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.
Yesterday my mother was in "low coming in" mode.
Meaning: An atmospheric low began a slow sweep through northern Arizona, including us. She tends to slow down and allow her mind a bit more randiness than usual during these periods. Thus, caregiving ramped up a bit, as well: Lots of times when I had to remind her to blow her nose; resistance to every-two-hour bathroom visits when she was up; resistance to arising from both naps and night sleep; argumentativeness; resistance to straightening herself out after rising from a sitting position, which is mandatory, now, in order to avoid what I call her "rag doll walk" which puts her in increased danger of falling.
So, we experienced a few tiffs. Nothing major, but pretty frequent. In the evening, after her nap, when she decided, yet again, to toss her soiled underwear across the bathroom instead of depositing it in the garbage can immediately to her right when she's sitting on the toilet, I blew off some steam. Can't remember what I said, but she took umbrage and immediately informed me, "I don't know why you're so touchy! I spent years doing this for you girls! Nothing to it!"
Wrong time, wrong message. "Mom," I said, "let me explain something to you." In order to make sure she paid attention I raised her head by the chin in order to make sure her eyes met mine. [Forgive the political incorrectness of terms used...my mother doesn't understand politically correct terminology for the conditions to which I referred; it appeared after her "time".] "Taking care of you is like taking care of a permanently retarded child with health issues. In fact, considering that many health issues you have are similar to those associated with Mongolism (Downes Syndrome, for those of you who are politically correct), it would be like you having had a Mongoloid child. Were any of us Mongoloids, Mom?"
Her face registered shock and consternation. "No," she confirmed.
"Okay, then you have absolutely no idea what caring for you entails. Don't assume that you do."
Clarity flooded her eyes. "I understand," she said, just this side of humble, which, frankly, is one of the things I love about my mom, she can't be easily humbled. In case you're curious, the reason I chose to compare caring for her with caring for those with Downes Syndrome is because she spent some time teaching in a school, on Guam, which hosted a significant number of Downes Syndrome children.
Will she remember? No. Will these testy episodes occur again? You bet. Will I dress her down again? Maybe, maybe not, depends on what sort of a day we've had when they reoccur. It felt good, though, to be able to put the entire issue of my caring for my mother into terms that she could understand...not just the labor involved in caring for someone who is physically falling apart. She did this for a good year with my father as he was dying. But, to be able to give her an idea of what it is like to care, for years, for someone who is most likely not able to understand the perimeters of the care they're receiving. That's the hard part. That's the part that, I think, is primarily responsible so many of the internal struggles caregivers to the demented elderly experience. It helps, sometimes, to acknowledge this out loud for someone to hear; especially if the listener is your care recipient, even if you know that s/he isn't going to remember what s/he momentarily acknowledges.
There are lots of reasons why many of us intense needs caregivers eventually find it impossible to continue; the further I, personally, walk along this path, the more doubts I have about my own ability to continue. I think, though, they all boil down to this: As a society, we still don't get it: Truly, except in fairly rare cases, this isn't your mother's caregiving.
My soul is tired.
At 0330 this morning...
...my mother's voice awakened me (nice to know, by the way, that it continues to awaken me). I dashed into her bedroom. She was propped on her elbows in bed and told me she felt sick to her stomach and thought she might vomit. I quickly commandeered the traditional supplies (huge round metal pan, same one we used to use for this purpose when I was a child, a towel and a moistened wash cloth). I questioned her about stomach pain and a few other symptoms. She copped to none of them. We remained in a tense tableau for about 15 minutes waiting for her to vomit, but nothing ever happened. Finally, I suggested that if she sat up she might be more likely to vomit, a tactic I've used on myself. My experience tells me that if one feels like one is going to vomit, it's best to try to make this happen. She agreed.
By the time she was sitting on the edge of the bed, she reported that she was beginning to feel better. We chatted for another 10 minutes or so, then I got an idea. "Mom," I said, "Let's see if you can go into the bathroom. At the very least, the act of standing up and moving a few steps will tell us if the nausea is going to come to a head or is on it's way out."
Again, she agreed, but, not before she said something peculiar. "It's a good thing I finished high school," she said.
"Well, yes," I agreed, "and college as well. Do you remember that you finished college?"
She had to think about that one but finally confirmed her memory of this.
"What, though, Mom, does that have to do with you feeling sick earlier?"
"Well, I don't know, but it just seems like a good thing."
I couldn't help but wonder if this episode had so scared or concerned her that she thought she was near death, so I asked her this.
She gave me one of her what-made-you-think-of-that-child looks and said, "Goodness no! I was just thinking that it's good that I don't have to go to school this morning!"
I agreed this was definitely a good thing.
As it turns out, she made it into the bathroom just fine. By the time she was there, she reported that the nausea had completely abated, then she had a bowel movement, pretty much on schedule. I decided that it would be best not to immediately send her back to bed, so I suggested that we "repair" to the living room, sit up and chat for awhile if we couldn't find anything interesting on TV and I would make her a cup of ginger tea, a good remedy for a queasy stomach. I'd earlier considered Milk of Magnesia, but the back of the bottle warned against giving it in the case of nausea, so I figured ginger tea would be a better bet, both settling and innocuous.
She had no trouble getting into the living room. She loved the tea. As luck would have it, some channel was having a Roseanne marathon, so we settled into a few episodes and I washed and set her hair, figuring that this would relax her.
Around 0445, just before I began working on her hair, she struggled a bit to "tell [me] something". I coached her until we finally figured out that she was thinking that she'd like me to sleep with her for the rest of the night. This told me that she was still feeling a little worried about the nausea episode so I told her we'd "revisit" the request when she was ready to go to bed and that I would certainly sleep with her if she was still concerned.
I decided to take a few minutes to look up a "stroke sign" email my sister sent me a while back. Aside from the fact that it didn't mention anything about nausea unless it was accompanied by "dizzyness" or "lightheadedness", I ran her through the four-activity test and she did fine, which didn't surprise me. Then, I quickly scanned "stroke+nausea+symptoms" in Google. Turns out nausea isn't a classic sign of stroke. It can be a sign of an impending or happening heart attack, especially in women, but by this time I was fairly convinced that she wasn't having one. We discussed the possibility that dinner, which was KFC chicken, green beans and macaroni and cheese, might have caused the upset. Mom said I would have felt it, too, but I reminded her that a ninety year old system is somewhat more suseptible to these things than a 56 year old system.
"Who's ninety???" she asked.
At 0530 she was completely relaxed and ready to retire. As I set up the walker and the oxygen to prepare for her walk into the bathroom, I told her that it would take me a few minutes to set up my bed in her bedroom so I could sleep with her.
"Oh," she exclaimed, "that's right! I'm doing fine, I don't think that's necessary."
So, it's 0622, now. I've checked on her three times and will check once again when I retire, at 0630. I think she'll be fine. I am so convinced of this, in fact, that I am going to continue with my plans to arise again at 0800, shower, etc., and head out to do my usual Saturday chores a day early. I decided to move them up a day in case I feel the need to take her in for a blood draw on Saturday to check the progress of her hemoglobin. All physical signs indicate that it's recovering nicely, but I want to give myself to give myself the leeway to check it, just in case I'm still a little nervous about it.
I'll check on her again at 0800, of course, and again several times, I imagine, before I leave, but I think she'll be fine.
As my mother settled back into bed she said, "Well, that was a pleasant little visit we had tonight."
Yes, it was. I'm glad the way we're living allows for these sorts of "treatments". I'd considered a hospital visit during the initial period when we were both surprised at her nausea, but I'm glad we're in an environment that allows us to step back, calm ourselves and take a steady look at the situation before doing something as drastic as putting her through what would surely have been an unpleasant, manhandling, most likely unnecessary battery of tests. It's funny because the tension of the last several weeks have occasionally put me in mind that maybe her care is becoming so intense that I can no longer handle it...of course being sick, myself, did nothing to bolster my confidence on this issue. But, I'm feeling confident again, we handled a "situation" appropriately, I think, and with grace and camaraderie, and I am, once again, glad I'm here and glad she's got me...and I have her.
As per the following note...
...from Bert which I received this morning...:
I got an email from Gail a while ago saying she had problems with her internet provider and had to pull everything down, including her email address, but that she would be getting a new provider and re-establishing everything and she'd let everyone know when, but I haven't heard from her since, so I'm not sure what the delay is.
I will forward your note to her so she knows you're concerned.
----- Original Message ----
Sorry for the personal message but have you (Bert) or any other regular reader heard from Gail of "The Mom & Me Journals dot Net"? Her blog is down, did she move it? Are things alright with her mother? I've had some personal events taking up my time and haven't kept up with my favorite blogs. Her Myspace account is gone as well.
...I guess I'd better get cracking, posting, and emailing in order to let everyone know what's going on. First, a new post.
It's been a hectic couple of months since I lost my domain, that loss being the least hectic of all problems. Aside from my mother's falling episode, which is probably more accurately referred to as "collapsing", since she actually never fell, about six weeks ago I caught a really, really bad cold, probably "the flu", despite us both getting flu shots in early November [A few weeks ago a noted through the news that this year's flu shot missed its calling by about 60%, so that could explain part of why I was vulnerable, this year.]. I worked very, very hard to make sure my mother remained safe from this cold, but into the fourth week of my suffering, she finally caught it. She's in her third week, now, and recovering much more quickly than I did, thank the gods, but it hit her hard. Since her doctor is in Mesa, we already had an appointment set up to see him on March 6th and, truly, there isn't much a physician can do about a viral cold except treat the symptoms, her doctor prescribed a couple of courses of Z-pak 5 day antibiotics to make sure she didn't develop pneumonia and recommended I give her guaifenex to keep the mucus loose and easily expelled.
Her second week was the worst. She was becoming increasingly weak and I consigned her, again, to the wheelchair to avoid possible falls. She looked awful. Last Thursday I decided, regardless, to take her in for her February blood draw, which I'd been putting off day by day because she just didn't seem up to it, in order to see if anything else was going on. Sure enough, her hemoglobin had dropped from a nicely acceptable 10.1 on January 23rd to 8.1. Bad sign. After some quick research, I began to suspect the guaifenex, as it can cause stomach irritation and it, as well as the acetaminophen, was also causing some pretty wild blood sugar readings. I took her off the guaifenex last Friday. Her doctor called this Monday and asked that I take her in for a blood transfusion. However, by then she was pinking up and feeling significantly better, cold and all. Since there was a 5 hour wait at the emergency room, I took her in for another blood draw on Monday and, sure enough, her hemoglobin is coming up. It was 8.6 on Monday. The doctor said, as long as it was climbing not to bother with the transfusion. In the meantime I rescheduled our "routine" appointment in Mesa for March 13th, next Thursday. The doctor said not to worry about having another blood draw taken for "14 days", although I'm sure he'll draw blood next Thursday.
In the meantime she I'm noticing that she looks much pinker in the evening than in the morning, which figures, considering that throughout her day she received six 150 mg doses of iron polysaccharide, equaling 900 mg in all. The thing is, because of her cold she's been sleeping more than usual and I've been allowing this. Yesterday, though, when I noticed how pale her lips were in the morning, I decided, and told her, that I was going to absolutely limit her night sleep to her typical 12 hours (it's been 13 - 14, lately), and her naps to 2 hours (which have extended to 3 hours, lately), so that her iron course starts earlier and is evenly divided throughout a 12 hour period. She's agreed and we are starting this regimen today, in about 14 minutes. I've also been making sure that her evening meal is meat heavy, to add as much easily digestible iron as possible. Still, I'm freaking, a little, over her continued slow recovering from her severely anemic state and am not completely convinced that she won't need a transfusion before her appointment next Thursday. Thus, I've decided, depending on how she looks and feels today, I'll probably take her in for another CBC tomorrow afternoon, just to see if her hemoglobin in continuing to rise. If it's dropping, I'll get in her in for a transfusion on Friday, five hour wait or no.
In the meantime, her spirits remain high, as usual, her will is incredibly strong, probably because she has been feeling as though she has to battle me to go to bed. I've cut her lisinopril back to 3 10 mg tabs, again, too. After two weeks on the 4 tab regimen she began to collapse, yet again, just as she had in September of last year when I put on on 4 tabs. This finally clicked with me. I had to make a decision between moderately high systolic blood pressure and trying to keep her from falling and decided, considering that she's been living well with moderately high systolic blood pressure for some years, best to allow that over the possibility of a fall.
How am I doing? Well, I'm tense, and remain a little freaked, and tired. Every day something happens and I think, Hmmm...I should report on this and, besides, I should let everyone know where I'm posting.... Then, the day gets away from me and I fall into bed exhausted sometime after midnight, after winding down with a few crime dramas on the cable networks. The gods only know why I've zeroed in on crime dramas (old "issues" of the Law & Order series and its offshoots) but they seem to settle me down, take my mind of what's happening here and allow me to sleep when my head hits the pillow.
Well, it's just about time to awaken the Mom and slip her first iron pill of the day down her throat. It will probably be several hours before I'm able to get back here, email everyone and let you all know where I'm posting. Know that I apologize profusely for the long lag in notifying you of my whereabouts and whyabouts...I'm just trying to keep my head above it all. Lastly, thank you Bert, for sending me a kick-ass email.
It's been weird.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson