"You are not a well woman."
    To which my mother responded, without affect and without resignation, "I know."
    Yesterday evening I awoke my mother around 2100 from a nap of a little over two hours. Her "morning", which started around 1300 and was slow as molasses (I didn't manage to take her blood glucose, which I typically take in her morning when she's sitting on the edge of her bed, until almost 1400). She didn't resist awakening, she just roused veeeerrrry sloooowly. Movement was iffy at best, as recorded here, although she was game and surprised when her right knee, in particular, didn't want to work to her advantage. When I awoke her in the evening she truly seemed "under" our monsoon "weather", in a distinct malaise. When I asked her how she felt she responded with a sotto dramatic moan and a half-hearted smile.
    "Do you feel bad?" I asked.
    She hedged. "Well, I don't feel altogether good."
    "Can you tell me where you feel bad?"
    "Not really."
    "Are you in pain?" I've learned to ask this question more frequently through observing the Hospice nurses.
    "Oh. No," she said.
    "But you just don't feel good."
    "No."
    That's when I voiced the sentence which has become the title of this post, preceded by, "Well, that's okay. The weather's not your favorite, although it's mine. But,..."
    When people are here there is a lot of talk around her with attempts to include her, definitely in earshot, about her health, her lung cancer, hospice, etc. It's been this way since we came home. I still have no idea whether she understands that she has lung cancer and that her health will continue to fail. Considering that I also point out, when she and I are talking about her health, that she'll have "good days" and "bad days", and usually manage to label any particular day or period as mostly "good" or "bad", according to how it's going, I'm sure she understands that she's living with a variety of chronic frailties which won't be "healing". But, we've been living this way for some years, now, with no change in her perception of her life, so whether she considers herself in the grips of a terminal illness, other than simply being on the nether end of a long life, I can't say.
    Yesterday evening, though, before she roused, sat up and began the awake part of her evening, it occurred to me that maybe this episode was somehow "different".
    Turns out, it actually wasn't. Yesterday was just a slow, under the weather day for her. After I assured her that maybe a wheel chair evening would be in order, designed a dinner for her that catered to her saying she wasn't very hungry (a dinner which, by the way, expanded to include a thick slab of cheese as she moved about and rediscovered her hunger) and slowly directed her movement toward the rocker, she began to revive. First, she asked if there were "any more dog shows" on TV. We'd watched about an hour of one before she napped. I assured her that I'd taped "the whole thing" and we could pick up where we left off.
    "Oh, good," she said, with enthusiasm.
    After the dog show, she wasn't interested in me reading to her but she was definitely interested in staying up. We watched some history programs I'd recorded while she was in the rehab facility featuring Bible Times. She was animated and chatty throughout. When I finally suggested, at 0120, that it might be a good idea to get her into bed, she said, "Well, I could do that, too..." which means that she also could have stayed up for another couple of hours.
    "Well, Mom, you're choice. I'll lay it out for you. We've got a 1400 appointment tomorrow with the Hospice Social Worker. I'm thinking it might be a good idea if you're at least up and bathed by the time he gets here. If you go to bed now, you'll be getting a bit less than your usual 12 hours. Do you think you can handle that if I awaken you between 1100 and noon?"
    "Oh, I think so. Noon would be better."
    "Good point," I said. "I'm trying hard to make sure that the Hospice people fit into our life rather than we into theirs. Tomorrow will be a good test of their flexibility, I think. If I awaken you at noon you'll probably be sitting down to breakfast about the time he shows up. That's okay with me. Is that okay with you?"
    "Sure," she said. "They should be fitting into our life."
    So, I think, she understands part of the point of hospice care, even if she's not clear on why it's kicking in now.
    Just a few minutes ago (it's now 1056) The Little Girl called me into the bedroom. Mom was sleeping without the blankets on her, which is typical for monsoon mornings, and her oxygen cannula pushed into her hair. I asked her if she wanted to awaken "now" or if I should give her "another hour". "Another hour" it was, although I'll keep my ear cocked in the direction of her bedroom for movement. She looks good, sounds fine, but, of course, we'll see when I rouse her. She'll be about two hours under her usual 12-hour-sleep mark, but that could lead to almost anything.
    Tomorrow we have a "one to two o'clock" appointment with the Hospice nurse and a 1500 appointment with the Hospice Spiritual Counselor that Mom requested. The first appointment, I suspect, will be a bit early in Mom's day but I'm determined to make sure that our days run, as much as possible, on Mom's schedule. So, if the Hospice nurse gets here while I'm bathing Mom or she's breakfasting, so be it.
    It isn't as easy as I thought, making sure that Hospice works around us rather than vice versa. My instinct, for myself, is to work with other people's schedules. As well, it seems that, for some reason, although I've mentioned several times to several of the Hospice people the specific eccentricity of my mother's preferred hours, so far only one of them has been flexible enough to schedule an appointment past two in the afternoon. I'm working hard, though, to back peddle my tendency to change Mom's schedule to fit the pros, which is pretty much what I used to do. In this case it seems wise to see to it that we stand Mom's ground, since it looks as though visits from a variety of Hospice folk will be regular, even weekly.
    I'm very curious about the Spiritual Counseling visit. I am, though, going to attempt to allow the visit to occur without my presence. I'll probably "repair" to the living room and work on the computer or something. I'll probably still be in earshot, but I won't be in eye shot and that should allow Mom and the Spiritual Counselor to find their own footing. I can only barely imagine how Mom will handle the visit and how the Spiritual Counselor will handle Mom. I've reminded Mom several times of the visit and, with every mention, she looks surprised and intrigued. I think she's probably expecting an hour or so of stimulating religious discussion not necessary focused on her own spiritual priorities. I have no idea what the Spiritual Counselor is expecting, but I rather think she's not expecting what Mom's anticipating. If I overhear anything interesting I'll be sure to report.

    Since I have some time, here, I think I'll run through some of the phrases I highlighted in the Final Gifts book and explain why they caught my mind.

• They may try to stop the confusion with medication.
  All of these responses serve only to distance dying people from those they trust, producing a sense of isolation and bewilderment. --pg 14; para 2-3
  Succinct reason for refusing psycho-active medications on my mother's behalf as long as possible.
• Unfortunately, dying people are often labeled "confused" without adequate assessment. The truly confused patient may have dementia—...unconnected with normal dying. pg 17; para 2
  I was pleased that this was mentioned...although there is little else mentioned in the book about whether those already demented display different dying experiences.
• informal caregiver --pg 23; para 2
  I highlighted this because I take slight umbrage at being labeled an "informal" caregiver. My caregiving is, certainly, the most formal, as well as the most complete and inobtrusive that my mother receives. I prefer the term "avocational", which, for me, simply means that I'm unpaid and not professionally recognized.
• ...especially in light of advances in pain control that allow a layperson to administer medications that ease discomfort without drugging someone into a stupor. pg 23; para 2
  This is especially important to me and I want to remember that The Literature, at least, indicates that this can be done. I still have questions about how effective this approach will be with my mother, should the need arise, in particular, considering her "opoid innocence" and, as well, the fact that, consistently, after two weeks of 40 mg lisinopril dosage, she becomes more, not less, "rubbery" and "stupid silly". We'll just wait and see. I'm conflicted, though, still, about "experimenting" on my mother. This doesn't seem to be a time for experimentation.
• In real life, death isn't always a handy matter of minutes or hours, but a grdual process that can last...sometimes years. pg 32; para 3
  I suppose, using this interpretation, my mother has been dying for years, which, of course, brings into question definitions of "dying".
• When Death Is Close
  ...difficulty swallowing...
  ...Sometimes mucus gathers in the mouth, throat, or lungs...
  ...As death nears, breathing may change...
  ...temperature may rise...
  ...Some people experience periods of profuse sweating...
  ...Output of urine and stool usually drops...
  ...A few people have involuntary movements...
  As the person gets weaker and sleepier, communication with others often becomes more subtle. Many people want the company of one or two important people. Often they pay little attention to what is going on; they seem not to listen, or their eyes become glazed—as if they're looking at, but not seeing people or things. Sometimes their eyes remain half open, whether they're awake or asleep. But even when people are too weak to speak or have lost consciously, they can hear; hearing is the last sense to fade. --pgs 34; last para through pg 36; para 2
  My initial intention was simply to mark what to look for toward's Mom's end. I was intrigued by the part I've bolded above, though. Mom already sleeps with her eyes slightly open a lot of the time. As well, considering that she is hard of hearing, anyway, I wonder if her hearing will kick in more acutely as her other senses fade.
• The dying often use the metaphor of travel to alert those around them that it is time for them to die. They also have a deep concern about the welfare of those they love, asking themselves, "Do they understand? Are they ready? Are they going to be all right?" It seems dying people need permission to die. --pg 71; para 3
  I'm very curious about whether my mother will even be aware that death is nearer than usual and whether she will use metaphors, especially travel metaphors, to alert me. We talk about travel a lot as it is. Also, I'm wondering if my mother may be so comfortable with her situation that she may not feel she needs "permission to die". If she does, I hope I'm alert to this and, certainly, I'll give her permission. But, I sense, at this time, that she may already feel she has my persmission; it's her own she doesn't yet have, I think.
• ...dying people know they are dying...They attempt to share this information by using symbolic language to indicate preparation for a journey or change soon to happen. --pg 73; para 1
  I don't think my mother yet considers herself "dying". I'm curious to know if she will and, if she does, whether and how she will communicate this.
• Paul's story --pgs 79-82
  I highlighted this story because this man wanted to take everyone and his house with him. Something about this desire struck me as possible for Mom when she becomes aware that she is approaching death; although I can also imagine that she may not be concerned about this.
• The most prevalent theme in Nearing Death Awareness seems to be the presence of someone not alive. --pg 83; para 1
  I highlighted this in order to trigger myself to remember that Mom has been doing this for years...and I want to remain alert to how her presence in The Dead Zone may change as she moves closer toward death; if it does.
• "Something seems different," he said. --pg 114; para 2
  I highlighted this as a reminder to myself to remain alert to "differences"; or to the possibility of no differences.
• ...pain, a common problem when cancer spreads to the bones --pg 116; para 3
  This is my reminder to be alert for this, as the Hospice nurse suggested that Mom's anemia may be an indication that bone metastatis has occurred. He urged me to "google" this; which I did...I couldn't find anything more than the suggestion he put forth, though...it seems it's not much written about, except in passing.
• Both messages clearly indicated an awareness of the future that families often subconsciously deny—not because they don't care or arent' interersted, but because they don't understand the significance of what's being said. Busy providing care and emotional support, they can't see beyond these immediate concerns. --pg 121-121; last para through 1st para
  Just yet another highlighted reminder to me to remain alert
• Depression is a normal part of dealing with the many losses experienced in the process of dying. And as weith other emotions, depression should be respected. --pg 124; para 3
  Not sure my mother has or will experience obvious depression (which she would call "disappointment" or "discouragement" and to which she has tended to be immune) but thought I'd highlight it in order to trigger alertness about this, just in case

    Almost time to awaken the already awake and luxuriating, at her request, Mom. Although I'm just about halfway through my book highlights, I'll need to continue...
    ...later.
- posted by Gail Rae @ 11:57   email  this post