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.
Reduced to Crawling
As I begin this, it is 0301. I just maneuvered Mom back in bed after a fated bathroom trip. I guess I was so deep into sleep that I didn't hear her go to the bathroom. Thus, after she finished her toilette, she rummaged through the house looking for me (turning on most of the lights on the upper level), finally headed back down the hall, bypassed her bedroom, shuffled into my room, tripped over my futon on the floor as she entered my room (I'm still sleeping right at the door), and fell forward, approximately, anyway, onto my bed, just to my side. This, of course, awoke me...as well as her frantic calling, "Gail? Gail? Gail?"
We were a little stuck as to how to get her up. It's becoming apparent to me that, for some reason I can't quite figure out, I'm not able to lift her off the ground as easily as I used to. I feel as strong as previously and haven't forgotten the former technique, so it could be that she isn't able to "help" as she used to and more strength is required by me. She didn't fight, this time, but simply wasn't able to offer any assistance, even grabbing onto a heavy, sturdy piece of wooden furniture. As I lifted, from my usual squatting position, from behind, she pulled for purchase on the small cabinet...but it just didn't work.
She suggested that she crawl into her bedroom up to the edge of her bed and we take it from there. I wasn't sure she'd be able to crawl on her hands and knees, but she did, without a problem. Then, we repeated the procedure we devised on Christmas, although much more elegantly this second time. Instead of shoving her, we kind of up-rolled her onto the bed. After she was in a full sitting position on the bed, she burst out laughing. "That was easier than I thought," she exclaimed.
That set me to laughing. Her wry expression in response to my laughter told me that she understood the qualitative difference in our shared response.
I performed a quick survey of body parts, as usual, had her stand up, which she did with surprising ease, and side step closer to the middle of the bed. No problems. She sat back down easily, as well. Then we talked.
"Well, Mom," I said, "it looks like the time has come for us to move into the same room."
"I think you might have something there," she agreed.
"We'll work out the details tomorrow."
She looked at the clock. "It is tomorrow," she said.
We laughed again. I can't quite put my finger on why she found this funny, but I can tell you why I did...she rarely knows what day she's in...and, yet, a half hour ago, she "knew" that, according to the last time we were conversing, it damn well was tomorrow. Something about falling and crawling clears the mind, I guess. Good thing to know.
She's settled in bed, now. We talked, briefly, about how the new arrangements were going to have to take into consideration that I am only comfortable sleeping in a temperature significantly cooler than her preference.
"I know, I know," she said, giving me that "you and your dad" look.
I'm concerned that switching her bedroom to the shared master bedroom may disorient her. Maybe the solution is for me to sleep in the hall just outside her door all the time. This way, her room orientation won't change, I'll be able to sleep in cooler air and I'll be easily alerted when she begins to rummage in her room. Sounds like a plan, anyway. I'll work more on it later.
I'm expecting, of course, that she will be stiff here and sore there when she awakens in the morning, although, well, who knows. We'll see. Yesterday we accomplished an entire day without the wheel chair, then, this evening, after a half day without the wheel chair, her right hip (not a hip affected by her previous fall) was "acting up" (her words). Could be because she's been compensating in internally significant but barely detectable to this "outsider's" (outside her body, that is) gaze for continued "iffiness" with her left hip. Before her initial bed time, tonight, I gave her two extra strength Tylenol to see if we couldn't waylay that iffiness. Considering the extent of her shuffling through the house before she feel onto my bed, it must have worked.
I've definitely got to find a local doctor for her, and soon. I've been taking care of a matter of personal family business that's required quite a bit of attention over the last week or so and put the doctor business aside, but I see I'm going to have to double up on priorities. The other matter is just about addressed, anyway, so that's good.
A small adjustment today, another tomorrow, I'm not sure whether I prefer incrementally increased intensity or an all-at-once large increase. Oh well. Doesn't matter, really, which I prefer. You do what you have to as life changes.
Better try to get more sleep before the alarm goes off. Night, night. Sleep tight. Don't let the bed bugs bite.
At least she had a very, very soft landing!
I think I'm settled down, now. I've got to get back to bed.
Today's been a semi-wheel chair day, so far.
The Mom is down for a nap. Typically, the second "half" of her day goes better than the first, whether or not she's debilitated. Before she went in for a nap, she expressed some excitement about "all the good stuff" on TV tonight. The L Word begins another season. I'm looking forward to this one. With a bit of prodding she remembered the series when I mentioned it, enough to say, "Yes, I think I'd like to see what's going on with those girls." As well, she's been noticing an ad for a new show, The Cashmere Mafia, which debuts tonight. The ads and promos have been mentioning Sex and the City, one of Mom's favorite shows, because its lead writer is apparently responsible for this new show. I think Mom may be confusing all the talk with the old show and, frankly, I'm not excited about watching the new one, especially since it will be full of commercials and I usually find retreads disappointing, but, I'm curious, so I agreed to tape it while we're catching up on the last episode of last season's The L Word. As well, a couple of weeks ago when she was up into the wee hours and we were channel surfing, we stumbled on yet another dead people show, John Edward Cross Country, so, now, I'm taping episodes of that for her, since they often play when she's napping or night-sleeping. I mentioned to her that we've got a few of those backed up. I'm not sure Mom actually believes that this man talks to the dead...in fact, I'm not even sure she's aware that this is central to the show. She likes Edward's philosophy, though, which is even more liberally sprinkled throughout this new series of his than previously, and, it never fails, each episode generates yet more interesting conversations between Mom and me about dead relatives. She also likes the theme song, a lot, and has mentioned that she'd like to be able to play it "here at home" (not sure where she thinks we are when we're watching the show). I haven't yet instituted a search for it.
Mom's "morning" started out well. She expressed surprise, on working herself to a sitting position on her bed before arising, that she felt "strange all over" but "not bad". I reminded her of the fall, instituted yet another detailed survey of body parts, and, at this point, I think she's just experiencing recuperative stiffness. She was a little slow heading into the bathing arena, but not iffy. However, she had trouble adjusting herself during the standing portion of bathing. She complained that she "couldn't get comfortable." At this point I decided that we'd operate in wheel chair mode for most of her first Up Period of the day.
The really surprising development is that after initially expressing digust at my suggestion of using it for mobility, today, she absolutely reveled in the aforementioned Queenly Status the wheel chair proffers! She crowed and mugged and ordered her way through her "morning". It was fun, rather than frustrating, for me today, though. Her attitude was more humorous than entitled.
We'll see how the evening goes, but I expect all of today will be a close repeat of yesterday, without the hip grabbing. The same may apply to tomorrow. We have a wonderfully ferocious series of lows going through, which always slow her down. The rainy one has morphed, this evening, into the snowy one, and more snow is promised for tomorrow. I'm stoked. Mom's taking advantage of the lows as an excuse to loll. Fine with me. My estimation is that she continues to heal well and quickly and, the more I trust her instincts about sleep and laziness, the more likely she'll be snapping to, announcing, with much surprise, in a few days, "I feel so much better today!" as is her usual habit in the wake of episodes like this.
I promised her I'd awaken her at 2030 so she wouldn't miss any of her shows. Better get moving.
I'd forgotten how intense wheel chair days are.
I also forgot, until after Mom's bath, that wheel chair days are possible in this house. When my mother was laid up with her back injury in the fall and winter of 2003, wheel chair transport through the house and its attendant life style were normal. That episode is so long time gone, though, that I spent yesterday being brutally reminded how demanding the life style is.
As is typical, the day after her fall was worse than the evening of the fall. She pulled a muscle in her left hip and it "grabbed" (her word) every time she attempted to move in a way that demanded a turn to either side. She reported that the grabbing wasn't terribly painful (four on her personal pain endurance scale of one to ten) but caused her to falter dangerously, which was evident from the time she arose from bed and we discovered transport from the bedroom to the bathroom (a distance of about 25 feet) would be safely accomplished only if she leaned on me, placed her feet directly in front of mine and walked forward as I walked backward, embracing her in a Jaws of Life grip.
As we bathed her, though, she insisted on standing through torso bathing, even though I had mentally devised a method to accomplish this with little standing and moving. She did well through the procedure, but when we were finished and her body was dressed from the waist down, her hip pulled again when she moved to sit back on the toilet seat. This signaled to me that it would seem prudent to figure out a better way to get her from the bathroom to the dinette, a distance twice that of bedroom to bathroom.
Knowing that negotiating the two steps into the living room would not be an option for at least all of yesterday, I began assessing and arranging the house and our available mobility tools in order to figure out how to live our life on one level. I figured out a method which involved a short supported walkering across the carpeted area into the hall, which I thought she's probably be able to negotiate, then, remembering an incident a couple of years ago during a flu-shot-orama at a local grocery store in which one of the men in line showed me that our style of walker can be pulled or pushed easily across hard flooring while the user is sitting on the seat, decided I'd have her sit on the walker at the entrance to the kitchen and pull her to the dinette table. It wasn't until I was finished and satisfied with setting up this temporary living arrangement and headed into the foyer to retrieve a new canister of oxygen that I noticed the wheel chair, which sits in the foyer in front of the oxygen canisters in order to keep them from falling when the cats play in that area. Using it, while promising a bit more ease through the day, required a completely different arrangement.
Wasn't as easy as it looked, though, although I'm sure it was easier than my first idea. By the end of our day all those wheelchair maneuvering muscles that haven't been used in awhile were registering extremely unpleasant surprise...not pain, really, but a level of tension to which I haven't been used for awhile.
I was also reminded that "wheel chair days", for Mom, equal "Queen for a Day or Days" episodes. She relaxed (for which I am grateful, in a roundabout way) so completely that she initiated a round of "my slave will do it" behavior: Dropping napkins, Kleenexes, even eating utensils (thank the gods she didn't transfer this behavior to plates) on the floor when she was done with them for me to retrieve and dispose; throwing her soiled paper underwear just any old where in the bathroom instead of depositing them in the trash can which sits immediately and conveniently to the side of the toilet; depending on me to straighten and lift her legs in order to get underwear, knee bandages and clothes on, despite the fact that she continually reported no pain or difficultly when I badgered her to do it herself; etc. By evening, after dinner, I was so tired and disgusted and so very aware that none of it was necessary that I had a minor explosion: "Two rules," I announced, after the third throw-the-underwear incident, "Although all evidence appears to the contrary, I am not a slave laborer so you are not to treat me as one, and, don't take me for granted."
Whoops! That was an eye-opener! She and I understand each other well enough and this mutual understanding is flexible enough so that we both silently acknowledged that no apologies were necessary, but she knew exactly to what behavior I was referring and immediately changed her Methodology of Injury.
I had her on an extra strength Tylenol course all day. I decided against aspirin and ibuprofen because I figured she'd need analgesics all day long. I was right, although she took fewer analgesics than I thought would be necessary. I'd timed their delivery so that the last dose would be delivered just before bed with toast, but she refused both the toast and the pills, reporting, after a sitting down, standing up, transferring from chair-to-toilet-to-chair in the bathroom episode about an hour before she went to bed, that she didn't think further Tylenol was necessary. I almost always honor her preference on the matter of analgesics. They worked well throughout the day and by bedtime, although she was tired and physically iffy enough so that I felt it necessary to devise a method whereby she could brush her teeth while sitting on the toilet, when she arose to go to the bathroom in the middle of her night sleep she insisted on not using the wheel chair and did just fine, without reports of pain or grabbing (I asked, almost obsessively, until she fairly shouted, "I'll let you know if I hurt or need help!").
She was also a bit hazy after an entire day of inactivity and napping, but I'm used to this and don't attribute to it any need for concern.
I was concerned, however, that my unexpected exhaustion from the day would mean I might not respond to the noises she makes when she arises in the middle of the night to go to the bathroom, so I pulled my futon part way into the hall. As it turns out, I was so primed for possible bathroom visits (or anything else) that, despite dropping into something similar to a drugged sleep as soon as my head hit the pillow, I heard her shift to a sitting position in her bed when it was time for a trip to the bathroom and was at her side before she'd gathered the wherewithal to stand up. I was, however, so tired that when she tried to initiate one of our typical visit-and-chat sessions in the middle of the night, I rebuffed her. "Mom," I said, "I'm too tired to visit. I need to go back to bed immediately. So do you." She accepted this.
Her self-set schedule dictated another later than usual bedtime, and, as well, she heals so well in sleep mode, so my intention has been to allow her to sleep until 1400, today. However, it is 1330 as I polish this off, now, and I'm hearing her cough, so, hold on a minute, I'll check in on her. She might be ready to "rise up oh lamb of god", which is a phrase I use to tease her into standing when time is of the essence, I can tell her muscles are ready, but her mind is resisting the thought.
Hold on while I'll check on her.
Ah! She's changed her position and quickly settled back into sleep...so I've got some minutes to reset the house for another wheel chair day. After wheel chair days, I always set the house back to normal, in case she arises and wanders through the house without my knowledge. This has happened so few times it would seem unlikely on any particular night, but, you never know. I want to make sure that if she wanders and I don't immediately realize she's up, the furniture arrangement will not hold surprises for her.
Whether the entire day will be a wheel chair day remains to be seen. If she seems determined to move a bit more, today, I'll not stand in her way. However, I'll continue to keep her at one floor level; don't think we'll tempt fate with any stair steps, today. Thus, even if she is more mobile than yesterday, in order to keep things easy and flexible for any possibility, we'll continue to use the wheel chair as Her Chair. This also allows for the arrangement that is most advantageous for TV viewing from the dinette and, as well, the wheel chair is a great substitute for her rocker, as it naturally assists her in sitting upright with feet on the floor, rather than slouched over some other means of support with her feet kicked back behind her.
I have to admit, when this "seemingly emergent blip" first happened, my alarm kicked in and triggered my usual out-of-the-ordinary thoughts: "Uh oh, we're on the downhill slope, here we go!" But, once again, instead of slipping, she's maintaining, with some effort, to be sure, but without indications of serious consequences. She's a trooper, this one.
This episode has provoked me to reconsider looking for a local PCP for her. Yesterday I plundered some acquaintances for a couple more names and recommendations and intend to restart the process this week. Wish me luck.
I'm ending this post between chores. The house is set. Mom is bringing herself to an upright position on the bed and cooing to the cats, who always attend her at rising and bed time.
Time for me to officially skedaddle.
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson