The Mom & Me Journals dot Net
The definitive, eccentric journal of an unlikely caregiver, continued.

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.

7 minute Audio Introduction to The Mom & Me Journals [a bit dated, at the moment]

Saturday, June 07, 2008
The good thing about bad housekeeping... that it keeps a person's immune system strong and active. That's supposed to be a joke, sort of. Neither my mother nor I are known for our housekeeping skills. Rarely do we notice dirt, or clutter. When either of us does, we mention it to the other, talk about how we should clean and "put away" and vow to do that "soon". We do scramble to present a fairly decent "cleanliness is next to godliness" image when we're "threatened" with company, but I'm sure we don't get away with our efforts. At any rate, the last four days have proven that my mother's immune system is hanging in there, despite her various chronic ailments, including the lung cancer. She apparently caught a cold either at the facility or, maybe, at the care home. Who knows. It marshaled itself into full attack late last weekend and started taking out one improvement made the week previous after another. By Thursday she seemed to be back where she started with her legs and incrementally losing all her other gains. It was horrifying for me to watch. I was certain that her pneumonia had not been completely addressed and was returning for a second run. I actually begged a few nurses, the FNP and the doctor handling her at the rehab facility to repeat the antibiotic regimen to which she had been treated at the hospital. They ran tests, took X-rays, determined that the problem wasn't pneumonia and refused. At one point, on Tuesday, when she was obviously fighting something but the "what" hadn't been determined, the doctor mentioned that, especially in the case of terminal illnesses like lung cancer, pneumonia (and other incipient infections, I assume) can be "a friend to the elderly", as they spare the person from what can be an ugly, painful, lingering, messy death. I agree with this, I told the doctor, but by Thursday I was arguing that I did not believe that this episode was the "friend" for whom we were looking and, at this point, did the risk of over treating her with antibiotics matter? Yes, the doctor responded, it did. He was very thorough in his analysis of his comparison of the tests done on Mom and the hospital and those he ordered this week. He didn't talk down to me. He insisted, though, that he felt it was important for her to overcome what was probably a virus with her own immune system. Turns out, he was right. I don't know whether he had an innate confidence in my mother's immune system. I can report that although I had clear evidence that my mother was fighting hard against the virus or whatever it was, I didn't have the confidence I should have had. Her worst day was yesterday. She couldn't help herself stand. She could barely stay awake. She ate and drank well but only because I stayed after her to remain awake until she'd satisfied her obvious appetite and consumed enough liquid to please me. I knew, by evening, she was done for. I had to leave the facility an hour earlier than I usually do because I had begun a crying jag that I couldn't control. I returned this morning, heavy of heart at a little after 0800 to a woman looking bright and ruddy, sitting up in her wheelchair at her beloved window sopping up the dregs of her breakfast with her roll. She looked good. She sounded good. She was up for anything. Maybe cleanliness isn't as close to godliness as we think, considering that some god, somewhere, sometime, made dirt. Maybe our fey housekeeping leanings have kept her immune system in good repair despite everything else.
    I should have had more confidence in the woman I purport to trust. We did her hair today, for which she'd had no energy for the last three days. That's how low her energy level was. She didn't even want someone else doing something for her; the thought of activity, anyone's, was exhausting for her. After her hair was washed, set and styled I suggested that we finally escape the institution and tour the area, her in the wheelchair, me as her driver. She was more than enthusiastic, she was impatient to get started. We wandered all over, including a visit to the church on the hill close to the facility that has so fascinated Mom since the first day of her stay at the rehab center; and a stroll through a neighboring, well kept assisted living complex. She couldn't crow enough about how good the sun felt, how beautiful the plants and flowers were, how good it was to "be out in the world", how sultry the breeze was, how blue and cloudless the sky. We returned about an hour later. She was pretty tired, but we made plans to explore a "kept" wilderness area on the grounds of another assisted living facility in the neighborhood tomorrow. Since there are scary signs forbidding entry to anyone but "residents and guests", I called the facility this afternoon for permission and received it.
    I spent yesterday in dolorous contemplation of how a tumor we've lived with for four years and that has only gently and indirectly been affecting her can suddenly, in three weeks, so challenge her that she might not make it through the night. Turns out it isn't challenging her, it's challenging me. I almost wish I still didn't know about it. And, funny, the doctor mentioned, on Tuesday, that it's probably best that we didn't know about it, since treatment at its inception would have made her just as miserable and been just as potentially deadly as it would be now, considering her health profile. Since we didn't know about it, though, we went on about our lives as though we had a right to do this, which, he said, has been best for her (and, I think, for me). It's preserved our "quality of life".
    Now, I see, I have to forget about the tumor until it begins to play obvious havoc with her body. If we're lucky, something else will take her out before that happens. Seems we've been unbelievably lucky so far, so the odds are, definitely, on our side.
    In the meantime, on our adventure today I uprooted one of those orange flowering plants I think I previously mentioned. Turns out they are colloquially called "Indian Paint Brush" and are actually weeds/wildflowers; they spread exactly the way they look: Like wildfire. I planted our specimen immediately after pulling into our driveway this afternoon to take my "exchange supplies at home" break while Mom takes a nap. It's sturdy, it looks good, and with a little more luck it will be Mom's "Welcome Home Weed" in a couple of weeks.
    Trust Mom's body and spirit. Trust in our continuing luck. Trust in life, and live it while we can, no matter what it asks of us. That's how we've been living the last few reason why we shouldn't continue until Mom just can't anymore. I remember telling Mom, "It happens to all of us," during that discussion in which I was referring to death and she intimated to me her immortality and mine as well. Now I'm wondering exactly what "it" is. I guess Mom and I are about to find out. Well, we've always been curious sorts, not prone to labeling. All I have to do is forget about the Little L label, "lung cancer", and, if I must pay attention to labels, keep my eyes on the Big L label, "life".
    That should do the trick.
Monday, June 02, 2008
Cataloguing the Highlights
    It seems imperative that I begin to get everything down regarding this recent episode in my mother's health into which I involved the hospital here in Prescott, hospice and rehab. Right here and now I'm just going to catalog highlights that I want to be sure to remember, then fill in the detail later.    To be continued.
Sunday, June 01, 2008
Mom had a major watershed last night...
...on her own, which is exactly what she needed. Aside from the fact that dropping all that water caused her to feel better, look better and sound better and, by the way, catalyzed a major bowel movement, I'm pleased to know her body is still knows what to do to protect her soul during its time here on earth and is still willing to do these things. Today the leg strength she's gained through the last few days of therapy returned. I saw her in the bathroom standing straight and tall for the aid who was helping her onto and off of the toilet and cleaning her. She still isn't standing that straight and tall for me, but we'll get there, I think.
    I've been planning for us to get out of the facility and tour "the grounds", which aren't much, really, but also tour a church across the street from Mom's window about which she's exhibiting an unusual interest. We've already gotten permission but haven't made it out, yet, what with OT and PT schedules, hair days (every other day, just to keep her spirits up), meals, meds, naps, etc. We were shooting for today but it looks like we might not make it out until tomorrow.
    I'm dragging, so I'm heading out to get a cup of syringe-strength coffee before heading back to the facility to meet Mom as she comes out of OT.
    Needless to say, probably: I haven't had a lick of time to do anything to the house to make it any more available to Mom than it was when she left here two weeks ago last Wednesday. If anything, it's become even more scattered and dirty. Not sure when I'll get the time to do anything. But, considering how she's improving, I'm thinking it isn't yet time to move her into the living room, so, at the very least, just before she comes home, I'll return the futon couch to its couch position and we'll see how we do from there. I think we both want life to return to what we used to consider normal, as much as possible, and I think quite a bit of that will be possible. Then, as the days go by and her health does what it's going to do, we'll make changes, incrementally, from there.
    Another "funny" thing: As the consult with the facility doctor was coming to a close he asked me, "She's going to die at home, right?"
    "Yes," I said, "absolutely." Unless we both get caught in an avalanche during our winter ski vacation in Aspen this year.
    He gave me a thumbs up. Interesting that doctors recognize the value of dying at home. I'd never thought about it but, of course, they would. They know, just as all other patient-care staff does, better than anyone else, the indignities of death in a hospital bed or on a gurney.
In response to the very much appreciated comment...
...left by Patty McNally Doherty on the immediately previous post:

    Ah, Patty, you said much that I intended to say but was too caught up in my anxiety to remember. You are right about the staff. Despite the fact that they are overworked and underpaid (including the RNs and FNPs), everyone tries very hard, everyone keeps it together. Well, except for one, yesterday afternoon, a new one to the facility who started out with excellent intentions and then became more and more flabbergasted and frantic as the evening continued. I forgave her without question and tried extra hard to work with her. I felt sorry for her.
    I have, indeed, on a daily basis, been considering pulling my mother out of the facility early and just going with whatever hospice provides in the way of therapy and in-home help and filling in the gaps on my own. I continue to leave my mother there, day by day, though, because, overall, she is improving (although I haven't checked on her yet, today) and the therapy they are providing includes stuff that I know I wouldn't be able to be accomplished at home because of lack of space and some very sophisticated, very large pieces of equipment that are doing my mother noticeable good. Also, she performs very well for the therapists and not so well for me, which, I know, is typical of the relationship between caregivers and care recipients, no matter what their alter relationships are. It is this edge that the therapists have over me that I realize still trumps her being at home. I rather believe, though, that, one way or another, one more week will do it, whether the facility thinks she's "ready" or not. I just want to get her reliable leg strength to the place where we can take it from where she is, come hell or high water. I've already seen that this is happening.
    Of course, all of that will be trumped if she is, physically, at or below where she was yesterday. Then, I am going to start making noises about having her pneumonia status followed up, maybe even transferring her back to the hospital for another chest X-ray, certainly putting her on another course of antibiotics. I am packing both furosemide and metaclopramide in my purse, today, in case I deem that she needs either. I will, of course, consult with the nurses, but it takes awhile for an order or discontinuation for this drug or that to be processed and delivered at the rehab facility. If necessary, I will work some sort of a deal out with the nurse on duty, today, who is, as have been all the nurses, incredibly accommodating in regard to my medical knowledge and opinions regarding my mother, and sign off on removing responsibility from the facility for whatever I give or do to my mother. At this point I figure that the facility isn't actually doing any better a job than I could do.
    The reason I am signing my mother up for hospice so early in her lung cancer episode is that I am determined to make sure she dies at home. I'm hoping that this rehab facility is the last facility she will be in and that she will make it out alive in a week or so. I have already been VERY impressed with the hospice organization I picked. They've already performed miracles for my mother and me. I have also been assured that I can pick and choose services and, if we find it hard to work with some member of the staff or other we are not stuck with that staff member.
    I am absolutely four-square aware and in support of everything you said in your comment about facilities, both medical (hospitals) and rehabs...have been for some years, in fact, since long before my mother had her first rehab facility experience. I knew, going in, this time, what was likely to happen and I've pretty much been right. Although the exhaustion of keeping up with my mother's stay is hard, it isn't as hard (although it's close to it) as it was when I was traveling four hours a day to see her and keep up with treatment.
    It's funny, because on the day of my mother's first planned discharge into rehab, which was also the day her pneumonia was discovered, I was talking with one dynamic and very well meaning case worker who'd been assigned to us through the hospital. I started to make a comment that began, "Look, I know our medical system in this country is broken..." and I heard her clear her throat. I knew she intended to step in and argue the point, but I was quicker and continued, "...because of specific things that have happened to my mother." From that point on I enumerated times, dates and incidents, in some cases mentioning the names of specific personnel, starting with the hospital stay in which my mother was then ensconced and going back through all her facility stays and doctor visits of every type. I rattled on for about five minutes. At the end, the case worker said nothing. This is the value of keeping a journal. Not only does it get the word out there but it keeps my detail ducks all in a row so that when I counter the attempts of people trained in PR to put a happy, or at least a philosophical face on what goes on in this country in the name of medically oriented care, I am far from vague in the examples I use. I can even refer those questioning our experiences to names, numbers, addresses, lab reports, etc. It is impossible for anyone to argue against the facts surrounding my mother's medically oriented experiences.
    So, I continue. I slept through the alarm this morning and am getting a bit of a late start. I've shoveled down some yogurt, some coffee, wiped the sleep out of my eyes (the shower will have to come later), apologized, yet again, to the kitties and I'm on my way.
    If I fail to report daily it's because I'm so caught up in the facility dance that I can't find a graceful way to exit. And, yes, I will describe the scene outside my mother's's rather like sitting on a porch, gossiping about the neighbors who pass and speculating about the structures and greenery that decorate the view. It's one of the few things that keeps my mother's spirits up.
"Clowns to the left of me, jokers to the right... I am, stuck in the middle with you." I don't know who to credit for these lyrics. Some sources say Bob Dylan; some say J. Egan and Gerry Rafferty. To whomever, I'm grateful. They exactly express how I'm beginning to feel at the rehab facility.
    Brief summary before I try grabbing a few more hours' sleep:
    Mom has been doing well at the facility in rehab, despite the fact that it is woefully understaffed and I've essentially been pinch hitting as an unpaid aid. She was downgraded from "two person max assist" to "one person assist" on Friday. This was not undeserved. She was, indeed, participating well with transfers from bed to wheelchair, doing very well in her two therapies (physical and occupational; the physical focusing on lower body strengthening, the occupational focusing on facility, especially when performing normal, everyday tasks). Then, yesterday, she appeared to be lagging a bit. She was unusually lethargic in the morning, although I got her up, fed, bathed, in her wheel chair and fundamentally interested in what was going on around her before 1030, which is when she was taken in for a therapy session. I headed out to get some decent food for my lunch. Her therapy sessions generally last about an hour and a half. When I returned at 1130 she was already back in her room watching TV with her roommate. I tried to find out how her therapy went but all therapists were busy and the one who picked her up wasn't there. Later in the day I was able to waylay a therapist but nothing was noted about her session in the therapy books.
    Mom ate lunch and settled in for a long nap. She continued to seem a bit pale and lethargic.
    During her nap, the facility doctor finally visited us. I mentioned my concerns about the continuing of the metaclopramide, which I've been able to countermand dose by dose and was finally discontinued. I also addressed her hypoglycemia as it appeared on her blood draw, taken early Thursday morning (which also indicated that her renal functions were back to normal, a nice surprise). The low potassium that showed up on the draw had already been addressed. I was not, however, worried about the lethargy. Both the nurse and I were chalking it up as her reaction to her intense therapy, in which she has been enthusiastically participating. We were both thinking that yesterday was "just" a day when her body was letting down from all the work. I'm still hoping this is true.
    When she awoke and needed to go to the bathroom it became apparent that she was needing, again, to be classified "two person max assist". Her legs just weren't working as well for her as they had even that morning. This worried me. As well, I noticed some slight swelling in her legs and feet, despite the fact that sleeping kept them elevated. Once she was changed, although she expressed a preference for sitting in her wheelchair and eating in front of the window, which has an interesting view and which we've been enjoying most of every day she's been there, it was clear that it would probably be best if she ate in her bed and she didn't argue. As well, her hearing seemed to have degraded a bit. I took note of this because once her pneumonia was well addressed in the hospital her hearing cleared up noticeably.
    After dinner, during which she ate well, she was completely uninterested in anything and wanted to go to bed. She'd also been feeling warm to the touch (although this happens a lot even when she doesn't have a fever). My concern notched up another level. By the time I prepared her for bed, had her changed and she was settled for sleep I was really worried. I mentioned all my concerns to the evening nurse, punctuating them with "something just doesn't seem right", found myself bursting into tears a couple of times before I left and secured a promise from her that "if anything happened or she called out for me during the night" that I was to be called in immediately. I also speculated that maybe Mom really is just letting down from all her hard work and, as well, my continual exhaustion is getting the best of me.
    So far, so good, tonight, except that I just awoke, about a half hour ago, with that song line quoted above running through my head and the idea that perhaps her pneumonia wasn't completely addressed, that she needs to be back on the antibiotics, the prescription for which was ended the first day of her facility stay, and could probably use a small (15 mg at most) dose of furosemide to draw off the unaccustomed but still mild edema, which is probably not isolated to her legs. I'll address this tomorrow with the nurse if her feet are still swollen in the morning. This swelling was apparent the first day of her rehab stay, too. The nursing supervisor said it "wasn't bad" but I countered her by telling her that Mom just doesn't swell much, so any swelling is worthy of note. I don't think the Nursing Supervisor paid attention to me, though.
    She is scheduled, at least, for occupational therapy tomorrow/today. I will, of course, be back at the facility early, hopefully as early as 0800 or 0830. And, as usual, remaining, to keep her spirits up and keep an eye on her, most of the day with very short breaks to check back on the house and the kitties, who are, now, pretty much into the routine of being left alone but full of complaints about the situation, especially Mom's absense, every time I return to the house.
    I'm keeping my fingers crossed about today, hoping that yesterday was just a sort of recovery from some very hard work Mom's been putting it and to which she is unaccustomed. My concerns, though, remain, especially since, at this facility, which is not a hospital even though it is staffed with nurses and a floor doctor, thus, changes in medical routine take a longer to be implemented than is true in a hospital. For the first time in the entire episode in her life, for the first time, in fact, in my entire involvement in her life, I find myself thinking things like, I wonder if the mishandling she experienced at the hospital, which was fairly flagrant and revolved around an initial incorrect diagnosis of "failure to thrive" which treacherously delayed any medical investigation of the leg weakness and other attendant problems for three days until, finally, I pitched a fit and the pneumonia was discovered, is continuing and I might have to pull in a lawyer before this is all over. I have delivered lectures to just about everyone about the inappropriateness and treachery of the "failure to thrive" diagnosis, which, I note, in her chart, continues to follow her like a bad penny. And, yet, I cannot help but think, especially in light of yesterday, that those who are directly responsible for her medical care are continuing to ignore everything else except this.
    I do not believe it was wrong to put her in rehab. She clearly needed it and has clearly been responding well, until yesterday. Maybe yesterday is just a blip. But, if it appears, this morning, that it isn't, then, whoa, well, I guess ratchet myself back up to super-management mode. And, it is hard to express how tired I am: "Too tired to yawn, too tired to sleep..." ahh, that's right, I need to look up the source for that. I promised my mother the other day I'd do that. Hold on...ahhh, here it is.
    There was another cool incident involving a quote two days ago. The "Care Plan Meeting", which was somewhat disappointing but, then, I may well have had expectations that were completely my invention. In order to prepare for it I filled out a questionnaire about Mom's care, with Mom's help. One of the questions involved soliciting her opinion of her quality of life at home. When I asked her the question she immediately responded: "The quality of life is not strained. It droppeth as the gentle rain from heaven upon the place beneath." She also correctly (except for the word "life", which is actually "mercy") identified it as having been written by Shakespeare, although neither she nor I correctly remembered the play, which I researched that day.
    So, you know, this woman, this mother of mine, she's hanging in there and I am determined not to suffer any of the "clowns" and "jokers" who seem lately and often to be crossing our path.
    Her pressure sore, in answer to one of my faithful, well appreciated readers, is healing nicely and, yes, you are right, I've been all over the staff like a bad suit to keep an eye on it and treat it appropriately, as well as believing nothing that anyone at the facility is trying to tell me about how inconsequential these things are.
    And, for one of my sisters who may be trying to get ahold of me, I am almost never here, if you've been trying to call except before 0800 and after 2200...sometimes I leave earlier, sometimes I get home later.
    Think I'll try to get a few more hours sleep.
    God, how I hate the medical industry. So much unnecessary energy and effort is required just to negotiate a lot of shit in order to get a little appropriate attention. I even told those professionals present at the Care Plan Meeting that Mom and I have left medicine in our dust before and we are very likely to do it again before Mom finally decides to cut out and turn toward new adventures. My hope is that I can keep the medical industry from hastening her decision to cut and run before she's really ready. I'm not interested in mopping up with a lawyer. I'd much rather avoid the need for a mop up. I just hope that my exhaustion does not somehow play a role in what may be my inability to do this.
    It's so weird. I want to shake someone, anyone, until their brains rattle back into place.

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