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.
Mom's performance in PT yesterday...
...increased my optimism regarding our immediate future. She walkered, slowly but surely, for probably a good 30 feet, again. She had to rest about two thirds of the way through but resting "in flight" is common for her and we've already incorporated that into our home routine. She went up and down a set of three steps once. All that will be required of her, here, is negotiating two steps at a time, either up or down, followed by significant "rest stops". She was alert and curious and it was these two qualities that kept her going. As well, her immune system seems to have adjusted to the eccentric pathogens in the facility environment, so she, finally, no longer appears to be conducted daily skirmishes with whatever is floating around there. Our home environment hasn't changed since she left so I'm assuming that her immune system will remember how to deal with it. We conducted, by ourselves, two perfect toilet sessions in the bathroom rather than on the bed, one involving a change, both involving two stand-ups. Essentially, she's doing everything that guarantees our return to a more or less normal life at home for the time being; just a little less and a little more slowly. I can handle that.
Equipment has become an interesting challenge. Some lot of the equipment I thought would be appropriate isn't. The bedside bars, for instance, extend more than halfway down her bed, which, if I used them, would make getting out of bed harder, rather than easier. Some of the equipment, the over-the-bed table and the bedside commode, will be used in different capacities than intended. We will definitely be using a different walker and I've already been able to donate the one we've been using. However, it looks as though, for the time being, we'll be using the same wheelchair. It seems that only standard versions are covered by Hospice/Medicare, all of which are too wide to push through our bathroom door, so I'm hunting through the supplies of charity organizations to locate a chair that is narrow enough for our house and low enough to make sitting and standing easy for Mom. Some of the research I've done has suggested to me that a child's wheelchair might be more appropriate for her. Grab rails in our hall will probably have to be specially designed, if we can use them at all, because of its narrowness.
As soon as Mom arrives home I'm going to begin searching out PT day programs that would cater to her interest in interacting with others. She's developed quite a reputation at the facility for socializing with and encouraging others in therapy. I'd like to see her continue this. As of this evening it occurred to me there may be an outside chance that she might be accepted as a volunteer "cheerleader" in the facility's PT department. I'll be suggesting this to someone this weekend in order to explore the possibilities. The official Adult Center Day Care program here is, unfortunately, well below her abilities and consists mostly of people who are far below her alertness and interaction levels, but I'm sure there must be others out there that would be appropriate. I'm also hoping that within a week or so, with an intermediate platform that I will either buy or devise, she'll be car mobile with chair. This seems, as of today, possible. Thus, if we can't find an appropriate PT program, I can at least get her out a lot more so she can "people watch" and "people interact". Her desire to interact with others has surprised both her and me; thus, if the PT stay accomplished nothing else, it reminded her that, as much as she likes times of social contraction, she likes times of social expansion, as well.
We will, of course, approach all of this easily and with care. She's going to continue to have slow days, sleep days, etc., probably more as time goes on. From the way things have gone since 5/18/08, though, I don't expect that the speed or angle of her trajectory will change much. I mean, for at least a year, if not more, we've been dealing with the obvious influence of her lung cancer...we just didn't know we were. The only real difference, now, is that I am determined to keep her out of all medical facilities as much as possible. I think we'll be able to accomplish this without too much difficulty.
Mom has decided that her "Welcome Home" dinner will be pizza, at the suggestion of one of the CNAs with whom we've become very familiar. I'm going to order flowers, too, to be delivered late in the afternoon.
Mr. Man just sat on my keyboard while I was making myself a cup of coffee and froze my cursor by turning off the computer touchpad, so I had to take a few mintues to figure out how to turn it on. In the meantime, I published this post before I was finished.
I had one more item about which I wanted to write. While I've been attending to my mother I've noticed two other relatives whose presence is also fairly ubiquitous. One is the child of a patient; the other is a spouse. I've briefly spoken to the former: We acknowledged one another's presence and duties in passing. The other, though, the wife of a man who is recovering from his second heart valve replacement and I have barely had a chance to "eyeball" (as my father would have said) one another. Yesterday I, literally, ran into her in the front hall as I was exiting the main bathroom, which I use because I can no longer tolerate the mold smell of the bathroom in my mother's room. I asked her if she was "the child or spouse of a patient." She quickly corrected me, "I am my husband's medical advocate."
I grinned. "I'm so glad to hear you use that word, advocate. That is what I'm doing for my mother, but I've used that term a couple of times here and it gets a stunned response."
She laughed. Her laughter had a decided edge. "I'm not surprised. I'm barely tolerated here," she said.
She went on to enumerate the problems she's been having with the facility and the hospital during her husbands recovery, which include:
- Discovering that she had to train not only the CNAs but the nurses at the facility in how to clean her husband's surgical wound and handle his temporary catheterization and eliminatory abnormalities. It seems that one of the by-products of his surgery is that one's body takes several days to readjust itself and this causes a multitude of problems with many systems, including elimination. She continues to be beside herself with having to retrain shift after shift of workers in order to ensure that her husband is adequately protected from infection and other complications while healing.
- Inadequate hydration is causing a particularly ticklish constipation problem with her husband, which is delaying his fecal elimination system's recovery.
- She encountered numerous problems with the medication schedule with which he was transferred from the hospital. She still hasn't determined whether this problem followed him from the hospital or originated at the facility.
- She had some sort of transfer problem that involved the Medicare personnel at the hospital miscalculating his readiness to be released into rehab.
- She caught a fairly high level facility staff member misrepresenting her husband as demented, which he clearly is not, and lying about having seen him.
I was surprised that, despite the differences in her husband's necessity for being where he is compared with my mother's and the effect of this difference on the potential seriousness of the impact of the problems they're having, their problems echo ours. A few days ago a very helpful reader wrote me with a piece of advice that provided a much needed calming perspective on Mom's and my situations with both the facility and the hospital: She said that at some point one has to decide, as an advocate, whether the expenditure of energy necessary to go after the medical industrial complex is worth it in particular situations. In my mother's case, since I have been able, on my own, to quickly (albeit continually) overcome our problems and set circumstances to rights, I decided that, no, it isn't worth it to continue to irritate myself over the inconsistency and error implicit in this broken system. However, speaking with this woman reminded me that, in many cases, such grappling is a matter of life or death.
MPNP is considering going into medicine. He's already begun his journey, although he hasn't decided exactly where he wants to formally pursue his medical education and training. He and I entered into an exchange, yesterday, both fascinating and troubling, involving the concerns he is facing in regard to his desire. All these concerns center around whether he even wants to attempt to practice medicine in the current U.S. medical industrial complex.
The way we handle the business of medicine in this country isn't only a problem for patients, it is also a problem for practitioners. The source of the problems, though, is the same for both: The primary focus of our current system isn't treatment and healing. This isn't to say that practitioners don't enter into the profession with the noblest of motives. It is to say, though, that those motives are undermined by our current medical delivery system.
A few weeks ago I watched a run of episodes of the series House. Since I was completely enwrapped in dealing with the medical industrial complex on my mother's behalf at the time, it was impossible for me to watch these episodes without wondering, "Where is the paper and profit pushing reality in these episodes?" Occasionally a segment of an episode would approach a concern. I remember one episode, in particular, involving the repackaging of a popular medicine in order to up the profit margin. I remember another, from which I quoted in a much earlier post, that outlined the antipathy of the medical system toward caregivers. Yet a third involved the introduction of a board member who almost railroaded much that was good about this fictional hospital's medical delivery system in favor of higher profit. I do not, however, recall any episodes in which a patient or medical advocate had to grapple with the types of concerns that regularly plague me such as: Discovering that medications are inappropriate, either by type, or dosage, or because of medication interaction, having to figure out appropriate medical regimens on their own, then having to repeatedly remind medical practitioners of these discoveries and defend them, as well; having to decide whether to have medicine intervene in a problem at all, knowing the high chances of having the problem inadequately or erroneously addressed; experiencing "medical burnout" in which the patient or advocate becomes so boggled by the constant need for oversight, which, itself, is likely to be as inadequately informed as the procedures pursued by the practitioners enlisted, that the patient or advocate willingly drops the ball, crosses his or her fingers and hopes for the best.
During MPNP's and my conversation we found ourselves speculating that many of the problems now plaguing the practice of medicine may very well be underlain by a cause no one has yet addressed in any but speculative terms: Human overpopulation; and that the problems, themselves, may be one of the primary solutions. This method of unconscious ameliorative address, though, will be uncontrollable and its likely survivors will not necessarily be those we assume: The self-protected rich. Are we really, as a species, too large for us to handle? If we are and we don't address this cogently and soon our medical dilemmas make take care of this problem for us long before (or in conjunction with) the devastating effects of human induced global warming thin us. From a removed perspective it may not matter which agent intercedes. From a personally human perspective, though, we need to figure out, soon, whether we even have the energy to intervene in our future as a species of the Earth.
Sorry about the lecture. I needed to unload. I'll carry on with personal reporting...
"Just give me a minute."
Yesterday I realized how often my mother says this at the facility and how rarely she has said it at home. That's another reason why I am looking forward to having her home: We can return to her schedule, which always requires "a minute" here and "a minute" there, rather than the schedules of others who don't have minutes to spare.
Yesterday was a wonderful day for me, and, I daresay for MPNP, as well. Work proceeded so well we built two portable ramps: One for the living room and one for the steps leading down from the door to the driveway. I am especially pleased about the latter ramp. This will allow us to spend more time outside surveying the nature of our yard. Visiting with MPNP was a highlight. What a guy he is. What an easy relationship we have.
My mother had a pretty foggy day, though I doubt she was aware of it. At one point, when I checked in on her at dinner time, she was sitting at her beloved window. I asked her how her day had gone and she told me it was "quiet" and that she'd spent the afternoon "watching TV", which is how she referred to studying the view from her window. I asked her if she enjoyed "the programs" and she said, "Oh, yes. I haven't been able to watch as much TV here as I do at home." So, she knows she's not at home and, I think, is looking forward to returning.
Her care was adequate by facility standards. It's a good thing I showed up at dinner time, though, as she was about to leak through her briefs into her clothes. She was also fairly well dehydrated, but we'll address that today. When I warned the Day Floor Nurse (a "new" one for that floor) in the morning before I left that if she wasn't monitored she would not drink what was placed in front of her, he responded, "We can always administer fluids intravenously."
"If she's well monitored," I responded, "that shouldn't be necessary." I knew, though, I was talking into the corporate wind that blows through the facility as I said this. I also knew that she probably wouldn't be monitored well enough to even notice if she needed intravenous fluids.
Everyone, to a person, who was responsible for my mother's care, yesterday, was well informed that I wouldn't be there much that day and why. Everyone was also informed that everyone else had been informed. This seemed to prevent huge problems. I hope. I guess I'll find out, today. I've noticed that since I set a date for discharge people's eyes, including the eyes of her therapists, tend to glaze over when I talk to them. I've been surprised at this reaction, so I know I'm not imagining it. It's almost as though she's already left.
The equipment from the Med Supply company will be delivered sometime today. The wheelchair has been knocked off the list, as one can't be found in this area that will fit through our bathroom door, has large back wheels and has a seat low enough to comfortably accommodate my mother; even a little lower than the seat on the chair we own. There are such chairs: I've encountered them and measured them, but they are "special order", so we need to secure one ourselves. I'll be working on this but we'll be re-embarking on our journey with our usual chair. We've managed with it before. I think we'll be okay with it until I can locate something better suited to Mom's present needs.
I still have a bit of cleaning to do, although I was able to accomplish some of it yesterday. I'm not going to worry about what I can't do. As usual, being with Mom trumps preparing for our first few Hospice visits.
I'm running a little late. Time to shower, pack up and head out.
It's Ramp Building Day...
...I'm not hyperventilating and I'm finding myself with a few moments before I need to leave a note for MPNP and hit the road.
Miscellaneous things to do today:
- Pick up screening and spline at the hardware store and see if I can't securely screen a couple of critical windows today. I've done it before...should be able to do it again.
- Call Social Services regarding a pick-up.
- Check with Hospice about the hemi-chair build out to see if I should give them measurements or call our Medical Supply Company directly; also, ask if hemi-chairs come with foot rests. If not, change our order to fit Mom and our home needs.
- See if I can't get a little cleaning done. Or not.
- Measure Mom's bed at the facility.
- Hammer down some loose nails on the platform outside the back Arcadia Door.
We're on our way home.
Everything's set up, including transport home. I misunderstood the PT situation, though. Hospice does not fund any kind of in home PT, but they do provide training for me and an aid. We'll start out with that and if it seems as though something more concentrated might be helpful, I'll hire a PT out of our pocket to pick up whatever slack I encounter. That's what the money's for. I don't think I'll consider trying to buy a van outfitted for wheelchair transport but I'm going to research local transport options that will deliver and pick-up for a nominal fee. I'd like to get her out more, now that she's finally accepting of wheelchair travel.
Otherwise, her necessary equipment will arrive at our house Monday morning, which will include a hemi-chair and a walker with only two wheels rather than four. I'm still opting out of a hospital bed. I'm taking bed measurements tomorrow. If her bed here at home is a bit higher than the one at the hospital, I'll take the wheels off the frame while MPNP is here. Better write down that I need to take my tape measure to the facility in the morning in order to measure the bed's height.
So, here's the plan for tomorrow. I'll arrive at the facility at 0630, get Mom up, make sure she's changed, bathed, dressed and in her chair, leave notes for everyone involved in her care tomorrow that I'll be gone most of the day, then get back here to meet MPNP. We'll work together until sometime around noon, when either I or both of us will go check on Mom, make sure she's being changed regularly, is attending therapy, etc., then leave. We'll continue working until around 1700, when either I or both of us will check back on her day's progress. Then, we'll continue until we're done. There's lots of wiggle room in the schedule. I've told Mom several times what's going to happen tomorrow and that I'll be absent most of the day. She's taking it like a trooper, but I know she'll probably wonder where I am. That's another reason why I want to show up at least every five hours.
We had a great day, today, even though Mom was not very strong or adept during PT, which occurred in the afternoon. Her OT in the morning, reportedly, though, was very successful, even showing some progress, such as her being able to concentrate on tasks without being distracted. I know she's capable of this but I also know that she can waiver in this ability. The PT and I went over the types of sittercizes we do and the minimal standercizes we used to do. She also showed me several more activities that Mom has enjoyed in therapy and demonstrated them with Mom.
In the morning, before either therapy, because the weather had turned from hot to cool overnight, we decided to escape the facility and visit the Riparian Reserve at the bottom of the hill. As usual, we were the only visitors. We wandered all the paths then sat for a good 45 minutes in a central clearing and talked about the area, then and listened and observed. I tried hard to control myself, but I couldn't stop myself from weeping. Since I was sitting on the ground and Mom was surveying the tree canopy looking for birds, I was surprised when she asked me what was wrong.
I confessed, "When we get home, it's going to be a lot different, taking care of you, than it has been. I hope I'm up to it, I want to think I'm up to it, but it's going to be harder, too, and I'm afraid that I won't do well at it. I'll try, you know I will, and I won't give up, but I'm telling you ahead of time, it might be rough going for awhile and each time we come to a new rough patch I might freak. I just want you to know that."
Mom sat quietly for so long that I looked up and asked, "Did you hear me?"
"I heard you," she said, continuing to survey the canopy. Finally, after a few more moments, she said, "You've done fine, so far. I have no doubt that you'll get through this just fine. Have confidence in yourself. Have confidence in me. I'll help you."
I was so surprised and relieved that I laughed and cried simultaneously. She may not remember her clarity, today, or the words she or I spoke, but she was talking from her soul, and her soul will remember everything, I realized. She will help me, I know she will, in ways she and I have yet to imagine, because our journey has never been about me taking care of her, it's always been about us traveling together.
Later in the day, just before lunch, as she was looking out the window at her beloved view, she said, "I believe this is the best view anywhere on the island."
Hmmm...I thought, I wonder if we're on Hawaii, where we lived many years ago before it was a state, or on Guam. Then I thought, oh, wait a minute, we're on the island we've been on for a long time, the one I recognize when we're in the thick of it with no help and we have to depend on each other and ourselves. Cool. I can deal with that.
Even later, while she and I were eating lunch, she said, "This has been the best day I've had in a long time."
Hallelujah. Maybe we can pack some more of those under our belts.
Back to specifics. I'm particularly curious about how our regular bath times are going to play out, since Mom is currently having trouble standing for any length of time, although earlier in her therapy she was doing well at this. I'm hoping that years of learned behavior will kick in and her body will remember how to stand for about five minutes, including a 180 degree turn at about two and a half minutes, but, if this doesn't work, well, we'll figure something out. We always do. We figured her "present" bath procedure out in a pinch and it's worked very well for almost five years. We should be able to get through this with our usual creativity.
On Monday Mom will arrive home, with me in tow, at about 1330. The nurse we've been assigned through Hospice will arrive a bit later. Some time after, probably later in the week, the doctor to whom we've been assigned will also come out for an evaluation and we'll have another visit involving an evaluation of our home for safety suggestions. But, essentially, after 1330, we'll be securely on our way through this final segment of our adventure together. Who knows how long it will last or what experiences we'll have? I'm nervous, and still a little scared, but, well, Mom's not, so I'm excited, too.
What's on our future agenda? Who knows. Stay tuned.
...just like my journaling has lately been, this time under the heading:
Stuff I Want to Remember
- The problem of administration and stockholders in regard to the ability to render adequate care at Mom's rehab facility is not a subject under wraps among the staff. Yesterday, as I was plying the halls on a variety of care errands related to making sure my mother's care reaches a minimally adequate level, I overheard two separate conversations between relatives of patients on the rehab/Medicare wing discussing with a CNA and a PT exactly why there are noticeable problems in regard to the care of their relatives. Both the CNA and the PT were explaining the understaffing/overworked problem from the perspective of the shareholders and the administration. Then, as one of the social workers, an extremely competent person, was conducting the first of what I expect (from watching Mom's roommate's discharge) will be more than a few such discussions, she handed me a form to complete on which I am to rate various aspects of my mother's care. I mentioned to her, after scanning it, that I am well aware that a lot of the problems we have are directly related to flagrantly inadequate staffing and that these problems cannot be blamed on the staff. I continued that I was going to make this point in the "comments" section, even though I doubted that it would have much of an impact. She nodded vigorously and encouraged me to do so, adding that, as I had already mentioned, this is an industry-wide problem with roots deep in the economic set-up of such institutions, that her experience in other institutions confirms this, she was glad that I recognized this and, despite what seems like the futility of such an exercise, I should definitely mention what I understand.
- After the second day of observation of my mother's PT and OT I am so confused that I have no idea at what level her native abilities may be. Despite being told, a little over a week ago, that she walkered "30 feet and back", her knees weakening only at the end of the return trip, it was obvious that my mother didn't have this in her yesterday. Suddenly, I understood what the term "inconsistent" means as applied to her. It also brought into question all the reports I've been given in the last few weeks that she was having "good sessions". This and another discovery strengthened my resolve that I will have no real idea of what strength she can recover until we get her home;
- Because Mom and I had an appointment at 1000 (moved up to 0900) for her PT, which I was going to attend in order to take advantage of the opportunity to learn supporting techniques for when she moved around at home, I was extra sensitive to anything that might inhibit Mom's performance during therapy. I noticed that she was suffering from congestion that she was having lots of trouble clearing, despite her breathing treatments, thus rendering her breathless. First I asked the nurse to listen to her lungs. The nurse heard some base lung congestion that was clearing, little by little, as my mother coughed. However, it wasn't clearing very quickly. I realized I had a choice of having Mom rehabed as she was laboring to dissipate lung congestion, which the nurse told me was "common" for Mom in the morning, or when she was laboring under what I call "lunch stupor" in the afternoon. I decided to choose "lunch stupor", since, at least, she wouldn't be breathless, and changed the PT appointment to afternoon, explaining my reasons to the PT, with which she agreed.
- Yesterday I was determined to see to it that I managed to hydrate my mother enough, while I was there, to make sure she stayed relatively well hydrated while I wasn't. It wasn't easy, since I had to apply "water torture" to my mother, which she resisted constantly, but I did it. However, even with me trying to stay alert to needed brief changes, Mom, of course, leaked through her first brief. I began to realize that one of the reasons dehydration probably takes place in these institutions is because the more hydrated an incontinent person is, the more brief changes are needed and these require time and attention that simply isn't available. Easier to keep people, under these conditions, a little underhydrated so that brief changes aren't as necessary.
- Then, yesterday while my mother was eating her lunch I was engulfed by a wave of exhaustion so irresistible that I decided to lie down on my mother's freshly changed bed and close my eyes until I heard the sound of her final placement of her utensils on her plate, signaling that she was done. I was down for maybe 15 minutes and apparently dozed, as one of the CNAs who has come to know us very well awoke me by patting me on the butt and asking if "this girl needs to be changed". As I arose from the bed I was seized by a coughing fit that lasted about three minutes, which is completely unusual for me. I just don't ever cough unless I am obviously sick. In passing I mentioned it to Mom's OT, with no ulterior suggestion or motive. She mentioned to me that this happens to "many" of the residents and explained that it is probably an allergic reaction to the cleaning agents "that have to be used" on the linens in order to make sure they are cleaned and sanitized. Suddenly I began to wonder: Among the mold in the bathroom (which the lingering smell tells me hasn't been addressed), the possible allergic reactions to the indigenous detergent, the continued evidence that my mother is fighting a virus, the constant, low level but obvious dehydration which creates a problem in itself and adds to her constipation problems, the unusually high carb "carb controlled" diet and the lack of opportunities for movement, was it even wise, in the first place, not only to put her into live-in rehab but, as well, to keep her there through her Something Fights in the hope that she would continue to rally and improve.
There are people who benefit from the therapy. These people, though, are those who are alert enough and fearless enough to not only speak up but to be aware of the inherent institutional problems under which they are laboring; who do not require external motivation from their PTs/OTs and their environment, as well as supportive relatives and friends, to perform; who have not been labeled "Fall Risk", which automatically restricts their attempts to move on their own or with "unprofessional" help; and, who have local doctors who are fully aware of the problems inherent in institutional rehabilitation and have the authority to cut through the masses of red tape in order to hasten recovery and discharge.
Final word: My mother's new roommate is a 93 year old native Arizonan who is thoroughly enjoyable and of extremely stubborn character (which I salute) and is less demented than my mother but enough so that she, too, does not understand the concept of a call button and is beyond advocating on behalf of her own needs, and, sometimes, incapable of being aware of those needs. She is in for an episode of CHF which has severely swollen her legs. Her daughter and granddaughter, who are local, have visited twice, both visits on the same day, since she was taken into the facility a little over a week ago. I watched while the staff ignored, for three full days, the fact that she remained in the same set of clothes, awake and asleep, despite the fact that she came with an adequate wardrobe. I watched while, during those same three days, she was scolded by staff to wear her "teddy socks" (full length leg socks that exert pressure on edemic legs and help move fluid around and out), which she diligently told staff she could not put on herself (which is true), then told that she needed to use the call button every morning at 0600 to have them put on, then, again, use the call button at 1800 to have them taken off. I mentioned to various members of the staff that this woman, like my mother, had no concept of the call button procedure. I've even triggered the call button for her on numerous occasions...twice I witnessed staff come in, tell her they would "have someone" come in to apply the socks, then disappear for long periods of time. She has been wearing the socks, lately, but, yesterday, she got into an argument with one of the nurses when she flatly refused to have the socks applied and was threatened with never being able to be discharged from therapy if she didn't wear the socks. As well, she is supposed to be on fluid restriction and, yet, the amount of fluid put in front of her to consume is well above the 1500 ml restriction she's on. Having no problem with her thirst sensors, she's been drinking everything put in front of her, which includes a three-times-per-day Boost drink because she is a picky eater and refuses to eat most of her meals.
What else can I say?
Oh, yeah, no more cold pill days. The cold pill didn't work, yesterday.
Time to shower, pack up and head out.
Funny thing about oral laxatives.
I don't know of any (and I'm familiar with most, if not all, of them) that don't mention in the directions to take the laxative with plenty of water, at least an 8 oz serving, to chase and activate the initial dose.
I forgot to mention that I did allow my mother to have Phillip's administered on a one time basis, yesterday, to alleviate the possibility of more entrenched constipation. Did the nurse follow it with water? No. I did, when I noticed the nurse leaving the bathroom after laxative administration and not coming back with water. And, of course, it wasn't an easy task. It took a good 5 minutes, probably plus, to coax my mother, through her protests, into drinking at least 8 ounces of water.
Regarding water and the facility in which my mother is now residing, two floors out of four usually have water carts...which are just as likely to be empty as full. Yesterday, twice, I trotted around the floors to find the "other" water cart so that I could fill my mother's water pitcher. There are, of course, sink faucets in each room but one would assume, from the presence of water carts, that drinking the faucet water is not encouraged or recommended. So, you know, hydration isn't just a staffing problem, it's also a resource problem. Shades of global warming, although this facility problem long pre-dates the current global water crisis.
Does facility staff have time to coax fluid-recalcitrant patients into drinking fluids, even so little as the recommended amount to follow an oral laxative? No. Should they have this time? Yes. Otherwise, what damned good does it do to administer oral laxatives on a prophylactic basis? Can anyone answer that question?
Although I'm crossing my fingers on this one, I'm expecting that, before she leaves, Mom will probably need to have yet another suppository administered to clean her out. I'll keep an eye on her and, if necessary, I'll allow it. May as well re-embark on our at-home adventure with a clean slate. So to speak.
Today is a cold pill day. I've been lucky, so far...I think it's been about four weeks since I had my last cold pill day. I discovered a few weeks ago that drinking caffeinated tea in the afternoon is more energy promoting than drinking coffee. A few days after I switched I discovered a "suggestion" on a display board in the facility filled with ways to revive employees from a mid-afternoon slump. One of the suggestions was to switch from coffee to tea in the afternoon. No chemical reason was given, so I looked this up and it seems that coffee has a tendency to retard the production of insulin, which keeps the body from readily processing glucose, which raises blood sugar even in non-diabetics, thus promoting tiredness (unless, of course, you're drinking coffee and not eating). A few days later I decided to try switching entirely from coffee to tea. Unfortunately, this didn't work. It seems morning coffee still performs the trick for me better than morning tea. But, afternoon tea works better than afternoon coffee.
"Going limp" physically, emotionally and intellectually, just for a minute or two periodically throughout the day, works much like "going limp" works when you're on a long and/or demanding hike. This physical technique is a guaranteed way to clear out the lactic acid in muscles that causes pain and stiffness from over-exertion. It refreshes the taxed muscle for the next step. I read about this in a backpacking book I keep in my bathroom as reading material. I accidentally discovered that it works on the spirit, as well, when I was in the hospital and found myself autonomously "going limp" one evening when they were moving my mother to a private room for pneumonia treatment. One of the CNAs, who'd been in the business for decades (she's in her 70's) noticed my posture in a chair, commented on it and attached my finger to an oxymeter that also measures pulse rate. My blood oxygen level was surprisingly high and my pulse rate was surprisingly low. "Good," the nurse said, "you're resting. You'll feel great in a few minutes." At the time she said this I wasn't convinced, as I felt as though I might fall out of the chair onto the floor, but she was right. I've been making intermittent "going limp" a policy ever since.
I've been meaning to publish these two little tricks for quite awhile, in case they might help someone else.
Oh, one other lesson I've learned: Don't obfuscate with stroke victims (or, probably, anyone else who wants feedback about conditions with which they are dealing). The guy I mentioned in an earlier post who asked me for a waste basket (because he was collecting a huge number of used tissues wiping drool from his face and storing them underneath his right thigh for later disposal) began asking me a few days ago, on a twice daily basis, whether he was "leaning" in his chair and, if so, in what direction and to what degree. The first time he asked me I couldn't see any reason not to answer honestly; although I'd heard him ask others and noticed that everyone, professional or not, was telling him that he "looked fine". He continues to check with me, simply nods when I answer him, but, as well, he's successively sitting straighter in his chair and calls me "dear" when we indulge in our exchanges in the hall.
I guess I'm rested, since I can't get back to sleep.
We're blowing the pop stand on Sunday or Monday. The facility tells me that discharges don't happen on Sunday. That's okay with me.
Yesterday I attended Mom's therapy sessions. I was suprised at how much she wasn't able to do, considering how long she's been there, but I'm not going to look back and run myself through the wringer wishing I'd gotten her out sooner. We'll just keep going forward. She can walk, some, and she can negotiate steps, haltingly. That's all we need to get started, here. From my experience with moving her around and offering my physical strength in her service, I know we'll be fine.
Novabella's recent comment that reminds me of something I've been meaning to mention. When the intake nurse for Hospice conducted her extremely thorough and informative interview on the first evening of my mother's five day stay at the intermediary home (the one where she stayed for my "respite"...I still can't help but grin about the entire respite experience), she mentioned something that put my mother's last four years into perspective for me. As she was reviewing everything I'd told her about my mother's health since 1993 (which was quite a bit), surmised that my mother's cancer probably started about four years ago or thereabouts (as the last doctor to see her at the hospital also guessed) and considered what has been happening with Mom, healthwise, for the last year, that her anemia has become harder to control and her diabetes easier to control, she summed it all up with these words: "Tumors eat iron and sugar." Bingo. Although, at the moment, her anemia is doing well, this information absolutely fits the trouble we've been having periodically just keeping her hemoglobin in "the nines" let alone anything higher.
Except for Thursday, I'll be participating in Mom's therapy every day until she's discharged. So far I've learned that I've apparently been figuring out rather well how to support her around the house without instruction. What I'm learning, now, are refining tips. I'm no longer concerned that I'll be at sea with her, even though the therapy didn't accomplish what I'd hoped nor did it play to my mother's capabilities, primarily because of her Something Fights. I know she won't have those problems at home, so I'm hopeful that Hospice will judge her worthy of three-day-per-week PT sessions and our home will provide the motivation for her to become a bit stronger simply because she'll want to utilize it in ways that are familiar to her. In the meantime, on Thursday, MPNP will be building a portable ramp that will make it easy for her to use the living room and, as well, go outside, when we have wheelchair days, which I expect will be more (and continually more) frequent as her life continues.
As far as transportation is concerned, from here on out we'll use the pros, when necessary. There won't be any reason, really, for us to go down the mountain, anymore. She hasn't been particularly interested in "getting out" for a good year or more, even though we've been doing the epo runs without much difficulty. I'm thinking, if MPNP has the time, I might have him construct a simple platform we can use to get her in our car, but professional transportation is cheap enough for the few times she may want to get out.
We'll both be relieved to get her back on home turf. I'll also be relieved that she'll be off that treacherous facility diet. I had a friendly face-off, yesterday, with one of the Floor Nurses at the facility about Mom's constipation there. She wanted to put Mom on daily Philip's or some other laxative. Many of the elderly, she says, need this "boost" because of their iron supplements and their "pain meds". I countered that Mom's been on high doses of iron for a long time without a problem, she's not on pain meds, and laxatives, daily or not, tend to make her hands and feel swell uncomfortably. "I do not want her on prophylactic daily laxatives. The problem isn't her meds, the problem is the diet and the fact that I'm the only one here that is handling her hydration correctly. You can't just put a pitcher of water in front of her and expect her to drink it. You have to coax her through it. I've been doing this, but I can't get enough liquid down her while I'm here to make up for the liquid she isn't coaxed into drinking when I'm not."
So, we'll just work with what we can on that score, she may have to have one more suppository to clean her out before she goes, and then we'll get back on schedule when she gets home.
I feel as though I cannot say this enough: Although facility nursing/aid staff tries their best and their best is very good, indeed, facility administrative decisions regarding diet, staffing and medications are completely treacherous. If you are going to thrive in rehab or, for that matter, in any kind of short or long term facility care, you pretty much already have to be healthy. Forget, people, forget everything you've heard about the necessity of Long Term Care Insurance. All that's going to do is pay for your stay...it's not going to guarantee you adequate care. It can't.
Oh. Yeah. She didn't have a UTI. No surprise. What she actually has is what I've decided to call "Facility Pathology", which includes things like bad diet, poor hydration, lack of movement (in my mother's case I am not allowed to supervise her use of the walker at the facility, in order to prevent accidents because of her poor handling of it and my lack of certification) and the presence of numerous viruses and bacteria that play havoc with challenged immune systems. The cure for that is obvious. As well, a friend of mine, yesterday, suggested that she probably was discharged from the hospital too soon. That doesn't surprise me, either, but its too late to go back on that one and, anyway, one of my missions is to keep her out of the hospital and any kind of alternative care from now until she dies. Forget "respite". Although the care home was wonderful, for a variety of reasons having to do with Mom's and my relationship, which is our strength, respite was a bust. Forget about the Oxygen in the Airplane analogy. In case anyone hasn't noticed, we're not in an airplane. It's easier on both of us if I handle burnout at home.
Long day ahead. Maybe I can get a little more rest before I hit the trail.
Not too long ago...
...at Mom's facility I was wandering the floors looking for the drinking water wagon when I passed by a woman in a wheel chair moaning repeatedly, "I don't want to shit on the floor, I don't want to shit on the floor..."
This caught my ear. As I passed the nurse in charge of the woman's floor that day I mentioned, "You know, that makes sense to me. I don't want to shit on the floor, either."
The nurse chuckled and mentioned that she not only agreed but that if you take the time to listen to a lot of the residents, their concerns aren't demented, it's just their method of expressing them that's hard for the rest of us to take.
The next day, on yet another hunt for the water wagon, I passed the same nurse on the same floor and said, "Say something outrageous today!"
She smiled and said, "Just say it quietly, or..." and then she burst into a very familiar line of a very familiar song that I sing to my mother a lot in the bathroom, "'I'll be seeing you in all the most familiar places...'"
No additional commentary, this time. Just wanted to mention it.
Oh, one other incident of which I am now reminded. There's a woman on one of the floors, not sure which one because, although she's wheelchair bound, she's very mobile and you can encounter her just about anywhere at any time. She reaches out, grabs people's arms in a vise grip and says, a naughty glint in her eye, "Come with me, baby!" When she caught me a while back, I grinned at her and said, "Okay, baby, where are we going?"
Her mouth dropped. She released my arm and stared at me. For some reason which I can't quite define I felt bad that I'd unintentionally confounded her. I patted her arm and said, "Come and get me when you know where we're going. I'll be down that hall, and I'm definitely interested."
That seemed to bring her out of her momentary stupor. She grinned, nodded, and patted my arm in response.
She hasn't come to get me, yet, but, when she does, I'm going.
Gotta go. Big day today. "They'll" be meeting around noon to discuss my mother's, among other's, institutional fate, thus, I have a memo to deliver before the meeting.
It's a numbers game.
I learned something interesting this evening at the facility. I was talking about staffing with one of the CNAs. It's a little different than I perceived. The floor my mother is on has thirty-four beds; two per room. It is almost always full. When one bed empties it is filled almost immediately. My mother's floor, the CNA explained, is "mostly Medicare", therefore it is granted three CNAs per shift (there are three shifts). My perception told me that there were two CNAs per shift, one on the "low side" (the lower half of the 17 numbers) and one on the "high side". There is, however, a third CNA I thought was a floater among all the floors. Turns out this aid isn't a floater but belongs on Mom's floor. I've noticed the "extra" throughout my days and evenings. This CNA often handles what I would call the Group Work: Taking stats, managing the meal and drink carts and performing as an extra hand when necessary.
The CNA with whom I spoke told me that the Medicare floor gets the extra aid. The other floors, of which there are three (and, I assume, house people who are on Arizona's version of Medicaid, ACCHHS, and other payer systems), are apportioned only two CNAs per floor per shift. I'm not sure about the RNs. Mom's floor is assigned two per shift, one for the high side and one for the low side. I had assumed the other floors also were granted two RNs, but now I'm not so sure.
At any rate, the ratio of CNAs and RNs per patient load is actually lower than I'd heard before Mom was admitted into the facility, but, I can tell you, it's still impossible. I'm keeping random notes on how long it's taken, here and there, for Mom's call light to be answered by a CNA. Sometimes the response is quick: 1-15 minutes. More often it takes about 15-30 minutes for a response. I've recorded more than a few occasions in which response has been from 45 minutes to over an hour. And, believe me, the CNAs are never, ever, malingering. If you can't find any in the hall it's a better than safe bet they are all tending to someone on the floor. The nurses, if they are not on the floor at their medicine carts, are either working hard to control the volumes of paperwork required on each patient or are directly working with one of the patients on their side. I hear that both nurses and CNAs take breaks but, I'll tell you, I have yet to observe one on a break and my guess is that many of them either cut their breaks short or don't take them.
So, you know, I'm not sure that there is anything in any facility that could be termed "The Cadillac of Care", but, apparently, unless you are willing and able to pay privately for care (not, I repeat, not through private Long Term Care Insurance), the best you are liable to get in a facility such my mother's is a floor on which there are 1.5 CNAs and 1 RN per 17 beds; too few to guarantee evenly adequate care and, believe me, too few to politic into special care circumstances. These busy, panting people are too overwhelmed to conduct political manuevers.
Considering that everyone I talked to as I was involved in finding a bed for my mother recommended two other facilities (sister facilities for business purposes), neither of which ever had a bed available, I'm wondering, now, how much better the circumstances are at the favored pair of facilities. I'm guessing that the difference is minimal and may have more to do with things like consistently working toilets and facility cleanliness, although that's just a guess. Even if the ratio of workers to patients were 1 CNA & 1 RN/10 patients per shift, from watching the activity on my mother's floor day after day, I can tell you, that would still be one hell of a load.
Which is why, out of desperation, over the last two days I've been changing my mother instead of waiting for her call button to be answered. I've been watching and helping (very minor help) the CNAs do it and, although I'm slow and clumsy, I managed two successful changes alone, one in bed and one standing. Tonight, though, my mother did something that has happened before and I've watched the CNAs handle but haven't yet negotiated. I screwed the process up so much that, in the end, it took me, an RN and a CNA to fix it: My mother peed while being changed, wetting the new brief, her already cleaned self, the soaker pad and the bed clothes. It wasn't that I freaked...it was that I discovered I simply didn't have the technique to handle this advanced form of the procedure on my own...and, in trying to do it, anyway, made it worse. The CNA to whom I chatted about staffing and I laughed about it afterward, including my exasperated epithet (uttered low, I assure you, but, apparently, not low enough), "Jesus Fucking Christ", that brought the nurse into Mom's room. A few minutes after the RN offered to help me she admitted that she'd never done CNA duty, which is a specialty unto itself. We were both relieved when the CNA delivering meals entered the room and immediately stepped in to help us. By this time my mother had taken offense at all my and the RNs attempts and had securely locked her legs in protest, which makes it difficult to finish applying a brief. As well, she'd peed yet a second time during changing, which involved yet another cleaning and another pristine brief but, luckily, not another set of bed clothes.
Trust me...this was not an isolated or even uncommon incident. As my CNA chat partner said, "Welcome to the wonderful world of CNAs. All you need, now, is a name tag and a paycheck."
"Forget the name tag," I said, "most of the patients already think I work the floor. [Which is true...as I walk the floor I am often asked to do this or that...and, if I can do it without challenging protocol, I do, knowing that telling someone who needs a waste basket, for which one stroke victim asked me, today, to press the call button is a risky enterprise, at best.] I want to know when I pick up my check."
My hardened attitude seems to be substituting for sleep...
...for which I am grateful. I decided, after my visit this morning, which lasted until about 1300, that I would go back this afternoon, as usual, after Mom's nap and just before dinner. First of all, it seems that someone forgot to attach the bed monitor last night and Mom almost fell out of bed adjusting herself into a comfortable position. Secondly, some minutes after I arrived this morning to my mother huffing and puffing to breathe I discovered, in a roundabout way which involved me thinking that the concentrator wasn't working, that several coils of her oxygen tubing were smashed underneath one of the bed legs; not the first time this has happened. I have no idea how long they were like that.
I not only corrected the second problem, I attached a note headed "DO NOT REMOVE" to the bed rails addressing this concern; although well over a week ago I attached a note to the concentrator about the same issue. It'll be interesting to see how long it takes for someone to remove it. Regarding the first, that's my main reason for showing up tonight: To make sure the CNA on Evening Duty is asked to attach the bed monitor to my mother after she settles into a comfortable position for sleep.
The toilet, as well, was, once again (for at least the third time), clogged, who knows for how long before Mom and I discovered it. You'd think they'd outfit these places with those toilets advertised as being able to flush everything. Once the staff was alerted it took a few hours for it to be addressed because, somehow, the information about which room had the problem was mangled. I left as someone was entering the bathroom with a plunger. I suspect I know why it was clogged. Yesterday one of the CNAs accidentally flushed a small tube of barrier cream down the toilet. I thought that had been handled. I guess not.
My mother's tasty, "carb controlled" lunch included an off-the-rack "whole wheat" roll (as usual), some sort of potato concoction (as usual) and a chocolate eclair; as well as about three ounces (maybe) of roast beef. I swear, I wish I was on a "carb controlled" diet! The nutritionist for the facility could make a mint by publishing this spectacular diet; talk about "...and I loved everything on the menus..." advertising tag lines! Breakfast was a thick waffle with sugar free syrup (as though this type of syrup is somehow going to ameliorate the white flour in the waffle) and sausage. Can't wait to see what CC delights are served for my mother's dinner. We're just lucky that my mother's diabetes remains uncritical.
My mother did mention to me, today, as we labored (truly) our way through a game of Sorry, that she feels "something isn't quite right, yet." She's right. I can tell she is still fighting "something"; the veil of haziness is obvious and it's to her credit that she's recognizing it. I'm hoping it's a UTI, as that will be addressed. If it's not, it won't be addressed and I doubt it will be investigated, as it's pretty much mutually decided that this will be my mother's last week. So, we'll address it at home, if necessary, under the auspices of Hospice.
Omigod, it's almost over. That, in itself, seems to be flooding me with the energy I'm going to need to face this next week. If I don't get everything in the house addressed before Hospice kicks in and checks us out, well, fuck it, we'll work on it after the fact.
I'm still scared about how I'm going to manage Mom, here at home, but, damn, we've been through so much in the last 11 years, I know we'll get through this.
Last thought: Did I mention, I'm beginning to wonder if Mom really has lung cancer? It's not that I'm in denial. Believe me, I've been expecting her to kick the bucket for a long time (what, exactly, are the origins of that phrase, anyway) and have often wondered why she didn't develop lung cancer earlier. I'm amazed she's still here, although grateful, too. Perhaps I shouldn't be saying this too loud, as, if she doesn't have lung cancer, terminal life wouldn't qualify her for Hospice (although she'd probably qualify, finally, for Home Health Care, which would allow her many of the same benefits as does Hospice). But, you know, this is just uncanny. You'd think, by now, according to the diagnosis, the assumptions of how long it's been with us and the prognosis, that something definitively cancer-like would be happening. But, then, I recall reading, maybe in the How We Die book, that cancer can be notoriously unpredictable. Wouldn't it be funny, though, if this was yet another one of YRMC Hospital's misdiagnoses? I've lately had imaginings of us, a year or so down the road, pretty much trampling our path in exactly the same way we have for the last more than a few years, surrounded by Hospice people who are muttering, "When is this woman going to enter the dying phase???"
Who knows...maybe the woman is right...maybe she is immortal. May the gods help us if this is true.
Back to the mines.
I truly don't know what to say...
...this time. Which means I'll waste some words on trying to say something but will probably say nothing.
First of all, as Patty mentions in her comment on the immediately previous post, the facility system is indeed broken and, despite the desperate efforts of organizations such as Eden Alternative, I'm sure, now, there is no hope for saving it...it must be knocked down and rebuilt along with our health system. My mother's and my experience is not the only indication of this, but it's an excellent indicator. You may wonder, then, why my mother is still there. I have my reasons, which I don't want to mention at the moment, but they will be mentioned, shortly, when the time is right. I expect she'll be there another week, no longer, per their schedule and mine. This is, supposedly, the "polish up" week. I'm supposed to learn, while my mother is in therapy, techniques for assisting her at home. I'm going to participate in this as much as necessary and possible, although the therapists have acknowledged that much of what they teach caregivers I already know. So, of course, I have an ulterior motive for allowing this week to happen. My ulterior motives won't hurt my mother. She's actually getting into facility life and it isn't doing her harm...it's simply delaying her real rehab, which I'm sure will take place at home.
This weekend, through some quirk of "facility wisdom", Mom has not been scheduled for any kind of therapy at all, so I am putting to the test one of the nurse's suggestions that I trust the facility to take good care of my mother. Yesterday I spent only 5 hours at the facility, making sure she was completely prepared for whatever may (not) happen there in regard to her care. I will be doing the same today. I'm curious to see if, over the afternoon and night, she has developed urine skin irritation and her second bout of constipation has continued to develop. I saw to it that she was squeaky clean, well, protected with barrier and dyphenhydramine creams and as well hydrated and benefibered as I could get her (which was pretty well hydrated) before I left. I'll be doing the same today. It will be interesting, as well, to see how much this woman, who's energy level is actually pretty high despite her taking advantage of the unusually restful (that's diplomatic) atmosphere happening at the facility, has maintained her Friday level of "physical improvement".
The doctor showed up by surprise just as I was leaving to make his rounds. I considered staying but I knew, with absolute certainty, considering that her UA CNS will not have completely developed to be read until this afternoon, that there was nothing new he would have to say; and, as well, nothing new I have to say; we've said it all. A little before 1300 I left a note with the Floor Day Nurse to pass around saying that I would not be there for the rest of the day and asking the staff to please take good care of my mother. I could have left specifics on the note, but I've written a plethora of notes and issued a plethora of verbal comments about the care she needs...I no longer have it in me to repeat, repeat, repeat. If I have specific concerns that have developed in regard to my mother's body over yesterday afternoon and last night, I'll address those today.
I am absolutely sure that she and I will both thrive when she gets home. I expect, in fact, that Hospice's three-days-per-week PT will be all she'll need, considering that her motivation will be implicit in our home. She'll want to get around the way she expects to be able to, as she did before. I'm expecting we'll overcome any weakness she's developed while at the rehab facility in short order. I can tell this in Mom's spirit. I know...bizarre, yes, that I would be talking about weakness that she's developed at the facility rather than strength. But, as some of my readers obviously know, this is the way of health institutions, right now. "Heal" no longer means "bolster".
Time to gather up and get going. My attitude has hardened, significantly, since last Wednesday or Thursday...not sure which, although I can check that. I've actually got documentation of it; so does the facility. Although I'm not used to this and am uncomfortable with it, I'm noticing that this development is significantly more helpful than my previous attitude of, essentially, sympathetically trying to pick up the slack in the facility's job. I remain understanding about the fact that the facility employees are hamstrung by administration and frustrated, as well, but I understand, now, that my sympathy does absolutely no good for anyone, including me.
Here I go, ready for anything. I'll report back...
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson