a week here and a week there, maybe even a month here and a month there. Maybe that's still possible. Maybe not. I have ominous visions, now, of her spending time with one of my sisters, having some sort of health crisis, ending up in the hospital under an unfamiliar doctor's care and the doctor being directed by daughters and sons-in-law who aren't practiced in aggressively managing her health care; whereupon, Mom ends up with scopes in every last hole of her body, on medications that are clearly inappropriate, while everyone stands around and says, "Well, that's what the doctor recommended." Of course, I could always drop my "respite" and fly to the problem and take over management, which past medical misadventures inform me would be a series of, first, having to fight doctors and other medical professionals into accepting my understanding and management, then having to be there constantly to make sure they didn't take advantage of my absence. Frankly, those possibilities are easier for me to contemplate managing on familiar ground and I don't see any reason, being her "main manager", why I shouldn't insist that she remain in medical arenas and with doctors and hospitals who know me, even though they shudder when they see me coming.
Oh, and I want to mention two more things for you to search out, MPS, are you "listening"? Search: "medical advocate". If you scroll through the posts that come up you'll find one in which I published a review of information I sent to a company who is organizing a subsidiary to provide medical advocates. The information I sent delineates what I, as a caregiver who is a medical advocate, would want in a hired medical advocate. As well: Search: "My Directive to the Hospital" and read the entire post. See? I really am not merely a reactionary. I'm an experienced, knowledgeable participant in society's (minimal, at this time) efforts to improve caregiving on all fronts. While it's true that I am often outrageous in order to be an agitant, it's also true that I am not simply standing on the sidelines sighing and weeping.
...life continues...
...later.
The big development is that MPS called this weekend to announce that hers and MPNC's spring break started and their plan was that they'd arrive here Thursday night or Friday morning and stay until Monday. I had already looked up their spring break on the web in anticipation of a call, hoping that warning myself in advance would give me some time to work myself into visitor mode. It didn't. The call went badly. First, I outright refused the visit. Then I suggested she and her family take Mom for the time she would have visited here to give me a break. When she mentioned that she'd talk to her MPBIL about it, I don't know, it very well could have been my perception but there was something in her voice, something about the pauses, and suddenly, my exhaustion and anger took hold and I was off and running. Somehow I first turned the conversation into a "No Nursing Home!" litany, then I talked her and myself out of allowing her to decide whether they'd take on Mom, then I began to rant about how tired I was, how bad I felt, how much I needed a break, how I would consider it if they'd spend the nights in a motel, which they can't afford, that morphed into an agitated defense of my position on nursing homes and my annoyance with "the literature" of caregiving and, whoa, it was pretty bad. Somehow, though, she and I ended up laughing, about something, I'm not sure what, and, at her request, I promised to consider a one nighter. We concluded the call with a promise that we'd talk again "Tuesday."
That night I had what at that time seemed like a brilliant idea: Invite them up for a one-nighter with the stipulation that I would put her through a sort of caregiver bootcamp, as described in the immediately previous link. Essentially, I'd have her do everything I do, exactly as I do it, explaining it all to her, talking to her about the history and necessity of everything and adding in little snippets of background pertinent to why I wasn't hiring others to do these things. Sounded like a wonderful idea as I was drifting off to sleep. I realized, at that time, that I'd have to prepare some supplemental reading for her, which is what the aforementioned link is.
Once I got involved in creating the supplemental reading the next day, I realized how exhausting the whole process was going to be for me, how I already felt both emotionally and physically challenged and I simply wasn't up to even this. In addition, I couldn't stop thinking about something she'd said when, after ranting about the lack of help and the need for a break, my absolute disgust with the idea of putting Mom in a nursing home to allow for a few days of "respite" (a word I am truly beginning to hate) for me, and my experience and how I was sure that, in fact, it wouldn't be respite at all, I'd simply be doing, yet again, what I did when Mom was in the SNF before, making sure she didn't come home dehydrated, bowel impacted, hopped up on unnecessary insulin, with dry, irritated skin, in a near insane voice, triggered by her silence at my long outburst, I asked her if she believed me.
"I believe that this is your perception," she said, very, very carefully.
This, you see, is the one sister who has never read any of my online material about taking care of Mom. She knows only verbal snippets, here and there, of the many challenges I've faced and the history of my decisions about how to handle those challenges. At one point in the conversation she questioned a very snide remark I made about the possible organizers by of the NFCA by asking me if I'd actually checked on this. I was taken aback that she, first, didn't understand that I was ranting about this but also that she was completely unaware of how much research I have done and continue to do on everything that touches mine and my mother's life, despite the fact that in order to conduct such research I have to put off other things. Essentially, I felt as though she was saying, "Hey, you're not an expert, watch what you say."
The thing is, I am an expert. I'm an expert both by virtue of my experience with my mother and by virtue of my research on the subject. But, she would have no way of knowing this because she doesn't read my online account of Mom's and my journey and we talk so infrequently that, when we do, there is very little time to devote to me recounting, with any complexity, Mom's and my adventures.
So, finally, on Monday, I decided that I would charge her with the following "visit" and informed her of my decision on Tuesday: I asked her to use the time she and MPNC would have visited with us up here to read the journals and really get to know Mom and me and our situation. When I talked to her I started her off with a list of terms to search and essays to read. The following day I FedExed her a further apologia with yet another list of posts to read and terms to search within the journals. Then, I emailed her with another phrase to search. Some of these search terms and essays were as follows:
- search phrase: Dead Zone;
- search words: "dementia", "Dementia-Lite", "demented";
- search phrase: freedom of thought
- search word: research;
- search phrase: non-alternative medical professionals
- search acronym: PCP
- search word: book
- search phrase: health review
- The 3/30/05 post entitled During one of my less-than-good days a few weeks ago...
- Posts immediately following the 11/1/05 and 2/3/05 health reviews
- posts: All the NFCA posts;
- essay: Guilt Trip;
- essay: Love and All That Shit
- essay: Medicine in the Hot Seat;
- essay: Physician in the Hotseat;
- essay: This Isn't Your Mother's Caregiving
Part of the additional letter I FedExed her is below:
When I talked to you about visiting previous to Tuesday's phone call...[I realized] part of the fault has been mine; that I actually told each of my sisters, some time ago, that they didn't need to read my journals and probably wouldn't want to. I'm also the one who famously said, to everyone, several times, "We can work around you; we're the flexible ones." Well, I was wrong in both of those statements. In essence, by saying both of these things I inadvertently made sure that Mom's and my life and lives would automatically be trivialized. I'm not sure why I did this. I think it has something to do with my embarrassment over the amount of material [in the journals] and in not wanting to make it look as though I consider my life more important than anyone else's. The weird thing is, however ridiculous and stupid my purpose, I accomplished it. Here I am, caregiver extraordinaire, assumed to be (because I said I was) existing at everyone else's pleasure and with no one, absolutely no one, I can depend on to spot me because, well, because, silently or aloud, we all agreed that only one person in our family should be doing this and what I'm doing isn't important enough to keep up on...that I'm in a holding pattern.So, you may be asking, why am I publishing all the above mess, including my decision on the "visit" and part of the personal letter I sent to MPS? Well, you've heard it before: I know I'm not the only caregiver having to deal with recalcitrant extended family. I'm not the only caregiver who's made mistakes in dealing with family. I'm not the only caregiver who, with good intentions, actually screwed myself when it comes to soliciting help from extended family. I know, from experience, that it doesn't help when a professional site dedicated to supporting caregivers uses oblique, polite phrases like "the challenges of caregiving", "the stress of caregiving" and "the spiritual hardships of caregiving". These "challenges", these "stresses", these "hardships" need to be delineated, in extensive, dirty detail, in order for any discussion to actually be valuable to a caregiver and for caregivers to feel less alone and find the inner strength necessary to best all of these situations. It truly does not help to have someone say, "I know what you're going through." It truly does help when someone recounts, in detail, a problem and tells you either how it bested them, how they bested it, and/or what they're doing now, specifically, to deal with it, including whether they're simply ignoring it and letting the problem slide for awhile.
I'm not sorry I'm doing what I'm doing, MPS, but I am sorry that I ever let Mom's and my extraordinary journey become an afterthought to everyone else's lives. Stupid, stupid move. Well, intense caregiver burnout has made me realize that I can't afford to do this, anymore. I don't actually expect anyone to spot me, anymore. I really do believe it's too late, because I've become so thorough at this that everyone is afraid to take care of Mom. Actually, I don't consider that my fault. I've always been thorough, about everything. But, you know, the truth is, I probably wouldn't trust anyone in the family to take care of Mom for me for awhile, anymore, and, you know why? No one really knows what I do, why I do it, and the reason no one knows this is because no one reads the journals. I "warned" everyone away from them but, you know what, if I knew one of my sisters was writing extensively online about her life, even if she humbly told me I didn't have to read it, I'd be all over it. I do, in fact, on a fairly regular basis, search out [all my sister's] names online just to see if maybe someone is doing this. Of course, chances are such writing would be under an assumed name. I can't imagine anyone else in our family besides me writing about themselves online under their real name because, well, as far as I know, no one else was born with the drive to live inside out. But, hope springs eternal...
...
MPS, you need to understand, I'm not just marking time, here, until Mom dies. I've never been doing that, while I've been with Mom or since I was born. I never will be doing that. Everyone treats me as though I am and that's unfortunate because, you know, that's caused everyone, including you, to allow yourselves to not see that I am a different woman than I was 12 years ago when I started this, that I have a perspective on caregiving that should be respected, not only by each of you but by the entire world, including the arenas of professional caregiving and medicine; that I'm not a lightweight; I'm not simply a reactionary. I know what I'm talking about, I think and read and research deeply about all this, as well as making sure I remain acutely aware of my own experience. And, finally, I'm the only one who really knows Mom anymore and can approach her with the informed dignity and respect she deserves from everyone. But, you know, it doesn't have to be this way. Everything, everything that could allow all my sisters to be able to approach Mom this way is, you got it, online, readily available, always updated, extremely complete and fully searchable. Time for me to put my best foot forward and demand that both Mom and me are acknowledged for who each of us has been, who each of us now is and the possibility that exists in each of us. It's only coincidence that you happen to be the first in my path.
I should mention, I also bluntly told MPS when I talked to her Tuesday evening that part of "my" problem was my lingering cold, my continuing experience of severe caregiver burnout and, not least of all, my anticipation of yet another rare (this season) weekend of rain and now, thus, not wanting to spoil my possible enjoyment of that weekend with "an invasion". Yep, that's the term I used.
So. The post immediately below this, which is linked above toward the beginning of this post, is the supplemental material I devised had I decided I was up to managing a bootcamp visit. I wasn't, but, you know, as I read through it I thought it would be valuable to publish it, anyway. It's the first time I've ever recounted, in detail, most of what I do in a normal day (that doesn't include errands, doctor or lab visits, attempts to get Mom "out and moving", etc.). I think it's important to include it in these journals.
Maybe, someday, I'll put one or more of my sisters through such a bootcamp. Maybe not. In the meantime, the idea certainly has merit and maybe someone can use the following post as a template for launching a bootcamp for extended family members of their own.
One more thing I wanted to mention to my "audience"; during the prickly phone call that preceded my decisions about "the visit", I mentioned to MPS that when "all this" began we should have worked it so that all four of us were directly involved in Mom's care sequentially, much like brainhell's comment on a long ago post. I also said that, at this point, it's probably too late to do this. It probably is, for several reasons, two of the most important being that continuity of medical care and direction would be severely compromised and Mom may be a bit too easily confused, now, to handle traveling from home to home four times a year, since we all live long distances from one another. An additional truth is that, when I began this journey with Mom, four pairs of hands and four houses were not only not necessary but would have been onerous, considering the distance involved. When her health went through its initial deterioration in the fall of 2000 everything happened quickly and needed to be addressed with such concerted force that dividing her year into four places and four different approaches would surely have been a very stupid move and would probably have had less than felicitous consequences for her health and her need to remain in a stable environment. I don't know; I suppose, under the right circumstances, this sort of arrangement could work but, frankly, from my experience with my mother, I actually can't see any time at which it would have worked for us. What would have worked, though, is if, after the health crises were over, my sisters would have learned the objectives I've set for her health and her life, learned the routines and the modes of thought that make these possible and learned how to host her successfully for a week here and a week there, maybe even a month here and a month there. Maybe that's still possible. Maybe not. I have ominous visions, now, of her spending time with one of my sisters, having some sort of health crisis, ending up in the hospital under an unfamiliar doctor's care and the doctor being directed by daughters and sons-in-law who aren't practiced in aggressively managing her health care; whereupon, Mom ends up with scopes in every last hole of her body, on medications that are clearly inappropriate, while everyone stands around and says, "Well, that's what the doctor recommended." Of course, I could always drop my "respite" and fly to the problem and take over management, which past medical misadventures inform me would be a series of, first, having to fight doctors and other medical professionals into accepting my understanding and management, then having to be there constantly to make sure they didn't take advantage of my absence. Frankly, those possibilities are easier for me to contemplate managing on familiar ground and I don't see any reason, being her "main manager", why I shouldn't insist that she remain in medical arenas and with doctors and hospitals who know me, even though they shudder when they see me coming.
Oh, and I want to mention two more things for you to search out, MPS, are you "listening"? Search: "medical advocate". If you scroll through the posts that come up you'll find one in which I published a review of information I sent to a company who is organizing a subsidiary to provide medical advocates. The information I sent delineates what I, as a caregiver who is a medical advocate, would want in a hired medical advocate. As well: Search: "My Directive to the Hospital" and read the entire post. See? I really am not merely a reactionary. I'm an experienced, knowledgeable participant in society's (minimal, at this time) efforts to improve caregiving on all fronts. While it's true that I am often outrageous in order to be an agitant, it's also true that I am not simply standing on the sidelines sighing and weeping.
...life continues...
...later.
Monday, March 13, 2006
Gail-The-Caregiver Bootcamp Supplemental Reading for MPS
In the Morning Before Mom Awakens:
This will be your easiest part of the day. There aren't very many things you need to do to prepare for the beginning of Mom's day:
Pre-Bath Time:
ADDITIONAL NOTE: Mom is fairly capable of bathing almost all her body parts with intense coaching. The reason we don't do this is because this extends the bath portion, alone, to about an hour and a half and the amount of coaching involved is both tiring and irritating for both of us. I've had to weigh the obvious physical advantages of her bathing every part of herself against the disadvantages of a horrifically extended and enervating bath time every day and have chosen to keep bath time as short and sweet as possible by having her bathe part of herself and me bathe the rest. It keeps both of us in a good mood.
Also, it is imperative that you keep an eye on her as she washes herself and while you're washing her to make sure she washes everything thoroughly.
ADDITIONAL NOTES: The reason you make sure her glasses and her watch are NOT on the vanity beside her during the bathing procedure is so that she does not reach for them and try to put them on during bathing, which she WILL DO if you leave them handy and in her line of sight.
Breakfast:
It's important to remember, MPS, that there is a reason, a good, experienced reason, for everything, absolutely everything, I do with her. Change is nice and sometimes stimulating but is a spice that must be used lightly and with sound judgment. Believe me, there will be plenty of "change" simply in the fact that you're being the active caregiver rather than me.
As well, if it happens that, for instance, Mom gets visits "The Dead Zone" during your bootcamp, I'll guide you through find the information on deaths and explaining all this to her.
At some point during the day, when the time "seems right", I'll coach you on guiding her through the very simple exercises we do every day to every other day, depending on Mom's mood. You'll need to hook her up to an oxygen tank for these, even though they aren't rigorous, just in case. These are things like, raising and lowering her knees, going up on tiptoe while sitting, chicken flapping her arms, kicking her legs from the knee, rolling her head, raising and lowering her shoulders, raising and lowering her arms, reaching above her head, rolling her ankles, standing up and sitting down a couple of times, swaying her hips side to side while she's up like she's doing the hula; I improvise a lot on these depending on how she's doing and what I think might help. Sometimes we do them while she's sitting in her rocker, sometimes I set up a kitchen chair in the living room with the platform. Just depends on how much energy she has on the day and at the time we do them. We don't use weights anymore, as she has a tendency to not control them and could very well damage her muscles, the way she swings them around.
Preserving Mom's dignity is important. I've found, especially during procedures such as bathing and cleaning her after a bowel movement, humor and truth work very well, hand in hand with absolutely no balking on my part, no matter what I need to do. More often than not privacy is not a luxury I can afford to give her, so I rarely apologize for my presence during those times when most people would prefer to be left alone, I do not touch her with hesitation, I kid her, and myself, about such things as checking the quality of her urine, fishing her shit out of the toilet, all the amazing "things" that appear on one's body just by virtue of being old, etc.
I won't require you to set up dishes in the dishwasher or put them away after they're clean, although I will require you to be right by my side when I do these things. I will be doing the cooking and meal planning so you won't need to do these. You will need to be right by my side when I do these things, though. You see, you aren't just going through Caregiver Bootcamp, you're going through Gail-The-Caregiver Bootcamp. I don't have any help so you can't ask anyone for help. I often have to visit with Mom while I am performing chores and functions so you'll have to do this, too. We will not be "splitting" chores because I am not able to "split" chores. Even if it's a chore I'm doing instead of you, you will have to stick right by me while I do it. If I'm in a position where I can't check on Mom at a particular moment, neither can you.
I will also probably keep up a running commentary on the history of chores, medications, etc., so you'll get a clear understanding of why I do what I do. If you have suggestions, please feel free to offer them. I'll consider them with you and explain why I think they are either good or a bad ideas.
I know that if Mom were in your home there would be changes in the way you take care of her, primarily because you'd have two live-in helpers. Mom and I aren't in your situation and I'm not trying to duplicate whatever situation you might create in which to care for her. I'm trying to give you as complete as possible an understanding of what I do with her every day and why.
This will be your easiest part of the day. There aren't very many things you need to do to prepare for the beginning of Mom's day:
- Make sure the bathroom is prepared: All towels and wash cloths are where they should be (positioning and of these will be covered in the "After Breakfast Chores" section), the trash will accommodate two pairs of loaded-with-urine paper underwear, plenty of baby wipes are handy just in case Mom has a bowel movement, anti-itch cream and Aloe Vesta 2-1 groin area cleanser are handy, as well as (at this time) the styptic pencil and spray antiseptic in case Mr. Man wanders in the bathroom and accidentally scratches Mom. I will see to it that she's shaved the day before you arrive so you won't have to worry about this.
- Find the blood pressure cuff and place it on the right side of the bathroom vanity so it will be handy.
- Decide whether you'll be serving ham or bacon as Mom's breakfast meat. If you'll be serving bacon, put the number of slices you'll be cooking in the skillet and place the cover on the skillet.
- After you make your coffee, refill the pot so all you'll need to do when Mom's bath is done is turn the pot on to boil water for her morning cup of detox tea.
- Set up and prepare a cup with a bag of detox tea and place it by the water pot.
- Take the pills out of the pill holder that will be administered at breakfast and place them in a napkin securely folded over them. You can leave these on the counter, where the cats won't find them interesting. Place the pill holder over them so the napkin doesn't open and the pills don't scatter.
- Take out a tall drinking glass and measure two level tablespoons (six level teaspoons) of soluble laxative into the glass. Leave on the counter.
- If Mom isn't up within 12 hours of having retired the previous night, it's time to awaken her.
- Do this gently and with good humor but not so gently that she is allowed to resist awakening.
- Immediately upon alerting her that it's morning, push her window blinds back.
- Find the glucometer and prepare it for taking Mom's blood sugar.
- Direct Mom to hang her hand over the edge of the bed and take her blood sugar.
- While Mom is rousing, retrieve the pills she takes immediately upon arising (except for the Protonix, which is always in the bathroom) from the pill holder. Also, if you're serving bacon, turn the burner on to "3" to get it started.
- Give the pills to her, even if she's still laying down (which she usually is), although you'll want to direct her to raise up on her elbow: Hold her water glass (with straw) for her and deliver each of the pills to her mouth; do not let her handle the pills as she will probably have urine on her hands. Give her a drink of water after each of these three pills is administered.
- This is usually when I strip her top blankets, put her "foot blanket" on the small rocking chair in her room and take the sheet and cover directly to the washing machine. This gives her extra incentive to rouse more fully. Take her pillow out from underneath her head (she'll move for you), strip it of its pillow case, put the pillow on top of the "foot blankets" on the small rocker and take the pillow case to the washing machine.
- Since you're "company", it's possible that Mom will already be seated at the edge of the bed when you return. If not, coax her up with conversation and good humor, ask her if she was dreaming, if so what about, how she feels, how her back and knees feel (they'll probably be fine), etc. If the cats come in and she decides to socialize with them, that's fine.
- While she's socializing with the cats and/or coming to terms with the idea of getting up, transfer her water glass to the left edge of the vanity in the bathroom (you'll need it when you administer her Protonix; you'll want to put on on the left side because she may decide at some point during bathing that she wants a sip of water). Collect her glasses and her watch and put them in the bathroom on top of the baby wipes box that sits on top of the medicine cabinet.
- Once she's sitting on the bed, direct her to take off her oxygen (if it's not already off; it's a good idea to encourage her to keep it on until she's in a sitting position, as it helps her to get herself upright, but, sometimes she refuses to keep it on this long), turn off the oxygen concentrator once she's taken off the cannula and direct her to take off her pajama tops and put them "on the bed, not over the edge", as they will most likely be soaked with urine and you are avoiding the possibility of them dropping to the floor or dripping urine on the carpet.
- If she hasn't yet blown her nose "really, really good", remind her to do this (so that her breathing isn't impaired). Listen to make sure she has blown it thoroughly.
- When you judge that she's ready to stand up (don't ask her, she'll say no; use your best judgment), offer your hands to help steady her but don't pull her, just let her use them as leverage.
- Once she's on her feet, direct her to stretch her body up, and invite her to wiggle her hips back and forth, reminding her that this will help "work out the stiffness".
- When she seems ready, allow her to reach for the dresser and walk, under her own steam, into the bathroom. Be sure to remind her, probably a couple of times, to "take off your underwear and throw it in the trash, not on the floor".
- Once she's headed toward the bathroom, strip the bed of the bottom sheet, put it in the washing machine, spray her plastic sheet down with the vinegar/water mixture on her dresser, get the small fan, plug it in, place the fan facing her bed and turn it on to the "3" setting and "oscillate".
- The process of getting her into the bathroom and naked on the toilet usually takes anywhere from 10 to 30 minutes, depending on how slow she's feeling and on how much socializing she decides to do. Occasionally it takes longer but I don't foresee this happening when you're visiting.
Pre-Bath Time:
- Stripping her bed and turning the fan on it should give Mom enough time to settle down to a point where you'll get a fairly accurate blood pressure reading. If she doesn't seem relaxed enough, duck out of the bathroom and do a few more chores, i.e., empty the dishwasher (this is why I leave the dishwasher for emptying until Mom awakens), put out plates for breakfast; whatever you can think of. DON'T start Mom's tea yet. It will be too cool, according to her preference, for her to begin drinking it when she finally gets around to it.
- Once you've decided you'll get a "good" blood pressure reading (this is always debatable, since having her blood pressure taken in the morning is always irritating to Mom, as so many things are going on at this time): Direct her to relax completely. You'll be putting the cuff on her left arm. You will need to remind her, calmly and repeatedly, to completely relax her arm and not "help" you hold it. This may fail but you have to try. Once the cuff is placed on what you hope is her flaccid arm, raise her forearm to where the cuff is at about the position of her heart, continually reminding her to keep her arm completely relaxed, from the shoulder. Hold her arm in this position throughout blood pressure taking. Before pressing the button on the cuff, say, "Keep your arm completely relaxed; don't move, don't talk, don't move your fingers." Then press the button and place your right hand firmly on her left shoulder to remind her to keep her arm relaxed from the shoulder. If she should move or talk while you're taking her blood pressure, stop the process by pushing the button on the face of the monitor, drop her arm, and let it go. Normally I'll try once more to get a good reading after leaving the bathroom and letting her relax for a few minutes, but this doesn't always work. In your case, since taking her blood pressure is rarely critical and probably won't be on the days you do this, we'll just let it go.
- Now it's time for you to administer her Protonix, exactly the way you administered the other pills: You put it in her mouth and offer her water afterwards.
ADDITIONAL NOTE: Mom is fairly capable of bathing almost all her body parts with intense coaching. The reason we don't do this is because this extends the bath portion, alone, to about an hour and a half and the amount of coaching involved is both tiring and irritating for both of us. I've had to weigh the obvious physical advantages of her bathing every part of herself against the disadvantages of a horrifically extended and enervating bath time every day and have chosen to keep bath time as short and sweet as possible by having her bathe part of herself and me bathe the rest. It keeps both of us in a good mood.
Also, it is imperative that you keep an eye on her as she washes herself and while you're washing her to make sure she washes everything thoroughly.
- At this point you should read Song of the Washer-ing Women from the second verse on. This is a blow by blow description of bathing her, right up to me leaving her to put on her shirt and glasses and coming out to the dinette. There are a few changes since it was written:
- Before anything else happens I give her a warm, wet, yellow wash cloth and remind her, every day, it's for her to wipe her eyes. I direct her to "wipe your eyes really, really good so you're not tempted to wipe your eyes with a soapy wash cloth," which she may do anyway. You might have to keep her from getting soap in her eyes a couple time during bathing. Sometimes she will insist that she doesn't get soap in her eyes. You won't have the benefit of experience from which to speak, but act as though you do, and direct her, if she's desperate, to wipe her eyes on the large hand towel hanging to her right.
- You will find it necessary to keep her focused on the routine of bathing and may have to bring her back to parts of it several times, including making sure she gets all areas soaped and all areas rinsed twice. She often decides, after soaping her left arm, that she should switch to her right arm. You need to bring her back to her left arm. We do each section separately in order to prevent cross-contamination. It is never okay for her to "go light", unless she didn't leak the night before and a "short bath" is in order. Bathing thoroughly all over is not only important from a cleaning standpoint but helps keep her skin stimulated.
- Before she closes the toilet seat after she stands up for torso bathing, check her urine to make sure it's clear.
- While bathing her I check her skin all over, note, usually out loud because she's also interested in this, any new bruises or how old bruises are healing; currently I also note any new scratches from Mr. Man, whether there are any new dry or irritated patches or places where she's been scratching (I put anti-itch cream on all new irritated patches and places where she's been scratching; if she's bleeding from a kitty scratch or something else, I use the styptic pencil on it and after that dries I spray it with the antiseptic on the bathroom vanity; occasionally I'll put a band aid over the spot, it it looks like it'll reopen); notice any new moles or "skin things", as we call them, check the condition of all places that are healing;
- We no longer use cornstarch in her thigh creases unless she has an obvious irritation (you'll be checking for this). She almost never has this, anymore.
- I put one pair of paper underwear (unless she needs furosemide, then I put two pairs on her) and her pants on while she's standing after the torso bathing. Then she sits on the closed toilet.
- Immediately after she sits down I squirt lotion on one of her hands and direct her to rub it all up and down her arms. You need to be firm about this, as she is apt to simply smear it over her forearms, not rub it in and not rub it onto her upper arms.
- While she's lotioning herself I take the towel under her feet away and put her footsies on.
- I also take all towels and wash cloths out of the bathroom and put them in the washer at this time.
- When I reenter she's usually ready for me to put her watch on her left arm. Make sure that the face is on the bottom of her wrist and that it is positioned so that when she turns her wrist to read her watch the face isn't upside down. She'll check and correct you if you've done it wrong.
- You'll need to help her on with her bra. Once it's on and fastened make sure that the straps are well positioned on her shoulders and her breasts are fully in the cups.
- At this point, bring her glasses down, drape her shirt over the side of the tub, tell her to put on her shirt and glasses and meet you in the dinette.
ADDITIONAL NOTES: The reason you make sure her glasses and her watch are NOT on the vanity beside her during the bathing procedure is so that she does not reach for them and try to put them on during bathing, which she WILL DO if you leave them handy and in her line of sight.
Breakfast:
- Turn the bacon up to "4" and turn on the water pot immediately upon coming out into the kitchen.
- Mix her orange juice in the glass with the soluble fiber: A little over 1/3 of a glass of orange, the rest water. Stir vigorously while adding liquids so that the fiber dissolves.
- Place her breakfast pills and orange juice on the table where she sits.
- If you have time before she comes into the kitchen, prepare her Aloe Vera Gel: Fill the blue 1/4 measuring cup half full with gel; place next to her pills on the table with a spoon on a separate napkin.
- When Mom enters the kitchen check the disposition of her blouse and fix it while she's holding onto the counter. This will probably involve correctly positioning the shoulder seams, straightening the sleeves and pulling the blouse down both in front and in back for a good fit.
- Ask her if she's comfortable or if she wants her housecoat. If she doesn't want it, place it over the back of her chair.
- Let her make it to the table under her own steam. She'll be slow but she'll do fine.
- Once she's at the table, help her sit so that she's square on the chair and her feet are on the platform beneath her chair. I'll coach you through this.
- Once she's seated, direct her to lift her feet and slide her into position as close to the table as necessary. Remind her not to touch her pills, you'll direct her through pill taking.
- She'll probably reach for a Kleenex to blow her nose and wipe her eyes before you are able to give her pills. If her eyes are watering extensively you'll want to apply the Opcon A eye drops, two drops in each eye; afterwards, give her a chance to wipe the excess off her face.
- When she's ready, take the pills, two at a time except for the extremely large pill, put them in her hand, make sure they make it to her mouth without dropping out of her hand (if they do, stop the process and find the dropped pill immediately), then coach her to drink some orange juice. Continue until her pills are taken.
- Direct her to eat her aloe vera gel.
- Continue preparing breakfast, including: When the water pot turns itself off, fill the tea cup with water and let it stand. You'll be giving this to her after she finishes her orange juice (which will probably be some minutes after breakfast).
- While she eats her breakfast, if she's not paying much attention to her orange juice, remind her, repeatedly, if necessary, to drink her orange juice. If reminding doesn't do the trick, stop her periodically during breakfast, direct her to pick up the glass and take a drink of orange juice. You may, at some point, need to say to her, "drink half of what's left right now," and "you can't absorb orange juice through your hand," especially if you've become distracted and she's finished almost all her breakfast without drinking hardly any of her juice. Keep in mind that at this point she is dehydrated and this is her first substantial fluid of the day.
- When breakfast is done, if orange juice remains, coach her through finishing it.
- Replace her orange juice with her tea, which will be at a proper temperature by now. She is allowed to sip this throughout her "morning" period before she takes her nap, but she must have it finished before she lays down for a nap.
- Unless we're doing something at the breakfast table, like playing a game or conversing, you'll want to get her into the living room in her rocker as soon as possible. Otherwise, you'll need to remind her repeatedly while she's at the table, "feet flat on the floor Mom." This is important because if she spends too long with her feet kicked back underneath her it stretches her knee tendons and her right knee (and sometimes her left) "give(s) her fits" all day. If this happens, you'll need to put the knee bandage on her right knee over her pants for support, but, overall, it's best to keep this from happening because when she's wearing the knee bandage the leg in question tends to swell a bit.
- Anytime she arises from the table you'll want to direct her thusly:
- Tell her to pick up her feet. You pull the chair out from the table so she has plenty of room to move;
- Tell her to "move as far to the right as you can, Mom; no, keep going, you want your legs to be as close to perpendicular to the back of the chair as possible";
- "Ah, ah, ah, no, get your right hand off the table, don't haul yourself up, raise yourself with your legs and your left hand on the table for support."
- "Okay, lean way forward from the hips, as far as you can to transfer your weight to your legs, do it quickly, if you can, steady yourself with your left hand on the table, okay, up you come, good! Good!"
- The reason you are trying to keep her from hauling herself up is that she frequently suffers minor back pulls or knee pulls if she's left to get herself up that way. Believe me, you don't want her pulling her knees or her back, even minor pulls.
- When she sits in her rocker, in order to make sure she sits as straight as possible (which is important to keeping her hips from hurting and making it easier for her to arise from the chair), hold her hands while she positions herself in front of the chair, direct her to stand straight and back up until she feels the seat of the chair with the back of her legs, direct her to center herself in front of the seat (she's usually a bit to her left); as she sits, direct her to bend her knees, stick her ass out and sit "straight back and down". This will help her sit up and straight instead of slouching and sitting crooked on her hips.
- After breakfast, while keeping a close eye on Mom, you'll want to begin the chores that are necessary before she takes a nap, the chief chore being making her bed; the rest just kind of fall in place and are more convenient to do at this time. Usually, just before I serve her breakfast, her bed is dry of the vinegar/water solution so I apply the alcohol, which disinfects the sheet. I apply three splashes along the sheet, top, middle and bottom, glove one hand with a latex glove and, using a double thickness of paper towel, rub the alcohol over the surface of the sheet and along the front side. Keep the fan trained on the bed. Then, pick up her plastic covered pillow and, using the soaked paper towels, towel down the plastic pillow cover. By the time breakfast is finished her bed will be dry enough to make. You want to make it as early as possible so that it will be ready whenever she decides she wants to nap (within reason).
- During this particular chore time you'll probably also want to start the laundry, which you'll be drying in two cycles later in the day. You'll have enough hot water by this time.
- Replenish the towels in the bathroom from the clean ones in the linen closet. I'll coach you on where these are. They are as follows: One large hand towel, hung on the shower door, for drying her torso the following day during bath time; one of the flimsier bath towels to put over the plastic rug cover the following morning before bath time or for use during the current day, if needed; one of the sturdier small bath towels to switch out with the flimsy bath towel after washing her feet during the following morning's bath time; one of the smaller hand towels placed immediately to the right of the sink faucet to sop up leakage and splash during bathing. The wash cloths will be replenished after washing is done.
- Clean out the kitty box (make sure this is done before she takes her nap).
- Empty the dishwasher of clean dishes if you haven't already and start filling it with dirty dishes.
- Wash and fill her bedside drinking glass and replace it on her night stand by her bed.
- Hand wash the skillet, dry it and replace it on the stove so it's ready for any other cooking that's necessary.
- Discard trash as necessary.
- At some point during or just after breakfast, discuss with her what might be good for dinner. If it involves defrosting anything, take it out of the freezer now and place it on the counter to defrost.
- This is also a good time, if everything's clean, to consider what she'll be wearing the following day and put it all in the bathroom on the floor behind the door. You'll notice there is a knee bandage there, as well. It's always there, always handy, in case you need it. If you think of it, this would also be a good time to put a pair of "small" paper underwear there so it's handy for morning.
- Normally her "nap time" falls anywhere from three to four hours after breakfast. If she wants to lay down before the three hour mark, unless she's sick (and she's rarely sick), I prevent her from doing this. You most likely won't have to send her into the bathroom every two hours until after her nap, if her nap takes place within the three to four hour post-breakfast period. It's likely, though, that with the excitement of having company she may decide not to take a nap. If so, from the three hour post-breakfast point on, every two hours direct her into the bathroom so she'll pee there (or have a bowel movement) and check her underwear to see if it needs changing. At this time, as well, you'll want to switch from one pair to two, just in case you forget to usher her into the bathroom every two hours or her bladder is particularly active. Once she begins to hydrate herself, liquid flushes through her system pretty thoroughly and she's bound to leak.
- While she is up, both pre- and post-nap, you will want to be in her vicinity almost constantly and keep an eye on her, in case she decides to move around the house. Don't prevent her from moving around but, when she appears to be getting up, ask her where she's going, then accompany her there and back. You probably won't need to assist her, just be there to guide her and point out objects of which she should steer clear.
- If and when she decides to take a nap, check to see if she's finished her tea. If she hasn't, direct her to finish it. If necessary, tell her she can't take a nap until her tea is finished.
- Direct her into the bathroom. Tell her (which you'll need to repeat every time you send her into the bathroom) to "pull down her pants far enough so you don't pee on them" and assure her you'll be right in.
- Turn on the oxygen concentrator in her room.
- When you join her in the bathroom, check her underwear to see if it needs changing. Chances are it won't.
- To prepare her for her nap, remove her pants and footsies. She is not to go to bed with either of these on. She is also not to lay down anywhere but her bed, in order to keep her from leaking on other pieces of furniture.
- If necessary, change out the pair of underwear she is currently wearing. Necessary or not, add a second pair of underwear (there are two sizes to accommodate her comfort: The "Small" goes on the inside, the "Large" goes on the outside).
- Help her rise from the toilet seat by standing in front of her, holding her hands and direct her to place her feet beneath her knees, lean back and throw her weight forward "rather quickly", which will pull her into a standing position. She'll reach for the towel bar and the vanity as soon as she's up. Direct her to turn to her left to face you (you've moved out of her way so she has free reign to stand and get her balance). Pull up her underwear and make sure the legs are snug up into and against her thigh creases. Under no circumstances, at any time after she's used the bathroom, is she to be allowed to pull up her underwear herself. She only gets them about half way up and she doesn't fit them snuggly into her thigh creases. When they are half mast like this she'll wet her clothes and chair cushions and her bed without any effort on her part.
- When she's in her bedroom and is sitting on the bed, hand her the oxygen cannula and help her put it on before she lays down.
- During her nap you'll be able to breathe a little. Unless she's sick, don't let her nap any longer than two hours. Chances are, with company here, she'll probably take a very short nap. She won't want to miss anything. You'll want to keep your ears cocked for sounds that she's up and has shuffled into the bathroom. When she's in the bathroom, in fact every time she's in the bathroom, you will attend to her pretty much the way you did just previous to her nap: Check her underwear; change one or both pairs, if necessary; assist her in getting up off the toilet (during her bath I usually let her lurch up herself when torso bathing time comes, simply because she prefers to do this); pull up her underwear and her pants; make sure she has her footsies on. Remind her to wash her hands "with soap" and to turn out the bathroom light and close the door when she exits "to keep the heat in" (you'll need to check this, as she often forgets).
- I prompt her to brush her teeth just before nap time and just before bed. You will need to put the toothpaste on her brush and place it next to the toothpaste container. You can leave her brush her teeth unaided but always remind her to "brush longer than 30 seconds, get in there and get all that stuff out". At best she may brush for a minute. If you think she's spending too short a time you are within your rights to tell her to do it again.
- If she's napping at a time when it is likely to be dark when she arises, make sure the hall and bathroom lights are left on.
- When she awakens (or you awaken her), you'll need to direct her to the bathroom and perform in there as before. You will also need to put her pants and footsies back on. If she awakens "by surprise", gets herself to the bathroom then appears in whatever room you're in, you'll need to direct her back to the bathroom to get her changed and dressed. Be sure she is sitting on an open toilet seat. She may also argue with you on the need for going back into the bathroom. Be firm.
- If it's been at least four hours since she finished breakfast, discuss what she might want for lunch with her. Lunch is always light. Sometimes, if it hasn't been very long since breakfast and she hasn't been up or moving much, I'll just give her V-8 juice or coffee. Usually she has some combination of the following:
- almost always a small bowl of heavily peppered cottage cheese.
- V-8 juice, especially if dinner is going to be light on vegetables.
- A small plate of pickles, green pimento stuffed olives or asparagus spears, warmed in the microwave for 10 seconds.
- A 1 oz. bag of peanuts.
- From lunch until dinner, "chores" are a matter of keeping an eye on her every time she moves, maybe playing games, watching the news, checking to see if one of her shows is on, maybe reading, maybe talking, a variety of activities. Every two hours usher her into the bathroom to check and/or change her underwear (sometimes you may only need to change out the top pair), make sure she goes to the bathroom, etc.
- If she has a bowel movement she will never remember that you will be cleaning her. Remind her that she doesn't get toilet paper. Chances are you'll need to explain, yet again, why. Remind her, as well, that you'll be cleaning her. You'll probably also need to explain this. When she's done eliminating, have her "stand up and turn your ass toward me". Using baby wipes (be generous with this), clean her from her front to her back. I usually do her colon area first, then head up toward her front genital area. Sometimes it helps to direct her to "lean forward and relax". You'll want to be as gentle and thorough as possible: Run the baby wipe, with your finger, around her clitoris from both sides. If her movement is smeary you'll probably need to do this several times. Remind her to remain relaxed. She may not, but remind her anyway. Although the Macrodantin is keeping her from having UTI's, it continues to be a good idea to keep her as clean in this area as possible. If you're wondering why I don't clean her by having her lay on her back in bed and spreading her legs:
- First of all, this is how they did it at the nursing home. Aside from being hard for her, she also acutely feels the loss of dignity.
- She never lays on her back, anymore, because it hurts her.
- She is no longer flexible enough to spread her legs easily. This also hurts her.
- If her bowel movement is extensive and/or contains turds that look as though they'll clog the toilet, once she's done and out, glove yourself up, fish the offending turds out of the toilet and throw them in the garbage. If you find yourself doing this, regardless of how little garbage there is in the plastic liner, change it out, tie up the used bag and throw it in the trash outside.
- She usually has a bowel movement every 24-48 hours. If she goes beyond this you'll want to consider the possibility after 72 hours, give or take 12, of giving her a laxative. I usually give her a tablespoon or two of liquid Phillip's Milk of Magnesia with a glass of water before the next bed time. Depending on how clogged she looks and or feels, I might use the Ducosate Sodium pills.
- Regardless of what you're making or what you're doing, about 30 minutes or so before dinner remove her watch from her arm and put it out of her reach and eyesight. This ameliorates the possibility of agitating movement before you take her blood pressure. Also, if she's wearing a blouse that requires it, pull her left sleeve up and direct her to leave it there (and hope she will). About 15 minutes before dinner is served, take her blood pressure and her blood sugar. Make sure her arm is relaxed, not resting on anything. Go through the same procedure you did when you took her blood pressure in the morning. When you take her blood sugar, use the opposite hand you used in the morning. Try to find a finger that has healed itself (mostly) of prick marks.
- After you're done taking stats, bring out her dinner pills in a napkin and whatever liquid you'll be serving her to drink with dinner. Monitor her pill taking in exactly the same way you did before breakfast.
- Serve her Aloe Vera gel.
- Serve dinner.
- After dinner, pick up the bits of dinner that she will inevitably drop on the floor between her feet.
- Time is spent pretty much the same was as it was post-nap and pre-dinner. Get her to the bathroom every two hours and follow the bathroom routine.
- If you serve dessert (either at dinner or later in the evening) give her a 10 mg glipizide with that dessert. This is the only time she gets a glipizide in the evening anymore.
- When she announces she's ready for bed and you agree, this is when you want to have her stand up. You take off her pants, have her sit back down and rub down her legs with lotion. I usually do a "pre-rub" without lotion where I run the backs of my fingers up and down the leg I'm doing. She loves this and it really relaxes her. Take your time rubbing the lotion in and use a lot. Try to keep the motion going from the bottom of her legs to the top, but spend some time on her feet, too, sliding your fingers between her toes and stimulating pressure points on the bottom of her feet. She's pretty ticklish, so use a firm touch. Don't hurry. This is a great time to enjoy her company and her pleasure.
- Direct her to the bathroom. Her pajamas should already be hanging on the edge of the bathtub. Make sure she's sitting on the open toilet with her pants and underwear down.
- If you remembered to put her watch back on after you took her blood pressure before dinner, take it off before she goes to bed for the night. Sometimes she gets to moving her arms around and the watch causes bruises where the face gets pressed against her arm. She doesn't remember, often, that we do this and why so you'll probably have to explain this to her.
- Even if her underwear isn't all that soiled, always send her to bed with a fresh compliment of underwear.
- You'll need to be the one who removes her pants and footsies.
- Unsnap her bra for her.
- She'll put her pajamas on (I always have them already buttoned for her).
- Make sure she brushes her teeth. Go through the same procedure with this that you did before she went down for her nap.
- Assure her you'll meet her in her bedroom, remind her to "leave the light on and close the bathroom door", head into her bedroom, turn on her bedside light, close the shades and turn on the oxygen concentrator.
- When she's sitting on her bed, give her the last of her pills and make sure she drinks enough water to get them down. Occasionally I'll give her the pills after she's announced she's going to bed and before she heads into the bathroom, then I use whatever liquid she has sitting on her table by her rocker.
- Once she's in the bedroom and pilled, it's all pretty much making sure she puts on the oxygen cannula, conversation, good night kissing, asking her if she is going to read for awhile (she usually does), and bidding her goodnight.
- At night, the reason I sleep with a clear view and in earshot of the hall is so I am alerted if she awakens in the middle of the night and goes to the bathroom. She doesn't do this often but if she does while you're going through Bootcamp, I'll awaken you and coach you through supervising her up-at-night bathroom visits.
- Making sure her glasses are clean when she puts them on after bathing and napping;
- Whenever she goes to the bathroom or in for a nap or bedtime, if there's a kitty on the couch she always heads over that way to pet her or him; make sure her way is clear and help her up if she decides to sit down;
- Sometimes I help her up from her rocker in the same way I help her up from the toilet; sometimes, though, she is capable of getting up herself; just keep an eye on her;
- If I notice that she seems unusually stiff or is "favoring" her right knee, I'll often ask her if she wants an adult aspirin; sometimes she does, sometimes she refuses it; sometimes I give her one anyway.
- Make sure she always has liquid by her to drink. Keep an inconspicuous eye on her drinking. You want to make sure she gets around two quarts of fluid a day. In order to do this you will need to remind her frequently to drink what she's got. Try to keep her coffee fairly fresh by either replenishing it with warm water and/or making her a whole new cup.
It's important to remember, MPS, that there is a reason, a good, experienced reason, for everything, absolutely everything, I do with her. Change is nice and sometimes stimulating but is a spice that must be used lightly and with sound judgment. Believe me, there will be plenty of "change" simply in the fact that you're being the active caregiver rather than me.
As well, if it happens that, for instance, Mom gets visits "The Dead Zone" during your bootcamp, I'll guide you through find the information on deaths and explaining all this to her.
At some point during the day, when the time "seems right", I'll coach you on guiding her through the very simple exercises we do every day to every other day, depending on Mom's mood. You'll need to hook her up to an oxygen tank for these, even though they aren't rigorous, just in case. These are things like, raising and lowering her knees, going up on tiptoe while sitting, chicken flapping her arms, kicking her legs from the knee, rolling her head, raising and lowering her shoulders, raising and lowering her arms, reaching above her head, rolling her ankles, standing up and sitting down a couple of times, swaying her hips side to side while she's up like she's doing the hula; I improvise a lot on these depending on how she's doing and what I think might help. Sometimes we do them while she's sitting in her rocker, sometimes I set up a kitchen chair in the living room with the platform. Just depends on how much energy she has on the day and at the time we do them. We don't use weights anymore, as she has a tendency to not control them and could very well damage her muscles, the way she swings them around.
Preserving Mom's dignity is important. I've found, especially during procedures such as bathing and cleaning her after a bowel movement, humor and truth work very well, hand in hand with absolutely no balking on my part, no matter what I need to do. More often than not privacy is not a luxury I can afford to give her, so I rarely apologize for my presence during those times when most people would prefer to be left alone, I do not touch her with hesitation, I kid her, and myself, about such things as checking the quality of her urine, fishing her shit out of the toilet, all the amazing "things" that appear on one's body just by virtue of being old, etc.
I won't require you to set up dishes in the dishwasher or put them away after they're clean, although I will require you to be right by my side when I do these things. I will be doing the cooking and meal planning so you won't need to do these. You will need to be right by my side when I do these things, though. You see, you aren't just going through Caregiver Bootcamp, you're going through Gail-The-Caregiver Bootcamp. I don't have any help so you can't ask anyone for help. I often have to visit with Mom while I am performing chores and functions so you'll have to do this, too. We will not be "splitting" chores because I am not able to "split" chores. Even if it's a chore I'm doing instead of you, you will have to stick right by me while I do it. If I'm in a position where I can't check on Mom at a particular moment, neither can you.
I will also probably keep up a running commentary on the history of chores, medications, etc., so you'll get a clear understanding of why I do what I do. If you have suggestions, please feel free to offer them. I'll consider them with you and explain why I think they are either good or a bad ideas.
I know that if Mom were in your home there would be changes in the way you take care of her, primarily because you'd have two live-in helpers. Mom and I aren't in your situation and I'm not trying to duplicate whatever situation you might create in which to care for her. I'm trying to give you as complete as possible an understanding of what I do with her every day and why.
