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.
Decadent night, decadent day
Despite a few movement kinks upon arising both times (initially and after her nap) yesterday, Mom was raring to go once everything had worked itself out. During the first part of her day we decided to break out a new game MPS had suggested we might like, Finish Lines. Was MPS ever right! This game was made for Mom (and me, I might add). I won, but only because I hit a space that dictated me to take one of Mom's tiles. She was not happy!
We've been getting closer and closer to a truly decadent night over the last few days and finally hit the target last night. We retired a little after 0300 this morning and that's only because I could no longer keep my eyes propped open. Mom was thoroughly involved in a long run of Golden Girls episodes on some cable channel. She even directed me, "Go on to bed...I can take care of myself." And, of course, she couldn't understand why I couldn't let this happen. Throughout the evening we also got in some reading and watched, with heightened curiosity, a showing of Grand Hotel. I was particularly pleased, last night, that we switched our cable subscription to a DVR box. Mom was rabid about discussing almost every aspect of the movie.
Later we ploughed through family death stories, something we haven't done in a long time. I think this was provoked by a discussion we'd had earlier in the day about Mom's lung cancer. I can't remember how it started but, after breakfast and before breaking out Finish Lines we were talking about her breathing because she was musing about some of the difficulties she can remember having, and I mentioned lung cancer. As usual, she was surprised to yet again discover that she has lung cancer, so I went through a careful, thorough explanation about how this conclusion had been reached, what effect it has had on her life over the last few years and how we had adjusted to it without knowing it existed. She was not at all appreciative of the knowledge, this time, even though I was very careful and very upbeat regarding everything in connection with it. She seemed to forget about it while we were playing the game. When she had difficulty arising from her nap, though, and there seemed to be no physical cause, I teased her that she had gotten her nose out of joint from all the information I gave her about her lung cancer, its effects so far and the variety of prognoses attached to it. "Do you remember our discussion?" I asked.
"Oh, I remember it, all right. I still don't think you know what you're talking about."
"Okay. Well, that's fine. Maybe I don't. In the meantime, you know, life is what you make of it. I mean, my god, woman! Look at you! 91 and still..."
"...going strong!" she interrupted.
Although I decided to pamper her with a wheel chair ride to the living room after this conversation, shortly after dinner she was raring to go. One way or another, yet again, she came to grips with the information about her lung cancer and decided to deal with it in her own feisty way.
So, I attempted to rouse her at 1400 today, an hour shy of her 12-hour-sleep-mark, but she wasn't having any. "I'm not done," she said.
I'm hoping that maybe she wore herself out a bit from yesterday and we'll be retiring at somewhat earlier than 0300 tomorrow morning but you just never know. I'm fairly well rested...after my first awakening at 0830 I shook my head and decided to try to get a little more sleep, just in case. I finally arose a few minutes before noon. So, if she decides that another decadent night is in order, at least I'll be prepared for it. I'm grinning to myself. Although I tend to be thrown out of alignment by decadent nights, I'm pleased that Mom still has them in her.
Better get everything ready for a second try.
I want to alert my (admittedly tiny) audience to a VIPost...
...the most recent (as of this date) at The Tangled Neuron by Mona. The immediately previous link will take you to the VIPost. The post introduces a book, The Alzheimer's Action Plan, which, among other highlights, encourages and instructs readers, particularly Adult Children of those with Alzheimer's, on how to develop an interdisciplinary approach to caring for their care recipient.
After reading about the book I realized that such an interdisciplinary approach actually exists, on a limited scale, within this country's medical system at this time: It's called "Hospice". No, I'm not recommending that people with Alzheimer's be escorted through the Hospice system. What I'm recommending is that the entire medical/industrial complex in this country reorganize itself along the lines of Hospice's interdisciplinary approach. Let me explain what I mean.
After only a few days of dealing with Hospice on my mother's behalf I couldn't help but wish that her entire medical experience for the last several years had been handled in much the way Hospice is now handling her. Although I'm pleased with how we've managed, it's been grueling and it would have helped, immensely, if the medical system in place to treat my mother prior to becoming a Hospice client had been more available to us. Once in awhile, specifically during hospital visits, we would be treated to a social worker here or a recommendation (in most cases, inappropriate) to a social service agency there but, overall, unless I had the time and, even, the idea to scour communities for extras, her experience has been almost exclusively one of "treat and release". As well, I found myself in the peculiar position of not only knowing my mother's medical history in detail but becoming her who-knows-how-knowledgeable medical advocate, constantly upchucking the same bits of her medical history that, while existing in voluminous medical records, were generally ignored, because throughout the intensive episodes in her medical experience she has been passed from physician to physician, each of which comes to us with a complete lack of familiarity with her medical history and, sometimes, with a lack of detail of her "current" medical crisis. As regular readers know, it's been maddening, and frequently dangerous for my mother.
Until Mom (and I) became involved with Hospice, I had no idea that a medical sub-system existed "out there" that includes an interdisciplinary approach. Each client has:
- a designated field social worker who visits fairly regularly;
- a designated oversight social worker who organizes and keeps tabs on all aspects of care and handles Durable Medical Equipment;
- a designated doctor who freely consults other physicians in the area, if necessary;
- a designated RN who visits weekly or more, depending on what is necessary, is on 24 hour call, is experienced in the requirements of the care of the terminally ill and performs much of the medical care and evaluation;
- a spiritual counselor on call if needed;
- a raft of volunteers who are available to offer help and assistance to the caregiver as well as a wide range of social company for the care recipient;
- a trained physical therapist for regular evaluations and interventions, if necessary;
- trainers to teach the caregiver new skills, if necessary.
The more involved we become with this type of medical care, the more I wonder Why isn't ALL medical care like this????
It's not uncommon for me to hear complaints about Hospice, although it's also not uncommon for me to hear compliments. From my experience, I think the complaints are generated because most of us, here in the US, are not used to having so many medical resources obviously at our disposal and aren't sure how to select the ones we need and put a hold on those we don't. I've noticed that a lot of people who have complaints feel that they and their relatives were "overmanaged" in their Hospice experience. I see how this can happen if one doesn't understand or trust that one can pick and chose, not only services but the extent of each service and people who are delivering them. At the beginning of our Hospice experience the visits from the various "departments" of Hospice were frequent and thorough. Luckily, my understanding of what was happening was also thorough, through the oversight social worker, so I knew that all these visits were primarily to introduce us to available services and, secondarily, to gather detailed information about my mother, myself as her caregiver and the care systems (or lack thereof) that we already have in place. As well, at least our Hospice company has been, from the beginning, overtly concerned that we take what we need and refuse what we don't. Our RN, for instance, has been so meticulous about reminding us of his concern about a "good fit" between him and us that, last week, I figured I'd better ask him if he thinks the fit isn't good for him; a hit bird will flutter, you know. He was astonished, and expressed gratitude, that I asked...but confirmed that he is comfortable with us, as we are with him. As well, once on Hospice, people aren't "stuck" with Hospice. One can sign off and go back to "regular medicine" at any time.
Probably the other major complaint people have is what is perceived as the "lack" of medical care...which, frankly, is the point of Hospice. This is where I think the system would require tweaks in order to serve other medical clients. Overall, though, why shouldn't all medical systems be imbued with this interdisciplinary approach, along with the requirement that the system approach the client and make themselves known and available, rather than the other way around?
I'm reluctant to state that my mother would, at this time, be better off health-wise if she'd been cared for under systems similar to hospice. It's hard to say, as aging will take its toll regardless of how one tries to manage it. However, I can absolutely state that I would have been a lot better off if such a system had been in place. I'm sure that I would not have spent nearly as much time in The Country of the Overwhelmed if, all along the path of this incredible journey my mother and I have been taking, there had been frequent way stations where people who know what we've passed as well as the upcoming terrain were directing us to brief stops to offer information and help along the way.
Anyway, read Mona's post, even if you aren't involved with someone who has Alzheimer's. Consider that what the above mentioned book is proposing should be available throughout our medical system. Know that there is already a template in existence, under the name of "Hospice", for the type of care suggested. Think about this before you go to the polls this November. People, all people, sicken (including injuries) and require medical care in the context of their lives. Our medical system, though, tends to act as though illness and debility are disconnected from one's life; or that the connection is strictly "a personal matter". A cursory look at our country's health standing among other countries, alone, shows that health care is nothing if not political.
Almost time to awaken my Ancient One.
Just a few quick notes before I finally hit the sack.
Yep, we're still tripping the dark fantastic. I'm hoping we'll be able to get ourselves back to relatively decent hours before Tuesday, when the Hospice RN shows up between 1300 and 1400. Mom and I talked about it and agreed it would probably be a good idea to be awake and dressed to greet the man when he arrives.
The heat was finally broken by a glorious rain and thunder storm this evening. Although the mugginess continues, when it's cool that's not a problem for me. The only problem it creates for my mother is that she prefers dry weather. Regardless, even she agreed that the cool breeze coming in the windows when I turned off the a/c as the rain approached was "nice". That's about as good as she'll ever give a rain storm or cool weather. We didn't have her birthday dinner today. From looking at the weather, we're planning it for later this week when the temperature drops into the low 80's and it's rained and cooled a few more days. Then, the house should be ready for stove/oven duty.
Last quick note: I finally figured out what's been plaguing my mother regarding her increasing reluctance and ability to move around under "her own steam" (relatively speaking: I haven't been paying attention to the fact that she's been sweating at night and during her naps, even though I've noticed it, and haven't been increasing her fluid intake when she's up. This morning when I realized this I immediately took steps to alleviate the situation and she's fine and moving around on her own, now...as reported in this most recent post over at the new movement journal. I'm so glad she remains here at home. I don't even want to imagine what wouldn't have happened if she'd been dehydrating at a "sniff". Everyone would have probably decided, with very little observation, especially since she's "on hospice" that she was on the way out, would have made the assumption that her dehydration and lack of thirst was an indication of this (even though she's lacked reliable thirst for more than a few years, now), done nothing except "make her comfortable", probably with rubberizing drugs, and, sure enough, within a week or so the prophecy would have been fulfilled.
Which reminds me...I want to write about my thoughts on "comfort care" and "palliation". But, I'm dragging, here, now...and I've got some errands to run when I awaken...assuming that I awaken an hour or so before it's time to awaken Mom (fingers crossed). Time for bed.
I blew it yesterday.
The day started out well. I was in an excellent mood. Just before I awoke Mom her third bouquet of flowers arrived, which only increased my good feelings about Mom's birthday day. Rousing went well, even though Mom was dragged out by the heat. It was during bathing when I, literally, lost my cool.
When I awoke, much earlier in the day than Mom, I was damp from the overnight mugginess and took a shower, which did much to freshen me. During Mom's bath, though, all that steamed away. Keep in mind that, in order to make sure that my naked Ancient One is completely comfortable on the stool while being bathed I see to it that the bathroom is very warm; probably high 80's or low 90's. The steam from bathing also helps increase the heat. Although this environment is always a "close" one for me, over the years I've gotten used to the atmosphere and the attendant sweating. I usually (if I can, sometimes I can't, like for instance, lately, when the Hospice RN is scheduled to visit) delay my daily shower until after Mom's breakfast in order to freshen myself because, from way back before I can even remember, I've always been a profuse sweater, regardless of the humidity. I've, frankly, even liked that this is true of me; it keeps me cool all the time. Yesterday, though, in the bathroom I could have filled buckets with my sweat. I had to wipe the linoleum floor around me at least three times that I remember in order to keep myself from slipping. I exited the bathroom several times in order to wipe the sweat off my face and arms and cool off for a moment before continuing with Mom's bath. The "closer" the bathroom became, for me, the more ornery I became, especially as I contemplated taking a second shower after Mom's breakfast and realizing that I would probably sweat through the shower and the cold shower I always take afterwards during the summer (which I did). While we were bathing Mom's groin, which involves her standing for about two to three minutes, when she had difficulty and needed to sit down halfway through the procedure (which is neither common nor unusual), I snapped. First I went after her for not "snapping to" the way she usually does. Then I started in on the folly of birthday celebrations, especially those in August, and announced that "I am done with birthdays or celebrations of any kind for you and me".
"Well, I like birthdays, I'm having a wonderful day, today, so I'll just go ahead and celebrate without you!" Mom spat back.
It was at this point that I looked at my mother. She was looking at me wide-eyed with shock and disgust. That shut me up. Unfortunately, it shut me into my usual bad mood stoniness, in which I remained for most of the rest of the day. I was so locked in my discomfort that I even forgot to bring out her birthday presents. I made absolutely no effort toward a nutritious, let alone celebratory, dinner. When I told Mom that I had no idea what to serve her and added nastily, "...'guess [we'll] go eat some worms'," she responded that she'd rather have pie. So, that's what she had for dinner. She was thrilled. I felt like an ass.
Although I don't attach sentiment to "last" celebrations, I do, for my mother's sake, attach a certain significance to celebrations in general, especially her birthday because she is not only "Mrs. Christmas", she is "Mrs. Birthday". I'm sure I was laboring (gleefully, earlier in the day) under some internal pressure to create a suitably celebratory day for her. I failed in the carry through, though.
All I can say is, it's a good thing that I attach no sentiment to "last birthdays" and such. If I did I'd be feeling even worse, today, than I do.
Yes, today is a bit cooler. There is more promise of rain today than there was yesterday, which lightens my mood a bit. I'm not looking forward to our bathing session. I expect it to be at least as insufferable as yesterday's for me. At least, today, I decided to wait on showering so that I don't annoy myself by taking two ineffective showers, today. I can already tell that if I have to heat up the oven and stove top and cook over them I'll probably lose it, again, so my plan is to put that off for another day, or two; which will be fine with Mom. She likes nothing better than extended celebrations, especially for birthdays and the chances are excellent that we'll have fast food for dinner, which we probably should have had yesterday and which she loves. So, overall, I think I have a better handle on myself today.
You know, it's funny. During the last Hospice Social Worker visit he asked my mother (although I can't remember what prompted him) an almost rhetorical question along the lines of, "So, you and your daughter [meaning me] are a lot alike?"
"Oh no," my mother said. "We're quite different, she and I."
I remember laughing with delight at her response. "That's true," I said. "We're very different!"
Mom nodded vigorously.
I guess the assumption is that the sibling who "ends up" taking care of the Ancient One(s) in the family is probably very like the Ancient One(s). Bad assumption. I can't think of a single instance in which this would apply to any of the caregivers I know, either in "real life" or online. I think, if there is anything that "family caregivers" share it is, simply, for whatever reason (and there are multitudes of reasons), being the least likely in the family to refuse to do this. Many families, in fact, don't have anyone who "can't refuse", because the task looks so onerous, risky and life altering, at least in this society in which we currently live. This perception is accurate, primarily because little reasonable help is available and our society more often tells us not to do it than to do it.
In Mom's and my case it is our differences, I think, that make us so compatible and allows the task to be not quite so onerous as "all that". My mother doesn't flinch when I get out of hand...she bristles. I don't selflessly "take it" when the demands of the job threaten to overwhelm me...I complain and figure out ways to cut back on the day's (or the hour's) dictates. Neither of us is afraid to say whatever we think to each other, nor is either of us afraid to sound stupid and petty in the presence of the other. Neither of us is afraid to attempt to tease or argue the other out of a bad mood. Both of us can take it when the teasing or arguing doesn't work. Somehow, we know everything will pass and the one or the other of us will feel and act better soon. In some ways our living together has broadened our characters. She is more likely to say what she thinks than she ever was. I am more likely to laugh at myself than I ever was.
Vive la difference. It works for us. Yesterday is over. Today is a new day.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson