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.
Moseying Down the Trail
An Open Response to Mona, a Regular Reader and Commenter:
I needed the smile your comment on my immediately previous post splashed across my face yesterday, Mona! Over the last week or so even I have been surprised at how frequently I'm posting, again. Lately I've been scouring my motives, thinking that I might be feeling, since the "death sentence" was laid upon my mother's head, some urgency about posting under the assumption that I "now" have a limited time to do so and want to record as much as possible. I'm not sure this closes the case, though, as I've suspected that after my mother's death I will probably feel the need to post a lot in reflection.
So, you know, I'm still unsure of why I'm moved to post so much, right now, except that present circumstances, which are surely influenced by the "death sentence", have a knack for stirring up my thoughts in regard to my mother, our companionship and my caregiving. In looking back at my usual posting schedule it looks as though such stirrings are not unusual.
To you, Mona, and everyone who reads me here, please know that comments are always appreciated, in part because I am grateful that I am occasionally read. Comments also allow me the special thrill of feeling as though I'm in conversation with a reader, here and there, but they are not necessary, so, please, don't ever feel obligated to comment...rather, allow yourself to feel moved to do so! Readers and comments or not, I seem to have more than enough internal provocation for posting.
Yet Another Visitation of an Important Caregiving Topic:
While my mother was in all three medical facilities from 5/14/08 - 6/29/08 it was ever so common for me to hear, from all manner of medical personnel, some variant of the following: "Being elderly is childhood in reverse." That's a quote because one of the CNAs at the rehab facility actually voiced this version. I was always too involved in looking after my mother at these facilities to respond positively or negatively, but I haven't been able to let go of this obviously universal perception and, as you can imagine from having addressed it some time ago from several angles in this essay, remain in deep argument with it.
Over the last few days a few of those thoughts have gelled into questions that I'd like to put before my audience (present and future). If this observation is true:
- why is a newborn, while admittedly vulnerable, generally the picture of incipient health and someone who is close to death (and also admittedly vulnerable) generally the picture of the absence of health?
- why, as caregivers to infants, do we not routinely consider placing them in care facilities and, yet, we routinely place our hard-to-care-for elders in such facilities?
- why are people often heard to yearn for children, especially babies, but rarely heard to yearn for the opportunity to take care of their elders? Why, in fact, does the Elder Care Ambiance du Jour place major emphasis on what Adult Children can do to "keep their parents independent as long as possible" while most parents struggle with the necessity to allow their children increasing independence?
- why did I sense, accurately, I think, that I would not make a good parent but I also sensed (also, I think, accurately), when my mother asked, that I would make a good companion and caregiver to her in her Ancient Years?
- why are we ulteriorly convinced that single parenthood is not the best circumstance for either parents or children and yet we act as though we are equally sure that single caregiverhood has no significant impact on either adult children and families and the parents for whom they care?
- why do we routinely congratulate single parents on the victories implicit in rearranging their lives to parent their kids, yet routine "suggest" that obviously overburdened single caregivers turn their care recipients' care over to the pros for hours at a time and/or put their parents "in a home" so that caregivers "don't lose their lives"?
Yesterday I received a curious magazine, Miller-McCune: Turning Research into Solutions, to which I do not currently subscribe but to which I've been invited to subscribe for free, although I'm not sure why I'm on their "free subscriber" list. The magazine has an article in it which I have yet to completely read, although I've scanned all the sections and am intrigued: Pax Americana Geriatrica. At this point in my scanning, despite the difficulties it outlines in regard to the aging of the population of those nations considered major power brokers, it also suggests that the aging of these populations will usher in an era of peace. It also suggests that the younger a population is, the more warlike it is. This throws into question the idea that aging is childhood in reverse. However pleasant are many of the circumstances surrounding parenting an infant, I doubt that many of these circumstances would be labeled "peaceful" by parents. Makes me wonder: Are we simply not tuned in to the implicit peace of Our Ancient Ones? Is this lack of perception the major problem that stands in the way of us keeping our elders closely connected to us? Yes, garnering the resources to properly care for An Ancient One is not easy, either in home or in country, primarily because we haven't paid attention to renovating our environments to this purpose. Even so, when all is said and done in regard to caring for my mother and everything is on an even keel, which happens more often than most would suspect, there is little more beta-peaceful (which implies alert relaxation) than the afternoons and evenings my mother and I spend in each other's company, no matter what we're doing.
As I attend more closely to the above mentioned article my intention, of course, is to report back, here. In the meantime, consider this: As long as we insist on equating aging with "childhood in reverse" we will not only fail in our efforts to care adequately for Our Ancient Ones, we will miss the unique and plentiful gifts they have to offer our families, our communities, our societies and our world.
One half hour to go before Mom's 12-hour sleep mark.
It's seemed like a Friday-bordering-on-Saturday, today.
Thus, it was with some surprise that a recent caller reminded me that it's Thursday and we have one more day of warm, muggy weather before the temperature drops about 10 degrees. Nonetheless, Mom and I have had a great day. I'll cover movement over at Life After Death Sentencing but, so far, it's been a good, fun day. Mom was sitting up on the bed when I entered her bedroom, almost ready to arise. She took her breathing treatment well, was chatty although not interested in bathing but, then, she never is until she settled down on the toilet and realizes how warm and cozy it is in the bathroom. While we ate I read interesting articles from the paper since it seemed like she would be interested and zoned in. She was. One article in particular, about "brother" movies, is fashioning our entire day. Two of the movies, The Godfather and Rain Man are in our collection and shared favorites. As read the mentions of both Mom nodded and interjected how "enjoyable" both are. I asked her if she'd like to see them today. She was more than enthusiastic. We just polished off an extended "morning" with the first. Mom was fully into it, as I was I. We paused the movie several times to talk about various scenes and bits of Cosa Nostra philosophy. About halfway through Mom decided that it would be proper movie watching conduct to have popcorn, so I won't have to worry about her blood sugar tonight. She's napping, now, and we're planning on watching the second of the two movies tonight. She went down at 1800. "Don't call me any later than eight," she directed. That's a change!
Regarding the "issue" we've been having the last three days (hinted at in the immediately previous post) that I finally confronted yesterday: Mom is never particularly fond of either her treatments or her pills so we tend to make them into a joke, i.e., talking about how she "can't do anything without taking a pill, first," or me telling her it's time for her to morph into "The Masked Woman" (she uses masks for her breathing treatments). She is least fond of the breathing treatments and, unless I keep a sharp eye on her, she is liable to pull the mask down to her neck or hold it away from her face to keep from breathing the stuff. Since the breathing treatments are obviously doing her good, at least for the time being, I generally and simply replace the mask, remind her to keep it in place, and we continue. Usually, too, during two of the three treatments which last well over about seven minutes, a long time for youngsters and lightly demented oldsters, I move in and out of her view doing chores, setting up whatever we have planned for after the treatment, etc., but I keep my eye on her.
During her two "weak" days she decided she was not going to tolerate the treatments. Although I was pushing my limits I remained in good humor and just replaced the treatments about twice as much as is normally required. Yesterday, though, I was well past my limits and not in anything close to good humor. Mom was still intolerant of the treatments. With each of her attempts (and there were many throughout the day) to hijack the treatments I became more exasperated. Finally, some time in the early evening, after she's awakened from her nap, was taking one of the long treatments and was attempting to remove it, in front of me, for the fourth time, I reached the end of my rope. I suspended the treatment, took the mask off her and faced her down.
"Mom," I said, "these aren't 'at your pleasure' treatments. Let me explain why. Do you understand that you have lung cancer?"
"That's what I keep hearing," she said dismissively. No one talks around her when her health is being discussed and her lung cancer comes up fairly frequently when Hospice People are here, so she's privy to this a lot.
I ignored that it sounds like she doesn't believe this. It's okay with me if she continues to consider it a fact outside of her reality. I went directly for the heart. "You were diagnosed on May 21st. At that time the doctor gave you six months to live. Do you remember this?"
I doubt that she does but, now fully on her high horse, she responded, "Ohhh, yes. I remember."
"Okay," I continued. "It was July 21st three days ago. That's two months down. Now, I'll tell you, I expect you have somewhat more than six months in you..."
"Well, of course I do!"
"...but the bottom line is, lung cancer is fatal and you're not being treated because treatment, at your age in your condition, would very likely kill you after rendering your quality of life into shit. So, many people are working very hard, primarily me, to see to it that for the rest of your life the quality of your life remains high. My perception is that your quality of life is pretty much as it was before you went to the hospital. Do you agree?"
I had her full, intent attention, now. She was even a little flustered. "Well, yes. I'd say so."
"Okay. These breathing treatments are an important part of keeping your life going the way you like. They are important, to you and to me. They keep your lungs as clear as possible by making it easier for you to expel the secretions that the tumor is causing your lungs to create. With a little luck it's even possible, with these treatments, that something else will get you before that tumor in your lung suffocates you. So, you need to cooperate with these treatments. Not only because they help you, ah, ah, ah, no comments here, you're going to have to trust my judgment on this one, nope, I mean it! Silence! You need to cooperate with these treatments not only because they help you but because, when you don't cooperate, me having to remind you every 30 seconds to keep that damned mask on your face drives me to distraction and, believe me, neither of us likes that! Now, if you were so demented that you had no idea what was going on, that would be one thing. But you aren't that demented. You're annoyed with these treatments and you're allowing your annoyance to let your willfulness overcome your will power. I'm not going to be nice about this any more. You need these treatments. I need your cooperation. This is a joint venture here...this isn't just about you, it's about me, too. You need to allow yourself to remain as healthy as possible for as long as you want...and you need to allow me to go about the business of caring for you without unnecessary distractions. I can handle anything if it's necessary. There will probably come a time when you are no longer interested in the effort it takes to stay alive. But this isn't true, yet, is it?
"No," she said, firmly and quietly.
"...and I think I'll be a fairly good judge of when that starts to kick in. Do you think that's a fair statement?"
"Yes," she said, without argument of any kind, voiced or unvoiced.
"In the meantime your intolerance of these treatments is unnecessary and dangerous and it will stop now!"
We've had no further problem with the treatments. She's had three since this confrontation. We may, again, here and there, between now and the time when she loses interest in prolonging her life (if that time occurs), but I have confidence in Mom's sub- and unconscious abilities and I know that a few appropriate words spoken here and there when she reaches for the mask, again, will do the trick as long as she's not in the dying phase.
Does it sound like I was too harsh? This is what I mean when I talk about Drill Sergeant behavior and how well it works for my mother and me. In addition, I've discovered if I can rile my mother a little, and, believe me, Drill Sergeant behavior, especially when it involves long, dictatorial speeches like the one above, always riles her, I am not only successful in getting my point across but anger tends to stop her in her tracks and make her think [Would that we all reacted this way to internal anger!]. If she were a little more demented the Drill Sergeant routine wouldn't work. If she were a little less demented it wouldn't be necessary. If we were not as closely bonded as we are and as involved in each other's lives as we are both her thoughtless willfulness and my attempts to circumvent it would be moot. I saw this happen at the skilled nursing facility. The nurses and CNAs just apologized for what they were about to do to her, or make her do, especially if it was something they knew she considered unpleasant, and then got on with it, usually to plaintive cries from Mom of, "No, Gail, no!"
Mom and I are where we are, though, and, sometimes, it takes a verbal push against her thoughts to move her beyond thoughtless willfulness and to move the two of us beyond a stalemate. There are times, as well, when her thoughtless willfulness isn't a problem and no action is required. But, yesterday, well, yesterday speaks for itself.
So, why bother mentioning such an episode? I suspect I'm not the only 24/7 family caregiver who finds herself occasionally caught in such circumstances. I also suspect, from past experience when I was green at this, that many caregivers consider such methods "dirty little secrets" and harbor ambiguous guilt about the possibility that tactics like this are "abusive". If you know your care recipient as well as my mother and I know each other and if other circumstances of character and mentality correspond to mutual understanding in these situations, strageties like this are not "dirty" and they aren't "abusive". They aren't pleasant, surely, it's never fun to find oneself having to be confrontational. But if pleasant requests for cooperation, reasoning, cajoling and pleading don't work, at least with my mother, "Hut to!" usually does.
Mom has had two "weak" days...
...followed, yesterday, by a semi-weak day. After two of her weak days, in which I was the power behind her throne, I had a semi-weak day, yesterday, too. I ached throughout my shoulders and arms from the effort it took over the previous two days to maneuver her around. I was incredibly tired, despite decent sleep...and, yet, at least in the morning Mom needed more than the usual help. My day was fairly painful. A couple of times I told her, as she seemed to strengthen throughout the day, that I did not have my usual strength and I needed her to help me by perking up a bit in movement and, last night when she settled into bed, making the extra effort to move herself back on the mattress once she was prone. I directed her but let her do it herself. She did.
I'm feeling better today, despite getting less than decent sleep. I guess, luckily, my muscles are coming out on top of the punishment. Good. I'll need the extra strength, now, I'm sure, on a fairly regular basis. One optimistic observation: My back and legs weren't aching, so they much be pretty much up to par, now.
I hear my mother's timely reconnaissance cough. We agreed on an 11 hour sleep last night, just to try it, and I guess she subconsciously incorporated it. I want to direct interested readers to the miscellaneous observations over at The Dailies report for yesterday. Some of you might find them interesting.
I have one more occurrence from yesterday to report but I'll do that...
Yesterday was the second day in a row...
...that Mom has complained, upon awakening, this time from her night sleep, that she "just didn't feel good" but couldn't put her finger on what this meant. She said she wasn't in any pain. Her temp was at the upper reaches of the Arterial range, one tenth of a degree before the designation of "fever" kicks in. I am reminded that as terminal people approach death, according to Final Gifts, temperature may be slightly elevated. She's not lost her appetite, though, and her "interest in life", which is certainly less than some years ago, remains the same as it has for some years. She seems a bit puzzled by this "not feeling good" development, but not worried by it. So, yesterday, we had a full wheel chair day. I also made it a hair day and, since I awoke her earlier than her 12 hour sleep mark, I included a hair day, full wash, set and comb out. She was in unusually good humor for the Hospice Nurse visit but decided she wanted to cancel, yet again, the Hospice Spiritual Counselor and directed me not to reschedule the visit but to put it "on hold". That's what I did.
After a four hour nap once the nurse left, although she wasn't easy to rouse, she perked up during dinner. As I was scanning through DVR'ed programs to see if I could find anything to capture her interest she noticed the run of Law & Order: Criminal Intent shows I had taped and said she felt in the mood for "some blood and guts". This was a surprise! She usually prefers her mysteries to be of the more genteel type. We worked through all the ones I'd previously taped and hadn't watched. She was disappointed that there weren't more...so I've queued up all the L & O episodes I can find for the next week, just in case. Last night, though, a program on PBS about a flood that was probably responsible for the Scablands substituted well for the final lack of crime dramas.
I'm mentioning these "not feeling good" days for two reasons:
- First, they surprise my mother when she has them, so she considers them out of character for her;
- and, second, with yesterday's I was reminded of her "six month" prognosis and wondered if there was some veracity to it.
Which reminds me, during the H[ospice] Nurse appointment last week HN and I discussed blood transfusions. It seems they are quickly becoming medically unpopular, which doesn't surprise me. He mentioned that Banner/Good Samaritan in The Valley has already "gone bloodless". I didn't think to ask what is used instead. My nephew clued me in, when he was here building the ramps, that there is a new concoction, completely synthetic, including a mimic of hemoglobin, that is being tested on Iraqi soldiers, which promises to work better than blood and, as well, the artificial hemoglobin, which isn't a cell but attaches itself to blood cells, is more or less "permanent" and shows excellent results. However, I doubt that this is available to such as my mother at this time.
So, hmmm...maybe we're on a decided downhill slope. It will take more time and more symptoms for me to determine this, for sure. I figure, though, it's a good idea for me to be internally prepared.
I discovered during HN's visit that my mother's concentrator is clogged. Once the clog was discovered it immediately vanished. I'd been wondering, lately, about whether it wasn't functioning up to par and had dialed it up about 36 hours ago to get what felt to me like a fairly good flow. Luckily, HN carries a flow meter in his pocket. Just checking the machine cleared it.
HN also expressed confidence in my ability to care well for my mother, which was good to hear. Not that I have doubts, but recognition from the pros is nice. Just before he left he asked how we seemed to be doing overall. "We're cruising," I said, looking at Mom for confirmation. Mom and he nodded in agreement.
I'm letting my mother sleep in today. I'll check in on her at 1300, in a few minutes, at her 12 hour sleep mark, but I may let her go until 1400, depending.
If we're on the downhill slide, I hope that I'll be able to keep in mind that, when you can't fight gravity, it's best just to go with it.
...but first, a note about our sponsors...
The Social Worker asked me a startlingly appropriate question yesterday that I have to mention because I so appreciated his take on "things". He asked me, in a roundabout way after asking me how I am doing, if what he was observing in my behavior is normal for me. I was open, animated and slightly edgy (physically, not socially). I laughed and said, "Yeah, this is normal for me, so I'm doing well."
He laughed and responded with a version of, "So, this is as good as it gets."
Later in the conversation he acknowledged that he was already aware that my approach to life is to analyze it...and even later we discussed my habit of what he appropriately labeled "catastrophic thinking." It was a relief to be accepted for who I am.
My mother was in great humor during the visit. I'm noticing that she's tending more toward allowing the ironic comedian side of her personality more play than previously when in the company of others. The Social Worker acknowledged her marked sense of humor, too, by mentioning that humor is, indeed important. After he left I thought about this slight tweak in her persona. I'm guessing that part of this "new, more entertaining Ancient One" is her way of dealing, socially, with all the unaccustomed attention she's been receiving, lately, and part of it is an indication that her life is becoming a bit harder, from a health standpoint, than she's used to so she's working to lighten up the atmosphere a bit.
Today is Hospice Nurse and Hospice Spiritual Counselor day. I made brownies last night in response to mention from my mother in the afternoon that her "sweet tooth is screaming." We have plenty left and nothing pleases my mother more than to offer food to visitors. So, we should have a good day, despite getting an early start.
A little more book highlighting before I have to shower and awaken the Mom:
- As Cathy's mother had played such a strong role in her life, I wondered if she felt that her mother might hold her back. She'd been a powerful influence on Cathy. --pg 207; para 3
This was written into the story of a woman who maneuvered the time of her death so that she died alone. The mention of the influence her mother had on her caused me to consider the equally powerful influence I have on my mother and how my mother might maneuver through it to make it to her death. I came up with no insight. My knowledge of her, now, is so multi-faceted that I'm not sure whether she will want to die privately, without me in her room, or she will want me at her side as she dies. Mainly, I want to try to remain alert to what her preference might be as the time approaches and do what I can to accommodate her wishes.
- An important message here to nurses as well as to other health-care personnel is that some patients, despite our insistence that it's not their resonsibility, will try to take care of us. --pg 208; para 1
I'm surprised that "caregivers" weren't mentioned in this sentence, but I certainly identify with this statement. My mother is convinced that, most of the time, she is taking care of me. In some oblique and curious ways she is correct. The way I handle this is to acknowledge, for her, that we do, indeed, take care of each other, as we do, and allow her to decide what "responsibilit[ies]" she is filling in my life.
- "Of course, what mattered was not what I wanted or what I thought was best, but what Jean wanted, and what she thought would be best for Barbara. --pg 210; para 1
Just a further reminder to keep my eyes "on the prize", which is allowing my mother's wishes as much sway as possible.
- ...it was quite possible that she could control the timing of her death so it would occur on a Friday. --pg 215-216; last para-1st para
I wonder if my mother will control the timing of her death. I wonder if she will feel the need to do this. I hope I'm able to be sensitive enough to pick up on this and work with her, if she chooses to do this.
- He rallied for a few days, energized by his role as "host" for this family gathering, but then weakened to the point of being bedridden and barely able to swallow or talk. --pg 220; para 2
This is a good description of something my mother would do; rally for guests, then relax and allow herself her sway.
- But none of us, except Greers mom, though to tell him when to go. --pg 221; para 6
I've been thinking that, of course, my mother must know that her choice of dying time is fine with me, whenever she chooses. However, this sentence reminded me that perhaps I should tell her this as it becomes apparent to me that she knows she's in her "dying phase".
- Most people believe that we die when "ou time is up," or when an illness finally overcomes the body; they see death as passive and the dying person as powerless. In fact, many people ar able to exercise some control over their deaths; knowing about that control—of the time, the circumstances, and the people present—makes dying seem less passive and helps show that dying people do have power. --pg 222; para 4
I am pleased with this statement of one's power regarding death, especially, of course, when one is dying "slowly". I'm excited to discover how my mother exerts her considerable natural power over her death.
- Be honest about having trouble understanding. One way is to say, "I think you're trying to tell me something important and I'm trying very hard, but I'm just not getting it. I'll keep on trying. Please don't give up on me." --pg 227; para 3
Although I tend to think I already do this, I want to be alert to the possibility that I may find understanding Mom during her "dying phase" frustrating and be alert enough to dial back the frustration and keep trying.
- Don't push. Let the dying control the breadth and depth of the conversation —they may not be able to put their experiences into words; insisting on more talk may frustrate or overwhelm them. --pg 227; para 3
Considering how verbal my mother and I are, this is a pertinent reminder to me.
- Recognize the differences that distinguish Nearing Death Awareness form near-death experiences. Patients with Nearing Death Awareness are not clinically dead, often have such experiences over time and in a more gradual way, and usually can talk during the experiences, making them able to share these insights with others. You can help them in their struggles to share this information, and can learn from them as well. --pg 230; para 2
I don't think I'll have a problem with this but tagging this as a reminder is a good idea, anyway.
Thank you, readers, for your indulgence. It has been much appreciated.
Time to shower, rouse the Mom, and begin our up-together day.
Final Gifts Highlighting Continued
- "Okay, that's what's going to happen to my body," she said. "But what's going to happen to me?" --pg 134; para 9
If my mother has questions, and, frankly, I have no idea whether she will, regarding what dying is like, this piece of conversation struck me as very much the way my mother would ask her questions.
- Dying people develop an awareness that they need to be at peace. --pg 141; para 1
Knowing that my mother is, at her core, and has been for decades and decades a woman who is at peace with herself, I'm very curious to know if, prior to dying, if and when she realizes dying is on her imminent event horizon, she will feel as though she is not at peace and what she will feel will bring her peace. She has often, in the past, told me that she feels she still "has something to do," although she hasn't been able to say what that is. I wonder if she still feels this way [Note to self: Ask!] and, if so, whether she yet knows what that "something" is...or, failing that bit of knowledge at this time, whether it will come to her just previous to her death. Intriguing!
- But sometimes the request is less clear. It may be missed, seen as unimportant, or labeled as confusion. --pg 141; para 3
Yet another reminder to myself to try to remain alert and "hear" her requests, if there are any.
- [Agitation] may be what occurs when someone seems to die in pain; rather than physical, the pain may be emotional or spiritual. --pg 141; para 3
I highlighted this because it reminds me of my father's death and my consideration that he probably wasn't in physical pain when he died but, because of MPS recollection, which she shared with me, of his death mask and because I know that when my mother left the Veteran's hospital just before he died he pleaded with her not to go but she was too exhausted to stay, he was probably in emotional/psychological/spiritual pain.
- Anne had wanted the bust to stop for her—to die—at the nursing home so no one would know of her clandestine relationship. If her message had gone unheard, would she have died that night?..she died more easily knowing she had avoided being a source of embarrassment to anyone. --pg 155; para 4
I just found this particular story interesting in it's assertions about the personalization of death. Good reminder, really...that, just as each life is unique, so is each death. I wonder what eccentric spins my mother will put on death.
- The realization of the need for reconciliation that is part of Nearing Death Awareness seems to be similar to the effect of "seeing one's whole life pass before one's eyes" encountered in some near-death experiences. In both circumstances, people focus on relationships. --pg 158; para 7
I highlighted this because I question if this is always true when people have such an experience previous to death. Does it never happen that someone who is dying seeks reconciliation of ideas rather than of relationships? Isn't this of what spiritual reconciliation would consist?
- One way to discover needs for reconciliation is to encourage a mental inventory of accomplishments and disappointments. --pg 159; para 2
I'm wondering if it is smart to encourage this without knowing whether the dying person in question feels a need for reconciliation. If it appears as though that person does, then this is probably a good idea. If not, though, it seems to me it would be irritating to the person to have someone at one's side insisting on such an inventory.
- Many people, as they're dying, want to feel that their having been alive has been significant, that they made some difference in this world and in the lives of those around them. --pg 159; para 4
My love of It's a Wonderful Life notwithstanding, I've often wondered if deciding to acquiesce to such a value put to one's life isn't perhaps part of the process of death; in other words, if one has the time as one is dying, if determining such a value in regard to one's life isn't automatic. Just wondering.
- Telling us about "being held back" is a way dying people have of asking us to "look again—something's been missed!" --pg 161; para 4
Highlighted this as a reminder to myself.
- "I understand," I said. "And I'll try to elp you find what you need." --pg 162; para 5
I like the attitude of this response; I hope, if my mother goes through a similar circumstance, I have the presence of mind to remember to have this attitude...and express it to her.
- It wasn't what he had asked for, but it gave him some assurance, so he could get on with his dying. --pg 165; para 2
I want to remember this, as well, that even if all dying requests can't be met, honesty about the failure to do so may help the dying person let go.
- Charles and Claude presented their needs in the impatient or frustrated manner that some people do, when something is delaying them or holding them back. --pg 169; para 7
My mother, to this point, hasn't been the kind of person who is impatient or frustrated when something she wants and/or needs isn't met; she is very tractable in this respect. However, I highlighted this in case the imminence of her death changes this aspect of her character and she reverses her tractability. It might be refreshing, for both of us, if this happens for her.
- [In regard to communication with The Unseen] When this happens, the person usually isn't frightened but often has a look of wonder, recognition, joy, and sometimes puzzlement. --pg 173; para 1
Except for two instances that I can remember, one of which I experienced with her (the only one I've experienced), she usually spends time in The Dead Zone when I am not around and relates these episodes to me after the fact. I wondering if, in fact I'm hoping that, as she nears death I will be privy to some of these of her interactions. I highlighted this as a clue to help me know if I am present during one.
- The AIDS virus was affecting his brain. --pg 176; para 3
I highlighted this because, despite my inefficient scan of the stories prior to finishing the book, this is one of a very few instances in which someone displayed dementia other than the dementia of death. Unfortunately, I found no information in the book about any differences in Nearing Death Awareness for the already demented versus those for people who are undergoing "only" the dementia of Nearing Death Awareness. At the suggestion of MPBIL I googled for information in a variety of ways. If someone has noticed this and written on it, the literature is so buried as to be impossible to find on the internet. I also discovered a disquieting fact: It seems that much of the current literature (keeping in mind that this book was copyrighted in 1992) continues to recommend medicating not only those with entrenched dementia but those experiencing Nearing Death Awareness dementia, as well.
- Our need to nurture is intense. We survive, thrive, and grow, we comfort, celebrate, and reward ourselves—and the people we care about—with food and drink...Withholding it feels like denying love and nurturing—the very core issues of parenting. --pg 177; para 1
Or, it occurred to me, it may feel like our attempts at nurturing our being rebuffed, as though they are not good enough; which, of course, they aren't. Truly, I think, dying is rather like being born...there aren't any mentors available in the state one is in just previous to the experience who can guide one through it. At a certain point, perhaps, when one has the time to realize that one is dying, perhaps one also realizes that one's best use of one's energy is to attend to that which no one alive can help them and not worry about whether others feel rebuffed, nor whether others understand that one is, now, alone in one's adventure.
- Just before they die, and usually without warning, some patients can muster an unusual strength. Unfortunately, some use that strength to try to get out of bed and subsequently fall. --pg 183; para 3
This is the sentence that alerted me to the possibility that my mother may fall into this category. She has fallen as a result of provocations which could be considered similar to this.
- Family members should understand this [falling condition] and be vigilant. But it's cruel to blame themselves for something that wasn't their fault or due to their negligence because they didn't understand that dying people can exhibit a final burst of energy. And it's always worth considering the hidden meanings behind the fall, so as not to miss the important messages in this type of nonverbal communication. --pg 184; para 2
Thought I'd should highlight this in case such an episode happens at my mother's death and I need to be reminded of this.
- People who develop Nearing Death Awareness know they're not dreaming when they see a place or beings that others cannot—the messages about what dying is like—... --pg 185; para 2
This certainly characterizes my mother's Dead Zone experiences.
- ...but dreams may help communicate about the second part of Nearing Death Awareness—what they need to die peacefully...The dreams of someone facing a terminal illness often relate to strong emotions, and contain clues about important needs. By listening carefully, we can help people explore those needs and feelings and sometimes find solutions. --pg 185; paras 1 & 3
I highlighted this in order to remind myself of the peculiar character of my mother's dreams in the last three years. They are non-event dreams. She dreams of being in a specific place and/or being with specific people but reports that nothing actually happens, she's just "there". She easily describes places and people, often people whom she doesn't know in "real" life. They are not frustrating for her. It occurred to me, when reading these paragraphs, that I should pay more attention to her when she relates these dreams, as they may contain clues regarding states that she would like to achieve with certain people (either people identified in the dream or people for whom avatars are stand-ins in the dream) prior to death. She has yet to relate such a dream as frustrating, though. They always seem to have a refreshing effect on her, as though she was in the place and the dream, itself, contains its own satisfaction.
- "Maybe you're wondering about dying and what it's going to be like," I said. "He just died, so he should be able to tell you." --pg 187; para 11
Great way to approach a confusing terminal dream! I want to remember this, just in case!
- "But I'm not dreaming now, and he's not here," she said...
..."Can I try to give you some answers?" I said.
"Yes, but I don't know the questions." --pg 188; paras 1-3
I just liked this little bit of conversation, especially the last line.
- People's needs can be similar, but the way they express them, particularly in dreams, can be quite different. --pg 188; para 8
Highlighted this as a reminder that personal eccentricity is as rampant in death as it is in life.
- I suggested perhaps we could identify how the dream made Jenny feel; recognizing the feeling behind a dream often reveals its meaning. --pg 190; para 2
Good reminder regarding possible attempts I might make to analyze any of my mother's dreams.
- I described what I thought would happen: how she'd get weaker and not want to talk, smile, eat, or drink, and that then she wouldn't even feel like breathing; and her breathing would stop. --pg 191; para 4
Succinct explanation. Want to remember this, for myself as well as, if it is necessary to rely on it, for my mother.
- Identifying the feelings...lead to the same need: information, which we had and could share with them. --pg 191; last para
Yet, again, highlighted as a reminder.
- Sometimes dreams cause feelings of fear; exploring those feelings can be particularly important. --pg 193; para 5
I highlighted this as a reminder that, although my mother is rarely a woman who appears to feel fear, it's possible that she might, especially if the imminence of her death surprises her. I need to be alert for this.
- Usually the best interpreter of any dream is the dreamer. --pg 194; para 5
Absolutely. Must remember not to jump in too quickly if and when my mother has dreams, pre-death, that she wants to relate.
- Dreams that frighten a person may relate to fears about illness or dying; dreams full of anxiety may mean a person is worried about family, expenses, or arrangements that need to be made. Dreams that are puzzling often indicate a need for information. Very often simply talking about their dreams helps the dying figure out what it is they are concerned about or need. --pg 196; last para
Good dream discussion check list.
- At her father's funeral, Kathleen told a coworker about the irony of her reaction to his last comments. She remarked on the ease with which she'd become enmeshed in the web of pain, conflict, and assumption that can confuse those taking care of a dying person they love, causing her to miss her father's real message, even though she was a seasoned health professional. --pg 202; para 2
Good point. Want to remember to make time and mental space for compassonate listening.
- But I have learned that when dying people have important goals more often than not they reach them. --pg 206; para 1
Surprising and comforting tip.
- ...because of the disease in her brain, when she was awake, her thought processes were fragmented.
Highlighted as one of the few examples in the book of someone who experienced dementia other than the dementia of nearing death.
- The quality of her life seemed so poor we wondered what was holding her back. --pg 206; para 9
A reminder not to presuppose what the quality of someone's life is to them; all we can know for sure is how we think we might feel under the same circumstances and, not having been in those circumstances, we are probably wrong about ourselves as well as about the person we are observing.
"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?"
"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."
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
...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
I've heard Mom coughing off and on for a little over an hour...
...and checked on every episode but her eyes have remained resolutely closed, telling me she isn't ready for me to consider her coughing reconnaissance. I'm going to attempt to arouse her at 1300, which will be her 12 hour sleep mark. Even though today isn't one of her favorite days (cloudy, rainy, cool, muggy; which are, of course, my favorite), I'm expecting success, as I can tell she's already worked her way out of sleep...she's just hanging out in that "I don't want to get up yet" zone.
I just finished Final Gifts. At this point, I'm grateful for the practical reminders it sets forth that will keep me on my toes. MPBIL and I had a bit of conversation yesterday about "nearing death awareness" in which one word he used triggered an interesting reminder for me. The word he used, as he confirmed what I meant when repeating the label the book uses for these experiences, was "neurological". And, of course, they are, although the book discusses them in a social, psychological and spiritual context. For the next several hours my brain quietly worked on a variety of issues related to these experiences and to life, itself:
- That, as Alan Watts put it, "“I think a tomato...is spiritual...” In other words, the physical is neurological and spiritual and the neurological and spiritual is physical.
- "We are always dying, every moment," which puts life in the perspective of it's end, is as legitimate as saying that we are always being born, every moment or we are always living every moment. The catch is to determine the perspective of the one for whom you are caring and to perceive changes in that perspective, if they should happen.
- Whether or not the experiences related in the book are "real" is beside the point. All of our experiences take place in the same amorphous reality as do these final experiences, I think, and acceptance that they are happening and having an impact are what is important, not trying to determine whether they are "real". Maybe a substitution of the word "true" for the word "real" would help some people. For me, I think, it's enough to know, in the case of my mother, that the experiences she's been having for years in the context of what I call The Dead Zone happen for her and affect her and my life together. I'm expecting that any experiences she has while in any future "dying phase" will have the same effect
- The final chapter of the book, which summarizes suggestions for approaching the dying of one's care recipient, are especially valuable to me. Some of the approaches I already incorporate; they've become necessary through the last more than a few years of my mother's life, especially considering her dementia. Some of them I haven't yet incorporated but suspect I will find valuable.
- One short section of the final chapter urges the caregiver to analyze why they are where they are with the care recipient and doing what they are doing; i.e., what are their expectations, what are they getting out of it, how much of what they are doing is obligation, how much is related to some other desire. As I consider these questions I find my self satisfied with the answers that I am here because she asked; I remain because it suits my mother and me. Funny, although, normally, I am attracted to in depth, endless analyzing of just about everything, in these journals, throughout the years, I feel as though I've analyzed these questions enough. I no longer question my being here, nor my mother's desire to have me here. Maybe I will, again, later. But, for now, it's enough that I'm here, so is she, and we're pleased that we've been able to do this, this life, together and can continue to do it, together.
- I did a fair amount of highlighting but, in scanning through my highlights, I'm struck that, without exception, what I highlighted are reminders to consider this or that approach, if necessary, or try this or that interpretation, if necessary. I'm hoping to find some time to delineate some of what I consider the more important highlightings here.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson