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.
My mother is sleeping comfortably, as I write.
We're coming up on 12-hours-sleep so I just checked in on her, again. She was close to consciousness, thus, me leaning over her aroused her. She kicked off her covers sometime in the night, which is unusual for her, but she's been sleeping that way since I awoke much earlier. She's breathing evenly. After I confirmed with her that she wanted "another hour or so", she coughed lightly before closing her eyes, but that's not unusual. Her speech doesn't sound "tongue thick". She doesn't feel fever-warm.
As I was exiting her room I remembered something mentioned by the Hospice RN with whom I consulted during her last bout of pneumonia. I looked it up and, sure enough, it's been just about four weeks since her last bout. Mom might be fighting off a little cold, instead of the pneumonia I'm considering. Considering that her lungs are highly compromised, though, no matter what she's handling in there, it could set off another episode of pneumonia. I won't be able to make a sturdier determination about how she's doing until later. But, it seems uncanny that, if this is another bout of pneumonia, it's arriving "on schedule".
Mom seemed in a good mood, not overly tired (wanting "another hour or so" is not unusual for her) and clear-eyed. So, this could just be an obvious extension of her inevitable physical decline. At any rate, I'll keep my spirits up and tease her, throughout the day, about it being my birthday, not hers . Birthday teasing like this is one of our family traditions. That should keep her on her toes.
Later. Oh, yeah, and, Happy Birthday! To me!
Pneumonia X 3?
I'm not really sure if Mom's developing pneumonia, again, but it's possible. Aside from being very tired and more hazy than usual, lately, today she was even weaker than she has been. As well, throughout the day she's seemed to be developing that "thick tongued" speech pattern that tends to characterize bouts of illness, especially pneumonia. I decided to take her temperature this evening, out of curiosity, since it's been running normal, for her, around 97.6, for days on end. Sure enough, at 2239 it was 98.4, although it dropped to 98.0 a little after midnight.
Remembering my previous decision to ask her if she wants to be treated "the next time" she develops pneumonia, I initiated a discussion about this before Mom retired tonight. I explained my observations and told her that I'm thinking she might be developing pneumonia, again.
Her immediate response was dismissive: "Oh, I don't think so." Her eyes glittered denial.
"Well, Mom, you might be right, I might be wrong. But I'm telling you this just in case..."
"Just in case what?!?" Her eyebrows arched.
"You know, on Hospice, you don't have to be treated for anything if you don't want it. Everyone's on Hospice because they have an underlying illness that isn't being treated, anyway. In your case it's your lung cancer. Sometimes, because of the underlying illness, a person's quality of life becomes so poor that they'd rather not be treated for other illnesses like pneumonia because, well, frankly, pneumonia, in particular, allows for a much easier death than some other conditions."
She nodded. Although I was a little surprised, she was following me with keen interest."
"So, you know, last time you had pneumonia I was unprepared for them asking me if you wanted to be treated. I went ahead and answered on your behalf and said, yes, let's give you the antibiotics. And, you got better, really fast."
She was nodding.
"So, this time I want to be prepared. If it turns out that pneumonia is likely, Hospice will ask if you want antibiotics in order to try to get better. Do you?"
She looked at me as though I was losing my mind. "Well, of course!"
I mocked a physical back-off and grinned. "Okay, okay, I just wanted to make sure you and I are on the same page. So, you want to be treated this time, if you have pneumonia."
She reared. "Well, wait a minute. I don't want to go into the hospital! I don't want everyone poking around at me to see what's wrong! No!"
Oops! I used the word "treatment" instead of "antibiotics" when I restated her position, I realized. For Mom, each word has a completely different context. "Oh, no, I get that, Mom, and so does Hospice. They won't put you in the hospital. If the antibiotics don't work, we'll just ride it out the best we can. No hospitals. No poking. No instruments of torture. I promise."
"Oh, they'll work, all right," she said.
I couldn't help it. A small smile escaped my lips. She's probably right, at this point.
"I can't imagine why someone wouldn't want antibiotics," she wondered, after a few moments of thought.
"Well, Mom, everyone on Hospice has something that can eventually kill them. Sometimes, those deaths can be pretty hard and painful. Especially if the person's quality of life is very, very poor, it's not uncommon for someone to refuse treatment for an opportunistic infection rather than continue experiencing such a poor quality of life."
"Well," she declared, "there's nothing wrong with the quality of my life! I'd say it's very good!"
"Yes it is," I agreed. Yes it is, dadgummit, which is an expletive her father used to use that she has lately resurrected frequently and with glee.
So, I've got my marching orders, for the near future, anyway.
Yesterday was another Sleep Day.
The last was 10/11/08, so it's been a day over two weeks since the last. The details are posted at Life After Death and The Dailies. The links will take you directly to the specific posts.
My concern is that this sleep day fell a day after giving her furosemide (which seems to be working in it's usual manner, slowly) and two days after upping her lisinipril, so I took two BP measurements yesterday but her blood pressure seems to be only slightly affected, if at all, from these two. She does seem to be losing some of the water build up, but I expect this will be more apparent when I awaken her today, which I plan to do at noon, despite all the sleep she had yesterday. What good is a Sleep Day, after all, if you have to make up for it the next day? I figure, if she feels the desire to make up for it, she'll awaken on her own. So far, she hasn't.
I have one concern about this particular sleep day; she had trouble holding herself erect, both in the morning and in the evening, although her appetite was great during her short foray into wakefulness during the evening, her mood was good and she was chatty and alert. So, my night was a bit tense...I had trouble sleeping through more than a couple of hours at a time; and this morning I've checked on her obsessively, but she seems peaceful and her breathing is good. We'll take it at her speed, today, and see how it goes.
Yesterday, obviously, I had a lot of time to mentally review how "things" have been going. I think her aphasia has increased slightly, but these episodes of not being able to pick the right word seem to happen when she is tired, which may not be much different than usual. I'm wondering if her days of sleep and inability to hold herself in, what for her, is an erect posture, are due to her tumor's further encroachment on her right lung or if we are seeing some signs of metastasis. She continues to experience no pain, though, so that's good.
I'm a little more tense than I was during and after the last Sleep Day, but not a lot more. Today will probably be a fairly quiet day, although I'm not really hazarding any guesses. The day after her last day she was awake her usual amount. My concern resides around the possibility that she might end up having two sleep days in a row. We'll see how it goes.
No, Mom didn't die last week.
No detectable changes, in fact, to anything regarding her life, except that over the last week or so she's been up a bit more than usual; meaning, an hour or so each day. Her health profile continues to gently waft. Over this weekend she's experiencing some significant (for her) swelling which finally, yesterday, affected her ability to breathe, so I kicked in "a whiff" of furosemide last night to address this. It seems to be working. Her night-sleep has been noticeably more restful than her nap-sleep yesterday. I've been continuing to faithfully (and daily, despite having to occasionally make up a lost day, here and there) post over at The Dailies and Life After Death, so you can always keep up with just the facts, m'am, at those sites.
I've been a bit, hmmm...the only word I can think of to describe it is "low", emotionally, though, for at least as long as the break between postings in this journal, which is why I haven't posted. I haven't been sure what to make of my mood. I've been overwhelmed by peculiar images every time I think about or meet someone, anyone, any age, in public or in representation. I suddenly see them aging into Ancienthood; what they'll look like, how they'll move, how they'll sound, how their attitudes and outlooks might change, how they'll die. It's a unbidden, unsettling experience. I've even been experiencing this with our cats and myself. Thus, I've been operating under a thin but, probably, noticeable veil of sorrow. I find myself leaking tears at the oddest of times.
I think I'm probably doing some (more, as I've done a fair amount of this throughout the years of my companionship of my mother) advance grieving for what will be the absence of my mother in my life and, as well, the eventual absence of myself in this life. I seem to be expanding that grief into a generalized despair over the human condition. I'll be standing in a check-out line at the grocery and suddenly the clerk is thirty years older and the same amount more frail. I look around and my compatriots in line, no matter how young or old, have aged into their final years. I'll be watching a movie or television be stung by the awareness that everyone I'm watching on screen will be dead, one of these days, as I imagine them aging toward death.
I haven't lost my sense that life gets better as one ages, even into my mother's category (assuming, of course, certain surprising and felicitous circumstances); and, yet, an overwhelming sense of loss clutches at my heart and any points I've ever considered in favor of the relentless birth to death cycle within which we're locked become illusory. Terms and phrases like "evolution", "renewal", "destruction into creation" lose their optimism and everything of which I'm conscious seems to be bubbling in a disinterested cauldron of death. My mother's interest in Touched by an Angel has not abated...we still watch at least one episode a day, if not more, at her request. You'd think this extremely hopeful series would pull me out of some of my mordant consideration but, instead, for a good 15 or 20 minutes after each episode I'm despondently muffled.
This is why I haven't posted here, lately. I can't seem to move past this melancholy:
- Despite the fact that life continues, objectively, on a fairly even keel, here, even as the energy I put into observation of and tending to my mother increases bit by bit on a daily basis;
- Despite that I've been "engaged" in a stimulating conversation about songwriting with a long time cherished friend;
- Despite that I've developed an inordinate attachment to the movie Iron Man (who I also imagine on his death bed), which I finally purchased because I can't seem to get enough of it (my mother is not equally fascinated with this movie, but she is, so far, mercifully indulgent of my interest). I am a fan of super hero movies but don't usually collect them. The exception is my all time favorite super hero movie, Unbreakable, one which Mom enjoys; so my interest has resparked and I've been spent some time contemplating the super hero phenomenon, and yet...
- Despite the fact that Mom and I have become involved in an intense rifling through our "Really Old Movie Collection" (the ones that are 50 - 70 years old) and are immensely enjoying our viewings;
- Despite the fact that I am optimistic about the upcoming Presidential election, especially in light of the monstrous stroke of Democratic luck embodied in McCain's selection of Sarah Palin, and Colin Powell's endorsement of Obama and McCain's increasing dissolve into visible jitters as election day approaches. I've already voted and felt so confident about Obama winning that I decided it was safe to "vote the issues" and voted for an independent candidate as a statement of my stand on several issues that the Demo/Repub squaring hasn't bothered to address. At this point, I am so confident that Obama will win and this will be "a good thing" that I am in agreement with a panelist on the latest Real Time with Bill Maher, Matthew Dowd, that if Obama doesn't win it will be because another election has been stolen from the US electorate...although I think Obama's lead is so obvious, now, that any attempts to steal it will fail.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson