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.
I might mess this one up, some, so bear with me.
This afternoon as I returned to the facility after stopping at home to deliver laundry, turn on the cooling machines and assure the kitties that I'd be back this evening and, yes, The Mom is still improving and will be coming back to us at home, I was stopped in the hall just outside my mother's room by one of the two therapists who handles Mom's daily PT/OT. Aside from assuring me that, even though my mother was tired today in therapy, the outing she and I took this morning was good for her and aside from encouraging me to do more of this with my mother, she told me something that confirms some of my long held suspicions.
She decided to try my mother at a skill practice that, typically, people with "light dementia" (interesting, isn't it, the professional phrase's relationship to my own label for my mother's dementia, "Dementia-Lite") don't perform well. Although I didn't understand all of the description, it involves, first, setting up long (relative term) round pegs then having the client put washers over the line of pegs. Another part of it, even less well understood by me, apparently involves matching the set of standing long round pegs with a set of short round pegs. The tasks are based on a Chinese game with which I am unfamiliar and, the OT continued, can easily confuse even the lightly demented. Seems my mother not only had no trouble at it, I can imagine, from what the OT described, that my mother probably polished off the tasks and wondered, "Okay, what's the point of this?" although I doubt that she said this aloud.
I was smiling broadly as the OT told me of my mother's facility with the tasks. I also nodded, knowing the dimensions of my mother's dementia (must look up the relationship between those two words) and not being surprised, really, at my mother's success.
This wasn't the end of what the OT had to say, though. She went on to tell me of a scenario she watches play itself out over and over with people who come in with Dementia-Lite. The person is placed in a setting, either for rehab or for a permanent stay, much like the facility my mother is in: Little available stimulation, few visits with friends and relatives, changing staff, changing roommates, no one available in any concentrated way to take the client in hand and guide them into a stimulating life, a lot of time spent indoors away from any kind of an environment that echoes normal concerns, let alone concerns about which the client is familiar from their own life. Added to this, the relatives and/or friends, especially spouses, she tells me, but often others, as well, are completely bamboozled by the changes taking place in their loved one. The attending ones spend most of their time trying to correct their loved one or responding with dismay or anger or alienation to what their loved one says or does, thus, allowing the loved one to slip further and further away from them. Under these circumstances, the OT said, the dementia increases. Inexorably. She watches this happen time and time again.
She spoke to me about this because she wanted me to know that this isn't happening to my mother. She explained to me that the reason it isn't is because, through our situation, instead of expecting my mother to adjust to me or assuming that my mother's dementia means that no one can make any adjustments, I am adjusting to my mother. Underlying her explanation was the clear insinuation that as I adjust to her, I preserve her confidence in herself and her relationship to the world as she sees it, understands it and continues to experience it. Thus, my mother continues to use her brain to work things out. She may not work them out, always, as I would or as society would have her work them out. Her understanding of life may be completely and totally different than mine in some areas because of her dementia, but by confirming that her reality is as legitimate as mine, by incorporating her reality into our shared life just as I incorporate my reality into it, I not only keep her firmly in her life, but I keep her in our life and in the life of the world at large. When she is within our shared life she expects to be a force with which to be reckoned, conducts herself as such and she is. When she is in the world at large she expects to be a force with which to be reckoned, conducts herself as such and she is.
This is, of course, not to say that there are types of dementia which do not incorporate stages in which such intense involvement of those close to the person with dementia makes no difference. Of course there are. But, there are some dementias which do respond positively to this intense involvement by stabilizing and, when that involvement is not available, these dementias worsen.
Writing all this with the intent to publish is fraught with risk for me because I'm aware of how impossible it is for most of us to follow our demented relatives rather than lead them. First and foremost, it is usually economically impossible. It is often emotionally impossible. It is intellectually inconceivable, as well, and apparently disastrous on several levels for most of us to, willy nilly, decide not to bother to think ahead to try to preserve some semblance of a separate life so that we have a safety net, at least a minimal one, upon which to fall when our Demented One's life ends. Believe me, at this time I do not have a safety net...and, within the last few weeks, a timetable, however tractable, for my mother's demise has entered our lives. There is a possibility of constructing a type of safety net before she dies, but the possibility is dim and bleak and may not work. Thus, on occasion, when I take a moment, here and there, to consider "the future", I experience moments of pure fear. I know that not only does my home society look askance on the likes of me and what I've been doing, I am constantly blamed in advance, in the literature which purports to offer me support, for whatever fate awaits me; a fate which is often described in miserable detail in financial, physical and emotional terms.
Not fun. But. I gotta tell you, I will not be changing my course. I've suspected that the way I've been doing my and my mother's lives has been best for both of us. I now have confirmation that I am right in terms of her life. I believe that I will have confirmation, in some way, at some time, that I have been right for me. It will, I also suspect, not be a type of confirmation that my society finds respectable or desirable. But I think I'll be able to live with it. In fact, I think that I would not have been able to live without doing what I've been doing.
When push comes to shove, and, believe me, concentrated caregiving of anyone of any kind, in our society, right now, is the epitome of this, we all do that with which we can live...or we don't live.
Am I making sense to you? I doubt it. But, you know, it makes sense to me. It has, it does and I am sure that it will.
Mom decided, earlier today,
that her roommate is her sister. She struck up conversations with her by her sister's name and, when her roommate went to the bathroom, repeated, several times, "Good-bye, [Mom's sister's name]," until I told Mom that her roommate was just going to the bathroom.
Having been alerted to the resemblance by Mom's blip of mistaken identity, I see it, too. Same color of hair, pretty much the same facial features, same ironic voice. Her roommate is fine with the mistake, even secretly pleased, I think. I've made a mental note that I'll have to remember, after tomorrow, that when Mom asks where her sister is I can let her know where her roommate is and that will work.
I got a chance to visit with Mom's roommate's son and son-in-law. They are both very concerned about her going back home to live alone...and both families (including wives and older children, as well as children who have moved on, married and begun families of their own) are also spread extremely thin what with keeping an eye on other Ancient relatives in the area and leading their lives. When I mentioned to the son-in-law that I was pleasantly astonished that his mother-in-law would be going back to her home and continuing her lived alone life, going on to say that I have a lot of admiration for her abilities and her spirit, he rolled his eyes and said, "Well, we do too, but none of us is sure, anymore, that that's the best situation for her since this fall." And so life goes with Ancient Ones. It occurred to me, fleetingly, that the hardest years of one's life on others are one's very first years and very last. At least she has a pack of family members looking out for her, some of whom will be there when she gets home and will take shifts staying with her for awhile until she either proves she's fine on her own or it becomes apparent that other arrangements will have to be made. She, herself, at this point, has no idea of the concern and circling of family going on about her. She would probably be indignant if she knew.
Mom and I found a beautiful, peaceful riparian area close to the facility that is perfect for daily visits and maybe even daily reading-out-loud sessions, which is something we've only been able to do a couple of times at the facility, so close are the quarters, there. We toured the whole area. At one point we came as close as we could, by sidewalk, to the wash meandering through the area. I attempted to describe it to her since she couldn't see it sitting in the wheelchair. She told me she'd like to stand and see it, so I wheeled her onto the sod and supported her while she stood. I'm pleased that her motivation to stand up and look around has returned. She may not recover everything she was able to do the morning before her legs collapsed while in therapy, but her determination and her comfort at home should help her regain more of what therapy isn't able to address. I'm prepared for the possibility that her height of her strength, now, may be a bit lower than it was that morning. That's okay with me.
In the meantime, escaping the facility, here and there, is just about the only thing that makes it bearable for her, and for me, as well. We're both troopers and I know we'll hang in "there" as long as necessary, but we're both looking forward to her coming home.
Time to check the cooling machines, pack up and head back.
My mother has relatives in Cedar Rapids, Iowa...
...at least, at last look she did, and, as well relatives in Mechanicsville, which is probably being affected by the flooding of the Cedar River and its tributaries, so we spent a fair amount of yesterday scanning through channels on the TV at the facility [Which doesn't have the option of Closed Captioning, by the way, which I find strange, considering that, at least on her floor, many of the residents are elderly and the din of blaring TV sets throughout the day is fairly regularly interrupted by a resident in some room yelling, "Turn that TV down!] looking for specific news about specific communities with which my mother is familiar.
I discovered that the bad night and coughing fit that my mother's roommate described were caused by my mother managing, in her sleep, to twist her industrial strength brief into a position in which she peed directly onto her bedsheets. The aids check sleeping residents three times a night. When my mother's predicament was discovered they not only had to change her completely out of her briefs and pajamas, but change the bedding. I'm sure the coughing fit was because, for part of this, she had to be on her back and being on her back causes her to cough. I'm also sure, now, that when she called out she was calling out, "No, Gail, no," protesting the upset in her sleep. When I have to do something to her that interrupts her sleep she often protests in this manner. I have been considering that her roommate may be misinterpreting Mom's "bad nights", as my mother doesn't have really bad nights, much, unless she's really ill. Now, I'm sure of it. This knowledge in no way lessens my gratitude that Mom's roommate is alert, it just reminds me that she, too, is Ancient, about to turn 89, and although significantly more mentally and physically spry than my mother (spry enough to live alone), she is also hard of hearing, although not as much as my mother, and, as well, liable to misinterpret what she's sees out of a sense of protectiveness. But, I'm glad she reports to me, no matter how muddled the facts become. She'll be leaving on Saturday. I'm glad she's ready to go home, but I'm sorry we'll be losing her as a roommate. I hope we get another roommate that is at least half as cordial as she. I'm going to miss her, jealousy and all. I know my mother will, too.
My mother's concern about people in The Dead Zone who might be affected by the flooding in Iowa is high, although not anxious. She's philosophical about natural disasters (that must be where I get it). She worried, yesterday, about whether "Lucille's violin" was lost in the flood and "what Lucille would do if it was." Lucille is the cousin who was touched by some sort of "brain fever" she contracted in India when she was a child and displayed her dementia through fits of uncontrollable laughter and wildly playing her violin. Mom is concerned, as well, about "the farm", although about which farm I'm not sure. I questioned her and it seems that the time she is remembering does not include her parents' owning of a farm, so they must have been plying their trades in town at the time my mother is imagining; my grandmother with her candy business and my grandfather at his auto repair shop. For some reason, though, despite her seeing the videos of stores flooded halfway up their storefronts, she is not concerned about her relatives losing their businesses. Interesting attitude. My recollection of my mother's memory of the various businesses her immediate and extended relatives owned and operated emphasizes business as being an aspect of the person who owns and operates the concern, not the buildings and the inventory.
Although she was tired, she fully participated in therapy. The PTs reported that she was slow, but continued to improve in walkering and sliding about on her ass on surfaces in order to reposition herself. She is not yet, though, ready to try walkering around the halls with me following her with a wheelchair.
I've started picking up the cleaning slack here over the last two days. It's going to take awhile and I am still sure that the house will not be completely Hospice-ready when she comes home, but, oh well. Got yet another night of good sleep, as well.
Today, sometime in the afternoon, I will be turning on the a/c and the evaporative cooler before returning home for the evening. I'm curious to see if either conks out, even though I have checked and maintenances both thoroughly. If they do, I hope I have the time to have them serviced. If not, my mother comes first. She likes the heat, so waiting until she comes home to have them serviced won't be a problem. Oh, reminds me, I need to pick up an oscillating floor fan. The one in front of the window a/c no longer distributes the cool air evenly. Hope I get a chance to do that today.
I also found my copy of How We Die. It has a couple of chapters on cancer, so I'll be taking that with me to the facility to read.
I should be catching up on my Highlights Catalog, but I'm not worried about losing any details. They remain fresh in my mind. They probably will for a long time to come.
Time to shower, eat yogurt, gather supplies and head out.
No, I'm no longer feeling overwhelmingly alone. Just overwhelmed by To Do Lists.
It doesn't have to be an overwhelming day...
...when I have more than I can sanely handle to be the kind of day that throws me into intermittent moments of feeling, "Yeow, I can't believe I'm doing this all myself! I wish I wasn't doing it all myself!" Today, for instance is one of the easiest days my mother and I have had, so far, except, I understand, Mom's day was ushered in with a hard night in which she awoke out of a coughing fit, became anxious and asked for me over and over. I guess she was settled down. I left a note in the Dailies on her Nursing Chart that, if this should happen and the staff has trouble calming her down to be sure and call me in. But, Mom got through it with only mild repercussions, the main one being that she is tired today.
Otherwise, during my quick visits home, more than one, today, I've been blowing out the evaporative cooler with vinegar water to rid it of hard water build up so it will be ready when the hot weather hits later this week. I smell like vinegar, but that's no big deal, and I always enjoy fooling around with machines, so that's been diverting. Mom's been in a fair mood. I paid mid-month bills, today. I haven't yet gotten around to restoring my old Mac files...although I guess I'd better do that soon. I've just about decided to take the machine into the facility with me during the day and do it while I'm there with Mom...although that will tend to divert my attention away from Mom, which she'll feel and may find annoying. Mom is wishing she was home...so am I, so are the kitties. That's nothing unusual. I'm not tired, got a good sleep, last night. Not hungry, not dehydrated...and not concerned that there are oodles of things that should be done that I won't be able to get done before Mom comes home and Hospice steps into our lives...Hospice will just have to step back a little and let me do things in my own time, I'm settled with that...
...so, maybe, it's just the smoothness of the day that throws me back on myself and causes me to reflect, here and there, that this isn't easy and I wish it was a little easier. I wish it wasn't just me. I mean, you know, there are plenty of times when I'm actually glad it is just me. But, today, I'm wishing it wasn't.
Back to the facility. Smelling of white vinegar.
Very good point...
...made by Deb Peterson in her comment to my last post and one that applies in Mom's and my situation, although I hadn't thought about it until Deb brought it up. Even in a place like the rehab facility in which my mother currently resides, where staff is rotated regularly and daily from floor to floor, which, I understand from one of the nurses, the staff, for the most part, doesn't like, he tells me they'd rather be floor regulars so they can get to know a set of patients, it is impossible for my mother and me not to become familiar, in bits and pieces, with the lives of those who work with my her and me. There's the nurse with whom I had an extended conversation about her husband's interest in switching careers to computer programming or web design. There's a CNA who has a year old daughter who hopes that her daughter will be there for her the way I am for my mother, someday, so we compared brief notes on certain traits that probably guaranteed that I would be "here" for my mother with traits her daughter has and, well, it looks good for the Mom. There's a bond I have with yet another nurse who, although he divulges little about himself, has a brain like mine so we are very comfortable discussing my mother's condition in detail. Yet another CNA and I spend time comparing notes about her family and what my mother's family used to be like and I've discovered that she is an excellent mother in much the same way my mother has been. There's another who CNA who, when she's on duty, is insistent that my mother get up in the morning, as "it's not good for someone who's had pneumonia to be lying around." I don't know much about her, I suspect she's very private, but I treasure this woman's concern.
In addition, partly as a tease to my mother to get her going, partly because I just love her and love to let people know what she's like and partly because people seem interested, I often "tell [my mother's] secrets" about her striking habits, now and throughout her life, "in front of [her] back", as my mother and I say, and this is fun for everyone involved.
Since I am this way in or out of a facility when Mom and I are together in "mixed company", I hadn't thought that this as one of the reasons why staff becomes involved with us. But, you know, people are people, no matter where you go, and everyone, including my mother and I, hungers to be recognized and known, even if some, here and there, are shy about putting themselves out there. The more we become known, I think, the more we are likely to want to know.
Quick report on yesterday: I arrived back at the facility before Mom was finished with her rehab, so got a chance to review, immediately, with the PT, how Mom performed. She did really well. She's back walking with her walker; not with the best of form but, oh well, at least she's walking, and she's walking a lot. She's standing and transferring herself from sitting place to sitting place with ease and with great technique. She continues to work hard, and she's usually ready for a nap when it's all done, but her spark and her sparkle continue to improve day by day. She and I are both very excited, and the PT's love her spirit. So, I think we're on our way, again. Time for me to start addressing the house, when I can, since we're both beginning to see, again, that she'll be home, soon. She's eating well, as usual, is lagging a bit with liquids, as usual, but easily taking direction on that and "her will and spirit remain strong and high, respectively". Instead of thinking, "Wow, is this woman really ailing from lung cancer?" my tendency is to think, "Hmmm...so this is Mom 'on lung cancer' at this time. O.K. I'll keep an open mind and we'll see where we go from here." Predictions, I think, can be helpful, and, as well, are little more than suggestions of what one should be aware, in case. Not sure, though, what my mother's case will reveal, so, we'll take it a day at a time, and do out best to adjust as we go. Can't do much more than that.
Time to pack up for the trail.
I want to mention...
...quickly, before continuing through preparations to head out the door, I am both astonished and affirmed at all the confirmation I'm getting currently, as well as depending on memories from reading similar online journals, of the necessity for keeping after institutional medical care and filling in the gaps on one's own. I have to say, even some of the aids and nurses at the facility where my mom is currently and temporarily residing have mentioned to me that they fully support my involvement and find it sadly curious and unfortunately that "not everybody" housed there for rehab has such familial support.
So, you know, it's a double-edged sword, the situation of avocationally seeing someone through an institutional stay. On the one hand it can be an in-the-moment irritant for personnel. On the other, at the end of the moment the staff is grateful that someone is picking up the slack that the administration of medical institutions currently guarantees will occur.
We're all in this together, I guess, and it's maddening for all.
Had a dream just before awakening this morning...
...strangest one I've had yet since receiving the news of my mother's lung cancer. Our entire family, including my father, who has been dead since 1985, and all my sisters without their marital/child extensions decided, at my mother's suggestion, to return to Guam, where us daughters were raised and where both of my parents formed a large portion of their fondest family memories. In the dream, in order to return as continuing residents (which for a reason I forget was desirable), we each had to purchase and wear a silver bracelet dangling a charm engraved with our name and a recent picture. I had a problem with this, as I didn't want my picture on my bracelet, I wanted a picture of the world. This was done for me, except that my bracelet arrived without my name, which branded me as "unofficial". But, we all arrived on the island. Each of us, although supposedly the same ages as we are (or would be, in the case of my dad) now, were completely different, as far as the way we looked; younger and sporting incarnations of ourselves that have never existed.
Immediately upon arrival we settled into a house on stilts, supposedly in a familiar neighborhood, but we lived on the northern end of the island and houses on stilts were built exclusively on the southern end when we lived there in reality. We all decided that we would take off and explore the island in order to see what had changed. Just before we split into our own adventures we looked through the "front" picture window of our house and noticed a line of F-5 tornadoes over the ocean lining up for assault on the island. In reality, tornadoes/water spouts are unknown in that area of the Pacific Ocean. We watched as one landed and dissipated against a cliffed shore that was clearly the setting for FAA beach, a rocky inlet down the cliff from where we used to live on Guam in reality.
MFS took off to explore subterranean caves with an obviously domesticated sled dog on the loose. Mom and Dad headed toward a strip of stores that used to exist along the shore on the east side of the capitol city, which was, when we lived there, called "Agana". Their intended destination was a store that was popular with our and many families, The South Seas. It was an import store. MPS took off to "the southern end" of the island, her intention being to go to a town then called "Umatac". MCS and I went to a high school band concert. The audience was littered with people each of us knew when we were in high school, but they hadn't aged and were also sporting clothes and attitudes not associated with them in reality.
A local guy who would have been unfamiliar to me in real life was singing. MCS took a fancy to him and decided to introduce herself. The two of them, and I, returned to our dream house. First, the guy sang a song to MCS a cappella. I tried to sing along, as the melody was very familiar to me, but really messed up the words, especially on the last chorus. Before MCS and the singer entered one of the rooms of the house and closed the door on me the guy told me, sadly, that the words had changed a lot since I knew the song.
My intention was to head back out in a car and see how the traffic patterns had changed on the island since we'd lived there in the sixties and seventies. First, though, I thought it prudent to call a fellow named "Paul" to have my bracelet changed, reluctant as I was to do so. I remember, just before placing the call, fingering the charm with the world on it and thinking, "But, this looks like me, why couldn't they just have put my name on it?" I also remember noticing the phone number on the phone, K 445-8417 R, and thinking, "That's the number we used to have when we lived here." In reality it isn't. In fact, for years, we had only a four digit number. I seem to remember that it was "5900". I should check that. I think, somewhere in boxes, we've got a list of old phone numbers for our housing area.
So, I called Paul, argued that I should be able to have my name below the picture of the globe on my charm, thus making the charm, and my residency, legit. Paul countered that the world doesn't look like a person. I gave in.
At this point I awoke from the dream. I was immediately sad, very sad. Within minutes, while feeding and watering the kitties, I began sobbing. Suddenly it occurred to me that this crazy dream was, somehow, filled with the sub- and unconscious activity of my grief, which I haven't allowed myself to express in the last weeks. Yesterday, in fact, an event took place which made it clear to me that I was avoiding acknowledging and expressing my grief over finally having somewhat of a time table for my mother's death. I had to pick up some more styling mousse for my mother from the barber who usually does my hair. I haven't been in for a cut since December, which isn't surprising. It was soon after I got the cut that "things" started to snowball in our lives, all of the events contained in the snowball leading up to her hospital stay and what we're doing now. When I entered the barber's shop we greeted each other and I spilled the news about my mother. Everyone in the shop, barber and customers alike, began expressing sorrow about the news. I was unusually stoic, though, and insisted that "it's not bad, it's good" and "nothing has changed except that a lot has been explained" and "we'll just continue on as before, this time with the knowledge that we're on the final approach."
After the visit, during which I also mentioned I'd be calling today to set an afternoon appointment to get my hair cut (which it desperately needs) during my mother's rehab session, I couldn't help but review my strong reaction to everyone's sympathy and wondered, briefly, why I was insisting on disallowing everyone to express grief and sympathy in regards to my mother. That moment passed, though, as I headed back to the facility.
Then, in the evening before bed (I actually got a full 8 hours last night), I remembered a movie I'd watched some years ago, "Caro Diario" I think the name is. It is an informal journal done by an Italian filmmaker and features his journey through a diagnosis of lung cancer. Turns out, after seeing several specialists who gave him a death sentence, he visited an acupuncturist who confirmed the existence of a mass in one of his lungs but determined that the mass was benign. The guy had the mass removed and continues on. I remember thinking last night, "Hmmm...I wonder if this might be true of my mother's mass...after all, it's been there for awhile and has not metastasized, which is unusual...it's causing no pain and only gently and indirectly affecting her health (although in none of the ways that the filmmaker's mass affected him)...I wonder if I could find someone to do a non-surgical needle biopsy of the mass to determine its nature..."
Then, I went to bed and awoke this morning in the sorrowful wake of a strange dream that is finally allowing me to confront the obvious.
I'm not sure if I'll follow through on my idea to investigate the nature of Mom's tumor. Even a needle biopsy, at this point, would be tricky for her, if such a thing is even possible. What I do know is that I'm finally facing what I thought I was facing previously.
Want to mention, also, since it's on my mind, my appreciation for the comment on the immediately previous post and two emails I received this morning, one from the commenter and one from a good friend from DS with whom I've recently reconnected. I have considered ingratiating myself with the staff...I did that, in fact, during her previous rehab stay "Down in the Valley" four years ago. This time, though, my intentions have been squandered in my zealotry, which has been aimed at making sure my Mom gets as much of my attention as I can muster. I've been careful about passing out effusive compliments when I notice excellent service, but haven't yet picked up donuts...might not be a bad idea.
The email I received from my DS friend underlined the fact that getting her mother (who has since died) out of the institutional clutches of medical personnel was the best way for her to handle her situation with her mother. I have to admit, that has surely crossed my mind, at least once a day. At this point, though, my mother simply isn't responding well to me when I need her to stand and move in order to accomplish some task, but she's practically dancing on toe for the therapists. As well, the most we can get out of Hospice is three PT visits per week. Here, she gets daily therapy, which she needs. I can tell its working because of a report that, night before last, the night of June 9th, Mom attempted to get out of bed in the middle of the night. Luckily, she didn't fall, she just hung herself up on the edge of the bed. Although this doesn't sound like good news, it is. She's recapturing her confidence in being able to move as she wishes, even if her muscles aren't quite yet supporting that confidence. I am, though, alert, every day, to the possibility that I can remove her from therapy and take her home at any time if the situation becomes dicey, and I will. In the meantime, moment to moment, I continue to confirm that she continues to need and continues to benefit from the daily therapy. As of yesterday, as well, when I humorously complained to her therapists (she has two, one for PT and one for OT) that I wish Mom would perform for me as well as she performs for them, I jokingly mentioned that I'd like to take one of them home with me to ensure that Mom remains as mobile as possible for as long as possible. One of the therapists mentioned that maybe I should consider an outside-of-insurance hire to fill in between what Hospice offers. I'm ashamed to admit this hadn't occurred to me, but it has now, and I think we've got enough money to cover daily visits, so I'm planning to investigate this, if it becomes obvious that it would be helpful. As well, I'm already investigating the possibility of hiring in-home massage therapy for her, which looks both possible and good.
As my DS friend mentioned happened with her Mom, once I get Mom home I expect she'll rebloom in familiar surroundings, at least for awhile, and then coaxing her mobility cooperation with me might not be such a trial. But, in the meantime, she's being helped more than ignored at the facility, what with all the therapy pros and their amazing techniques and the machines they have available for use. I still consider it a viable opportunity for Mom, even though it's taking more out of me than I imagined.
I believe my cold has given up. I believe I'd better get my ass moving and get ready to head out. "I believe, I believe, I believe..."
I should be sleeping. I feel like I still need sleep...
...even though I had a fairly good nap, today, and lay around the house hacking and blowing my nose and feeling generally miserable. And yet...and yet...
Forgot to mention, probably because I was so out of it this morning, when I went in to let everyone know I wasn't going to be officially in today, Mom's roommate informed me that despite me telling the aid for my mother's side of her floor last night, and the nurse, as well, that I wouldn't be back and Mom needed to be prepared for bed without me, at 2130 the roommate awoke and noticed that Mom was still sitting in her wheel chair, at the window, fully dressed, in the dark. I imagine she was asleep in the chair. The roommate told me she buzzed the aid, pointed out the situation and the aid responded that "Her daughter usually does that." Truth is, I've been so goddamned far in the toilet today that I have no idea who to believe. All I know is that Mom finally got to bed.
When I arrived this evening around meal and med time I noticed that, once again, third day in a row, Mom had been dressed without a bra. What is the deal with this? Anyway, other than that, she apparently had a good day. The PTs who worked with her said that she'd had her "best sessions yet". Good news. She's coming back fast and going on. Then I discovered that the nurse from last Thursday (I think it was Thursday but it might have been Wednesday) who had the extremely lackadaisical attitude toward med dispersal was on, tonight, so I guess either no one else complained about her or Mom was the only patient toward whom she was lackadaisical, and responsible for my mother's side of the floor. So, of course, I stayed, to make sure the meds were right, which they were. When the nurse set up her breathing treatment and told me, that's right, told me, not asked me, to give the treatment after dinner, I responded that I wouldn't be there to give it to her and she'd have to do it. It was obvious from my condition, only barely disguised by the half cold pill I'd taken a few hours before so that some of the cold spillage would dry up during the visit I'd planned, that I shouldn't have been in there anyway, but, there I was.
Funny, one of the superior nurses on the day shift has mentioned to me several times that many of the things I do while I'm there are meant to be done by the aids and nurses and I should let them do them since they get paid for them. One day last week he even stopped me from doing some things, like making Mom's bed afresh because she'd scratched her back in her sleep (which she often does) and had gotten blood on the sheets, and returning cafeteria trays that had been left in the room for a couple of hours because Mom eats slow. And yet, when I go out of my way to let people know I'm not going to be there to do those things that they get paid to do, lo and behold, they don't get done.
Yes, I'm in a fucked up mood. On my way to the rehab center I picked up my Mac, all shiny and fit with a new double sized hard drive. Come to find out that restoring the back up isn't as simple as the "official" application I used would have one believe, especially since when the people at the repair shop installed the system they got my username wrong, which I'd given to them in writing. So, now, I have to go through a prolonged, painful process of manual restoration, which, apparently, involves changing stuff at the UNIX level, once all my files, all 37.5 GB of them, are restored to a separate folder rather than replacing what is on the machine now. I'm sure I can do this, I understand all the instructions, but, jesus, I wasn't planning on having to do this. I asked if I could just bring the machine and my back up drive in and have them do it. I offered to pay. The shop refused to do this, citing liability regarding proprietary information that could be on my back up, etc.
So, I'm totally pissed at the world, am hoping I die of a heart attack or something else equally quick and tidy tonight so I don't have to go through all this shit anymore. I'm sure my mother is in for at least two more weeks of rehab. That means two more weeks of 12 hours days at rehab for me just to make sure my presence ensures a modicum of decent care for my mother. I am about ready to strangle my mother's roommate, despite the possibility that she may have actually saved my mother from an entire night in the wheelchair, simply because she also took it upon herself to try to deliver a lecture to me on how, no matter what, I "should" be there, constantly for my mother. I deflected her in no uncertain terms and only partially diplomatically told her to shut up. In my equally strong, no-such-thing-as-indoor-voice I assured her, and probably everyone lurking in the halls and a few close rooms, that, yes, I know the facility sucks at bedside care, I know its staffing situation guarantees that no one gets very good care, I know that my mother needs a protector there, I know no one else has one and if my mother is lucky enough to have one that protector should be there no matter what, I know, I know, I know, and I don't want to TALK ABOUT IT ANYMORE!!!! I'm doing what I can. It's more than anyone is doing for any other patients in rehab, whether those other "anyones" are staff or family. Leave me the fuck alone!!!!
I'm sure that part of the problem, as it always is in medical facilities, is that the staff actually comes to depend on my mother's dementia to keep them from having to do too much when I'm not there. I mean, my mother, for instance, doesn't remember spending several hours sleeping in her wheelchair. She has no idea when she's swimming in her own urine inside an industrial strength brief, and, besides, she has no concept of call buttons. She's easy when I'm not there. Who cares if she gets a urine rash or sleeps sitting in a wheel chair. There's too fucking much for the staff to do. If I had wanted better care for her I should have taken her someplace else; except that the other two places that actually have good reputations (and, there are only two) are always full and were full when my mother needed rehab.
Jesus, jesus, jesus. What a fucked up world we live in.
Well, I feel better. I think I'll finally hit the sack. I'm not going to set the alarm but I assume my cold will awaken me early enough for me to make it into the facility in time to get a goddamn bra on my mother before her day officially begins. And get her bathed. When I don't do it every morning, she doesn't get bathed but once a week, and I haven't done it for three days. Baths are important. They stimulate the skin and the circulation. They are important for arousal and for prevention. But, you know, at a severely understaffed facility, so what????
This is ridiculous. May the gods save me from both infirmity and old age. If they don't, I'm of a mind to save myself from them.
Looks like my exhaustion had an ulterior reason.
After a good evening's relaxation and a good night's sleep, I awoke with an elephant on my chest. I guess I picked up my mother's chest cold. Not a good idea to reexpose her to that, so, knowing that the central nurses station, the body of the "spider" into which the care center has been architectural designed, has mouth covers and hand sanitizer for people who may be suffering from viruses, infections and such before they continue to the floors, I went in at 0700 this morning to let my mother and today's medical personnel on her floor know that I wouldn't be spending the day there. It may seem redundant to do that but you never know who the aids might be on the floor and it is always a good remind people that Mom has absolutely no idea what to do with a call button, thus, she needs to be checked for wetness, needs to be helped to dress and helped into her wheel chair, needs to be sat by the window with her magazines, etc. The weekend day aid was magnificent about this, but I have yet to notice that the weekday aids pay much attention to it.
I have to mention, despite understaffing, the administration appears to be extremely responsive when they discover that an aid or nurse is incompetent and sloppy. Last week, one night, Mom's "side" had an evening nurse who didn't bother to read the med charts as she was passing out dinner meds. When she arrived in my mother's room she carried nothing but Mom's glipizide. I "reminded" her of Mom's Rx iron and breathing treatment. She returned with a standard iron supplement and no breathing treatment. I walked her to the cart, ran her through Mom's med chart and supervised her while she ferreted through Mom's med file (which has the cards with Mom's meds in plastic bubbles already set up for easy access and labeled with her room and bed number) and had her retrieve all the right meds.
I probably should have reported her, but I didn't; MPS, MPNC (who were visiting), and I were too busy negotiating other Mom concerns. MPS and I discussed the problem that evening when we arrived home. I mentioned that I wanted to approach the problem from an angle that didn't alienate the nurse, who I figured was likely to remain in service, nor the rest of the staff. "I need them on our side," I said.
Turns out the nurse has not reappeared on any of the floors since. My guess is that my mother is not the only patient who was treated to this nurse's lackadaisical service that night.
I have to say that, despite severe understaffing and high tension, all members of the staff, including floor personnel, maintenance, PTs, supervisors and administration, are extremely responsive and helpful. I have no idea how they do it. I'm sure the turnover rate is high, judging from the fact that all the employees at Mom's intermediary care home where she was housed while I was granted five day "respite" had worked at this rehab facility and quit, and all informed me, ahead of time, what to look out for at the facility. Still and all, while people are in the employ of this rehab center they try their damnedest to give high service, often succeed, many spectacularly, and even manage to bond with some of their patients.
I am appalled, though, daily, at the obstacles people in the care professions have to hurdle simply in order to do their jobs and remain alive to do them yet another day. We are not headed for a breakdown in medical management and service, people, we are there.
I think I'll down my supplements for the day, drink some tea, cough, wheeze and blow my nose and continue a day of convalescence. My trusty Mac G4 iBook's hard drive finally died on Friday (it was five years old and, up until now, had nary a problem, it even still has the original battery), so its in the shop and due to be available for pick-up today but I doubt I'll get around to picking it up nd restoring its recent back-up until at least tomorrow. I just don't have much energy and I figure I'd better save what I have to check in on Mom this evening and alert the evening staff to my absence.
I'm ruminating on the comment left by Deb Peterson about how caring for someone who is being cared for by professionals can be harder than doing it yourself. And, I'm finding out, more draining. I have never been as susceptible to physical and emotional breakdowns as I am right now. It's incredibly frustrating.
One day at a time...one moment at a time.
Whew. I'll be glad when we're all back home.
I thought I knew what "exhausted" means...
...but, today, I discovered yet a new level. Even though I'd gotten a good seven hours of sleep last night, by 1100 I could barely keep my eyes open at the facility, despite the home made pot-in-a-cup coffee I had this morning. Mom was, once again, already changed, dressed, in her wheelchair and eating when I arrived betwee 0830 and 0900. My intentions were, on arrival, that I encourage us to either go on another adventure walk outside or consider attending one of the eight services the church on the hill offers on Sundays, as Mom had mentioned, yesterday, that she'd like to do this. She wasn't interested in either, but wasn't in a bad mood...just maintaining a ho hum energy level. She was into a game of Sorry and interested in us continuing our reading through the chapter we'd started before she came to the facility. Then, she just wanted to stare out the window. I'd already noticed my energy level was falling through the floor. Finally, I asked Mom if she'd mind if I took off for a nap. She had no problem with this. I stopped at the store to replenish supplies (yogurt, pomegranate juice, black cherry juice, roast chicken for the week) got home a little before noon, collapsed on my bed and awoke at 1556 this afternoon. It seemed as though I was rested. I gathered a change of clothes for Mom for tomorrow, some yogurt and a salad so I could eat dinner with Mom, headed to the facility.
When I arrived, Mom was napping, as usual, from her OT therapy session today. It seemed as though I was fine. I gently awoke her, as usual, in order to get her up and ready for meds and dinner. She wasn't hard to arouse, but she wasn't her usual cheerful self, either. I managed to coax her into a sitting position at the edge of her bed, even got her to stand and maneuver into her chair, but she gave up halfway through and collapsed in a "was a crooked [woman]" pose sort of hanging by her ass off the edge of her chair. I couldn't move her on my own into a more comfortable position and couldn't talk her into repositioning herself. Instead of continuing a gentle working of her, I found myself becoming irritated enough to tell her, "Mom, you've got to help me help you. I know you can do it. This is the whole idea of this therapy, to get you strong enough, again, so we can continue our life at home. Please, please, please, try for me. You know, the aids tell me that you always help as much as you can with them. It only takes one of them, anymore, to help you and most of the time they tell me you work hard for them. One of them told me this morning that you don't work as hard when I'm around as when I'm not. Mom, when you get home, it'll only be me. You've got to respond to me like you do to the aids or it's not going to work."
Her response: "Right now, I don't care."
I almost launched into a tirade, but I didn't. I pressed the call button, took a deep breath, gathered up my things. An aid appeared. "I guess I'm not as rested as I thought," I said to both the aid and Mom. "If I stay, tonight, I'm afraid I'll get irritated. I don't think that's good. Mom's pajamas are hanging over the edge of the bed. If you'll help her get straight in the wheel chair I'll wheel her to her table by the window for dinner. Mom, I've got to go, get some more rest. I love you. I'll see you tomorrow." I walked out at about 1715.
I've been chilling since. I can tell I'm scrapping bottom for energy and motivation. I'm hoping a long, easy evening and night will turn me around. Even though I know there will be holes, here and there, in Mom's care, tonight, and Mom's roommate, a usually delightful woman who, unfortunately, believes, as well, that I should be at my mother's side night and day, despite my inability to do so and despite the fact that no one is doing the same for her, not even approximating what I do for Mom, nor is anyone doing the same for anyone else on the floor, will be full of stories tomorrow morning about how bad Mom's care was during the night, stories which will have only wisps of truth and which will be loaded with the roommates indignant annoyance that I checked out early, Mom will be fine, tomorrow is Monday, full of therapy, lots of attention, etc. I'm not worried.
Well, I am a little worried about one thing. I didn't expect to have trouble "holding myself up". I'm surprised that I'm beginning to fray, here and there, but I'm dealing. I think, as I notice the fraying, it's best to address it at the time, rather than, as Mom's roommate would like, muddle through regardless and allow myself to completely unravel. I can't afford to be a mass of disconnected threads when Mom is released. Mom can't afford to come home to me with me in that condition, either.
Now that I'm thinking about it, I guess the real surprise is that I didn't begin to fray earlier. So, that's one point in my favor: I held up for three and a half weeks of caregiving under the most insane circumstances before I began to melt down. And, I think I've caught myself before I reached the point of no return.
Tomorrow's another day. Roommates be damned. Other people's opinions be damned. Mom and I know what each other is doing, what each other needs, what we are still capable of giving to the other. We're in good shape. We can deal with well meaning but understaffed facilities. We can deal with interesting but jealous roommates. We can deal with our own fatigue, and each other's, as well. We can deal with anything. We're a team, even when we're separated. We'll be fine. All ways. Always.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson