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]

Wednesday, June 18, 2008
I am writing because I need to write...
...but I can't yet write coherently about what is now going on at the facility with my mother, so I'm just going to write, just to get stuff out. My decision of yesterday crumbled and blew away when I arrived a bit before 0700 this morning at the facility and discovered that she was running a fever, 99.1, but that's a fever for her. She was lethargic. Didn't want to get up. The CNA, the one who usually insists that she arise, didn't push it. I didn't blame her. I wouldn't have pushed it either. Apparently she sweated a lot last night. Sometime in the middle of the night she was changed out of her pajamas and into one of those open-at-the-back gowns. She ate breakfast well but her enthusiasm was low. I managed to get her bathed, including in her usual position of sitting on the edge of the bed. She stood for changing, using the vanity for support. The Day Floor RN gave her acetaminophen for the fever, 650 mg, I think, which seemed to address it, but it did nothing to improve her energy level. She dozed, sitting up in her wheel chair, all morning and finally roused just before lunch. Unbeknownst to me a Urinary Analysis was called for and run yesterday. I found out about it this morning when the Day Floor RN told me as we passed each other in the hall that Mom was "negative for a UTI". Not a surprise. The woman in on maintenance nitrofurantoin. He mentioned to me that he thinks it's a pulmonary infection. But, of course, her white cell count from last week is normal.
    At 1000 Mom's temp was down to 98.2. I left to buy a thermometer (couldn't find the one we had at home) just so I could keep up on it. By the time I left her in the hands of the PT at 1400 her temp was 96.something; I forgot to record it. However, the report from the OT was that she was weak and faded quickly when standing...very little physical energy.
    As well, before I left this evening, even though I pushed liquids as much as I could and so did her therapists, even though I've been doing this daily and have been sneaking her Benefiber, as much as I can get into her, she was constipated to the point that the RN inserted a suppository up her rectum before dinner. I mean, I'm not surprised about all this. I was never able to get across the fact that at home she's on a high roughage, really low refined carb diet; she gets 6 teaspoons of Benefiber and orange juice every day; she was moving a lot more at home than she ever does at the facility; of course, this was also before the pneumonia knocked her legs out from underneath her. And, despite the fact that she is on a "carb controlled" diet at the facility, the amount of refined carbs in her diet is so high that MPS and MPNC and I joked about what "carb controlled" actually means.
    Then, this afternoon, I talked to the OT. After she delivered the news about Mom's lethargic session I asked her, trying to hold back tears because I am now so sleep deprived that I don't know whether I'm coming or going, what she thinks of Mom's prospects. She tells me, kindly but bluntly, that, considering the up and down status of Mom's performance that these recurrent "infections" are causing, her progress cannot really be called "consistent". When she isn't battling something or other she does great. But, here we are, the third week into therapy as of today, and she's had two battles with "let's not call them infections because we can't find any evidence that they are" infections without any help from Medicine, thus, her progress cannot be considered consistent. Medicare needs evidence of consistent progress. Bottom line: "Without consistent progress we need to start looking at a date..." for Mom's release. Which is weird for me because, on the one hand, I am beside myself that the facility, while promoting therapy, isn't promoting conditions that will help her progress in therapy, thus, I've had thoughts about pulling her out, but I know Mom has it in her, with even just the help of a course of oral antibiotics, to help her fight whatever keeps attacking her (it could be the mold in the bathroom that MPS smelled, which I mentioned to the staff over a week ago in writing and I'm still smelling in there) I believe Mom could rally and gain a bit more strength to build on at home. At this point, I'm not sure she has enough strength to build on.
    Besides which, how am I going to handle her at home???? Hospice is not a 24/7 service. Mom has a Home Health Care policy but, I'll tell you, considering what I've observed in the last five weeks of nursing care of all stripes at all the facilities, I'm afraid to hire anyone to help me; I'm afraid I'll be battling someone who thinks they know Mom but has no interest in what her profile has been over the last eleven years, let alone recently.
    And, in the meantime, everyone seems to blame everything on "lung cancer"...which, if this were true, would have created these patterns long before she was diagnosed with lung cancer on May 21st and it was declared that she's been developing it for probably four years.
    And then, add to that, her spectacular labs of last week. Jesus.
    And me. Ai, yi, yi, I'm concerned that I am no longer in any shape to think clearly about all this. So, again, this evening, all evening long, I've been praying, to Whatever, Whomever, Who the Fuck Knows, for some sort of intervention...
    ...and, in the meantime, I have absolutely no idea how I am going to approach all of this tomorrow...
    I need to get some sleep. I've got my alarm set for 0500. It's necessary. I'm soooo, soooo tired...and yet, I can't settle my mind down. I initially went to bed at 2115. I started this post at 2153. It is now 2230.
    Now I understand what that dream I had a few nights ago indicates...I go to bed every night doubtful that Mom is going to survive until morning. Not that she won't...but this little spin in rehab is becoming the most ridiculous medical episode we've ever experienced; and that includes her recent hospital stay, which was ridiculous beyond measure, and my dream self is taking my anxiety over it to the extreme.
    I'm ranting. I know. I think it's time to rant.
Tuesday, June 17, 2008
This morning I made a decision about my oversight of Mom... the rehab facility that was difficult but seemed, and still seems, necessary. Over the last few days Mom has become very comfortable at the facility; so much so, especially, I think, because of my ubiquitous presence, that she has somehow decided that she can say "No" to just about everything, including therapy, which she did yesterday. I didn't worry about this yesterday, as she has participated in therapy every single day she has been called to it, even the days in which she was battling the cold. Here at home, as you know if you've been a regular reader, she has what I refer to as "sleep days", when she doesn't want to do much of anything. Usually, within 24-48 hours she is refreshed and rebounds. It's also not uncommon for her to have "feisty" moods, when most of her vocabulary consists of the word "No". However, this rehab situation is too important for her to decide to take a feisty "No" holiday from it; so, today, when she attempted to excuse herself from PT yet again, I stepped in. The facility has rules that disallow personnel from overstepping a resident's "No". I, however, am not paid by the facility and don't have to take "No" for an answer. When Mom attempted to refuse PT this morning, I asked the therapist to step outside the room for a minute. Instead of asking Mom, yet again, if she "wanted" to do therapy, I simply directed her through standing up from her bed, getting into her wheelchair, and handed her over to the therapist.
    I left to make a long overdue Costco run. During the run I contemplated why Mom is getting so comfortable that she thinks it's okay to refuse the purpose of rehab and came to the conclusion that she feels much too at home because of my presence there. She has, on occasion, referred to in as though she is home. Thus, my ability to motivate her is is my energy in that area...and she is dangerously close to slipping over an edge which will render her emotionally incapable of gaining any more benefit from therapy before her physical abilities are tapped out. I decided it would be best for both of us if, over the next few days, I stay away as much as possible. After a bit more thought I determined that I should still visit in the morning to make sure she was up, changed, bathed, dressed, fed, has taken her meds and in her chair ready for the day. Then, I should visit in the evening just before dinner to make sure she was, again, up (as she usually takes a nap after her afternoon therapy), changed, alert and ready to eat dinner and receive her evening meds. Other than this, it is time for her to fall back on the therapists and the nurses and aids for her motivation, since she is no longer able to be motivated by me. It is as though she has become so comfortable that, in saying no to everything and everyone on her rehab schedule, she is actually saying no to me, as though we were at home. I decided that, being a sociable person eager to interact with others on pleasant levels, it's entirely possible that, without me there, she will be eager to follow the lead of whomever is in her room suggesting activity to her.
    I arrived back at the facility at 1130 from my Costco run. I first informed the Day Floor Nurse for today of my plan. He agreed with everything I said. Then, I let the CNA on duty know, and also informed her PT and OT. The latter two both demurred in regard to my mother actually saying "No" to me, rather than to therapy, both underlined that my presence is important to my mother, but understood what I was saying and even agreed to cooperate insofar as splitting her therapies so that she'd have something to do both in the morning and in the afternoon.
    I also, of course, told Mom of my plan and my reasons for it. She took it well. Of course, she will probably not remember and will need to be reminded on a daily basis, but that's all right. My ultimate goal is to get her going gangbusters, again, in therapy and focused, again, as well, on the ultimate goal, which is coming home.
    On my way out the Day Floor Nurse suggested a further elaboration to my plan: Perhaps this would be a good time for me to completely get away for a couple of days, since, he added, it seems that I trust the facility to take good care of my mother, which, at least as of this morning, was true. I left considering this.
    This evening when I arrived at the facility about forty-five minutes before dinner was to be served (as usual, I might add, since I typically vacate the premises during Mom's afternoon sessions and she always takes a nap afterwards), I discovered the following:    By the time I arrived this evening all this had been reversed, but I discovered some of it on my own due to the wet clothes left in her closet and was informed about the oxygen debacle.
    So, it seems, part of the reason my mother has been receiving such good care is that I've been there to make sure she gets changed on a timely basis throughout the day and check that her oxygen tanks are full and she is reconnected to the concentrator when she returns to the room. Thus, I continue, after all these weeks, to have much reason to mistrust my mother's total care to any facility, let alone the rehab facility. Needless to say, I won't be planning a getaway.
    This does not mean I am going to change my plan. I believe I need time to recuperate my ability to motivate my mother and my mother needs to be allowed to rediscover her ability to be motivated by me...and, as well, I need to make some tracks regarding home business: I just discovered, today, that, in the frenzy of keeping up with my mother and her facility care, I spaced paying the feds and state her quarterly estimated income tax. I'd like to be able to restore my Mac, as well, as that has been weighing heavily on my mind. And, the house, itself, needs some general maintenance and rearranging before Mom comes home. However, it looks like I am, once again, going to have to put the pressure on a medical facility, this time the rehab facility. I've decided my first approach is to inform the Day Floor Nurse, tomorrow, of what happened, so that word can filter down. I'll also be speaking to Mom's therapists about the importance of checking to see if she's been changed and keeping up on her oxygen flow. Finally, I've decided to post signs above her bed regarding the importance of her being changed regularly and snuggly (it's fairly common for the briefs to be hanging sloppily off her) and making sure she is hooked up to either full oxygen tanks or the concentrator. I already posted a sign, last week, about another common problem: Her oxygen tubing being caught beneath the wheels of her chair or the legs of her bed so that the flow is blocked.
    So, although I do believe that Mom needs me to be away from her, some, in order for both of us to renew the motivational part of our relationship I, once again, have, in less then 8 hours, had my trust in a facility's ability to take proper care of my mother eroded.
    There are other issues, of course, that I've dealt with day in and day out during my frequent presence there: One, yesterday morning, was a urine rash my mother developed overnight and had scratched into welts. This was disturbing because, although it is common for my mother to leak through here at home at night, we haven't seen a urine rash in years, anywhere on her body. Hydration, too, is a constant sticky subject and I am expecting, in my absence, to discover that I will need to push fluids every morning and evening because the staff isn't good at this throughout the day. I won't have to worry about her tendency to refuse breakfast, as I'll still be showing up to ensure that she won't do this. I'm not worried about lunch. She has never refused this. And, dinner, well, I'll be there for its arrival.
    People, people, people, when will we be able to agree that before the rest of us get old all of us need to turn around our ideas about what the old require from us? They require attention, care, interest and highly compensated professionals and institutions who are motivated well enough by their ability to make a good living tending to the old to actually tend well to them? They require enough staff to do this so that people don't get burned out on a regular basis. They require us to believe, as we do with infants, in their involvement in a life unique to their age rather than in their proximity to death. They require us to imagine what we would feel like not only in their prescription shoes but in their wet clothes, their aging, quirky bodies, their eccentric minds, and, most of all, their incredible ability to carry on despite the miserable odds with which the rest of us beset them? They require us to realize that we are them, they are us...and, just as we decided, in the early years of the last century, that we no longer had the right to toss abandoned children into the deadly warehouses we used to call orphanages, we have no right to consign the old and infirm to the substandard care that passes, these days, for adequate care.
    Bottom line, of course, is that the entire world needs a complete economic overhaul. In the meantime, though, each of us who has an elderly and/or infirm parent needs to open our eyes and stop kidding ourselves that the professionals know what they're doing!!!! In fact, the professionals know what they aren't doing and what they can't do because of economic constraints. That is rule number one. Rule number two is this: If you ignore rule number one, not only will one or both of your parents become its victim, so will you. If you think you can live to be old with that then, by all means, do everything necessary to remain in ignorance.
Monday, June 16, 2008
At 2331 this evening I awoke from the following dream:
    My mother and I were having dinner with MPS and her family at their house in the Phoenix Metro-plex. We were eating outside at a picnic-style table bedecked with some sort of celebratory spread. My mother, by the way, although the same age she is now, was completely mobile, etc., and wearing the dress in this picture of her.
    It began to rain as we were eating. We all arose, gathered up the feast and dashed inside to finish our dinner. As we were resetting the inside table, my mother and MPNP were at the sink doing something, probably wiping rain off plates. I heard a hard gasp, like a sudden outtake of air. I looked to the sink and my mother was slumped over. She had accidentally stabbed herself through the chest with one of those two-pronged forks used to hold down a large cut of meat as its being sliced. My nephew immediately gathered her up, explaining as he moved toward the door, "She's 90, she wasn't watching what she was doing and fell against the fork." As he headed out the door toward his truck I shouted after him, "[Name of hospital she usually goes to in Mesa]! [Name of her Mesa PC] is her doctor! Her documents are on file there! Tell them to do everything necessary! I'll be right behind you!"
    He nodded as he ducked out the door carrying my mother.
    I awoke as MPS and MPNC were locating their car and I was locating my car in a huge parking lot in order to follow MPNP.
    Although events were moving furiously in the dream, I wasn't particularly panicked when I awoke. I can't recall ever having a prophetic dream, let alone a truly prophetic thought. Considering the peculiarity of the dream, though, and my first awakening thought, that my mother might be having a heart attack, I decided it might not be a bad idea to call the facility and check on her, just in case she was having a heart attack or had already had one and was laying dead in her unmonitored (by instruments, at least) bed.
    I explained, by way of apology, to the fellow who answered the phone that I had a peculiar request as a result of an unusual dream I'd just had and was wondering if he could have Mom's floor nurse (I identified Mom by name, room and bed number, and, of course, identified myself, as well) check on her and make sure she was "breathing, asleep and alive". It took a few minutes on hold for this fellow to walk the floor, check on my mother and return to me with confirmation that she was asleep, alive and fine. I thanked him, of course, told him that normally I was not disturbed by such dreams but that since this one was so unusual and I awoke with the idea that she might be having a heart attack I just wanted to check to make sure she was all right. He had no problem with that.
    You'll notice that I've included very little fine detail about the dream. At the time I awoke out of the dream I didn't think any of the detail was significant. Following is what I can now remember, in case, as I'm mulling the entire dream over in my mind over the next few days, something of personal significance jumps out at me, since the dream obviously wasn't:    Think I'll head back for bed. I'm satisfied that I've recorded everything I can remember, all, for the moment, is well, and will remain so for the next few hours.
I went into Drill Sergeant mode on the ward, today...
...and was immediately and gently reprimanded, as, considering that Drill Sergeant mode implies my usual outdoor voice in triple volume, apparently it upset some people. I apologized and I'll try very hard not to do that again on the ward. The incident, though, initiated a conversation of understanding between myself and the Day Floor Nurse, a fellow who has been extremely helpful toward me in my dealings, there. We both came out of it understanding each other's positions and made a pact to somehow contrive a situation, before Mom leaves, in which he is able to explain to my mother how honored she is to have me accompanying her at this time in her life and how important it is for her to afford me as much respect as she does strangers, medical personnel, etc; his idea. I'm not sure that this will work, of course, but it's the first time I've had someone volunteer to do this on my behalf. I've explained these things to her but, of course, I'm her daughter, The Know It All Who [Supposedly] Knows Nothing, thus, I don't get very far with her on this score.
    I also got her CBC/BMP results back from last Thursday. She's looking great. Although her kidney functions are beginning to inch back to where they were before the test a few weeks ago in which everything was normal, they are still looking amazingly good...only her BUN was high, and then only 29. That's great, for her. Also, her hemoglobin was 11.3 with a hematocrit of 37.7. Spectacular! Her RDW continues high, which is unusual for her, but not out of the way. All other CBC indicators are falling in line appropriately.
    She's definitely reached a stage in her stay where she believes she is living at a resort, so she and I had a talk about this again, today, and about how important it is for her to return home. I've also decided that, from here on out, she and I are going to do as much of her care as possible, i.e., changing her briefs (which includes bathroom duty) off the bed, continuing with our off-PT exercises, having her stand as much as possible when moving her from place to place and generally getting her re-acclimated to what she used to be able to do at home. We're already doing her daily bathing and other grooming activities as we used to at home; we have been since she arrived at the facility. I don't know if she'll return to exactly where she was on the morning of 5/15/08, but I think she has the strength and stamina, now, for us to test how much she'll be able to operate on her own with minor-major assistance around the house.
    Late PT today, but time to get back to the facility.
This morning I decided that I'm no longer going to...
...think I'm "late" for anything or anyone, at least for the foreseeable future and possibly for the unforeseeable future. I already feel myself relaxing internally with this decision.
    Yesterday Mom and I again visited the Riparian Area down the hill from her facility. We were there well over an hour wandering, talking, "thinking" (Mom's term when she didn't want to talk). I spent some time laying on my back looking up through the crossed branches of the cottonwood grove at the sky, listening to sounds, watching clouds, evidence of breeze, movement, just like I used to do when I was a kid. Later in the day, as I was returning to Mom's room at the facility after a nap, I met Mom's OT in the hall. She not only reported a good session, she mentioned that Mom told her of our outing. She said that Mom mentioned that "the three of us" were in the Area.
    "Ah," I said, "someone from The Dead Zone must have been with us. She didn't mention them, but apparently they were there." I could see that the OT was curious about this, so I explained The Dead Zone and its significance in our lives. I told her, as well, that sometimes Mom will mention visits to me and sometimes she won't.
    The OT mentioned, as well, that, yesterday, Mom had no interest in napping after her session, so she left Mom at her window with the Sunday paper and water. When I arrived in Mom's room, she told me that she'd been visited by family (from The Dead Zone, I'm sure) that afternoon after therapy. That's good. I was concerned about leaving her alone but I guess I don't have to worry about that. She also told me about lots of things she'd observed at her window and we discussed the goings on at length: The coming and going of cars from the church; the arrival of a van full of people who tumbled out of the van and entered the cafeteria area of the facility, which Mom thinks is a separate building...the van, a bright orange Volkswagen Van, was still parked at the supply entrance of to the kitchen. I mentioned that maybe someone's family had come to visit them while they worked, since "today" was Father's Day.
    "It is?!?" Mom said. "No wonder Dad was here! I wish I'd known. I would have wished him Happy Father's Day!" So, at least one of her visitors yesterday afternoon was either her father or mine...probably hers, as she usually refers to my dad by his first name.
    I don't think I'll be taking my day off today. I think I'll hang around the facility and see what happens. I'm not quite so tired. I think I've traced the tiredness to deciding to substitute coffee for tea. I've been doing that with my afternoon coffee and it's worked well. Yesterday, though, I decided to substitute my morning coffee for tea, too, and I don't think I got quite the amount of caffeine I'm used to getting, which is quite a bit, so, I decided, for the time being, anyway, to continue it. Now is not the time for me to try to change certain habits.
    I am continuing to record programs on the DVR that I think Mom would be interested in watching. I let her know when I'm doing this, in order to keep her focused on the fact that the facility is not home...she has another home to which to return. At least once a day we have a conversation, which I initiate, about how good it will be when she returns home, how much the kitties miss her, how much I miss her and what we'll do when we get home (that part is usually initiated by her). I do this because Mom has been away from home for so long that she sometimes thinks she is at home when she's at the facility. I've even told her, on occasion, "Don't be thinking this is home, Mom! I have no interest in moving the kitties in here! None of our stuff is here, I'm not interested in sleeping in these horrible beds and our window views are much better than the window views here!" Saying this every once in awhile seems to keep her on track.
    The facility doctor came in yesterday for a short visit. I was able to thank him personally for trusting Mom's immune system. Nothing else was out of order, as far as I know, so it was a perfunctory visit, but appreciated. I hadn't expected that he'd check in on us. Which reminds me, I forgot to ask if the results from last Thursday's blood draw were up. I'm sure that at least Mom's hemoglobin is doing well, but I also want to check on her electrolytes, if they did either a BMP or a CMP.
    I'm hoping that sometime this week the PT department will hav an evaluatory meeting and we'll get an idea of what their plan for release is for Mom. She still isn't as confident standing as I'd like, but, at this point, I figure that with just a little more practice she'll be able to recover most, if not all, of her foot confidence at home. I'm sure she could use a little more practice on their stair steps, and maybe a little more strengthening. However, I also feel that when she returns home, a lot of her native confidence in her environment will return and, as well, the absence of someone instantly at her side to support her will encourage her to rely more on her abilities. If not, though, we'll figure out what we need to do to help her get around.
    I continue to wonder when some sort of obvious decline connected to her lung cancer is going to kick in. I did read the couple of chapters in How We Die about death by cancer. They weren't particularly detailed, although the detail they contained was not pretty. Maybe, without realizing it, over the last few years, we've figured out how to live with her cancer in a way that allows us and the cancer some leeway. MCS mentioned to me last week that cancer doesn't always metastasize and "they" don't know why. The way she explained it to me, cancer is often surrounded by a sort of bubble or sac. If the sac bursts, the cancer usually spreads. Sometimes, though, even as the cancer grows, the sac doesn't burst. That doesn't mean the cancer doesn't cause other problems, like, for instance, in Mom's case, choking the breath out of her. But, it doesn't affect other systems.
    We'll just take it as it comes. That approach has been successful for us in the past. I have no reason to believe it won't be in our future. If we have to change our approach, well, we've done this before, we can do it again.
    I want to get some rescreening done on the windows, too, before Mom gets home. Better check into that sometime today.
Sunday, June 15, 2008
Yesterday Mom started work on stair steps...
...and did better than I expected. Out of a desire not to disappoint myself, I was preserving an "against hope" position that she may not be able to negotiate those, again. She'll need further work, as she tired easily and was able, I think, to complete only one round, but she did that one without a hitch. The entire therapy process is proceeding more slowly than in August of 2004, but that's to be expected and hasn't bothered me...except that both Mom and me are getting tired of her not being at home. Still, I haven't yet judged that she can do without the daily therapy she's getting there. Neither has the facility.
    I'm running a little late and a little slow today. I'm thinking of taking tomorrow "off". I need an uninterrupted stretch of time in order to restore my Mac and I'm anxious to do that. Trying to keep track of the restoration process at the facility and Mom, as well, just didn't work. Taking a day off is going to be tricky because I feel an obligation to leave notes everywhere and inform as many people as possible at the facility that I won't be there (which may even mean going in early in the morning to make sure the message gets around) so that people won't be waiting on me to do things that they'll need to do. So, I don't "day off" whether it happens tomorrow or another day this week, may be modified by a few pertinent visits to the facility just to make sure that Mom's facility day is proceeding on schedule and that she knows she hasn't been abandoned.
    In the meantime, I'm discovering that, even with good sleep and good meals (my own, not the facility's), I'm also crashing...not emotionally but physically. This is a personal surprise. Here at home I take it for granted that Mom's motivation depends on mine. Over the years I've incorporated dual motivation into everything I do. Now that I have to do everything differently and all of Mom's motivation takes place outside of our home, I'm discovering how much of Mom's motivation depends not only on me but on where she is. The facility isn't good at providing native environmental motivation. I'm trying to substitute extra personal motivation into my presence at the facility, but I guess my motivation muscles aren't yet developed to where they do this easily.
    Yeow! Look at the time! Better down my yogurt, take a quick shower just to wash the sleep off and hit the road.

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