Apologia for these journals:
They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
For an explanation of what these journals are about, click the link above.
For internet sources that are about caring for relatives with moderate to severe
Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
links section to the right.
One of the checkers at one of our two main groceries...
...shares her name with my mother's maiden name. Thus, she and I always acknowledge each other, whether or not I end up at her register. When she does check me out, we chat about Mom. She's a sunny, optimistic, genial person, just like my mother...I've been meaning to ask her if she's also a Leo, as is my mother. I discovered, today, that she shares yet another trait with Mom: She loves to drool over the holiday magazine recipes. I bought a stack of them today for Mom...I'd been forgetting over the last few weeks despite Mom, bless her sugar coated heart, having reminded me numerous times that I "was going to pick up some holiday food magazines this time."
About midway through today's chat with my mother's name twin, she queried, "Now, your mother lives in one of those little homes, doesn't she?"
I chuckled. "Well, our home is definitely little, but it's ours. We live together."
"Oh," she said, "I thought your Mom was on Hospice."
"Oh, yeah, she is," I confirmed.
"Hmmm...I didn't know you could do Hospice at home."
"Yep, thank the gods, frankly. She's doing really well, we're into our 5th month of her first death sentence (the clerk looked a little shocked at my term but, other than that, didn't react) and I think we're going to celebrate starting her second six months on New Year's."
"Well, good for you. My dad was in Hospice toward the end," she said, "and, even though he was pretty bad off, I still swear, he would have been more comfortable at home and probably would have lived longer, but my mom just couldn't handle taking care of him. It's good that she lives with you."
Funny, I hear that a lot...the part about "at home...probably would have lived longer". "Actually, I like to say that we live together and that she and I are companions because, well, that's what we are."
Mom's name twin looked up at me with a twinkle in her eye and a smile on her face. "Well, that's why she's doing so well! You're Mom's a lucky one. Can I adopt you after your Mom dies?"
"How about if we adopt each other," I suggested. "That's pretty much what Mom and I did."
"You got a deal!" I believe, if the cash register hadn't been in the way, we would have shaken on it.
I left the store feeling super. Lately, I've been stressing, more than usual, which accounts for my more than frequent fussiness, about what, in this world, in this country, my life is going to be after my mother dies, considering that my society has already given me many messages indicating that it will consider the last 15 years of my life absolutely worthless, except for the fact that my society is waiting to turn those years into a mammoth stone to be pushed over the edge of my life at my mother's death, destroying my future, and I, frankly, don't feel as though I have the strength to fight this. I don't regret a moment of my years with my mother...and I wouldn't change anything, but, you know, I did it at the wrong time in the wrong society and that's not fun to confront, either. After the above conversation, on my way home from the grocery I was surprised to find myself contemplating the following: Over and over again, in these journals and in my mind, I have noted how blessed I feel my mother and I are during this period in both of our lives; why haven't I also considered that those blessing might continue after her death? Maybe they will, for both the spirit of my mother and myself.
That's the power of positive caregiver conversation, folks. Speak nurturingly to your local caregiver, today.
I've got a few minutes left before awakening my mother. Even though it's nigh on 1430, that will be her 12-hour-sleep-mark. I considered, last night, out loud, for her benefit, as a kind of preparation, awakening her at 1330, then I finished out her Dailies stats for yesterday and realized she's been up for 10 hours. She could use a full 12 hours after the last few "Bad Cancer Cycle" days and a full day yesterday. And, anyway, it's going to be a late one tonight. Last night one of the advertising channels showed the Christopher Reeve Superman I movie. My mother has been an inordinate fan of the Reeve Superman movies since each debuted in theaters, so we couldn't miss last night's movie. She was glued to the set during the entire three hours, including for the commercials. Tonight the first sequel is airing on the same channel. My mother noticed it being advertised, of course, so we are planning a Superman II night, with Papa Murphy's pizza, loaded with pepperoni and doctored at home before baking with onion slices, green olives, sun dried tomatoes and Parmesan cheese. Since the showing doesn't start until 2300 and continues until 0130 tomorrow morning, I figure, what the hell, let her sleep. She'll need it for tonight.
Although Mom didn't move much, yesterday, she seemed to feel better, was up quite a bit longer than she has been, didn't resist (much, anyway) being roused and attacked both her dinner and the movie with gusto. I'm hoping yesterday foreshadows today.
I've got one minute left before Zero Hour. Oh, I want to mention, I'm almost done correcting links. I'm on the last two sections, The Dailies sites. It's been going much faster than I expected. I hope I'm not missing any links but, if I happened to miss the one you need, let me know and I'll correct it.
I'm grinning at you, Patty...
...primarily for the comment you recently left to which your name, above, is linked, but, as of this morning, the grin increased to include this comment. You keep me on my toes, grrrrl! My initial intention, resulting from the initial grin, was to respond to you personally, but, lately, personal correspondence seems always to be trumped by something else. Then, you left the second comment and I decided...hmmm...good idea to respond to you here, since I'll also be able to cover something interesting that happened last night and ties in with your first comment.
First, though, I have to say, which is the reason for the initial grin...you are determined to get me teaching, aren't you!!!! I'm fairly laughing about this! I come, as you may have read, from a sturdy line of teachers of a variety of types, including within my own generation and the generation that immediately succeeds mine. I have, myself, taught, formally and informally. My first teaching "job" occurred when I was in the 6th grade at Wettengel Elementary on Guam. [I note, with chagrin, that Wettengel no longer hosts a sixth grade class.] In the fall of that year Typhoon Karen ripped through the island. Business on Guam came to a standstill for some weeks, including school. When all was in readiness for the school year to continue, a huge number of teachers from The States had left the island. In our school, teachers for the lower grades were recruited from the sixth grade. I was one of those students. Anyway, I'm not sure I have a natural talent for teaching...although I've taught, formally and informally, professionally and avocationally, in many capacities. Bottom line, though, is that I can't imagine anything I'd not want to do, at this time, considering all that's going on, more than training someone to care for my mother in my absence, even though this was one of my essential tasks when my mother was recently in the hospital, the intermediary care home and the rehab facility. My guess is that we could probably afford to do this. However, it seems that, if I decide to take a respite (which is no longer as clear a choice as it was a few days ago), I may have stumbled across someone to do exactly what you are suggesting. Let me explain.
Last night while my mother was napping I made a quick trip to Walmart to pick up Depends and a few other supplies. I was clearly dragging, it had been a "flying below the radar" day for Mom, thus it was a "flying above the radar" (if such a thing is possible) day for me. I decided to make a quick stop at the local Starbucks drive-through on my way home for a little instant energy. The barrista waiting on me asked me, almost before I'd brought my car to a full stop, "You're a caregiver, aren't you?"
I was astonished. "Well, yes, I am! How did you know?" Had someone, I wondered, stamped "Caregiver In Flight" across the side of my truck when I wasn't looking? Was it possible that I was more than right about something to which I referred, some time ago, as "care-dar", that, in fact, this sense is much stronger than I ever imagined?
The barrista laughed and said, "The Depends next to you."
It was my turn to laugh. Sure enough, the eight packages of Depends I'd bought formed a highly visible stack in the passenger's seat. "That's a relief," I said, "I was thinking you were psychic!"
We struck up a conversation. Turns out, she's a professional caregiver who recently moved here from California. The topics of our conversation, which was extensive, despite it's quickness, revealed that she had quite a bit of experience not only with elders in a variety of health states, including those in the "hospice" stages of lung cancer (a pretty common development for my mother's generation, which shouldn't surprise anyone, as theirs was the generation of cigarettes distributed in WWII ration packs). She's worked in care homes and for individuals; her complaints about Medicine revealed to me that she was used to dealing with the vagaries of medical professionals and their recommendations at the same level as me. As well, professional caregiving is her chosen profession and she's looking for this kind of work here either privately or within a facility. She surprised me by telling me that, here, it's not as easy to get work as a professional caregiver as one might think...she is considered "over qualified" for the facilities (which lowers my confidence in facilities even more) and hasn't yet established a private network. She asked me to pass her name and number around to people who might be looking for someone with her qualifications. I promised I would. It didn't occur to me until after I drove away that I might have some work for her...naturally...I truly don't think quickly when I'm involved in conversation. But, if I should decide to seek out respite, even for a couple of days, Patty, I'm going to talk to her about the possibility of me hiring her to spot me at whatever care facility I choose. There's much more I'll need to know about her, of course, but I have a sense that it wasn't coincidence that this person appeared out of nowhere on the very day when I was considering your proposal, Patty, and shaking my head about having to train someone while I'm caring for my mother. There will, of course, be some training involved, but not nearly the amount that would be required with a newbie...with this woman, I'm sure it would be a matter of acquainting her with my mother's eccentricities, requirements and, of course, her character; and, of course, acquainting my mother with her and seeing if they hit it off.
The reason why, over the last 48 hours, I've been reconsidering the possibility of respite is that it appears as though we're turning corners in the development of my mother's physical reaction to her cancer rather quickly, now. I'm hoping that what's going on is simply a spate of those "Bad Cancer Days", but I need to wait certain developments out, at the moment:
- Over the last week it seems that she has advanced to a stage where 4/lpm O2 when sitting is no longer adequate;
- The much more frequent occurrences of pain, particularly the incredible pain she experiences when her O2 supply is temporarily cut, are, clearly, in a state of development, even though we haven't yet had to use the morphine (more on this later);
- Her needs are changing, particularly her need for food, and I am reluctant to hand her over to anyone else while I, myself, am unclear about where we are with these;
- Her emotional dependence on my presence has increased dramatically over the last few weeks and I feel the need to more fully observe and evaluate this before I make any decision on taking respite from her.
Quickly, since I'm coming up on time for Mom's nap, regarding the "more later" mention regarding pain, Mom had an episode last night (which was primarily responsible for a Bedside Evening) that likely was not related to her lung cancer directly. After she arose to a sitting position on the bed, she experienced hard, steady pain across her upper back about four to five inches below the tops of her shoulders. Although it wasn't what I would consider "incredible" and her breathing was not affected by it, it appeared, after a good half hour, that 500 mg of acetaminophen was not going to do the trick, so I decided to go for the morphine, as she was clearly in distress from the pain. I was going to, as our Hospice RN suggested on Tuesday, go ahead and administer the morphine according to the morphine manual and inform Hospice during the next business day, which would have been today. The syringe, though, had a tricky little top to it which disallowed me putting it into the bottle to draw out the medicine so I had to call Hospice, anyway, for directions on the mechanics of morphine administration. Turns out, the syringe attachment operates as the bottle top, once it is inserted into the neck of the bottle, and the syringe closes the top when not in use. Anyway, while I was consulting with the RN on call, Mom's pain vanished. Chances are it was probably caused by either a compression fracture of a vertebra or something just worked itself into an out of joint position while she slept then popped back in later.
If I hadn't already hopped Mom up on acetaminophen I probably would have given her an ibuprofen in an attempt to head off the use of morphine. Thinking about this, later, reminded me that I'd been wondering if it might be time to consider ibuprofen instead of acetaminophen for hard, steady pain and, if so, might it also be better at reducing possible inflammation of her right lung from the life that tumor is leading inside it and allow her to breathe more easily overall. So, this "morning", when she complained of some fairly minor (at the time) lowernback pain (which has been common for her for a long time), I decided to give her 200 mg of ibuprofen at breakfast, instead of 325 mg of acetaminophen. It's probably too soon to tell, but during her 1st up time today her breathing has been somewhat easier, although she continued to be fairly tired, today, so I didn't try dialing her back to 4/lpm O2. Depending on how her evening goes, even though her initial ibuprofen has worn off and she may not need anything for pain during her second up period, if she is breathing easily and is more alert, tonight, I might try dialing her back and see how it goes.
Anyway, Patty, I'm sure I've overwritten myself, here, in response to your always appreciated comments. And, it's time to see how easy it will be to shake Mom out of her nap. Thank you, Patty, and thanks to all of you, who continue to visit and comment even though my activities online have been lately circumscribed and I don't get around much, online, right now. No matter what any of you has to say, it is always a pleasant surprise and always perks me up to get a comment!
P.S.: I've been trying to do a better job of editing when I initially publish, as I've notice I'm making quite a few mistakes, sometimes confusing ones. For those of you who subscribe to a feed on this journal, forgive my incessant going back and editing, of late...although my intentions are good I usually don't find the time to edit myself until several hours after I've initially published a post. THANK YOU FOR YOUR PATIENCE!
She asked for another hour at 1230...
...her 12-hour-sleep-mark; all she has to do is ask, usually, unless she's been asleep for 14 hours and asks for another, and she gets it.
Anyway, in the moments before I awaken her for the day I want to mention that we almost had another incredible pain episode but, this time, I caught it before the pain began. She had awakened from her nap and we'd walked her into the bathroom. At some point during the walk she dislodged her cannula. I'm usually watching her feet and hands, so I didn't notice. As soon as she was seated on the toilet I exited the bathroom, as I usually do, to secure paper underwear and a pad. When I returned, probably about a minute later, it was obvious she was in physical distress. She looked like she was in pain, although she said she wasn't, and was hunched waaaay over on the toilet. It didn't occur to me immediately to look at her nose but she heaved up, then back down, once, and then I noticed it: The cannula tubes were lodged aside and shooting O2 directly past her nose to the left. I corrected it immediately. Even though she swore, after several askings, that she wasn't in pain, it was taking her awhile to recover from the physical distress so I gave her 500 mg acetaminophen and some toast before dinner. She was fine within 15 minutes. It occurred to me, last night, that, since these episodes have begun, we've been using the same cannula. She's due for a change this week (typical Medicare regs; one cannula every two weeks unless one becomes clogged or damaged) and I ordered new ones but I notice the supply company guy didn't leave any today, so I'll need to go pick them up later this afternoon when I run errands. Anyway, every once in awhile we get a wonky cannula. Usually it's evident immediately, but it could be that this cannula is a bit less wonky that usual and is only displaying its construction problems when my mother wipes at her nose (with our without Kleenex). I've got a 1600 (with narrower tubes) that I put on her last night when this occurred to me. We didn't have any more dislodging episodes but that doesn't mean anything. However, at least, this one is staying put, which is good. If I can't get to the supply company before it closes, today (which is possible), this cannula will serve us well at least until tomorrow morning, I think.
I've begun to note over at the The Dailies, starting a few days ago, I think, when Mom doesn't eat all the food I serve her at her meals. I've been in the habit, since this started a few weeks ago, of serving her a little less. She is continuing, though, to occasionally leave food on the plate. Last night she actually left some of her dessert on her plate. Seems like a good time to begin to take a casual every-meal-food-not-eaten inventory. This usually happens at dinner, although we've had one breakfast where she didn't eat everything.
Mom's asked for hour is almost up. I'm hearing a reconnaissance cough as I write. Better mobilize. Last night was "Royals" night on PBS so we put off watching the American Girl movies. That's probably what we'll do today.
Yes. The Hospice Social Worker visited today...
...and I got a chance to talk to him, extensively, about respite possibilities and my misgivings. The discussion was extremely helpful.
First of all, he was able to give me specific information about and insight into to a number of local respite facilities that I should check out. He was especially in tune with my desire for a smaller, home-like facility, even though I hadn't gotten a chance to mention this. As well, he was careful to review facilities that are close to home.
Secondly, his advice about how to approach a respite facility visit was first rate and advice I needed to hear. He recommended that I take my long list of concerns and whittle it down to "three or so"; those most important. Ask open-ended questions about these areas, instead of initially laying down my law. For instance, regarding my concern about diet: Ask what provisions can be made for my mother's peculiar diabetic profile, which is extremely flexible but can easily get out of hand.
Thirdly, the overall tone he suggested for my visits encouraged me to think in terms of soliciting the facility's help in caring for my mother, rather than laying down the law about how she should be handled.
He reminded me, of which, frankly, I needed to be reminded, that many of the problems I had with respite care last time were piggybacking on problems that had already developed through the hospital; and, as well, many of the problems I had with the rehab facility were piggybacking on problems created by the hospital and then nurtured through the respite facility. He pointed out that my mother, at this time, is in a state of health profile stability (more or less). She does not have any pressure bruises, for instance. She will not be going into whatever facility I choose dehydrated, constipated, over-sugared, over or inappropriately medicated or recuperating from a debilitating bout of something-er-other (I hope), etc. Thus, the chance that meticulous oversight will be needed by me is much lower than previously. As well, she and I both have time to prepare for the possibility of such care. This is different, too. He added that, as far as oversight is concerned, Hospice can and will work with me on this. Hallelujah!
Interesting, too: I mentioned one of the points I wrote about in the immediately previous post, that I thought it would probably be a good idea if I visited the facility nightly in order to eat dinner with her and spend some time rubbing down her legs, maybe reading out loud to her. I also mentioned that one of my plans for respite time was to take advantage of her absence and do things that are impossible while she is here, like having the carpet cleaned (she is very sensitive, now, to the chemicals used and a five day airing out of the house should alleviate this); going through all the boxes of paperwork we transferred from the shed to our house in the spring just prior to her pneumonia in order to go through all this stuff "together" (which is not a good idea, anymore)...although he didn't discourage me, he suggested that I should not try to set caregiver duty limits on the time I take for respite. He suggested, for instance, that I feel free to indulge in an out-of-town visit, if I wished, etc. It's not that I hadn't thought of this, it's just that I continually feel under the gun to do certain things that aren't getting done, even when the doing of such things doesn't quite fit into Mom's and my lives, anymore...so, I tend to think of respite as a time to approach the possibility of putting things in order, as well as doing things I enjoy without interruption...reading a book from cover to cover in one sitting, for instance...ahhh, those were the days!
Sidebar: The truth is, time when my mother is asleep that I could be, for instance, going through boxes, is often spent considering and recording our companionship/caregiving experience here in my journals. A second truth is, if I surrendered this to other "putting one's house in order" duties, I'd, frankly, go crazy. This work that I do here online in my journals is what keeps me from blowing a gasket. It is as necessary to me as fluid intake monitoring is to my mother. It is, in fact, more than a safety valve. It allows me to add, in my own eccentric way, meaning and purpose to this journey of my mother's and mine. It allows me to "lose" myself in this experience in a manner that is both appropriate and necessary to me.
So, anyway, the upshot is that I'm feeling better about the possibility of respite. It may not come as quickly as I was planning, and I doubt that I'll be taking advantage of the opportunity as often as Hospice says I can, but, I feel better knowing that it can probably be done.
One other preparation I intend: I will be talking to Mom about the possibility of this happening, what it will mean for her, what it will mean for me, how she feels about it, any concerns that she has about being in a facility for up to five days with much less contact with me than she normally has, you know the drill. I've already opened the subject with her. From discussion to discussion, of course, I don't expect her to remember much, if anything, consciously. But, I've come to have great faith in her subconscious mind, which continues to operate reliably on her behalf. In some ways, in fact, I sometimes feel that it has become stronger than before as it has taken up the slack for her conscious mind.
So. Anyway. Enough. I've got to prepare for dinner and Mom's awakening from her nap. Tonight, I think, we'll be watching American Girl movies. Night before last we watched the one that hit the theaters earlier in the year about the depression. My mother was thrilled with it. It brought back many, many memories for her of being a child during the depression, her family taking in boarders, the attitude that anyone could spend time in Hobo Jungle so you needed to be careful about how you viewed hobos, etc. At one point my mother even said, "You know, my dad had to leave home looking for work, more than once." I wanted to ask her if she knew whether he ever spent time in the hobo culture, but then the scene in which Kit wears a dress made of chicken feed sacks appeared on the screen and she was off on another memory...thus, I rented all the movies available, even though they aren't specific to my mother being a child during those other three periods. I know she'll find them fascinating, anyway.
Another Hospice RN visit today...
...and I want to record the highlights before some episodic wind blows them out of my conscious mind (which has been happening a lot, lately) [This post started 11/18/08]. Some of the detail is sketched over at The Dailies post for today [11/18/08], which won't publish until 2359 this evening [the evening of 11/18/08]. I'll fill in the exact linking url later. Thus, I'll try not to repeat myself but, well, I'll probably fail at that endeavor. Here are the highlights:
- Hospice uses both weight measurement, which is a bit difficult to get on my mother, and upper right arm measurement to determine what my mother's weight status is (whether she's gain weight, losing it or her weight is remaining steady). Today the Hospice RN opted for the latter. It has seemed to me that Mom is losing a little weight, particularly evident in her upper arms as she sleeps, her upper right arm being the one most visible to me when she's sleeping. As well, she has been eating less...not necessarily noticeable to the untrained eye but definitely noticeable to me. On occasion, lately, she's even refused dessert, which is normally unheard of in her food parlance. Thus, I was surprised to discover that our RN measured her upper right arm at 11.25" today, a full half inch larger than his last measurement, which would have been somewhat over a month ago or, possibly earlier (I didn't think to ask). When I told him of my surprise and explained what I was expecting, he mentioned that consideration of such measurement always includes "parallax"; which is to say, assumption that positioning and tightness of the tape measure is never the same twice. So, I'm now looking forward to yet another weighing in, although I'll allow that to be scheduled by the RNs who visit.
- I haven't been back here for awhile, thus I need to set up this particular point by mentioning the following incident: Very early last Sunday morning, about 45 minutes before Mom retired, she had another incredible pain episode, exactly like the first to which the immediately previous link is attached. The cause became obvious through this episode. It was easy to see that she had once again dislodged her nasal cannula by incessantly wiping her nose (a habit she developed some years ago) to the point that both tubes were directing O2 directly past her nostrils. At the point at which I could tell she was in sudden, hard pain, her lips were also turning dark blue and she had begun to gasp. It all happened very quickly, so I'm not sure how long the cannula was dislodged. At any rate, the pain was exactly the same and, after the cannula was replaced, she responded exactly as she had before to 500 mg acetaminophen, which banished the pain within 20 minutes. The replacement of the cannula, of course, took care of the gasping. There never was any question about whether to use morphine. I figured, what worked before, acetaminophen alone, would work again.
After the episode I put all the detail together and realized that the pain was being caused by the unusual work required of her lungs and diaphragm when she isn't getting enough O2. This got me to thinking about the mechanism of pain relief catalyzed by acetaminophen versus morphine. I wondered if, for instance, the reason the acetaminophen worked is because it relieves inflammation and if the extraordinary labor of her lungs and diaphragm would have produced inflammation, as overworking just about any muscle tends to do. I also wondered if morphine relieves inflammation and, if so, which would be better to administer.
I put all the above before the Hospice RN today. First, he told me that, often, although we know of many substances that relieve various types of pain and can classify them according to which types of pain they relieve, we don't necessarily know why they work. [A little further research on morphine confirmed this; the literature often states, especially in the case of respiratory disease pain, that "we" don't know why morphine works.] What we do know about morphine is that it interfere's with the brain's CO2 receptors, thus it tells the body that it is no longer in hypercapnial distress, even though the body actually is. This relieves the breathing response and, in one short tract that I read (I lost the link to it earlier, unfortunately), it also actually decreases hypercapnia, to a certain extent (although, again, "we" are not sure why this happens). As the nurse put it [He substituted the word "dysthemic", pronouncing it "dis-thee-mik", for "hypercapnitic"; "dysthemia" refers to depression, usually "mental" in origin; however, in a sense, he was right, as it is the suppression of O2 in the body that often accounts for hypercapnia.], the body may remain short on O2 and long on CO2, but it doesn't care. Thus, this is why morphine is often used to address "air hunger", especially when O2 delivery cannot.
He went on to tell me that one of his clients addressed the same pain with ibuprofen; which put that back on my list of possible pain antidotes; perhaps the first course of action in further episodes of incredible pain caused by my mother's diminishing ability to breathe, which will surely happen in her future, unless something else takes her out before respiratory failure does the trick.
The reason I was curious about all this is because, in accordance with my mother's wishes, I would prefer to allow her to remain as alert as possible AND without pain AND without significant respiratory distress (it could be said, actually, that she is, at this time in her life, always at some level of respiratory distress; she's just very good at tolerating the lower levels, probably because this permanent condition of respiratory distress has developed so gently). If the second can be accomplished without morphine, then I think, considering the very likely fact that my mother is opiate innocent, as long as we can get away with pain relief without morphine we may as well continue on the NSaid track.
Our RN did come out on the side of possibly, at some point before morphine becomes absolutely necessary, using it during these episodes in the interim would help develop tolerance. But, I have to consider, as well, that my mother's preference is in favor of alertness...thus, at this point, my vote is to wait until tolerance is necessary before developing it.
- The subject of respite came up, and, surprisingly, I'm glad it did. I have been assuming, considering my one extremely hectic and non-restful experience with Hospice respite that, sadly, it was out of the question for me. The subject came up, yesterday, during a conversation in which the Hospice RN, after a prelude of apology in case he is misinterpreting my actions, attempted to convince me that I can relax regarding my mother's care: That, unbeknownst to me, my efforts on behalf of my mother receive "accolades" among those Hospice employees with whom we've come into contact, that I am "surrounded by professionals" who are ready and willing to help and that between the excellent care my mother receives from me and from Hospice (which is true, she receives absolutely top-notch care from Hospice) I should consider more fully using the resources available to me through Hospice, especially in regard to allowing myself some time to recuperate, here and there.
In response, I explained that, in fact, I was much more relaxed regarding caring for my mother than he understands...and this is true. While I continue to ask questions regarding technical medical stuff that is going on or may go on and while I continue to meticulously perform as much tweaking of her care as I can, in fact I am no longer obsessing over many of the big aspects, like Hospice's appropriateness for her and Hospice's care oversight of her. I have absolute confidence, now, in both and am not stressed about either; so much so that I am stepping back on my obsessive measuring (dropping taking her BP, for instance, was a major relief for me).
I continued that I am so relaxed with her at home, now, that there are some nights (not many, but a few, maybe one per week), when I do not hesitate to turn off the sound monitor when sleeping because my mother coughs a lot at night, which triggers a reception on my end and usually awakens me. I'm getting better at sleeping through normal sounds but some nights I am so tired that I know better than to subject myself to disturbed sleep and place confidence in, one, my usually high ability to respond to odd noises floating the short distance between Mom's bed and mine and, two, The Little Girl's hyper vigilance of my mother. I am at peace, on these nights, with the possibility of something untoward happening and consider that there is no such thing as me responding "too late".
I also told him that I am not a person who rehashes completed decisions. If it appears that I have made a mistake in caring for my mother I do what I can to ameliorate the results, take notes for the future, shrug and go on.
I went on to explain that if there is any area of our life about which I am "stressed" it is the area of respite. Especially lately, I've very much wanted to have a couple of days or so of respite but I cannot, in good conscience, do this in light of my experience telling me that I will be subjecting my mother to:
- bedsores (one of which she developed, in her last and only respite stay, from a pressure bruise she developed at the rehab facility);
- lagging appetite which was chalked up to "failure to thrive", "she's old, that happens," etc., until I intervened;
- dehydration, which precipitated frequent bouts of bowel back-up and frequent administration of laxatives.
After telling me that caregivers such as myself are qualified to receive five respite days per every 30 days, our RN explained that all of my concerns could be mitigated by a careful and thorough selection, investigation and preparation of the facility in which my mother would be staying. He mentioned, for instance, that, in regard to the appetite problem, I can make it clear, with the confirmation of Hospice, exactly what my mother's appetite is and that if she should lose her appetite it would be imperative that reasons outside my mother's health profile be considered. I had to admit to him that the occasion of my mother's first respite stay was, indeed, negotiated so quickly and the experience was so new to me that I did not even think about doing what he suggested. I agreed that it sounded as though such a preparation could, indeed, alleviate quite a few of my concerns and even more of the deleterious possibilities for my mother surrounding such a stay. By the time our conversation ended I was telling our RN, with renewed confidence, that I'd like to consider and prepare for a respite sometime between Thanksgiving and Christmas.
Thus, much of yesterday afternoon and evening, one track of my mind was busy compiling a strategy for approaching the determination of a suitable respite facility and delineating the concerns I would want to address with a possible facility. This is the list I've devised so far, most issues of which were among those I had to confront and negotiate while my mother was in respite and rehab facilities; a few of which have become even more critical in the intervening months; one of which is a new issues:
- The Appetite Problem: I figure I can negotiate this by making sure I am there for every evening dinner hour...I don't think this would bite into my respite experience, as long as I could confidently leave her in the care of the facility the rest of the time. I would also be available for nightly leg rub downs, which are critical to our relationship and my mother's overall care. In the meantime, though, I would want to insist that if and when my mother refuses food I be called and the actual reason for this determined and negotiated.
- Pressure Bruises/Sores: There should be no excuse for urine rashes, pressure bruises and pressure sores. Part of the problem at the previous respite facility is that, even against my advice, the staff continually put my mother in a recliner. My mother doesn't actually like recliners after the first few minutes. They bother her lower back (in which she experienced continual low level pain during her respite stay) and, if she can, she fidgets in them. As it turns out, having her in the recliner so much is likely what caused the pressure bruise to open and become a pressure sore. But, almost every time I visited my mother when she was not at the table, she was in the recliner. I would be told "But, she likes it!" Thing is, if the discomfort is low level my mother doesn't complain. As well, if she is fairly unfamiliar with those surrounding her, being a genial person underlines her reluctance to complain. Bottom line: Keep her out of recliners, even if she appears to enjoy them. Period. No excuses.
- O2: Absolutely appropriate and timely attention to my mother's 2 hook-up is critical. She needs to be at least on 4/lpm when sitting, 5/lpm when moving and 5/lpm when sleeping. Period. If she begins to gasp or her breathing becomes labored while sitting: First, the positioning of her cannula needs to be checked; second, she needs to be walked through blowing her nose quickly and cleanly; third; the level of her tank and the state of her tubing (is it restricted by being placed under furniture, the wheels of her chair, etc.) needs to be checked. Under no circumstances is her level of oxygen to be below the levels prescribed above. As well, Blood O2 level is not to be used to determine whether she is at an appropriate O2/lpm. With my mother, Blood O2 level has little relation to whether she is breathing easily. CO2 level is more reliable; and, usually, can't be quickly measured.
- Pain from Breathlessness: [This is a new aspect of her care.] If she becomes breathless because of lack of oxygen, for any reason, and begins experiencing hard pain in her back from labored breathing, under no circumstances are any narcotics to be issued without me being consulted. The first line of defense should, at this point, always be either 500 mg of acetaminophen or 200 mg of ibuprofen (the first is preferred and, so far, is the only action that has been used or required), administered with a starchy snack. A minimum of 30 minutes from the time of administration of either of the two medications is to be observed before further action is taken, as, so far, the above first action has been all that has been necessary to alleviate the pain completely.
- Fall Risk: My mother is a definite fall risk and must be managed as such. This includes the attacment of monitors, not being left alone for very long and adequate assist when mobilizing from one point of sitting to another.
- Constipation: With adequate hydration and diet, including 4 ounces of prune juice every night, laxatives should not be necessary. If they are, I should be notified before administration and the mildest must be administered first.
- Cleansing after Bowel Movements: She must be cleaned. She is incapable of doing this herself. Particular attention should be paid to the area around her clitoris, as fecal matter always migrates to this area when she is moving her bowels.
- Sleep: Although my mother sleeps a lot, she can be roused fairly easily and should be able to negotiate being awake for at least 8 hours a day, if not more, with a nap. She should be roused, dressed and encouraged to participate in up-time every day, once after night sleep and once after a nap. It is very common for her to refuse arousal after sleep times. Unless there is a health concern, she should be roused anyway.
- Medication: All medications prescribed, including supplements which are typically prescribed by me, are to be administered on schedule, no excuses. Administration is to be monitored. This works best if she is given one or two pills at a time followed by a sip of liquid. Occasionally she needs to be reminded not to chew pills or roll them around in her mouth until they soften. She doesn't have any trouble swallowing.
- Dehydration: My mother typically will drink very little if she is not monitored. Simply telling her to drink and walking away doesn't work. She needs to be reminded, frequently, to pick up the container and drink and needs to be monitored at these times. No excuses. Her lack of thirst is a years' long phenomenon. If the current wisdom of "drinking only when she's thirsty" had been applied from the beginning of her lack of thirst, she would have died at least four years ago from complications due to dehydration. The facility should be aware that one of my most important and frequent duties is getting her, in a timely manner, from one glass of liquid to the next so that she consumes at least two quarts of liquid (not including what she receives in her food) per day. Easily reachable and negotiable liquid should be left well within reach of her when she is sleeping.
- Her and Me: If she asks for me, I am to be called, no matter what time of day or night.
- Diet: Should be appropriate to her diabetic status, although her status allows a lot of leeway. An attempt should be made to include as much fiber as possible. Try to keep her blood glucose (which should be measured before breakfast and before dinner) to a low roar: Under 200, if possible. Otherwise, if her BG rises above this level in the evening, a third glipizide before bed should get her back under 200 before morning. Insulin is not to be administered without consulting me.
- Finally: In taking care of her at home, I have been able to keep her, for years, from dangerous falls most of the time, have kept her well hydrated and well fed, have successfully seen to it that she is medically managed appropriately, have only a minor problem with constipation, have negotiated her prodigious sleep habits well enough to keep her moving enough to keep her from ever developing a bedsore under my care and have honored her strong will and her high spirits, even during this latest period of her incrementally declining health due to lung cancer. I expect no less from a care facility.
Thing is, I'm tired of either bending to or making up for the industry standard. I'm more tired of doing this than I am simply taking care of my mother without respite. As I've said before, and I'll say it, here, again, in my worst, most exhausted (physically and emotionally) state, I am still capable of giving better care to my mother, moment by moment, than the industry is capable of delivering, day by day.
So, the result of all this is that by late last night I had worked myself into light despair.
I don't know. I'll continue, for awhile, anyway, to explore the possibility of another respite but, you know, I'm just tired of having my expectations dashed. The dictate is, people should learn from experience. I believe this. It works for me. My experience tells me, overwhelmingly, I have reason to worry when my mother is under care of the the professionals and I am not around to oversee that care. And, yet, the industry continues to yell at me, "Trust us, trust us, trust us." Wouldn't it be stupid of me, considering our experience, almost all of which has been documented in these journals, to, once again, initially trust an industry that has proven itself to me to be totally untrustworthy and then, once again, find myself frantically performing oversight, thus actually designing an even more stressful period for myself than I would have without respite care simply to get my mother through yet another one of my respite periods?
This is where we are in the caregiver game, in this country, at this time. Does it do either my mother or me any good to act as though we aren't? How much "trust" am I expected to place, how much "oversight" am I expected to perform, before the industry stops telling me that these professional care circumstances are my fault because they can be controlled by me without undue stress and with sufficient oversight, and the industry finally puts some that misplaced you-can-control-your-experience energy into reforming their care industry?
You know, bottom line is, I'm trying to avoid circumstances that would lead me to consider a law suit. I don't like the idea that the medical and professional care industries are amenable to change only through law suits, not to mention the fact that I simply don't want my mother or me to find ourselves in the position of considering a law suit, because that presupposes bad care and all the dangers that accompany bad care. Through Hospice I am now able to relax about my mother's medical care, after six years. Unfortunately, and, believe me, Hospice is not to blame for this, I am not able to relax about the possibility of in-facility professional care for my mother.
What about having a volunteer a few hours a day to sub for me so I could "get out"? You know what? I don't want to relax by "getting out". I want to relax by staying in, doing things I want to do here at home without being interrupted by the requirements of my mother's care. In this small, snug home, I don't see that happening, even if a volunteer were to take over care here and there for a few hours. I'd have to get out in order to get away from caregiving. And, you know, I already know, that wouldn't work for me. I relax best at home. It's a part of my character. Something tells me, ignoring my character would be one of the most stressful actions I could take.
So, you know, consider this post in the spirit in which it is written: Venting.
Shaking head. Closing eyes.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson