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.
The memory of Champagne trumps the reality.
Don't misunderstand. Mom was duly impressed with the "Champagne Kick Off" dinner. She ooohed and aaahed and chuckled and wriggled in her rocker...she almost fell over her walker making her way to her rocker for the repast. We were both in a party mood all evening.
Funny, though. She took one sip of the golden liquid with kinetic threads of sparkle and that was it. Throughout the rest of the meal, which, considering it's layout, took quite awhile for her to eat, she stuck with her coffee.
Toward the end of the meal I reminded her, "Mom, you've got almost a full glass, there, of Champagne. Don't you like it?"
"Oh, yes! It's a beautiful glass," she exclaimed. "Where did you get these?"
It's always nice to know that a relatives tastes remain constant. "They're yours, Mom. You bought them on Guam."
"Oh, my, yes, that's right." Still, she hadn't picked up the glass.
"Are you going to drink the Champagne?"
"Is that what that is? Well, yes, I think I will."
The glass remained untouched. When her plates (one for the cracker/meat/cheese appetizers, one for the pickles) were clean, as I took them away in order to make room for a small plate of the Ghiradelli chocolate squares, one of each flavor, I reminded her, again, of the glass of Champagne. "Are you going to drink that," I asked, "or should I dump it?"
"Oh! Yes! Of course!" She picked up the glass and drank the contents in one guzzle. A moment later she looked at me through a sour squint and said through puckered lips, "That's not water!"
I laughed. "Well, no, that's the Champagne you asked for. I think it's more of a sipping drink."
"Oooh! Well! I think it's not much for sipping, either!"
"We've got the rest of the bottle, Mom. There's quite a bit. Do you want me to save it?"
"I don't think that's necessary. Unless you want it."
No. I have to admit, after I'd poured her glass I was so taken by the look of the stuff that I poured myself a liqueur glass full, thinking that maybe it tastes better than I remember. It doesn't. So, I guess we won't be having many Champagne nights. But, by request, we will certainly be having more "Appetizers for Dinner" nights. And, the chocolate squares were a hit, as well.
When I bought the Champagne, I was careful to consult with the owner of the liquor store on why I was buying it, asking, as well, for direction on a really good Champagne, as long as it didn't cost $250 a bottle. I'm sure he directed me well. A customer in the store also chimed in on the quality of the owner's recommendation. I'm sure the quality wasn't the problem.
I'm curious, now, to see how Mom takes to the Mateus Rosé that I bought. That's still chilling in the fridge. I also ordered a bottle of the Lancer's, since I know that was her favorite, and I'll pick it up when it arrives. I have a feeling we'll probably be discovering that these are also better in memory. That's okay. It's definitely worth the excitement of a special night.
I should probably mention, although I will be making a more spectacular mention of this later, I'm in the final lap of switching all these journals over to my new domain. This is setting up two circumstances: Links will again be broken, the inter-post links for some weeks, probably, and the Link Section links for a bit less time (except for those on the test results, which will probably be broken for the longest period of time). As well, if you use the blogspot urls, you will be greeted with a "redirect" page. It doesn't work automatically. You have to indicate that you want to be redirected. I'm hoping most people will want redirection.
At this point I've transferred all but the Dailies and this journal. I still haven't restored my Mac files, although I plan to do that soon [I think you've heard that one before, right?]. I'll blanket email everyone whose address I have on this computer, but that isn't many of my former readers. Of course, it's entirely possible that many of my former readers have either not found there way here or have chosen not to look for my location. Whatever. Anyway, my intention is to post a day ahead when this journal is moved. It will be the final journal to be moved.
Getting close to the end of Mom's nap.
I am so excited I am fully in "can't keep a secret" mode...
...so I figured I'd post about "it" in the hopes that this will help contain my nearly irrepressible excitement. Truth is, I'm always in "can't keep a secret mode". Various members of my family have developed stern measures to keep me from revealing secrets to themselves or others in an untimely manner. But, normally, there's a 10% chance that, without intervention, I can keep a secret. Today, I'm afraid, I need some intervention, so I'm telling the secret here in the hopes that I will not reveal the secret to my mother and spoil the surprise.
Tonight will be "Champagne Kick Off" night. Serendipitously, the day I called Hospice about the possibility of my mother drinking alcohol in moderate amounts and was told this was fine, provided I'm careful about the circumstances, including her medication, TCM ran Gigi. This isn't one of Mom's or my favorite musicals, it isn't in our film library for a reason, but we both enjoy it now and then if we want to watch something but are stuck in ambivalence. It is particularly appropriate at this time, though, because of the song-and-dance number, "The Night They Invented Champagne", a bubbly presentation delivered by Leslie Caron at her spirited best which is always fun to watch. The movie gave me the idea for tonight's Champagne Kick Off. I'm going to produce a special appetizer dinner, for which I just returned from shopping, which will be served just before above mentioned number begins. It will include appetizers made from all Mom's favorite deli meats and cheeses on one of her favorite types of crackers, saltines. Actually, her absolute favorite crackers are Ritz but I, frankly, forgot about those because I don't like them. Saltines are perfect, though, for all the flavors and colors she's going to experience tonight. There will, as well, be a variety of her favorite pickles, including cocktail onions, garlic stuffed olives, sweet cherry peppers, pepperoncinis and Mrs. Fanning's Bread & Butter pickles (wish we had some of MCS's, but, unfortunately, we're out of those; the aforementioned brand, though, is the brand Mom favored for decades before MCS discovered her Bread & Butter talent). I bought some potato salad which I'll be embellishing with chopped onions, celery, Spanish smoked paprika and dill pickle relish. On a whim, I also purchased a bit of her favorite deli tuna salad to spread on a few crackers. Since I don't drink alcohol anymore (by choice; my only slight appreciation for it in earlier years evaporated with menopause) I also purchased a bottle of sparkling cherry juice, my favorite. This way we'll both have bubbles in our bamboo pattern etched, hollow stemmed crystal champagne flutes (the crystal set of which my mother favored and bought for herself eons ago on Guam), tonight. Although the Hospice nurse mentioned that alcohol and desserts probably shouldn't be mixed, one of my mother's favorite after dinner delights is chocolate covered mints, so I picked up a small bag of Ghiradelli's dark chocolate mint cream filled squares, as well as a package of caramel and raspberry cream filled squares, just for fun. It's simply impossible to have an elegant appetizer dinner without a delicate, sweet finish. Dark chocolate, after all, is good for one's blood pressure, isn't it?
I can't wait! I can already hear my mother's exclamations throughout the evening: "Oh my! This is wonderful!" "Mmmm...delicious! When did you do this?!?" "I feel like a Queen!" "This is how we should eat every night!"
Chances are, we'll eat like this much more frequently than we have.
Well, I've already delayed my mother's 12-hour-sleep-mark awakening by 30 minutes, just so I could blabber all this now so I don't spoil the surprise before I present it.
Time to start the count down.
A few less days than a week ago, when I was researching lung cancer on the web looking for indications that my mother was declining, one of the search strings I used was "'lung cancer'"+sleep+problems". I was looking for indications that people with lung cancer tended to increase their sleep quotient as their cancer progressed. This, however, wasn't the "lung cancer sleep problem" to which I was directed. I was, instead, overwhelmed with article after article mentioning the prevalence of sleep disturbances (varieties of sleep apnea) and its effect on quality and length of life during lung cancer progression. Although I perused several of the articles into the third search page, unfortunately, since this wasn't the information I was seeking, I didn't bookmark any of the pages. However, one article piqued my continued curiosity and contemplation. It mentioned that when these sleep disturbances were successfully treated so that the person with the difficulties could enjoy restful sleep, the result was usually a longer than expected and higher quality of life. The article opined that this happened because cancer puts unusual systemic stress on one's body, especially lung cancer, because of its obvious pulmonary involvement and the pulmonary system being what "inspires" life. Thus, restful sleep, within which stress is managed and its debilitating effects alleviated, had an acute healing effect on people with lung cancer.
At the time I read this I paid little attention. Over the next few days, though, this information coagulated itself into a supposition about my mother's lung cancer experience and her years-long prodigious sleep quotient. Let me preface by saying that for some years I've worried about the amount of sleep she packs under her belt, sometimes tried to manage it downward, usually unsuccessfully, and have even, at times, attributed health difficulties to her extraordinary capacity for sleep and, as well, worried that it was taking her out of life, as well as shortening her life. I've written about this, occasionally, here in these journals. This article, though, puts me in mind that, considering how long she's probably been nurturing her lung cancer, maybe her staunch insistence on getting all the sleep she feels she needs, however unreasonable it has seemed to me, is one of the primary reasons why she's still here, still engaged in life.
A long, long time ago, long before I became involved with my mother in as direct a manner as I've been since December, 1993, I remember wondering, simply and with much unsupported naivete, if, the more one sleeps, the longer one is likely to live simply because sleep is a way of moderating the stresses of Waking Life, to inappropriately appropriate a title. I never attempted to confirm or exclude this, I've just kept it tucked away in my "Possible Life Dicta" pseudo-intellectual Grey Pocket. Another one of those pseudo-intellectual Grey Sub-Pockets is devoted to the Dictum that sleeping with animals (in our case, kitties) is a particularly healing experience. This Dictum provokes me to often note, with pleasure, the presence of one or two kitties on my mother's bed when she has had a difficult period of wakefulness.
So, you know, I wonder...I'm just wondering...
Almost time to experimentally rouse The Mom.
Over the last few days...
...my mother's touch, when I have been assisting her in movement, has been noticeably lighter, her muscles in her forearms noticeably less tense. This doesn't seem to be affecting her agility (or, more appropriately, her lack thereof). I've also noticed that I don't need to grip her more tightly or steer her more securely. For well over a year, when I assist her by securing her arms with mine, I've been gripping her from from the backs of her elbow(s) and extending my tensed forearm along hers, making sure her hands are locked onto my inner elbow, functioning as a living rail. This hasn't changed. It's just that her forearm muscles are now loose, where, a few days ago, they were tight.
Since this doesn't seem to be affecting her movement, I'm not concerned, just curious. Early this morning, as I was drifting off to sleep, I wondered if this is metaphorical indication that she is "letting go", hanging onto life less tightly. Nothing else in her behavior is signaling this, but, maybe, very little will, considering her character. Last night, for instance, after dinner, when I produced the oven-warm cherry pie she'd requested for dessert and asked her how large a slice she wanted, she grinned conspiratorially and indicated a quarter of the pie. That's what I gave her. Seems as though I may be right about the end-of-life sweet roll scenario.
For some reason, contemplating this put me in mind of recalling that when the Hospice RN and Physician left on Wednesday, verbally taking leave of my mother, my mother said, along with her acknowledgment of their leave taking, "It's [the visit] been very inspirational!" Surprised everyone, including me, although not one of us followed up what she meant, only took note that it was obvious that she had not picked this word out of oblivious air. Most of the visit had been directed toward me, which is a switch from previous visits, and the direction involved the RN's and Physician's concern about my perception of Hospice and my mother's status within this sphere of care. Even when I'm in on the conversation, my attention rarely strays from my mother. She was, as usual, acutely tuned into the conversation going on around her. I could tell, from certain familiar physical tics, that she found parts of the conversation particularly interesting, almost as though she was storing them for future consideration. However, although her lung cancer and her eventual death were mentioned more than a few times, and when these subjects floated to the surface my mom-attention was particularly acute and detected no indications of surprise or heightened interest from her, my assessment includes the fact that these subjects were not necessarily of more interest to her than the rest of the conversation. I have to admit, though, I didn't take specific mental note of the bits of conversation that aroused her interest above her usual attention. Wish I had, now. Perhaps I'd have an idea of what, about the visit, inspired her and how so.
It looks as though today will be yet another Last Monsoon day, for at least another five days, so my plan is to take it easy and fully enjoy the promised afternoon and evening showers. Last night was the first night since the beginning of summer when the temperature dropped substantially before bed, enough so that I closed all windows and doors and turned off all but one fan before my mother awoke from her evening nap. About three days ago I began leaving the bathroom heater on 24/7, as Mom began to complain of the cold toilet seat. The sun is daily angling itself further into our living room, preparing to naturally heat the front part of the house during winter. Last night at the grocery as I was picking up the requested cherry pie for dessert (I checked for Lancer's or Mateus, Mom's preferred rosés, but this grocery doesn't stock them, so I'll be visiting a liquor store within the next few days...I hope these brands are still available; part of Mom's pleasure in these wines is their distinctive bottles) the clerk and I spent a few moments marveling over the continuing rains, hoping for a white Christmas, as well as winter, and reminiscing about the few white Christmases we remember in this area over the last little-over-a-decade. One last Christmas Card Christmas, I think, if the Mrs. Christmas who is my mother is still here, would be the appropriate icing to her well contrived cake of a life. Let it snow, this year over the holidays, and let it snow some more and let it snow again.
Out of curiosity I'm going to try rousing Mom an hour before her 12-hour-sleep-mark today. Although I only do this, anymore, if she's expecting visitors (usually Hospice visitors) and I prime her the day before and upon awakening so that she slips easily into gear, I'm wondering if she's still capable of a bit less night sleep when no particular reason is attached. I'm not planning persistence, I'm just wondering if this is still possible. I will, of course, report back.
Quirky, sometimes, what my mother remembers...
...versus what she forgets. A little over a month ago during the afternoon when she was up I surfed our cable station line-up looking for movies to record on our DVR that she might enjoy. One of the channels I always check is the Hallmark Channel. Aside from my mother being a sucker for their movies, primarily because they are gentle, often funny and always contain homespun wisdom, often spouted by a member of "the older generation", the descriptions of their movies on the station guide are spot on and she can understand, immediately, what a movie might contain. As well, of course, the Hallmark Channel carries more than a few program reruns that my mother favors (surprisingly, Little House on the Prairie, which seems to be a staple on that channel, isn't one of those; I don't know why, but that show has always irritated her, even though she, along with at least two of her daughters, me included, loved the Ingalls Wilder series of books). My mother also favors their Tea and Sympathy mysteries. Occasionally she can handle a dark mystery but, most of the time, these irritate her. I've often considered that perhaps this is because dark mysteries are usually filmed through dark filters and little irritates my mother more than dark-screened shows.
During the above mentioned surfing period, my mother happened to catch that Touched by an Angel has a regular spot on Hallmark Channel. She vaguely remembered the show. The year it first aired, 1994, in the middle of the season MFS tipped us off to the show and, from then on, when we could, we caught the first run episodes. Back then, my mother was spades more active than she is now, so we probably missed as many as we caught. My mother's memory retains those shows, though, enough to ask if we couldn't watch the episode through which we scrolled a few weeks ago, "how about now?" The spot, however, is at 0900 our time. My mother never sees that hour of the day anymore! I promised her I'd set the program up as a daily series recording and, since, once a day weekdays we've been watching episodes of Touched by an Angel, usually right after breakfast and chores.
Mom remains fairly interactive when she watches television. During this show, though, she is unusually interactive. I'm not sure of all the reasons, but here are a few I've considered:
- She is a die hard fan of Della Reese's voice. When the theme begins, my mother relaxes even further in her rocker, she smiles with much pleasure, one of her hands keeps time to the song and she always says, afterward, "I love that woman's voice!" She did this when we watched the series in first run. She does this now. This is the only show through which I consistently do not fast forward through the opening credits.
- She absorbs the stories as though they are happening in her own life. Not that she compares story lines to actual life lines with which she's familiar, rather, her curiosity kicks in. It is not unusual for her to opine, out loud, "Now, that's an interesting problem," or "I'd like to know what they're (presumably the angels) are going to say about that". Thus, our viewing of the shows always takes more time than the actual episode and frequently stimulates conversation points which last throughout the day.
- She's a sucker for shows about the Abrahamic Bible, about its history, about various religions, even when they are serious, scholarly shows, etc. Despite its light religious touch, this show qualifies. She is quick to pick up on biblical references, especially since they are so clear in the show. I have a looong memory of one in particular that she found especially fascinating during the first run of the episode. The story involved a boy whose name is "Darnell". One of the angels, I can't remember which, pointed out to the lad that his name comes from the Bible and means "weed", thus dubbing him as someone with an unquenchable thirst for survival, even in the toughest of conditions. Every time I do some gardening, I remember this, remembering, as well, my mother turning to me many years ago during the program and saying, "That's interesting! Did you know that? I've never liked that name, but doesn't knowing that make you wish you're name was Darnell?!?" Actually, considering her life since, especially the way she's flourished through her medical challenges, I suspect her "secret" name is Darnell. We haven't yet run across this episode but I'm looking forward to it. I wonder if she'll have a similar reaction.
- As I was falling to sleep last night, ruminating over her enthusiasm for this series, it occurred to me that this might be her preferred type of "spiritual counseling". I'm still not quite sure if she even registers whether the span of her life is now under the dictates of a terminal illness, nor if she believes that she will be dying sooner than expected ("expected" meaning either 120 or never). I do know that, although her interest in religious stuff has never dwindled, because of the recent mention of one-on-one Hospice spiritual counseling, the availability of which I continue to remind her at least once a week and, despite her initial interest, she's refused, lately, as "not quite what I'm looking for" and has characterized it as "sounds boring", the subject comes up fairly frequently, so it's on her mind. Sometimes she says outright, "I get enough spirituality as it is. I don't think I need personal counseling," or other declarations to that effect. However, perhaps this program is fulfilling a present need for her in her most preferred ways: It's upbeat, tantalizing and unashamedly all inclusive.
"Haven't we seen that one before?" she asked.
"Well, yes, but we haven't been recording these very long so if you want to watch more than one episode at a time, for awhile the repeats will be familiar ones."
"They should do something about that," she said.
I took this to mean that I should check to see if the series is available on DVD. The first four seasons are (I'm surprised the entire series isn't available).
We received the first of the DVDs yesterday and had an angel fest last night. It was fun, in some cases hilarious. We started from the very first episode of the very first season, which neither of us had ever seen. At the end of the episode my mother piped up, "So, that's where she got that car!" She was also attuned to the fact that the more familiar Angel of Death, Andrew, wasn't the original Angel of Death. She seemed perturbed by Andrew's absence so I asked her if she preferred him.
"I'm not sure," she said. "This one seems jauntier."
She was so into the series that, at 0130 this morning, it was hard for her to decide to go to bed instead of watching yet another episode. She was clearly becoming lack-of-sleep drunk, and it had been a looooong day for me. I reminded her that we own the videos so we can watch it "anytime", there's no chance of her missing any episodes. That did the trick.
Something interesting happened between the second and third episode. I noticed that her glass of tea had been sitting empty on her TV table for awhile and asked her if she'd like something else to drink.
Her eyes sparkled and she said, in what I mistook as a joke, "I think I'd like a glass of champagne."
I laughed. "You and me both! My goodness, you feel good tonight!"
She looked startled. "Don't we have any champagne?" she asked.
"Well, no. We haven't had any in the house for ages."
"We'll have to do something about that," she said.
Wow. I have only a vague memory of her taste for champagne, but I have vivid memories of her enjoyment of a glass of lightly carbonated rosé, now and then. There's no question but what I will incorporate champage and rosé into our evenings, now. I don't have to worry about moderating the amount because Mom savors her alcoholic indulgences and she's never been more than a social drinker. I had some concerns, though, about what to do about her evening medications, primarily her glipizide and her nightly lisinopril, so I called Hospice this morning and asked. The verdict: On the evenings I plan to serve her an alcoholic beverage (and, I'm planning, as well, to have occasional "wine and appetizer" dinner evenings, something she loves), forego the dessert. As well, on wine evenings, check her blood pressure before administering her lisinopril, which she takes just before bed. If the systolic is below 130, cut out the lisinopril.
Evening angels and a bit of the bubbly. Sounds intoxicating to me!
"I feel [better]...oh [much] better...
...I feel better and [set-ter] and briiiiiight..."
Quick, thorough, appropriate and very much appreciated response from "our" Hospice team. "We need to talk," is how Mom's Hospice RN initiated the agenda for our meeting today, which included, later, our Hospice Physician.
And we did. It was refreshing. I was able to place each of my fears on the table and each was fully addressed. Some of the details of the addresses were:
- My concern about my mother's inappropriateness for acute care management is not only duly noted and affirmed but I was assured that if there comes a time when Hospice is not necessary, detailed efforts will be made to make sure that the care to which she is referred is appropriate and comparable to Hospice.
- What usually determines whether Hospice is necessary is whether those services being used by a client can be duplicated through another avenue and whether those that can't be duplicated are necessary. There are some, like the weekly RN visits, that can't be duplicated in exactly the way they are delivered by Hospice (for instance, Home Health Care features similar visits but they are tied to specifics like wound treatment) but also may not be necessary if someone is stable, and well cared for, even if they're terminal. Because the quality of care my mother receives through me is so high and encompasses so much, this was a primary concern in my mother's case.
- My "lock and load" (love that description, courtesy of our Hospice RN) reaction to my concern regarding the possibility of Mom being discharged from Hospice because of the stability of her health profile was, while understandable, considering my prior experience with the medical-industrial complex, premature in the context of Hospice management. It is our Hospice's belief and practice to encourage patients and caregivers/family/relatives, whomever, to approach them immediately, directly and honestly with all concerns, no matter what. Mind you, I've heard this in the past in different medical arenas, done this and been discouraged by being ignored, slighted and/or off-fended. It's rather like the reaction of an abused dog to being petted, our Hospice RN explained. I agree. I also now understand that it isn't necessary to expect the typical years-old response from Hospice that I'm used to getting from Medicine in General.
- Our Hospice doesn't have a cap problem. However, they also aren't interested in being accused of Medicare fraud, which is why they are so careful to continually reevaluate their clients on schedule and carefully examine borderline cases.
- Finally, turns out, much to my surprise, my mother is actually registering yet another decline indicator. If the discharge records from the rehab center are even close to correct, she's losing weight. Officially, she's lost 20 pounds in two months. I doubt this, as does the Hospice RN. The RN nurse had her step on the scale three times to confirm her weight, in comparison with her discharge weight two months and a week ago. I even encouraged a fourth weighing, but the RN wisely cut off the weighings at three. The doubt is due to the method used to weigh my mother when the rehab facility discharged her: She was weighed on a scale in her wheelchair and the weight of the wheelchair was subtracted. Now, I never saw her out of her wheelchair during either her entry weighing or her exit weighing, so the chair weight was probably estimated and inaccurate. However, for the following reasons, it is likely that she has lost some weight, even though I'm not skilled at detecting it:
- Something I mentioned to our Hospice RN about a month ago, a blouse that was tight on my mother when she was in the rehab facility, so tight that, even though it was a favorite blouse of hers, I stopped using it in her rehab wardrobe because I was afraid it would constrict her movement during PT, was, a month ago, loose, and remains so.
- The Hospice Physician informed me that easy blood sugar control accompanies loss of weight, so it's possible that not only is my mother's tumor eating some of the sugar she gets, since she's losing weight her body is going to appropriate sugar better.
- Thirdly, the amount of my mother's incontinence has increased since she left rehab. It's not, actually, that her lack of awareness of the necessity to urinate has increased, as that has been very low if not completely eradicated for a very long time. It's that she's not holding onto fluid as well as she used to, despite the amount of electrolytes she receives in her diet. It is more of a challenge, now, to keep her hydrated and more of a challenge to keep her dry during the day. When she was released from rehab I could count on one Depend in the morning and two in the afternoon keeping her dry. I could also count on two Depends during her nap and two plus an additional pad keeping her dry four out of seven nights during sleep. Now, it takes two Depends plus a pad with every day change to keep her from leaking through her clothes (much of the time; occasionally, during a change, her second Depend is dry, but this is very occasional), also to keep her from leaking through during her nap (in say, six out of seven naps) and three Depends plus an additional pad at night to ensure that four out of seven nights will be "dry sheet" nights.
- Something I didn't recall, as well, until after the Hospice Team left: When my mother "takes to her bed", she is no longer able to easily adjust into the middle of her bed (for comfort and safety). I've been encircling her hips with my arms and scooting her over for about a month and a half, now. I've noticed that over the last three weeks or so, the scooting has been easier...sometimes it's almost as though I'm putting no effort behind it. I attributed this to two circumstances:
- That I was becoming more proficient at this task, and;
- since I count down before I move her so I won't startle her, I figured she's probably "helping" a bit.
- My own supposition, as well: Could be that she is losing muscle mass over fat mass, in which case it would probably be harder to detect by sight on a day to day basis.
Anyway, I'm okay, now. My mother is, too. She's sleeping off her much too early rising this morning. I'm simmering some aromatic home made chicken soup that's practically a stew. It's raining, again. The Little Girl is snuggled against my rear underneath the couch, which is where she typically hides during storm weather. Mr. Man is curled on Mom's rocker in sleep, keeping the pillow warm for her. Death, no matter how near or far, has taken note that when It wishes to greet my mother, It must be resplendent in It's best bib and tucker, ready for the ballroom. All's right with the world.
I purchased a weight scale, last night...
...for my mother at the urging of Hospice, to track her weight through this period. It is typical for cancer patients who are dying of the disease to lose weight as the disease develops. So far, my mother probably hasn't been losing weight. The Hospice RN, for the last three weeks has been measuring her bicep to determine if there has been any weight loss, since we didn't have a weight scale. Between the first and third measurements, she appeared to have gained a little weight, according the measurements. This doesn't surprise me. In order to keep her blood sugar from dropping below normal without eliminating one or all of the two 10 mg glipizide tablets she takes for blood glucose control (and which are still necessary; her diabetes is still operating, even though it's becoming easier to control) I've been adding desserts to her evening meal. In the way of experimentation, an experiment which surely pleased my mother, for three days during our Stat Vacation I even added her favorite sweet rolls to her breakfast while eliminating her morning OJ, substituting her preferred watered down instant decaf coffee. Although I didn't take stats until the evening of the day after the last sweet roll was eaten, then resumed full stating in the morning following No More Sweet Rolls Day, from those two stats I could tell her blood glucose was having a good time. Not a great time...I doubt that she rarely, if ever, went well over 200. But, it had a good enough time.
The problem with expected weight loss is that my mother rarely loses her appetite when very ill. She continues to eat heartily; she just vomits in the middle of the night or a few hours after eating a meal, whichever comes first. Since 2004 we've had a PRN prescription of metaclopramide to deal with this problem when it occurs and it works beautifully. I'm also sensitive enough, now, to the conditions which may initiate vomiting so that I can often accurately prefigure that this might happen and get the metaclopramide going before the first time she vomits. So, as long as the metaclopramide works (and, it may stop working when she becomes very ill), she probably will not lose weight.
It's funny...in a conversation with someone last night in which the discussion up for grabs was my mother's suitability for hospice, I mentioned that I take such excellent care of my mother that "she will thrive on her death bed". This doesn't mean she won't die, or even, necessarily, that she'll die later than predicted. What it means is that her quality of life will be very high right to the end and death will, truly, have to dance her out of this life in order to tempt her into The Great Beyond. This is good. This is how her life has been, in her mind. This is how her death should be, if it is at all possible, and my intention is to work toward this goal. It's not a matter of keeping her alive...it's a matter of seeing to it that the death that suits her has a chance to happen. Although Final Gifts makes it clear that my mother's death preference doesn't often happen (as far as I can recall, "a good death", in that book, always meant a decline in quality of life toward the end, taken as the signal that death is near), it also asserts the power of the individual to design one's own death. I suspect that when the caregiver and the dying one are working in concert to accomplish this, even more power is available for individual death design. At any rate, we're certainly in the pipeline to learn whether this is true.
Here's a salute to death in life...a salute to death as life. Perhaps it's possible that if we befriend death as we have befriend life, death befriends us, as well.
One sad note: A few months before my mother was diagnosed with lung cancer, the sister of a very dear local friend of mine (who is probably about 15 years older than me, thus, her sister, although younger than my mother, was probably much older than me, somewhere between my age and my mother's age) was also diagnosed with lung cancer. The cancer had fully metastasized before it was discovered. Nonetheless, the sister decided on a full course of chemotherapy and radiation in an attempt to stay the cancer. Over the last few months, in some conversations with my friend, she said she wished that her sister had decided against treatment, as she was clearly the worse off for it. She was in no pain and no discomfort prior to therapy. She experienced much pain and much discomfort afterward. My friend often expressed her feeling that a "no treat" course was definitely best for my mother. I just learned this morning that her sister died recently. Although her death saddens me, I'm philosophical about that part. I'm not so philosophical about contemplating what her experience of the rest of her life might have been like had she not opted for aggressive cancer treatment. I, too, am grateful that we chose a "no treat" course for my mother. All things considered, it is the right course. Unless I'm completely missing my mark on this, I think this choice, too, will allow her death to be the "right" death.
I'd better figure out how this weight scale works before it's time to awaken my mother - early, today, for her.
Well, I didn't do the "conversation" thing.
After sleeping on it and thinking about it, I realized I wanted everything I had to say in writing, it could be referenced as my mother is being evaluated. I faxed it off early this afternoon. It included pretty much what I've written here and information from Life After Death Sentencing, for the last week. Bless my loquacious heart, it went on for a little over four pages. Without repetition, as far as I can tell. Turns out, the Hospice Medical Director, to whom it was addressed (I addressed it, as well, to all who are involved in my mother's care), is off on Mondays. I think she told me that once before. That's fine. This isn't a decision that's going to be made immediately.
I was so grateful to "The Hospice Guy" who writes Hospice Blog that I dashed off a note to him yesterday thanking him for the calming and clarifying perspective his blog gave me. He returned the note saying that it has been his intention to provide information on the business side of hospice care for clients and their families, as well as acting as a sounding board for hospice professionals. I can tell you, I am so glad that blog is out there. Learning about the business side of any service is always a good idea. It puts things in a realistic light. The perspective of this blog is unusually balanced, complete and low key. If you're involved with hospice or are expecting hospice care for a loved one, good idea to visit this site, just to get an idea of what goes into providing this kind of service. Trust me, it's not scary. If anything, it takes the fear out of the entire process by providing a forthright view of the business behind the service.
I know, I am waaaay behind on my intentions for posting, here. It's so easy, these days, for me to accidentally lose control of our life and find it leading me rather than us leading it. You'd think, with all the time Mom sleeps, I'd have plenty of time to get everything done and sit back and journal. Think again. Right now, just about everything is in some state of neglect. But, you know, I'm cruising. So's Mom.
Well, I'm feeling a bit more hopeful...
...primarily because, this morning, I've been reading Hospice Blog more thoroughly, particularly the 73 posts labeled "Medicare". Rather than compose a written defense, immediately, I've decided that it would be better to have a conversation with the Medical Director (she and I work amazingly easily and successfully together) about all this before I fly off the handle and present an hysterically, freaked, multi-paged document over their fax machine. My mother, after all, is a cancer patient and, when qualified for hospice, her condition was such that she could easily have been said to have six months or less. It is not that she has improved, or that she's in remission, I'm sure, it is that she is in an environment (our home) and under the type of care (including mine and Hospice's) that agrees so completely with her that she is able to shuffle herself through each day with the assumption that she'll be able to shuffle herself through tomorrow, as well. And, she does.
So, for my own purpose, I want to list a few evidences that, although her decline is so slow as to be imperceptible during the hour a week when the Hospice RN sees her, it is still evident. I will run this list by her Hospice to see if it makes any difference:
- In the last month she has been less inclined to sit herself up in bed on her own. Figuring that she arises from bed twice a day, in a week I'd say that she depends on me to raise her up into a sitting position 10 out of 14 times a week.
- I believe her sleep quotient is increasing. This is why I've begun to note exactly when she settles into bed and exactly when she arises over at The Dailies.
- When she left the rehab facility on 6/29/08 she still had the energy to clean her arms, as well as her face, when we bathed her. A little over a month ago she found it increasingly difficult to clean her arms, saying that she didn't have the energy to complete them. After a couple of days, I took over this part of bathing without question or cajoling for her to continue trying. It was obvious that doing this on her own was beyond her energy capability.
- Over the last few weeks I've noticed two curious developments which I learned, just a few days ago, while reading Self, Senility, and Alzheimer's Disease in Modern America: A History, are aphasic and, in the author's father's case, the first was connected with his lung cancer (most likely because of metastasis to the brain: Forgetting the words for things, both nouns and verbs (which she has rarely done, previously, but has become a regular occurrence) and mixing up her left and her right. Actually, the nurse sort of observed this, although I'm sure it didn't make an impression on him. I noticed it immediately when it began happening because I mix up those two all the time. I have my whole life. And, my mother, up until the last few weeks, has taken much ironic pride in correcting me every time I reverse them. I, frankly, thought that perhaps it was due to her increased lack of energy, of late, affecting her dementia, which is always worse when she is tired or not feeling well. Seems it may be related to her lung cancer's development.
- Developments I've mentioned to the Hospice nurse include:
- What appears to be the bouncing of her hemoglobin. Considering that, regardless of whether her chronic anemia existed before her lung cancer (since we don't know how long she's had lung cancer) it is certainly in a very close relationship with it, now, and is no doubt being affected by it. I think I recorded, in one of these journals, within the last week, that I talked to the Hospice RN about doing a CBC/BMP blood draw, just to see how she's doing in this area and her kidney functions, not necessarily implying a prompt to take action.
- A persistent inability to clear her throat for several hours after she arises in the morning, which has been going on for about three weeks.
- Humming when she breathes, even when sitting and on 4/lpm O2...and it's not her usual "singing". I always check.
- Number of days when we use the wheel chair completely or partially to move her around the house have increased noticeably over the last two months that she's been on hospice. In many of these cases, she is convinced that she will be able to "walk" but, once she's on her feet, she finds it hard to impossible to move her feet without the fear of falling.
- Noticeably increasing usage of acetaminophen for what she describes as "stiffness". Considering her eccentric, incredibly high tolerance for pain, it is entirely likely that what she is describing as "stiffness" would, normally, by other people, be described as "pain".
- A significant decrease in available energy and flexibility such that, over the last two months, we've tried three times to get her into the truck for outings and she simply hasn't been able to negotiate this, even though I always choose her "best" days to try this, wheel her right up to the open truck door in the wheel chair and "help" her lift her legs with my arms. Up through her leg collapse on 5/14/08, she was able to negotiate this task, admittedly, with difficulty, but was doing it each week to see the hematologist.
- In the last three weeks, significant dry hacking when she lays down and when she arises, so much so that I've purchased a 10" wedge (we have a 7.5" wedge that she's been using) to raise her up a little more when she sleeps. I purchased in last Tuesday. It isn't always appropriate, but we've used it three out of the last five days, so far.
- Considering the declines that have occurred since her pneumonia diagnosis and the subsequent discovery of her lung cancer, I believe it is not unfair to assume that further declines are in the cards, even though they may be, at time, close to imperceptible, precisely because she has such a strong will, lives in such high spirits and is surrounded by circumstances that allow her exceedingly high comfort and quality of life.
- Although it is true that she doesn't seem to be losing weight (I'll be getting a scale, at the request of Hospice, before Tuesday in order to establish this) and her appetite remains sturdy, it's entirely possible that she will not lose her appetite on the usual schedule because, well, she loves good food, I make sure she gets good food and, frankly, now that her diabetes is so easy to control, she has more sweets in her life and it's possible that one of the few indications that she ever will have been in an "active dying phase" may be the necessity of prying a sweet roll from her cold, dead hands.
- Which reminds me, her diabetes continues to get easier and easier to control; her anemia continues to get harder and harder to control: Both signs that her tumor is thriving.
- Since her hospitalization, it is obvious that the days of 3/lpm when sitting and 4/lpm when moving and sleeping are gone. She is firmly in the 4/lpm sitting and 5/lpm when moving or sleeping range. Twice in the last week and a half she has ahd such trouble catching her breath after movement while sitting that I've given her an extra 45 minutes on 5/lpm just to help her settle down. One of these incidents was reported to the Hospice RN on the PRN meds sheet he requires of us each week. The other is on next week's sheet.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson