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.
The visit went well, I think, all things considered.
Both MPS and I tired easily, trying to keep up with Mom's hours and MPS' hours. At one point, the last evening she was there, we both got a bit edgy. She freaked about a rather large spider that had decided to crawl around underneath the futon couch which had functioned as her bed the night before and was due to perform the same service that night. I don't have a problem with spiders in our house; in fact, I like that we have lots of them. They keep the insects down. However, when they bother others, I allow for their demolition. I was too tired to care that night, though, so told MPS, if she wanted to kill the spider, fine, but I wasn't going to help her. She ended up sleeping in her car that night.
A little later in the evening, after tempers had further frayed and I was additionally edgy because Mom was having some difficulty breathing, which led me to give her 10 mg furosemide, I snapped without necessity at MPS when I realized it was going to be a wheeling-to-bed night. I "ordered" her, in no uncertain terms, that when I pushed Mom up the ramp she needed to stay out of the way and not attempt to help. It would look as though I would need help, I told her, but not only do I not, but help could easily create a disaster.
She snapped back that I needn't "order" her, I could have simply asked.
She was right.
I know, for the most part, we all enjoyed our time together. An additional observation is that it's very hard on company trying to keep up with Mom's and my schedule and equally hard on me trying to keep up with the schedules of visitors and Mom. I'm still kind of dazed, even though it's been nigh on 36+ hours since MPS left.
Weird thing, too. MPS and I had many chances to talk and I discovered, as I was talking to her, that, this year, I am not at all excited, or even interested, in my birthday or the month of October. This a complete reverse of previous years. I can't remember ever not looking forward to my birthday, just because it's such a damned spectacular day (it's Halloween). I usually start looking forward to it on October 1st. Even when (and this is usual) I want to spend my birthday alone, I absolutely revel in the month and the day. Not happening this year. Since becoming aware enough of this odd turn of mood after having mentioned it to MPS, I've been trying to figure out why this is happening. I've ruled out the possibility that Mom being on Hospice, thus, more obviously close to death, has anything to do with it, especially since she isn't actually reacting to anything any differently than she has over the last three or four years. It has occurred to me, though, that the Hospice/Impending Death pronouncement has brought to the fore, for me, the awareness that my life, as I've lived it for almost 15 years, now, is close to ending. This doesn't scare me, really, but it has driven me into constant contemplation beneath everything else I do. My mother has noticed it. She has, frequently, over the last several weeks, assumed that I'm either "tired" or "in a mood" when I'm not. But, I know I must be appearing highly distracted to her. Despite my overall feelings of peace and contentment, this distraction, I guess, colors the way I appear to her. I'm not sure if it affects the way others are experiencing me, now. I wasn't aware of it until just recently.
Anyway, the visit is over, I've updated the recently neglected Movement and Dailies journals, there is nothing of significance at either, and, well, I think I'll just kind of fool around, now, until it's time to awaken The Mom for the evening. I'm glad it's Saturday. I'd like to spend a few more days in this distracted daze before I have to meet reality head on, again. Maybe I can artfully wrangle a distracted, dazy Monday and Tuesday out of the upcoming week.
Oh, forgot this one funny thing...
...that happened yesterday, although the humor will probably be lost in translation.
While my mother was napping I stole some reading time in Final Journeys. One of the aspects of reading this book, for me, is that the stories are allowing me to process some of my lingering pre-grief over Mom's eventual death, which, lately, has been coming to the fore, again. Of course, over the last few days I've been especially vulnerable because I've been especially tired. Anyway, by the time I walked back into Mom's bedroom for her second from-nap-awakening I was in full tears mode. I'd wiped away the first flow before entering her bedroom but once she was sitting up and I was sitting on the ground for our usual post-awakening conversation, the tears returned.
Mom noticed. "My goodness, child," she exclaimed, "you do take after your father, don't you!?! What is it, now?"
"I've just been thinking, Mom," I stuttered, "how much I'm going to miss you after you die."
She stared hard at me in consternation. "That's what you were thinking about?!?" She was clearly indignant.
I burst out laughing. This is not the proper home for such outlandish sentiments. I know this. Silly me that I persist in indulging myself in such ridiculous thought! If I insist on doing this, fine, but do it on my own time!
Truth is, my mother's attitude actually helps me. I'm learning, from this most recent Hospice book, that most Hospice pros would probably consider my mother's attitude one of denial (touched by Dementia-Lite). It's not. Her life-long attitude toward death has been: Death happens. You can't stop it. In most cases, you can't control it, so, don't dwell on it, don't worry about it, deal with it when it comes but, otherwise, if you're alive, well, that's what you do. You live. And, in the meantime, if you find yourself considering yourself immortal, so much the better.
I just finished having a conversation with MPS. She's coming up to visit, tomorrow, for a few days. I told her about the most recent book I'm reading about Hospice care, mentioning, particularly, the parts of it that are clearly not appropriate for my mother's "journey", the most obvious of which is [paraphrased] "using this time (the dying time) to try to make the dreams of the dying one come true, making memories, etc." My sister laughed. So, frankly, did I. We both know, as my sister said, Mom is doing what she wants to do; she's in her own home, she's with family, she can sleep pretty much as much as she wants, I'm not restricting her diet anymore and she's being cared for by someone who allows her to continue to consider that she is caring for herself.
MPS said, "If we told Mom we were going to 'make a memory', you know what she'd say: 'Fine. Just be quiet about it. I'm going to take a nap.'"
That's the woman for whom I need to carve out a place in Hospice philosophy. That's my mom.
Oh my, oh my, oh my!
Well, I finally decided, on Sunday, to bite the bullet and set to restoring my Mac files, so I could use my email files, especially, to concoct a decent mailing list of readers, including "old" ones, for notification of the final migration of this section of The Journals to the new domain. Didn't go well. I spent the entire day fooling with the back-up program and the computer and was unable to restore the important files (all linked to my username on that computer, such things as all my documents and all my email files). By evening I was aware that some of the mistakes were those of the business that replaced my hard drive and some were mine. By evening I was sad and frustrated. I can't believe, yet, that I will no longer have access to those files, but it looks as though I'm going to have to have a professional do the restoration. I am assuming that the restoration can be done...that I simply didn't understand the instructions on how to do it. I decided, though, to wait for a couple of days to contact the pros, as I've been running close to empty for the last few days and am likely to be a loose-cannon-client if I don't approach the pros after I've had some rest. So, upshot is, I'm putting of the migration for a bit, until I discover whether I will ever have access to those files, again.
A PT from Hospice is due to visit, today, for purposes covered in this post at Life After Death Sentencing. Whether we proceed with the recommended PT is up for grabs, as explained in the section of the aforementioned post. I remaining noncommittal on the matter, for reasons I also explain in the aforementioned post having to do with an error in judgment.
Early yesterday morning Mom awoke at 0400, sat upright on her bed and called "Mother...". The monitor worked beautifully, even though I was, by that time, seriously tired and sleeping deeply. I was by her side before she needed to call out again. Turns out she had "some things on [her] mind" that she wanted to discuss, so we were up for about an hour in the wee morning talking. She was unable to recall what had prompted her initial desire to talk. I encouraged her, though, by asking her what was on her mind. She told me that she couldn't remember, exactly, but she had been "thinking about Guam." She's mentioned that Guam has been on her mind more than a few times over the last several days, without much elaboration. So, I figured, maybe her mind was in a proper mode, now, and took my cues from this consideration. I took a back seat in the discussion, rather spending most of the time asking her what she remembered. She had difficulty with that and mostly responded by asking me what I remembered. I filled in a few details but my seriously wasted mind was intent on getting her to remember and talk, without much success. After she'd decided to settle back into sleep and I was drifting there, as well, I suddenly realized that, maybe, when Mom is thinking about a place but is unable to bring forth her thoughts, what would profit her is if I bring forth my memories of the place (even if I've never been to the particular place on her mind, I usually have memories of her stories about her life in that place). Whether this would prompt her memory is moot, although possible. The reason, I decided, I'd do this is in order to function as a memory album for her so that she is able to pull pictures from her mind as I talk and, if possible, add elaboration. If the elaboration isn't possible, well, she seems to enjoy listening to and contemplating what I remember. Sometimes, I think, especially with Ancient Ones who have dementia, it isn't important that they spit up their memories, which are often hard to impossible to either access or verbalize (I, personally, believe it's the second circumstance more than the first). What's important is that they are allowed to search for and contemplate their memories. At the moment, a chance to try this strategy hasn't yet arisen, but I'm sure it will within the next few days. I'll report back, of course.
Yesterday evening, when I first awoke Mom from her nap (she asked for another half hour, which I gave her) she clearly spoke a startling sentence which, I assume, was a bridge from her dream state: "Everything's fine; everything's taken care of," she said. She said it with such confidence and authority that I laughed delightedly and immediately asked her to what she was referring. She looked at me through the lingering wisps of her dream and immediately forgot the circumstances to which she was referring. I was tickled, though, and continued, for a moment, until she asked for more sleep time, to try to prompt her.
When she closed her eyes for the last half hour and I left her room I couldn't help considering her declaration. Earlier in the day she mentioned that she felt "so much better" than she remembered feeling over the last few days. I was unable to draw any more out of her, although I suggested that maybe she felt this way because she was definitely on the mend from her second bout of pneumonia. She agreed this might be it. Maybe, I thought, this is the reference. I also considered some of what I've been reading in Final Journeys. Maybe she had a dream that assured her that her life is now in order and she can proceed with whatever she feels necessary without looking back. Whatever, I'm glad she's settled about, well, whatever.
Speaking of which, although I am having to read the book in interrupted clumps, I'm enjoying Final Journeys. This book is much more interesting to me that Callanan's first. It's full of attitude lessons illuminated with interesting stories. Forgive me for sounding, well, egocentric, here, but it's one of two books I've read, lately, that contains loads of validation for the way I've traveled with Mom on her and my long journey together. The other book, Dancing with Rose, validated my decision to keep Mom out of assisted living of any kind, even though the book is meant, I take it, to dispel the fear families may feel about such places in connection with their loved ones. Final Journeys validates all the attitudes I've discovered helpful throughout the years and adds some interesting refinements. I'm especially pleased to know that this book will probably enjoy wide readership among Hospice professionals. It validates the practices of Hospice, as well, in some surprisingly detailed ways.
We have begun discussing the holidays in earnest, prompted by me stumbling across and purchasing some small ornaments that will be perfect for our small trees. Our current discussion, which hasn't been resolved, revolves around one big tree (we have a pre-lit one in storage) versus the two little trees. At this point, we're considering all three, although we have precious little space within which to mount all this decoration and mobility could become dangerous if we go this route.
There has also been some slight discussion on who will be visiting throughout the holidays. Chances are, no one will, which rends my heart a bit, since this will probably be Mom's last holiday season (on earth, anyway), even though I'm sure Mom is sure she's got many more holiday seasons packed under her belt. On the rare occasion when she opines that we might be alone through the holiday season, she's stoic about it. "That's the way our family is," she says with a shrug that betrays her pride in being a part of and having continued the tradition of raising a very independent family. I'm not exactly sure how to handle these conversations, so I've been veering quickly away from them. When she asks if I've heard from anyone "about Christmas" I just say, "no, not yet," to which she always responds, with a chuckle, "well, our family has never been known for close contact." It's hard, though. The subject continues surfacing because we're not getting all the holiday catalogs and food magazines in the mail, much to Mom's delight, and I am loathe to keep them away from her, they give her so much pleasure.
Anyway, although nothing earth shattering has occurred, lately, thought I'd check in and update. I'm still running close to empty, but, oh well, what's new?
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson