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 am finally reading Final Gifts.
Although I've had it for quite awhile, I was urged to read it by our assigned Hospice Nurse and decided it might be a good idea to pack that one under my belt in order to make sure that I wasn't continually questioned about whether I'd yet read it.
I started it last night. I've spent about three hours with it. I'm somewhat over halfway through. It's an easy book to read. I skipped the chapter about the stages of dying because I'm more than familiar with Kubler-Ross' work; I was enchanted by it when her first book about dying was published some decades ago and have followed her thoughts, including her own experience with terminality, her disputes with her own observations and theories and her subsequent apology for her reversal.
The reason I'm writing about my reading of this book before I'm finished? At the point where I am now I began to wonder whether there were any deaths of those with dementia in the book (other than, of course, the altered state of consciousness which appears prior to death). I scanned forward and discovered that none of the case studies describe people with any stage of dementia who are dying. One case study mentions a husband, displaying what I would class as Dementia-Lite, of one of the case studies. He wasn't the one dying, though.
It's hard for me not to wonder how all this information fits those who have dementia and are dying because of my experience with my mother. Mom has been living in Timelessness for some time. She spends much time in The Dead Zone; although, curiously, lately she hasn't, probably because of all the people who have surrounded her lately, all of whom she considers "visitors", including those who tended to her in all three facilities. It's possible that she has been spending time in The Dead Zone but those periods have fused with the visitors of her "real" life and she simply isn't talking about The Dead Zone visits, much. She certainly appears to move through a denial stage, evidenced by her assertion, some months ago, that she won't be dying. Put in the eccentric perspective of her life, though, I've considered for some of those months, that she isn't denying the possibility of death so much as acknowledging that death implies some sort of continuation...just as birth is a type of death but is actually a continuation.
The thing is, since my mother has, for some years, been living a life of expanded consciousness which covers an area similar (sometimes startlingly so) to the Near Death Awareness described in the book, I wonder if her experience is going to be somewhat different than what is described or if it will be an intensification of what we've been experiencing for years. I wonder if I will be able to distinguish between the reality that her vascular dementia has created for us and the dementia of her Near Death Awareness.
I imagine there is information "out there" that delineates the Near Death Awareness of those who have been demented for many years previous to death. This book makes an interesting point, here and there, as well, that sometimes Near Death Awareness begins "years" before death...which causes me to wonder if these authors have either missed the difference between dementia in life and dementia in Near Death Awareness or have fused the two and interpret even extended periods of dementia previous to death as Near Death Awareness.
My intention is to look for reports about the death experiences of those entrenched in dementia prior to an obvious "dying phase" (a phrase not taken from this book but from Hospice literature)...as time and my peculiar prioritizing permits, of course. If I come across anything I will surely report it here.
I'm taking a few "lessons" from this book: Specifically, the importance of awareness, observation and consideration regarding the companion's incorporation of the experiences of those in Near Death Awareness. Since I do that, anyway, I'm sure I won't have a problem with this but it never hurts to be reminded and to heighten one's alertness to "clues".
I will be finishing the book. I think it will be handy information to have on one of my brain shelves as our life together continues. My intention, though, is to live our life as I have been and remaining open, in my peculiar way, to what is going on with My Beloved Ancient One.
Oh, almost forgot to mention: There is another issue in the book that has caught my attention. It is that, fairly often, just previous to death, the Dying One will rally his or her strength and attempt to physically move, i.e., get out of bed, etc., will fall...and die. I consider this a possibility in my mother's case, as she has, on occasion, especially back in January, been provoked to mobility by some strong, internal impulse. She has fallen and could easily again fall. I also received reports from the "Sniff" that, a couple of times, she attempted to get out of bed in the middle of the night. So far, I think, these episodes, if at all related to Near Death Awareness, which is dubious, are a distant relation. But, considering that she is prone to such episodes, it's probably a good idea for me to keep an even more watchful eye on her, now.
Today is yet another visiting day. MPS and MPBIL are coming over early this afternoon with pizza for breakfast, which I expect will surely delight my mother and spur her to a noon arousal. Maybe, I'm thinking, if the weather remains balmy and calm, we might be able to get her in the wheel chair and take a tour of the yard. We haven't yet done that; partly because of the weather and partly because other activities press upon our time. I want to get her used to going outside a lot, as she has expressed an interest in this. I'm even thinking that walks (with her in the wheel chair) around our half wild neighborhood may be a possibility. We'll see. Anyway, I need to shower then rouse The Mom. Not that me showering before I have my daily sauna experience will do any actual good, but it should make me feel a little cleaner.
Okay, let's see...
...today is Friday. The MPS's and MPNC's visit ended yesterday. It went well, even though all of us except Mom wore ourselves out trying to keep up with everyone's hours, which meant no one except Mom slept much. I remain pleased that I repealed all my visit regulations; and remain convinced that this is no longer the time for those rules.
Obviously, this part of Mom's and my journey together is requiring more stamina from me, but I successfully passed the first (I write "first" because I'm expecting there will be others) personal doubt phase and have every reason to expect that I will pass through others successfully, too.
On Tuesday (I think it was Tuesday), we finally met with Mom's assigned Hospice nurse, who will apparently be visiting Mom every week, at least. When he called to make the appointment he mentioned that he wanted to see if Mom and he and I made a "good fit". I was pleased with his attitude and it looks like all three of us feel that we do. My only care concerns, at this point, surround the issue of comfort medication, particularly in regard to her breathing and the possibility of Mom's anxiety level increasing as a result of diminished breathing. His observations told me that she is probably already at a level which would cause anxiety in most people, and yet she isn't anxious about her breathing. At one point he asked me if she always breathes as quickly as she was breathing during the meeting. I focused on her breath rate and confirmed that it was pretty normal. He clued me that it was fairly high. This was the point at which he and I entered a discussion about using meds such as morphine derivatives, other opiates and synthetics which address anxiety to control breathing. I related the story of the breathing crisis in the hospital during her recovery from pneumonia, asserting that my presence relaxed her enough so that the Xanax, Ativan and/or Morphine that the doctor and nurse were suggesting weren't necessary. Our Hospice RN confirmed that someone whose body is "opiate innocent" (which described my mother) often reacts, "for a few days" in much the way I saw my mother react to the pneumonia and the small variety of psycho-pharmaceuticals that were sneaked into her body when I wasn't looking (but was trying hard to look): Slack jaw, haziness, inability of her brain to negotiate the distance between thought and speech. He talked, some, about experiences he'd had with people who had been adamant against such medications yet had finally acquiesced. His recollections were, of course, positive. I said (and I meant) that I trusted his experience and would carefully consider his judgment on this issue. I am, too, reserving my own judgment, mainly because no matter how hard it appears as though my mother is working to breathe, if she is not showing any anxiety then she's not anxious and doesn't need to have anxiety relieved. As well, by her own admission, she'd rather be alert than out of it. Frankly, I'd also rather have her alert. Regarding my wishes in matters pertaining to this part of my mother's journey, the Hospice RN and I had an abbreviated discussion about the difference between what I want and what my mother wants. In context, which was treating her anemia, it made sense that my desires should take a back seat. After the RN left, though, and I further considered the matter, I realized that I need to be careful not to allow my desires to take such a back seat that this part of our lives becomes so difficult for me that I despair of being able to accompany my mother all the way to the end. She and I are bonded so intimately that, in some cases, the line between her desires and mine is blurred almost beyond recognition. It is this blurring that has gotten us as far as we are, now, and in fine shape, I might add. Thus, even as this is her death, it is mine, as well, especially considering that it will, indeed, be the death of an identity I've forged over the last 14 years. The two deaths are, of course, of a different character, but they both not only deserve but require the respect of Hospice people. My mother is alive, now, in large part, because of this blurring of my desires and hers on both of our behalves. It makes no sense to change this course...in fact, it would, I think, completely obscure the legitimacy and the extraordinary utility of our shared life if we suddenly change course and make this "all about her". My mother is here, I believe, because it has been "all about her and me". This should continue until the end of her life and my role in it. It may not be the way its usually done but, then, she and I have not been traveling the normal Caregiving Road.
Am I making sense? I feel as though I haven't quite explained myself and my preferred approach to this period in my mother's and my life. I'll probably revisit this.
Reconnaissance cough to my right and down the hall. Yes, we are fully back into Mom's normal schedule; which is, of course, my normal schedule, as well. More...
Hospice and the Dying Game
Hospice, of course, operates within the purview of The Dying Game. This shouldn't come as a surprise to anyone. That's the purpose of the organization. As the Hospice Movement has grown, it has become more inclusive in its definition of what constitutes The Dying Game. This is also appropriate. My mother, for instance, is no more obviously ensconced in dying than she was previous to her lung cancer diagnosis. Hospice, however, has helped to identify a slow but steady decline toward an obvious death and embraces this definition on my mother's behalf. Although I find them interesting, I am not offended by the frequent "warnings", voiced by almost every Hospice employee with whom I've come into contact, that my mother will be evaluated on a regular basis to determine whether Hospice is appropriate to her. Resources are limited, after all, and, as many of these employees have said, "Sometimes people get better." I doubt that my mother's cancer is going to go into remission, considering that it's been around for so long and has continued to steadily grow, but I make allowances for the possibility that its growth may very well be so slow as to not require Hospice oversight during periods of time. I am, it is true, confused about how long my mother's journey toward death will take and why she seems not quite enough disabled, according to Hospice's definition, by this journey, but I expect all these confusions to sort themselves out in time. I am not confused about one aspect of Hospice, though: The party line is that Hospice is devoted to "quality of life" issues. In fact, and I do not write this as a condemnation, it is devoted to quality of death issues. I don't have a problem with this purpose. Before such organizations devoted themselves to this matter, death was not handled nearly as well and, in some cases, wasn't even allowed. Someone had to take up the slack. Thank the gods someone did.
On July 1st we were visited by the physician who is overseeing my mother's Hospice journey. I was completely in agreement with almost everything she said. As usual, when listening I think slowly, if at all, thus I didn't respond to the following while the physician was here: Toward the end of our conversation, which included Mom, while the physician and I were discussing treatments she currently receives for her various chronic conditions, the subject of Mom's chronic anemia surfaced. I was meticulous in covering the previous blood draw schedule Mom's former PCP had established in order to keep an eye on her hemoglobin. I stressed that, at this point, if it dropped precipitously, the only recommended treatment would be a blood transfusion. I mentioned that, with luck, this won't happen, or, maybe, just once more. In the meantime, I continued, I felt that, while Mom seemed to be looking good and her energy was up, perhaps a CBC/BMP (which is necessary to keep an eye on kidney functions, which are related in a curious back and forth manner to her chronic anemia) could be put off until the end of July (the last being done on June 12, 2008, at the rehab facility).
Although I can't exactly quote the physician, her reaction was as follows: As time goes by and my mother's decline becomes more obvious, perhaps monitoring and/or treating her chronic anemia with anything more than iron supplements could be dispensed.
I didn't react to this immediately, I just took it in.
As days passed and I considered what she'd said, I also wondered about alertness and its relationship to one's personal death experience. If my mother falls victim to pain, especially overwhelming pain, for instance, it would be appropriate to medicate her for this, thus also decreasing her ability to be alert in the moments before death; heavy duty pain medication might even cancel out the possibility of the legendary "moments of clarity" which we are told often immediately precede death. If she falls into a coma as a result of advancing illness, well, alertness is questionable under these circumstances. Considering these aspects of death led me to wonder, though, how much alertness Hospice would entertain as Mom moves closer toward death. For instance: Without oxygen, my mother would have been dead a long time ago, I'm sure. But, this living aid hasn't been questioned, not only because it keeps her alive but it also enhances her alertness. Treating her Type 2 Diabetes enhances her alertness, as well. So does treating her anemia. I doubt that my mother will be weaned from oxygen during her final days. To my knowledge, which may be incorrect, even if someone refuses intubation and/or breathing machines, they remain on oxygen in order to control the possibility of anxiety (which may still enter into the picture, even on oxygen therapy). If her appetite declines prior to death it would be appropriate to cut back on her glipizide, of course. This, however, is also appropriate now. Treating her anemia over the last few years has surely, as well, kept my mother alive, and more alert than she'd be without treatment. Is it possible though, I wondered, that this particular treatment would be considered inappropriate by Hospice, perhaps even considered to be standing in the way of an "enhanced" death?
After considering these issues for some days I decided to ask my mother how alert she would like to be through her death. I was specific with the question. I included wherefores such as, "in the event of coma," "in the event of overwhelming pain from which you would want to be medicated," and "in the even of confusion and anxiety which you would want alleviated." I stressed that we have no way of knowing, at the moment, what physical condition she'll be in just previous to her death, nor what physical irregularities will be at play during this time. "Considering all these things," I said, and I could tell she was, indeed, considering them, "if you do not die in your sleep (and, I added, I question whether anyone really "dies in their sleep" or, whether, they awaken just previous to a terminal event), do you want to be alert and aware of what is happening to you in the moments previous to and during your death?"
Her response was unequivocal. "Oh, yes," she said. "I want to be aware of what's happening, if possible. When the time comes, it'll be a new experience. Why wouldn't I want to be aware of what's going on?"
I expected that this would be her preference. I didn't, though, expect how vociferously she would prefer alertness and awareness during death to being out of it.
Now, I'm wondering, how far will Hospice go to honor my mother's preference for alertness and awareness at the point of death? Even if it means that she may live a few hours or days longer than she would otherwise, would Hospice allow a continuation of anemia treatment, including a transfusion or two, if this would ensure that my mother would be at her alert and aware best while she is dying? Would Hospice consider that, for my mother, an "enhanced death" would mean treating her to keep her as alert as possible so that she is able to take advantage of some sort of ability to be aware of her death experience? Has Hospice yet considered these possibilities? Will I have to fight to keep my mother as alert as she'd like through her death?
I know, it's maddening. More questions than answers. I will, of course, as I'm able, be posing this puzzle with Hospice staff. I'll certainly report back on their responses. One such opportunity will probably be soon, since we have yet to meet the Hospice nurse who has been assigned to us. He's been on vacation.
If you have an interest in this subject, stay tuned.
Yesterday both Mom and I had a bad day.
The cause of my bad day was exhaustion caused by hyper-alertness. I haven't yet been able to settle myself to a point where I don't automatically and suddenly abandon sleep in response to every little movement in the house. This is taking its toll. Yesterday I was so tired that, even after taking a feverish nap during Mom's nap, I felt like I still needed a nap.
I'm not sure what was the cause of Mom's bad day. Could have been an accumulation of things, including:
- Bad day for tumors;
- She is clearly becoming pissed off with the weather, which, while cool, is muggy and gray (my favorite, of course) and rainy in the afternoon;
- Although I didn't think my exhaustion was apparent in the morning, it may have been to her and she could have been reacting to my bad day, as well.
Most of today will be spent getting ready for company. Can't remember whether I've mentioned it, but MPS and MPNC are visiting tomorrow through Thursday. I'm not at all stressed about this, which is wonderful. Somehow, abandoning all my previous Visiting Rules has completely drained stress from visits. Funny how that works: When rules aren't appropriate, anymore, abandoning them eases the situations to which they previously applied.
Gotta check my lists. Oh, and I have a promised post to write. Not sure whether it will be long or short. This is a good time to do it, though.
Sooner, rather than...
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson