Apologia for these journals:
They are not about taking care of a relative with moderate to severe Alzheimer's/senile dementia.
For an explanation of what these journals are about, click the link above.
For internet sources that are about caring for relatives with moderate to severe
Alzheimer's/senile dementia, click through the Honorable Alzheimer's Blogs in my
links section to the right.
I noticed, yesterday morning, while I was on a mad, prolonged errand dash, that the leaves, here, aren't turning as quickly as usual. Even in our yard some of our younger trees haven't yet turned. Throughout town a good half of the leaves on any particular tree have turned and are dropping while the other half is still stubbornly green and clinging to branches. The weather has finally turned cooler by about 15 degrees, give or take a degree. I'm curious about the leaf phenomenon, though, because my understanding, which may be incorrect and which I'm not going to check, is that leaf turning is triggered by sun angle, which, of course, hasn't changed because of global warming, even if average temperatures have. I notice that our temperatures are due to cool more over the next week, but the sun continues to illuminate every nook and cranny with its laser-sharp rays.
Over the last two days Mom's continued in "low energy" mode. These days, as reported over at Life after Death Sentencing have been almost exclusively wheelchair days, although Mom felt better yesterday, overall, than she did Wednesday. If her body was attempting to fight an infection it seems to have been successful. I am assuming that the addition of garlic as a natural antibiotic may have helped.
When I'm not on errands or tending to Mom I've been in a bit of a caregiver stupor. It's not that caring for Mom is becoming "harder" so much as that I'm finding myself distracted and apparently needing to be distracted. My interaction with Mom has been pretty business-like, despite the amount of time I spend involved with her, especially since we're using the wheelchair a lot and her breathing has become more labored. Keeping it "strictly business", frankly, keeps me from becoming agitated; it seems as though agitation is lurking just beneath my carefully distanced surface. Mom not only doesn't seem to mind, she seems to be caught up in a somewhat more intense reverie than usual. I'm spending a lot more time than previously reminding her to drink her fluids, continue eating the food I put in front of her, blow her nose, guessing when she needs to go to the bathroom...I'm sure this drill seems familiar to those of you who've done this.
The Hospice MD is due for one of her regular monthly visits, today. I'll report back, but I expect that her observations will confirm that we're in a holding pattern, at the moment, echoing the title of this post. It seems appropriate, this year, that we're in a lingering of the season.
I'm not sure what our direction will be, from here, and I'm not worried.
I've got some calls to return.
Mom's down for a nap, already.
She's been down since 1430, which is a little early for her, even considering that she arose on her own at 1130, but, considering, as well, how tired she's been, lately, and that she was so tired after the Hospice RN's visit, that she decided she wanted to be wheeled into the bathroom and into bed, "I'm just too tired to walk," she said, I figured, hey, if I was 91 and had lung cancer, maybe I'd be tired.
So, considering that today is blessedly quiet, I'm thinking maybe it's a nap day for me, too. I can't remember the last time I had a nap, although it's probably only been a couple of months. I'm not usually a nap person, actually, but, today, I could easily disguise myself as one.
I wanted to get a few things down, though, from the RN's visit, today.
- It seems that my concern over my mother's BP is likely not indigenous to my mother's actual BP, which has wavered little since Hospice began taking it at the end of June. The RN recommended that I slip back from 20 mg of lisinopril at night (her only daily dose, to which I boosted her on 10/25/08 from 15 mg). Truth is, I hadn't noticed that the extra 5 mg was doing much for her BP, but it's possible that it is one of the ingredients responsible for her increased tiredness, of late. Whether it is or not, 15 mg is just fine, thank you, so, as of tonight, we go back to that.
- My concern over her rising Blood Glucose readings was also addressed. Changes are excellent that the initiation of a daily, evening dose of 4 oz prune juice is responsible for the overall rise. But, since this dose is necessary to manage her evacuation profile and since Mom's diabetes continues not to affect anything else, the nightly prune juice is recommended and continued diabetic management consisting of a 3rd glipizide in the evening, if necessary (which has been necessary over the last half week or so), is fine. I don't know why I didn't think of the effect of the prune juice. I know that fruit juices are notoriously high in sugar. I use a sliding scale of her morning O.J. to water to control her blood sugar throughout the day but I forgot about the prune juice at night.
- Regarding my mother's recent (a bit less than a week) bouts of lethargy: The RN said this is common with cancer patients. For a number of days they'll feel good followed by a number of days when they don't feel good. You'd think this would have been obvious to me. This is the pattern my mother has been following for some years now. I can't say I've been particularly stressed by it, but every time we fall into one of her fallow fields, I automatically, and autonomically, as well, begin looking for reasons. Not that my searches are not recommended. But, if I look around a bit and can't seem to find anything that looks like it's in a stage of development beyond where we are at the moment, chalk it up to the typical cancer pattern and forget it. Good advice.
- The subject of the Detox teas, which contain licorice, and, as well, the Egyptian Licorice tea my mother loves so well, was broached, again. As part of a more general conversation I mentioned our former use of these teas to the Hospice RN (one of our regular subs when our regular is OOT, which he is, at the moment). Immediately upon mention of the Detox teas, she responded, "Good!" She's familiar with the teas we use. I continued, though, explaining that she's been off them for a little over a month because of our usual RN's, and Mom's Hospice MD's, concern about the licorice content, which slows the heart beat. I mentioned that a couple of weeks ago, while cleaning up the Dailies site, I'd noticed that two years ago Mom's heart was 20 bpm slower than it is now. Taking into consideration the breathing meds, which raise one's heartbeat, I suggested that reinstating the Detox tea might not be a bad idea; I wondered out loud if it might not do my mother some good to include an agent in her diet that slowed her heart beat a bit. The nurse said that reinstating the Detox teas would be fine, but maybe every other day rather than every day. It seems, even the package (which I hadn't noticed) advises against long term daily use. So, I think I'll be doing that, again.
- A few miscellaneous observations which were covered during the appointment:
- Mom is, occasionally, now, (within the last two weeks) eating a bit less at dinner than before. This doesn't preclude dessert, of course. It's become such a habit with her that if I forget to bring out a dessert, which often happens if she wants to put it off, a bit, after dinner, I am vociferously reminded that dessert has not yet been served. But, overall, this is an expected development in the process of a terminal illness. So far, she's not skipping meals but, you know, it could be said that the lowering of her appetite has been going on for a couple of years, since it was a few years ago when lunching dwindled to nothing.
- There were some "crackles" in her right lung. Not unusual, but a good idea to be aware that of them, which indicate fluid build-up. This could be the cause of her labored breathing, of late, combined with the difficulty of getting three breathing treatments in, since she's been sleeping a bit more over the last week.
- Regarding the breathing treatments: I can count down the four hour intermediary period from the beginning of one breathing treatment to the beginning of the next. Because I'm aware of the particular virulence of Ipratroprium, one of two ingredients (the other being Albuterol) in my mother's breathing treatments, and because the treatments last for a good 15 minutes, I was counting from the end of one for 4 hours until the beginning of the next.
As well, I can "fudge" a half hour early on the dual breathing treatments, assuming I'm using the Ipratroprium. I can also choose to use only the Albuterol if I feel the need to administer one earlier than the 3.5 hour interim. Albuterol can be administered more often than Ipratroprium without risk.
- The RN was in favor of my reintroduction of a 1,250 mg (500 mg concentrated, which equals half a clove of garlic) garlic tablet to my mother's supplement regimen. I explained to her that I'm adding it for its antibiotic properties and she nodded throughout my explanation. If I feel the need to boost her dose to two tablets a day (equivalent of a full clove of garlic), that should be fine.
- I asked if I should also maybe reintroduce the vitamin E. She said that it is primarily an antioxidant. Since my mother's diet and supplements are loaded with antioxidants, I decided there's no reason to further irritate my mother with yet another pill.
- The nurse also reconfirmed what I learned a little over a month ago about the contraction in time between bouts of pneumonia. Looks like the last opportunity passed us by without taking advantage of us; but, with the continued crackling of Mom's lungs and her increasing tiredness, I remain on alert.
During this discussion I told the nurse about the conversation Mom and I had about whether or not to treat this last possible bout of pneumonia, which I held with Mom on a just-in-case basis. I assured the RN that, each time we confronted yet another possibility of a bout, I would reinstitute the conversation, in order to keep on top of Mom's wishes. I was surprised and pleased to note that the RN diligently noted about this in her online files.
And, with that, she said, I think I'll see if I can steal a nap this afternoon.
Yes, Mom and I watched the election returns. All day...
...and throughout the evening. I put the cable on CNN in the morning and left it there until just about a half hour before Mom retired. Although Mom asked me, generally two to three times an hour, when she was actively watching the set, "What program is this we're watching?", she understood that it was political, she was aware, because, I think, it was repeated so often during programming, that yesterday was election day, the most important part of which was the vote for President of the USA, and she attended with a keen interest that surprised me.
I decided to take advantage of "the moment" and ask her what she remembered about her parents' and her and Dad's voting habits. To the best of her recollection, she said, her parents and she and Dad voted "a straight Republican ticket"; although, when we lived on Guam, Guam did not vote in US elections and our family was civilian, so neither of my parents were military voters. This means, for instance, that Mom and Dad were not enfranchised during the Kennedy election, or, for that matter, any presidential elections from 1960 through 1972. Nonetheless, after reminding her of her and Dad's ineligibility to vote, I asked if she remembered if she and/or Dad supported Kennedy or Nixon.
"Oh, Kennedy, I'm sure," she said.
"Really," I said, "so you both supported the candidate not of your party?"
"As I recall," she said, with a knowing-historical look she displays for just such occasions, "Kennedy was a Republican."
I didn't correct her.
Throughout the day I pointed out pictures of the Democratic and Republican candidates, elaborated on sections of their platforms and groused about the fact that there was no news disseminated about those voting for "the other candidates". In the evening, about an hour before McCain's concession and Obama's acceptance speeches, out of curiosity, I asked Mom if she had an opinion about who she supported.
Initially, she responded that she didn't think "it makes much difference." This is her standard attitude toward the US Presidency. I let the subject drop.
Then, after listening to the final speeches by the two major party candidates, when I thought all memory of my question had vanished, about halfway through Obama's acceptance speech my mother said, "Now, there's a good looking man."
"Yes," I acknowledged. "Turns out," I added, "he's also going to be our next president."
"Well, good!" my mother said. "I voted for him." And, in case you're wondering, if she voted it was at a decidedly virtual polling place.
"Do you know what party he represents, Mom, I mean, you know, Democrat or Republican?"
She looked at me with ironic disgust, her typical expression when she figures I'm needlessly testing her and she's one up on me. "Republican, of course."
I just smiled. Maybe that's part of the magic of Obama. Whether or not you voted for him, the timing of this election, considering the present, urgent needs of the world and our country, certainly makes it seem that Obama addresses the USA's current need for A Man of the People. Even I, who voted the issues and, thus, was forced to vote outside both major parties, am glad Obama was elected President. Knowing that my candidate would lose, I was hoping he'd win the election; I was, in fact, sure he would. I'm glad he did. I'm glad his party has taken control of the House and the Senate and am keeping my fingers crossed for the 2/3's majority that will lock out Republican filibusters. My positions on the issues stand a slightly better chance of being considered than they would have under McCain.
Despite the election excitement in our house (which was, of course, low key, excitement of any kind is always low key, now), Mom had a drowsy day; not a sleep day, but she was reluctant to remain up, slept such odd hours that we skipped not only a breathing treatment but I forgot about one of her administrations of her iron supplements until it was too late. She looked good, though, felt fairly good, just needed more sleep than usual. Her napping, in fact, pushed out the scheduled Hospice RN's visit, which will no doubt take place today or later this week. I am concerned about a few issues: Mom's BP and her recent and more frequent than usual bouts of difficulty breathing. But, my concern is more a need for information than a need that something be done.
Ah! I hear her calling, "Mother, mother!" She's up, on her own, almost exactly 12 hours from when she retired last night. Good sign.
If you've been visiting over the last few days...
...you've probably noticed that I haven't been visiting, much; in particular, I haven't been keeping up on stats and movement reports at the associated journal sections. I just updated those today and figured an update is in order here.
Whatever Mom was fighting, and it seems it was probably a cold, it didn't develop into pneumonia, thank the gods for that. I started adding a tablet of garlic (1,250 mg) to her morning pills on Thursday. This used to be a regular supplement but it was taken off her pill regimen when she received her last transfusion in September of 2007 because garlic is an anticoagulant. It is, as well, though, a natural antibiotic and it seemed to me that it might be a good idea to add a dose every day, just as a precaution. At this point she looks as though she's holding her own, anemically speaking, and, anyway, with all the added information I've learned about the link between anemia and cancer, I strongly suspect that her anemia has never been the result of internal bleeding. I have no idea whether the garlic "worked", but as of yesterday she was doing better, physically, than she has in awhile, including that her feet swelling dropped to nothing over Friday night and remained in her normal range, which is very slight as evening approaches, which is why I always rub her legs down at night.
However, I have, mysteriously, not been doing so well emotionally. I'm not sure why. Although definitely not in my usual fall "up" state, I thought I was doing pretty well, then, on my birthday I was overcome by a severe bout of grouchiness, so bad, in fact, that it seemed I could say nothing to my mother in a gentle tone. I was resenting having to yell every time I talked to her just so she could hear me. I was resenting the amount of physical contact I have to have with her. I was resenting stupid things like the unusual amount of sunshine and the balmy temperatures we've been having for fall, and it all came out on my birthday. My mother, because she was aware it was Halloween, was excited because she remembered that it was my birthday. I, though, wasn't won over by her remembrance. What a dick-head I was! This, too despite some sweet, unexpected birthday surprises the evening before my birthday and on my birthday, both of which should have jump-started me out of my dolorous mood but did so for only about an hour at a time.
Yesterday I still hadn't shaken my mood so I figured it would be best if I wheeled Mom around the house as much as possible, whether or not she was up for walking, because the more she walks the more close physical contact we have and the more coaching I have to perform. This was fine with Mom. She was surprised, probably because she felt so good and was performing so well, but she was okay with my decision. I suspect it was because she detected that I was still feeling the need for distance. I handled it better, though, yesterday. I wasn't snappish, I wasn't barking, I wasn't mean, but I was very removed: I didn't start conversations. I finished off her attempts to converse with one word responses and lack of eye contact. I coached what little is necessary during transfers with hand and body signals, which she understood since I autonomically use hand and body signals when I'm verbally coaching, anyway. I think my distance tired her out, though, because she was up a bit less, yesterday, than usual.
I'm not sure how today is going to proceed. I'm not resolved toward any mood, in particular, which is a promise in minor, I think. Mom already hit her 12 hour sleep mark at 1330. I checked on her, roused her a little. She made it clear she wanted "more time". I may let her go until 1500. There's a low going through, too, and it is significantly cooler than it has been for weeks, so that may have something to do with her feeling like she'd like some extra sleep.
I rarely become agitated with caring for her, anymore, it's all so automatic and closely intertwined in our relationship, so the last few days has caught me by surprise, as has my reluctance to try to modify my attitude. Maybe it has something to do with Birthday Mystique...you know, that nugget of birthday selfishness that is installed in us when we're children and which reminds us, decade after decade, no matter what we say to the general public about not caring about our birthdays "anymore", that our birthday is a special day and, somehow, our immediately environment should note this and bow to our whims. Certainly, my immediate environment took note in two touching, surprising, especially appropriate ways but, this year it just wasn't enough.
Maybe today will be a better day for me and, thus, for Mom.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson