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.
Oops! Forgot to cover the business.
Although we are observing Mom's request for no funeral and have fulfilled her request to have a party on her, there will eventually be a graveside service. She is a Navy WWII veteran. Her wish, besides donating her body to science, was that her ashes be buried next to my father's plaque (he was buried at sea with full military honors) at the VA cemetery at which that plaque resides. Two of my brothers-in-law are in the process of arranging this and a military burial. Her ashes will not be available until June, probably, so this is when the ceremony will take place.
I am acutely aware of the backlog of much appreciated condolence comments and emails. I will be responding to each of you, I promise. In the meantime, I thank you, profusely, for thinking of me. Your thoughts give me the courage to continue through this strange transition I ordered for myself by virtue of surrendering to the pleasure of being my mother's companion for fifteen years (practically to the day, I recently discovered) and her full time companion and caregiver for twelve of those years.
Please know that through the extraordinary generosity of my family, the wise final directives of my mother and the deeply sympathetic offerings of support from our business acquaintances, I am safe and sound and won't have to scramble for survival or to find a new home for at least enough time for me to get a hold of myself and this new phase of my life and figure out where to go and what to do from here.
Although my local relationships have been marked by distance over the last few years, friends have been coming to my aid. One such local long time friend even expressed her gratitude to my family for coming in quickly to prop me up after Mom's death and has assured them that she will pick up where they left off, work hard to ease my transition and make sure my heart, while it is confused and in mourning, won't break. Surprisingly, to me, I have no qualms about letting everyone and anyone who knew and loved my mother and knows and loves me help me through this.
And, yes, these journals will continue. Slowly, at first, I'm thinking, although, well, who knows...
...our first snow of the season is rapidly closing in, which delights me. It would probably have also delighted my mother to know that she would miss it! My immediate plan (I have no others, yet) is to huddle in my favorite weather with my cats and my sisters' and friends' check-ins and allow all aspects of mourning full sway. With that said, I think I'll heat up some of last night's left over excellent pizza (I'm finally hungry, again...I think that's a good sign), find something really ridiculous to watch and relax.
I feel brain dead, right now...
..."in a good way", I think. Family is gone. Two of Mom's grandkids left on Friday morning; the rest left this morning around 0730. I had a bit of anxiety last night about how I'd feel in a completely empty house, no family, no Ancient One. My anxiety was unfounded. I feel good, here. I'm at home. Our home. My home. I'm not "looking for The Mom", nor are the kitties. It's a little odd not to be elbow deep in Mom at this point in my day but I don't think I'll have a problem getting used to this. Everywhere I turn in this home I am greeted with an internal video of a memory...and I am pleased and grateful that this is happening. Nonetheless, I asked my sisters if they would arrange a schedule of having someone call me every day for awhile, as I have had some concern that the loss of Mom in the flesh would, occasionally, hurt so much that my heart would stop. They are doing this. Now, though, I'm feeling that this is just all around good therapy for all of us. Mom was such a force with which to be reckoned that we have all been blindsided by her death, despite the circumstances. We're finding this to be true of unrelated acquaintances, as well. I think everyone believed, with her, that she was physically immortal.
I did some housework today. I've always thought of myself as someone who doesn't pay much attention to housework, especially while Mom and I were sharing this home. I'm beginning to think, though, that some of the housework was neglected because my priority was being Mom's companion, which felt right, and, I think, was right...and, often, needed housework would put me in an area of the house where Mom wasn't and didn't want to be. Made it easier not to do it.
I have been overwhelmed at how quickly and wonderfully this week has brought our family together, renewed bonds, sharpened impressions, strengthened the quirky ties each of us family members has with one another. I was able to meet a relatively new member of our family. One of Mom's grandkid's partners came and, lo and behold, some of Mom's eccentric traits are reflected in this woman: Mom's inordinate love of Miracle Whip; chocolate; coffee at any hour of the day or night (the caffeine never kept my mother from sleeping); Cheetos; her love of children and her desire to be their protector and champion. There were times when I could see Mom's impish glances in this woman's reactions to the goings on, here.
Every family mourns eccentrically, I think. Our strategy seems to be spontaneous bursts of hilarity interspersed with tears. We joked about everything, including how to use Mom's death to get freebies, based on an experience I had a couple of hours after Mom died. A few hours after Mom's death and the closing of the initial after-death business I decided it was time for coffee but didn't want to make it. I probably also wanted to get out of the house and into the world for a bit, as well...so I headed for the Starbucks drive-through. The coffee drink I ordered took a little longer than usual to make, as I'd arrived at what passes for a coffee rush period in Prescott. As I waited, the barrista engaged me in conversation, asking if I was just going to work. Without thought, with Mom's death soul fresh, I responded, "Actually, I just lost my job. I've been my mother's companion and caregiver and she died this morning at seven-oh-nine."
The poor young woman's face fell. Her mouth dropped open. I stared back at the woman...I can only imagine what sort of contortions my own face went through. I was devastated that this confession had spontaneously popped out. When the woman gathered her wits (which I never did), she insisted on giving me my latte for free. When I told my sisters what had happened they roared with laughter...and the incident was mentioned daily every time someone left the house to pick up more supplies or seek a bit of outside entertainment. We all agreed that Mom would have not only gotten a kick out of this, but would have been pleased to know that we were making some practical use of her death. She was, after all, a master bargainer.
That was not the last time I inappropriately blurted news of my mother's death to complete strangers within my community. Each time I did my relatives were present...and savored the moment with much merriment. I was not the only family member who did this. I realized that people who have just lost a loved one probably should be prohibited, by law, from talking for at least the first 72 hours...but, this last week came too early for the statute to kick in.
Item #15 in a codicil to my mother's will, dated 1992, specified the following: "No funeral (graveside service if you wish). Just get together and have a party on me! No tears!" Since all of us first received a copy of this codicil, this item has become legend in our family, and beyond. It inspired some very good friends of ours to do exactly the same for their patriarch when he died some years ago. Although none of us realized it until we were fully into the week, this is exactly what we did. I imagine we serendipitously engaged in an ad hoc Irish wake. Despite Mom's adamant last sentence, we shed tears, many. I'm sure, if anything of my mother was capable of being aware of what transpired here immediately after her death, she forgave us this. After all, my father's extreme sentimentality, which rendered him quick to tears, seems to have been a dominant gene. It was as evident in their children as my mother's blue over his brown eyes. I suspect she would have been secretly pleased that we didn't spare the tears, since there was much laughter as a week long party spirit embraced our home.
One of my sisters will be coming right after the new year. This was planned in advance so that I wouldn't be left alone too long, then, as the week progressed and phone calls between us and her reached fever pitch, we wondered if this had been the right decision. I am not in the mood for questioning anything, though, and am very pleased that I have another extended sister visit to which to look forward. I suspect it will come at exactly the right time.
This sister is also the one who mentioned, this week, that Mom was "such a gentle, pure spirit". True statement. Mom had her own take on gentle which did not exclude the occasional "gentle" tormenting of pets for fun. Her gentleness did not include fear or hesitation. She was, I think, definitely pure; purely herself, always, without internal conflict.
Another long, long time friend of mine said he always thought my mother would have been the "cool mom on the block". She was. Although we, as kids, wandered our neighborhoods (we lived in several) with abandon, as kids of my generation did, one way or another we and our friends always ended up at our house, Mom was always delighted to have anyone and everyone under our roof and had such respect and interest in our friends that she often included them in her frequent pre-classroom testing of audio visual activities. I don't think I ever heard anyone say, specifically, that she was the "cool mom", but our friends' lack of reluctance to be in our home, her specific interest and pleasure in everyone we brought home and her across-the-board acceptance of everyone was enough to garner her this award. She parlayed this talent into being considered, among us as adults, the best mother-in-law in the world, completely hands off; a generous, delightful hostess, praised for this, just yesterday, by the father of one of my sister's husbands in a condolence card in which he was moved, by my mother's death, to step out of character and gush about how wonderful it was to know my mother; she was always up for fun and irony, able to manufacture both from sometimes meager resources; always open to new ideas; always open-hearted, open-minded and generous toward everyone, even people it was hard for some of the rest of us to tolerate.
My mother left clear trails of several legacies. This week my sisters and I were able to cross observe one in particular that I'd rarely considered: She and my father, despite the stark contrast between her eternal optimism and his eternal pessimism, raised a family who learned how to raise safe, solid, caring, all-inclusive families of their own and expand this ability to their children. This trait continues to evolve into the latest of my mother's grand and great grand generation, both of which include children by genes and children by choice. Whether or not she met them, and there are some newcomers that she learned about but was never able to meet, they were all hers...no exceptions.
One of her last legacies, I think, is that she allowed herself to become the focus of my journals about her and my life...and delighted in it. She allowed me to broadcast that, although it is very hard in this society at this time and not without ticklish times and great risk, it is possible for families to embrace their elders to the point of keeping them four-square within the family to the ends of their lives despite health problems, dementia, despite everything.
"You just do it." This is a quote from her with which she often responded when one or another of us would recall circumstances that, on the surface, seem difficult but which everyone survives, seemingly miraculously, in good shape. It is a philosophy that all her children, and grandchildren and great grandchildren seem to have absorbed. You're here. Although it's interesting to contemplate, you don't need to know how or why. You just do it, while you can. When you can't, anymore, well, you start doing that with which you're immediately confronted.
In fact, my family is "just doing it" for me, at this time...exactly as Mom taught us. They have been smart about sensing when The Loner shouldn't be left alone. I cannot find words to express my awe and gratitude.
Mom lived in character. She died in character. She came in ready for anything and she left wanting more. It pleases me to imagine that she is not being disappointed in this.
Amen, Mom. Amen.
It is finished!
At 7:09 this morning my mother, My Ancient One, my That Girl, died.
SPOILER ALERT: The rest of this post may, for you, spoil an upcoming meal; your current attitude of the day; your attitude toward me as my mother's daughter, or companion, or caregiver, or as a person. I will be devoting the rest of this post to talking explicitly and in detail about the hours leading up to my mother's death, the death, and anything else that comes to mind as I review my mother's and my morning and her death. Be wary as you read.I returned to my mother's room immediately after publishing the last post. From then until a little before 0600 I sat in the wheelchair snugged up to her bed, held her hand, stretched my legs out on the lower half of the bed and rested my feet against her belly. A few times I tickled the underside of her fingers with mine and she tickled back. I rubbed her back a lot, too. Despite the morphine, her breathing was becoming alarmingly labored, although remaining between 20 and 24 breaths per minute. Her chest was heaving as though she was on a ventilator. Her right eye, which has been permanently edemic for some weeks, now, was open. Her left eye was buried in the pillow on which her head was resting. I think I asked her only one more time if she was "in pain", to which she replied, in a gargled sort of voice, "No," and, as well, if she was comfortable, to which she replied, with no gargle and somewhat louder, "no". In the meantime we kept each other company, I tried some more ice chips on her but they slid out of her mouth, she was no longer able to latch onto the eye dropper or the spoon for water, so I abandoned both of those. She was sweating a fair amount, although she didn't feel feverish, I fairly frequently lifted her head and wiped the sweat from around her face and neck.
I also talked with her, as I have been regularly throughout the last few days, about how honored I feel being her companion and caregiver, how much I admire her endurance and her fortitude, especially over the last few days, and did a lot of reminiscing about how "what a wonderful adventure" our life together has been...including "this very moment". I told her I loved her a few times, but, mostly I continued with my adventure-long habit of talking with love about our "unbeatable partnership". I also said, at least a few times, that if she wanted to continue on here for awhile, I would be with her all the way, no matter what, no matter how, no matter where. But, if she wanted to go, go, I've always known that was coming and I've always been okay with her own timing of her life.
During this time, contemplating her labored breathing, I decided to administer another .25 mL morhpine to her just after 0600. I waited for 20 minutes. It seemed to have no effect. I'd called Hospice earlier in the morning to report on what appeared to be my mother's quickly declining condition and underline that we needed Hospice's equipment company to deliver a hospital bed pronto in the morning. The Hospice RN reiterated that, although our regular RN was off today, another Hospice nurse would come by to visit and check on Mom later. By 0630, when it appeared that the second dose of morphine wasn't doing much, I felt we needed a nurse out to the house as soon as the office opened, as I wasn't sure that she even be able to take her next scheduled "palliative and comfort" meds by mouth and I would need instruction on how to deliver them, now...and, appropriately packaged meds for the job, of course. When I called Hospice again I also expressed doubt that I would be able to continue to care for her if the only meds available for home care were by mouth. I was frightened of the possibility that she would be thrown back into horrible pain sequences again. The RN responded that, as well as an RN visit and a nurse, she would send out the Hospice cadre, which includes the Social Worker. This clued me into the possibility of facility care until the end. My assumption (which was later corrected by the RN who attended Mom and me after Mom's death) was that this was confirmation of my fear that, whatever methods they had to handle her newly deteriorated condition, they weren't methods that could even be applied on the home front.
After the call ended, even though, by this time, it seemed likely that Mom was comatose, although I couldn't be sure, I told her about the call, explained that it looked like only a facility could dose her with her meds, now, and if death was closing in, it might be a good idea for her to leave before Hospice showed up. She was continuing to breathe like a machine under stress. She made no acknowledgment of what I said. Once business had been "discussed" I continued reminiscing with her, for a bit, mentioned that I would miss her when she finally decided to die, but that I was excited for the possibilities implicit in her new adventure. I told her I wished I didn't have to wait to join her, as we definitely have the word "adventure" by the tail, her and I, but to go on and pursue whatever happened with gusto and I'd be there later...no need to leave a forwarding address, I joked, I'd find her. Then, I stopped that and simply held her hand.
I also obsessively counted her breaths per minute, scrutinized each breath and its peculiarities (although each one was tremendously similar to the last). I also noticed that her right arm, which I'd been stroking and smelling (I'd lotioned her arms soon after her 0500 med dose; they were sooo dry and I realized that she hadn't been lotioned at all for over a day) when I wasn't holding her hand, seemed to be getting cooler, but I didn't think anything of this.
At some point I had unconsciously taken to breathing at her rhythm. I didn't realize this until I watched her take her last breath, breathed along with it, then stopped breathing when she did.
It was as though one moment the switch was "on", the next it was "off".
Although, even up to the moment of her death, I wasn't sure it would be today, or even tomorrow, I wasn't overwhelmed when she stopped breathing. I waited for a few minutes to see if she was going to switch back "on". She didn't. I called Hospice. Then, I threw open my arms, looked up and said, heartily, "Good-bye, Mom, I'll see you later." After that I went outside (force of habit) and had a "last cigarette" with her. You didn't know I smoked, did you? For obvious reasons, I haven't smoked like I used to since August of 2004 when she forgot that she smoked, but even her diagnosis of lung cancer in May didn't provoke me to cut out the habit. At any rate, if she was capable of being aware, she would be pleased.
There was, by the way, no "death rattle". The Hospice RN explained to me that this was because she had no fluid in her lungs or backed up throughout her bronchial system. "Her heart probably heart stopped," she said. Considering the last four days, heart stoppage qualifies as a good death. There was also no release of fluid or bowel contents. I was right when I decided not to give her the senna when I was directed. She had nothing in there. Other than looking pale and having blue lips, which turned blue after death, not before (I kept an eye on them during her final minutes), she looked exactly the same dead as she had alive. Her expression was calm, as though she was asleep. When she was dressed and laid out on the bed for the mortuary to pick up I noted to the Hospice RN that it had been years since she'd been able to lay on her back, specifically because of her lung problems.
I was surprised that the nurse asked for clothes, but she was one step ahead of me. I began calling my sisters after I called Hospice. One of them, who is coming up with another this evening, requested to view the body. Since Mom's body is being transferred to Science Care for scientific research, I questioned the need for clothes. The Hospice RN, who had been involved in me securing information on the possibility of viewing, reminded me that my sister would probably not appreciate viewing my mother under glass (which is the custom with the mortuary, here, who handles Science Care calls), naked. True enough.
I remember mentioning here, although I'm not going to bother to find it, right now, that I was curious to see how the cats would react to Mom's death. Turns out, The Little Girl has been sleeping with Mom and companionating her on her bed almost constantly for the last four days. She was there this morning, curled up asleep at Mom's feet. She didn't flinch when Mom stopped breathing. She may have been aware that Mom died, but she continued sleeping. My interpretation is that this was The Little Girl's way of paying tribute to The Honorary Cat that Mom was, primarily because of Mom's talent for sleep. The Little Girl awoke when the Hospice RN entered the room. The RN attempted to pet her and The Little Girl glared at her suspiciously and spit at her. This is her habitual visitor greeting, so I don't think she was being protective of the Mom's remains. She stayed on for some minutes, then when activity in the room increased, she left. The cats have not been looking for Mom. They are neither acutely interested in nor avoiding her room.
I have, of course, been spontaneously sobbing off and on throughout the last several days, partly because Mom's physical difficulties have been hurting my heart, partly because I have assumed that they have indicated that her death is near. In the meantime, I'm not feeling much different than I have felt throughout Mom's and my years and life together. I haven't yet been surprised that her bed is empty. I am, though, astonished that Mom seemingly wasn't believing that it was time for her to die. I remember mentioning here, more than once, I think, that I rather suspected that Death would take her by surprise. I think that's what happened. I think the breath laboring was Mom's hard "death work", as it is called in one of the "Final" books, but I think she was working to hang on. I mean, isn't that a requirement of being immortal? I wonder, if there is such a thing as "the afterlife" and it is anything like that portrayed on John Edward's dead people show (which Mom had rediscovered in the last few months...I still have four episodes backed up for her to watch...perhaps I'll run them over the next few days and imagine her watching side by side with me), I'm thinking she may not yet know she's dead. After all, her Dead Zone was a constant presence, in one way or another, in this house. Initially, it probably won't seem to her like anything different has happened, except I still haven't returned from that errand I was running. What's taking me so long?!?!
I don't feel her with me...rather, I strongly feel myself with her. I'm not wondering about her life here...I've got the inside scoop on that, right up to her final punctuation. I'm wondering, really, now, about the nature of death and, if there is an after death "nature", what her experience of it is. She's always up for new experiences. So, I'm just wondering...
...take advantage of every opportunity, Mom...I'm expecting some really good stories when we meet again...
P.S. Oh, and, you haven't heard the last of me, here. The Mom part of this journal may be tripping the light fantastic, now, but the me part is sturdily here...I even have a few backed up opinionated posts about various aspects of caregiving and medical treatments that I wasn't able to polish off in the last week. They will be polished and published post mortem. And, well, you know me...although today marks the end of Mom, it doesn't mark the end of Mom & Me and the effect our 15 year (practically to the day) Adventure in Living Together has on me.
Now I'm beginning to wonder...
...what is behind the ever popular obituary phrase, "S/he died peacefully at home." This morning my mother is immobile, but I don't think she's particularly peaceful. I'm hoping she's not in pain, but when I awoke at 0430 and headed in to see her, she had dislodged her cannula and was attempting to scratch at the side of the small wooden file cabinet that is doubling as a "night/paraphernalia" stand by her bed. Knowing that compazine takes 45 minutes to work and metaclopramide only a half hour, after replacing her cannula, waiting for a minute while she pinked up and counting her breaths per minute (22-24, not sure), I gave her 5 mg metaclopramide smashed in cherry jam. She seemed to be able to swallow it. I hope she did. I'm also feeding her ice chips, although those are slipping out of her mouth, so I'm alternating a spoon of ice chips with a spoon of water, at which she sucks greedily.
After giving her the metaclopramide I waited a mere 20 minutes and gave her .25 mL of morphine and 500 mg acetaminophen crushed cherry jam in a spoon. She's taking a breathing treatment now. Although that may seem punishing, considering the position she's in, I'm hoping it will help soften the clogging in her nose, which is excessive. I'm assuming she's getting some oxygen. I boosted her to 7/lpm on my own last night, just in case.
When I ask her questions she moves her head a little, tries to pick at my pants and smiles. I'm not sure what that means. I have to guess.
I wish she was in a coma right now. I have no idea what she wishes. I just hope she's not in pain. I'm not sure I'd be able to tell, anymore, if she was.
Maybe. I can't. But, probably, at this point, I'll have to.
And ending on a sour note...
...the good news is, my mother's spirit is returning. She fought diaper changing exactly the way she fought it at the facility. With a hospital bed, it's pretty easy to get past that. On a flat twin that comes up to the middle of my thigh, it's not. Her refusal to stay in one position and her persistence in fighting me when I attempted to roll her meant that we went through four diapers in order to get one on. I gave up on trying to change out the soaker pad. Luckily, it wasn't soaked with urine, it was soaked with the fluid from cleaning pads that got caught under my mother's considerable belly when she'd decide to roll back while I was working on her. My back, of which I have formerly been so proud, is shot for the night. It was so strained I was unable to position her as comfortably as usual. If she doesn't make it through the night, it won't be because of me, the position isn't that bad, nor is she dangerously uncomfortable, but I know she's not happy with the position in which I had to leave her, and I know she doesn't have the strength, either, to change it.
I had planned to change out her pajama tops; they've got drool all over them. Unfortunately, I no longer had the strength left to prop her up and change her pajamas at the same time. I also didn't have any good cheer left and couldn't face reading to her, so I told her she'll just have to lull herself to sleep on her own. She took it like a champ.
I can't wait until that hospital bed arrives. I can't wait until the aides are scheduled. I doubt that two visits a week is going to be more than minimally adequate, it may even be irritating, in fact, but I'll take what I can get and try not to feel too nasty about the dearth of available help. I'm seriously thinking of hiring someone...so much so that this afternoon, when I ran out to get the kind of diapers we need, I stopped by Starbucks and inquired after the woman I met who's a professional caregiver. Turns out, she no longer works there. She's been hired as a private, live-in caregiver for a local family. Good for her. Bad for me.
I swear, after tonight...I never thought I'd find myself thinking this, but, if she is going to spend the rest of her life bedridden, she might be better off in a facility. While it's true that our relationship can't be beat, I suspect that, even with the problems I encountered with the various facilities in which she's stayed in regards to technical care, they can beat me to the punch...when they give that care, of course. That's the problem. And, frankly, I don't know if I have the energy left to, once again, monitor institutional care for her. I'd be living there, again...and we'd both probably die there.
This is beyond the pale. Whatever was I thinking when I optimistically chirped, "Yes. I can." ??????
I finally went into my email...
...and noticed comments and a note from four people, regular readers all, letting me know Mom and I are in their thoughts and they are all here for me...and I so much appreciate this...I want to write each of you back and express my gratitude. I will...in awhile...not sure when...
No macaroni and cheese tonight, just ice chips. She tried to get up, has tried several times, in fact, but can't hold herself up. She bends over so far I couldn't see putting her in the wheelchair, even though she was insistent. I am afraid she'll fall out. I told her, as gently as possible, each time she told me she needed to get up, that this simply wasn't possible with only me there. Her request became so repetitive that it reminded me of when my Aunt Jean and my maternal grandmother, both in the depths of deep dementia, clamored to "go". I decided to ask Mom if she remembered this, which she did. Then, I asked her if she thought her insistence on getting up was like that because it seemed so to me, since she didn't seem to be able to tell me why she wanted to get up.
"To go..." she said...
...and I laughed, and her eyes twinkled, she got the unintended joke she'd made...
...then she pointed to the west and nodded furiously...
...and I got the non-joke part! She'd been wanting to go to the bathroom!
I told her that this would be impossible, which was why she was wearing extra strength diapers instead of her usual paper underwear. I explained that there's no way I'd be able to swing her around from bed to chair to toilet and back, and change her underwear, since she couldn't even sit up. "Mom," I said, "you'll have to go in your diapers."
She shrugged, nodded and sighed.
Actually, I'm rather sure it's not a bowel movement. She's drunk little and eaten less. About an hour and a half before her insistence on getting up came to a head I'd given her a compazine suppository when I changed her diaper. She'd vomited in her sleep and medication time was approaching. I knew I had to do something or she'd end up in horrible pain, once again, because she wouldn't be able to hold down the acetaminophen. The morphine, of course, wouldn't be affected. So, I called Hospice, the RN on call got the order for the compazine and that was that. I had to put off the acetaminophen by almost an hour, just to make sure it "stuck", since it takes the compazine 45 minutes to go to work fully. She had to endure a few minutes of pain, but it wasn't horrific, or incredible, or even annoying pain, it let up quickly and, if I hadn't been asking her every half hour or more, throughout the day and evening, if she was in pain, I never would have known she was experiencing it.
She's gotten really annoyed with me asking her if she's in pain so often, but I have to. She would only cop to pain on her own if it was already "incredible", and by that time, anything that I could give her to work on it would take at least 20 minutes to take effect. Anyway, she decided she didn't want to acknowledge that question, anymore. I finally scolded her for this, explained why I was constantly asking her, and she understood. Now, when I ask her, she responds.
We've spent the evening just visiting in her room, talking, and reading. At 2300 she decided she'd like to nap. I told her that was fine, and I'd be back at midnight to change her, refresh her meds, and then I'd probably lay down until her next dose was due. She looked disappointed, so, I don't know, we may read for awhile more.
Oh, something curious and interesting: I put a breathing treatment on her and since that makes communication between us fairly difficult, we usually just sit and keep each other company during the treatment. At 2150, I think it was, I wrote the time down, she said something through the mask with such urgency that I figured I should take the mask off and have her repeat it.
"It's a beautiful boy," she said, with what delight she could muster.
"Oh! That's wonderful," I said, "whose is it?"
She looked at me like I was some kind of idiot, then turned away. Obviously, I'd gotten the interpretation wrong. Then, I realized, she wasn't talking about someone having a child, she was mostly likely talking about someone who was visiting her, someone she expected to be other than "a beautiful boy". So, hmmm...I guess the visits have begun again, and they're including those of whom I'm unaware. I wonder who else will pop up. I wonder if she'll clue me into their presence. I hope so.
I still have no idea where we are or where we're headed. I plan to ask our Hospice RN, tomorrow, if all this that's been taking place over the last few days sounds like the "active dying phase". It does to me...but, I've heard, before, most recently at Dethmama Chronicles and Dancing With Rose of people entering and leaving that phase several times before they they follow it through. So, I guess, it would be prudent, until Mom and I have gotten our bearings, to refer to this as Active Dying Phase I.
Med, and maybe, story time.
I just realized that I apparently clicked the "draft" button...
...instead of the "publish" button on the immediately previous post! I've been off the computer all day, until now, enduring "Trial by Elder". At her 1010 breathing treatment I decided to get her up, as she was restless in bed. I asked her if she might want to go out to the living room for awhile. She said, in halting speech, that she thought that would be a good idea. Surprise, surprise, I was able to lift her and swing her from the bed to the wheel chair. When she's weak she doesn't fight me, so it's somewhat easier than when she's strong.
She was in to drinking this morning...she actually seemed thirsty. She isn't able to get her hands to work for her...she's still pretty shaky from being so dehydrated. But she drank watered down OJ, water, lots, for her, and some ginger tea. She also decided she was hungry and ate most of a Costco croissant, which I ripped and fed to her bit by bit. She showed interest, off and on, in a Christmas movie. She looked around a lot, too...as though she was emerging from a 40 day spirituality fast in the desert. She nodded off, too, often, and then would awaken with a start a few minutes later. She drooled a little. Every time this happened it brought her "to" and she'd attempt to wipe her mouth. We talked about dinner as though it was a normal day. I suggested those Stouffer's mac & cheese entrees. Her eyes lit up.
By the time she went back to bed her hands were moving better, although not well, she was speaking better, although not well, and she had regained enough stamina to try to fight me when I lifted and swung her from the wheelchair to the bed. Good sign for her, not for me.
In anticipation that, if she regains enough strength to help me help her transfer, it will be at least a few days, while she napped I headed out to get the legitimate type of adult diapers. I found some wrap arounds that are fitted around the legs which are perfect for her. I got two different brands to try. I'm sure, at some point, we'll go through all of them. I also found some cheap soaker pads, which is good. When she's bedridden two is not enough.
It's definitely much harder to change her in bed than it is to have her able to stand and sit so I can pull underwear up and down, so, in order to help with that, while she was in the living room, in between bites of croissant and sips of liquids I rearranged her bedroom so that her bed sticks out from the wall and I can get around it and move her this way and that from both sides. We'll be getting a hospital bed, tomorrow. I was considering having it put in the living room, but, her interest in moving around today, even if it was only in the wheelchair, cued me that it's probably a good idea to keep rooms separate in order to nurture her interest in moving from room to room. I imagine a time will come when having the hospital bed in the living room will be a good idea. Unless this evening, when she awakens from her nap, tells me different.
So, That Girl is still with us, and doing better than yesterday, although not hugely better. I considered titling this post "She's Not Dead Yet," but I think I did that once, already.
I'm still pretty much ignoring the other "technical" sites. She obviously isn't moving much. Yesterday she got none of her usual meds except breathing treatments and something else, I think, again, I can't remember what. Today, so far, I've gotten two iron pills down her, which clearly made a difference in her appearance, her Nitrofurantoin, which I consider really important, and her Protonix in order to reduce stomach acid and stave off nausea. I've been keeping up with the breathing treatments. She's felt a bit nauseous twice today, but it faded quickly. I think she might have expelled a little something from her stomach while she's been sleeping, but that might also be blood from her nose; the high oxygen flow is hard to negotiate, even with the humidifier attachment.
It sounds, through the monitor, like she's becoming restless. Maybe she's ready to awaken. Let me check...oh, no, she's sleeping, I guess it was just one of her frequent-of-late generalized groans. Nope, it sounds like she's moving...better get going.
Our Hospice RN is probably going to visit tomorrow instead of Tuesday. I also understand we're up for aide visits twice a week, now. I'm not sure how I'll use them, but I'm sure I'll find something.
I can hear Mom talking to The Little Girl, who has been sleeping with her. I'm smiling...and on my way.
One of the practices of Hospice...
...at least one of the practices of our Hospice RN, is that when a patient chooses a behavior, such as refusing meds, or water, or food, that may or will lead to irreversible weakening and probably to death, if the patient is lucid enough to understand, the consequences are reviewed and the patient is asked if the probable consequences are what they want...and asked, as well, one more time, if they wish to reverse their behavior or continue.
At Mom's 0015 med visit I didn't bother with this when she took so little water. She was clearly very drowsy. However, at her next med visit, which I have just finished, she took a little more water but still not much, her eyes were open, she was following my movements well and was clearly able to tell me that she was not in any pain and she was comfortable. So, I figured, it was worth a shot to explain the consequences of not drinking more water and not eating. After her meds and her breathing treatment I was as quick and gentle as I could be about it, but I also didn't beat around the bush. I told her that she had had very little to eat or drink in the last 36 hours or so. I told her that the consequences of this, especially of refusing liquids, were that she would weaken, soon irreversibly. Did she understand this?
She said, "Yeeess."
"Will you drink some more water?" I asked.
She didn't verbalize, but she refused. She was clearly able to drink water by sipping through a straw, as earlier I had managed to give her about four ounces, so I waited for some minutes, prompted her, placed the straw between her lips and into her mouth several times, but she continued to refuse to drink more.
I told her that the irreversible weakening from lack of fluids would likely bring on death. "Is that what you want?" I asked.
"No," she said, a bit louder than her last response.
I tried to get her to drink more, but she refused.
Then, I got an idea. I told her that Hospice's policy is not to force liquids on her. I explained that if she wished, though, she could sign off Hospice, be admitted to the hospital and be rehydrated intravenously. I asked her if she wanted to go to the hospital.
She said, "Yes."
Just to make sure she understood what this meant, I asked her if she wanted doctors to put needles in her arm and give her fluids intravenously.
She responded with an even more definite "no" and mumbled something that sounded like "sleep".
"Do you want to sleep?" I asked.
She said, "Yes."
I'm a little conflicted; maybe I worded my questions and information wrong, but I'm not as conflicted as I normally would be. When she doesn't want to be fooled with at a hospital she pulls out IVs. I remember her doing this at her last visit in May and have noted, in the parts of the chart I received for that visit, that she did this more than I was aware at the time.
So, I'll wait another four hours or so, check on her again, give her more meds to keep the pain away, see if her thirst prompts her to drink...and maybe ask the questions again, maybe not.
Although she seems lucid to me, I don't know whether she actually is or whether she is disoriented. Disorientation is not a typical symptom of the morphine dosage she's receiving but, considering everything else, it might be a symptom of everything combined, right now. In addition, when she is fully functioning at the level that is relative to her, she is always adamant that she does not want to go to the hospital and does not want to be "poked and prodded". She voiced this decision a few days ago when I thought she had pneumonia and asked her, explicitly, how far she wanted to go to address it. Antibiotic treatment was all she wanted. Nothing else.
I'll probably call Hospice the next time I check on her and medicate her, whether or not I ask her the questions, just to run my decision to keep her at home by someone. Still and all, it is apparent and I am aware that I am primarily responsible for the decisions about what to do, now, and the interpretation of her motives and responses. If her behavior continues as it is and leads to her rather quick decline and death, I will have been the executor of what I understand to be her wishes. Yes, I'm aware that an offshoot of that word is "executioner" but, other than having known, for awhile, that, just as we all cooperate in each other's creation and birth, we also cooperate in each other's death, I do not consider myself her executioner.
The scheduled 0415 visit was postponed until 0530. I apparently turned off the alarm in my sleep and didn't awaken until 0520; but her breaths per minute and her lack of pain were the same as they have been since around 1700 yesterday.
I've got the monitor on. I think it's okay for me to go back to bed and sleep. I've moved the alarm to the foot of my bedding area, so I will have to rise up to turn it off.
I'll probably set it for about 0945...it seems that she can go for somewhat over four hours between meds and not experience pain or labored breathing.
In case you're wondering why I'm recording this for the world to see...it's not just to enhance my eventual memory, this time. It's to shine some light on the process of coaching someone's life through to their death. On some level, this is what we're dealing with, here. I always wonder about this when I hear someone has died on Hospice. This is what it's like, folks, at least for Mom & Me. It's not a straight shot. Sometimes she seems nearer to death. Sometimes to life. I still have no idea how long the woman will opt for life over death.
Sometimes when my mother snores...
...despite her swearing that she doesn't snore, her lips loosen and it sounds like softly blowing air through a running electric fan. I'm listening to her doing that right now on the monitor. I should be trying to get some sleep before her next morphine/acetaminophen visit at 0415. But, I can't.
It didn't occur to me until this evening that this might be it...That Girl may have found this afternoon's pain too ridiculous to consider enduring again and has decided to blow this pop stand. I may be wrong. She did, after all, endure it. She's been a trooper while Hospice and I have been figuring out how to allay her pain. Her disinterest in liquids, though, continues. I don't blame her. The bits of water I was able to coax her into taking here and there through the afternoon and evening all came up at around 2200. It was difficult to get her to accept the acetaminophen smashed in cherry jam at 0015. I may not have been able to, but for reminding her that the acetaminophen and the morphine are the only two things that are standing between her and pain. I'm sure it's no fun for her to marshal the energy to take the acetaminophen, either. The morphine is easy, of course...just shoot it into her mouth under her tongue and that's that.
She seems doped up but I'm not sure that's what's really happening. Despite what seems like a lot of morphine, one of the nurses told me today that my mother is actually, still, on what would be considered a low dose. So, you know, maybe she's removed herself a bit to consider whether it's worth it to continue her life. It's hard to tell. She has a history of rallying but even the most persistent rallier finally gives up and goes on. And, I'll tell you, if I had experienced the pain she had this afternoon, I'd seriously consider ditching this place.
Just in case, since she continues, at this point, to be lucid, even though she doesn't look it, and, as well, continues to deliver one word, barely audible snips at me when I move her around on the bed, as I must on occasion, I decided to say my good-byes to her. Couldn't hurt, I figured, just in case. If she'd not dying, yet, (I can't tell you how many times, today, I've contemplated what the difference is between living and dying and am completely puzzled) then I can always re-greet her, then say good-bye again. If she is, though, I wanted to make sure I got a chance to say them.
I was short and sweet. I could see she heard me. Then she closed her eyes. I expect I'll be rounding her up (literally) again at 0415. If she's leaning toward leaving I kind of think she'll still be here then. Her breathing sounds like it. Don't ask me what I mean by that, I can't tell you. At 0415 she'll get another breathing treatment (which I've pretty much been forgetting most of the day, in the dazzle of all the other events), another dose of acetaminophen (I may drop down to 325 mg this next time, although I'm not sure, yet) and morphine, I'll need to change her then so my visit will be annoying, I'm sure.
I'm not sleeping in her room. She doesn't seem to need me in there constantly and, despite my exhaustion, I am preternaturally alert to the monitor. I'm surprised, actually, that my preference is to sleep with some distance between her and me but, if I was in her room I wouldn't be able to sleep at all.
So, you know, this night is still a mystery for me. I'm pleased that she's not in the hospital, though. I'm sure she is, too, although, ironically, she's receiving about the same amount of man-handling from me as she would if she was hospitalized or facilitized. I'm also pleased I'm here. And, I'm pleased she's still here. I told her, though, it's up to her, when she wants to go.
I feel as though something incomprehensibly universal is happening in her room, tonight. Since I can't comprehend it, I'll leave it to the universe.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson