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've decided to start an informal catalog...
...of my favorite My Mom Has Lung Cancer comments. This is the first installment. It was offered by a delightful, wry friend with whom I just recently reconnected. She's a nurse, one of those who has generously offered me her no-nonsense evaluations and advice about my mother's life, now that it's intimately connected with all those aspects of Ancient One's bodies that can become overwhelming if they aren't looked at from an appropriate perspective. Here's how she reacted: "I have to admit I am mostly dismayed: who the hell gets lung cancer in their NINETIES for Chrissakes??"
Today Mom starts rehab, two sessions a day six days a week, one physical, one occupational. I learned, too, that if she refuses sessions here and there, legally, she cannot be forced to participate. The staff can "encourage" but cannot force. That's okay. Mom is easily encouraged and, of course, I continue to encourage her, and compliment her on her efforts, profusely. I'll think we'll do all right on this score. She was treated to an evaluation yesterday by both supervisors that lasted for about an hour and included a question and answer session that well approximated an interview designed to determine her level of dementia and, thus, her ability to participate in her own rehab. It was a tiring hour for her. The evaluation, of course, was not meant to be passed or failed, but, she was very cooperative. During a part of it I left the room when Mom began looking to me for "help". That worked well, too. The therapists were able to get a good lock on her abilities, disabilities, potential, where to start and how to direct her. Mainly, what I'm hoping for, is that her abilities return to the point where, even if we continue to have frequent "wheel chair [half or full] days", she will be able to assist me in getting her into and out of the chair at crucial points (bed, bathroom, rocker, etc.,) when it's just her and me, which it mostly will be, at least for quite awhile, probably. Seems my hopes are not out-of-the-way and may even be exceeded. I was pleased.
During the evaluation I learned, once again, that my mother's mishandling of walkers and her obstinacy in being corrected is fairly typical for people in her condition. As I mulled this over last night I hit on the design of a device that might easily be made and should help with the problem. It's simple, straightforward, and it should be easy to find parts and put them together. I'll explain it later.
In the meantime, even without therapy my mother continues to improve. Tuesday night she was not able to swing her legs up onto the bed under her own power in order to settle herself comfortably for sleep. Last night she was able to do this with almost no assist from me. At one point, when I tried to help her with her lagging leg, she scolded me to "leave it alone" because, she said, I "always help it into the wrong position." So, I backed off, provided a little midway support to keep the leg from dropping back to the floor, and let her do it.
I'm still trying to accomplish getting the 2.5 mg metaclopramide before meals and bed off her list because it can cause drowsiness. For my mother, I think what's happening is that it's dulling her edge just enough to affect her ability to move. I've only been halfway successful. I've spoken to the med nurse, who assures me she will pursue this and, nurse by nurse, med delivery by med delivery, if I'm there at the time, I've been refusing it and have been only lightly challenged. The argument is, "but it's such a small dose, it shouldn't affect her". My counter argument is that the woman is so lightly medicated that just about anything can have an affect on her and if she doesn't need it (and she doesn't, anymore, I'm clear on and sure of this) DON'T GIVE IT TO HER!
Time to get ready for work.
P.S. If one more person...
...asks me, innocently or otherwise, "what [I am] doing to take care of [me]", I believe I am going to respond, "What are you doing to help me take care of myself?!?"
I haven't yet begun to recover...
...from what was supposed to be my "respite" and, yet, yesterday afternoon I hit the ground running to keep up with the rehab stay that began around 1430 at the Sniff. And, yes, I know, I know, I could have stubbornly insisted on claiming my "respite" fully and left my mother alone to the whims of the care home, insisting on our isolation from one another "in my best interest"...or, actually, no, I couldn't have. We're too close for that and our interdependence ensures not only the best care for her that I can manage to wrangle from the variety of medical systems occupying, for awhile, the forefront of our lives but their effect on her outlook and "quality of life".
It is obvious that I am going to have to work very hard to make sure that she is not lost in this new system. There are several sub-systems in place at her facility of excellent structure and intention but, as is normal now in U.S. medicine, they are all understaffed and all staff is overworked. Just one instance: As of the time I left my mother tucked in for the night at the facility only one of her meds had "come up from the pharmacy", the metaclopramide, which is no longer necessary and which I refused on her behalf. Today I am taking her meds with me and threatening to medicate her myself if this situation hasn't changed by the time I arrive there.
I have already, diplomatically, established myself as a force in the management of her care and this is being well taken by the facility; so much so that I suspect I will be, once again, operating as an unpaid employee.
Sometime within "the next 72 hours" a meeting will convene, including her facility doctor, nurse-case manager, a PT overseer, the administrative supervisor of her "case", some mysterious others, probably, and me in order to "establish a care plan". I like the idea. I hope it works well in practice. I'm not sure when the actual rehab will begin.
Everyone, so far, is well intentioned, everyone is very knowledgeable, if not yet about my mother at least about what has been proposed to happen for her, and everyone is surprised, pleased and respectful at how well prepared I was when we walked in, how much I know about my mother and how prominent I am in her care. I doubt that there will be any major conflicts between the facility procedures and my observations, questions and desires on my mother's behalf. I expect, as well, I will, again, be availing myself of their food service, just because it looks like I'll be "there" through many meals. I already have an "employee meal ticket" and ate my first facility meal last night. I am pleased to note that my mother is finally on a diabetic diet...and, it tastes good, too!
Still haven't found the time to get my computer into the shop. Still have a few loose ends (notably, lost pajamas and socks and some stuff I have decided to donate to the center) to tie up at the "respite" care center. Still have a major supply run to make to Costco but that won't become urgent until we are closer to Mom's discharge from the facility.
Mom continues to improve, even without formal rehab, on an hour to hour basis. Last night she was able to easily stand and shuffle about from bed to wheelchair to toilet to wheelchair and back to the bed, even as tired as she was, well enough so that she and I handled her bed routine almost completely alone. Halfway through our routine the nurse came in to do a skin assessment [Much to my horror, my mother developed a pressure sore on her coccyx over the last week and a half; luckily, the nurse assured me it is, at this point, minor and should heal completely without a problem] and helped us make sure Mom was in a comfortable position for sleep. As this was happening I mentioned to the nurse that Mom's feet were swollen. She checked them and said they weren't bad. I added that my mother's feet are almost never swollen. Much to my relief, the nurse made a note of this. So, essentially, the heavy strategy will probably be moment to moment as well as hour to hour and day to day. Uppermost for me, of course, will be making sure my mother's spirits remain high and her will strong.
Gotta go: Shower, dress, down some yogurt and hit the road.
When I arrived to visit Mom yesterday...
...about an hour after breakfast, I learned that she had refused breakfast and was lounging in her electrified recliner, a sweet chihuahua who belongs to one of the CNAs on duty yesterday in her lap. Although the picture was sweet and heartening, the decline in Mom's motivation was not. I spent the morning feeding her sliced bananas, almonds and cashews (courtesy of MFS), we talked, played with the dog, and I worried about how this minor but telling decline in Mom's spirit was going to affect the outcome of Mom's rehabilitative "sniff" stay, which is due to begin tomorrow or shortly thereafter.
Essentially, Mom had slipped into a "I don't need, or want, to do anything" area. Not good, right now. I left to come home about an hour before the home (which has a website, by the way, and which the owner, with whom I met yesterday, was pleased to allow me to advertise, here it is) was due to serve lunch. My intention was to take a nap, as I'd had only about five hours sleep the previous night. As I attempted to doze, though, my mind busily scoured the whys and wherefores of Mom's lagging spirit, most notable over the last few days as her lagging appetite, which almost never happens, didn't even happen at the hospital, and suddenly bolted upright off the futon couch flooded with the realization that she wasn't eating much because she and I aren't eating together except for maybe one meal a day!
I hit the ground running, returned to the home in the middle of lunch and began a vigorous program of:
- Getting Mom eating and "going", and
- Assuring her, by both word and deed, that:
- I was right beside her all the way and will remain there through these next few weeks while she is away from our home;
- Her return to our home is as important to me as it is to her and the kitties;
- Her presence in my life and our continuation of our life together is so important that I will be where she is no matter where she is and I will always work to the utmost to ultimately get her back to our home, and;
- I need her and want her in my life as much as she needs and wants me in hers.
I am pleased to say that by the end of the day she was completely revived, speech, spirit and all, to her week-ago-last-Wednesday self except for her legs. Her ability to bring her legs to bear on her mobility, with assist, of course, has much improved. As I watched her successfully help the CNAs assist her into bed significantly more than usual I couldn't help shed a few tears of gratitude, at which my mother, as usual, laughed. "She's gonna have a good rehab," I sputtered to one of the CNA's as we left the room, "I can see it now." The CNA agreed.
I've got to go shower and get ready to head out, this morning. I'll probably eat a banana at the home instead of my usual toast, here, just so I can be with Mom a few minutes more.
So, what happened to "my respite"? Well, I continue to consider that it's going on, since I'm not having to negotiate alone Mom As Dead Weight here at home. But, you know, you weight the necessities and you do what you have to do when it's necessary. Right now, and, I mean right now, it's necessary to keep my mother's spirits and interest in what this episode will mean for the rest of our lives together forefront in both of our lives. Last night, as I drove home (I'm 10 minutes away from where she is), I was wishing that I could be awakening her in the morning, as that probably would give her incentive to, at least, arise to a sitting position on the bed on her own. But, you know, my clone has not yet made an appearance and seems to be particularly negligent toward us at this time so I haven't yet figured out a way to add a few hours to the day or a miraculous lack of need of sleep in order to accomplish this.
I also let the home know that Mom is not allowed to refuse meals. She needs the nutrition to "hold her up" for the upcoming rehab. She is to be brought to table, even if she resists, and placed in front of her food, even if she only picks at it.
Today I'll probably be at the home most of the day. I'll spirit away if and when Mom takes a nap, but I want to make sure that nap falls later rather than earlier, so I'm sure I'll be there through lunch and dinner. This is possible because the home encourages the families of residents to visit as much as possible (sad to say, few do) and is always prepared to welcome a visitor to the meal table.
My Mac is intermittently slowing, then revving up, so I still plan to take it in for diagnosis, if not fixing. While I sleep tonight I'm going to refresh the last back-up, just in case, so I probably won't be writing much tonight, either here or in the way of emails. I don't imagine I'll be able to get it to the repair shop tomorrow, since, fingers crossed, she should be going into rehab and the first day, as I recall, is filled with intake evaluations, meeting with nurses and administrators, and making sure the "sniff" is aware that my presence will be ubiquitous and I will be assertively monitoring Mom's care and progress.
Gotta call the home and have them tell Mom I'll be there after my shower. These personal messages through the staff to Mom's ear seem to help, too. And, so, we continue.
Sorry Seems to Be the Hardest Work
Although we attempted to play Sorry in the hospital a couple of times, we were never successful at completing a full game, in deference to this test or that treatment or a pneumonial crisis, so, yesterday morning at the care center I suggested a game, again, and Mom was enthusiastic. It was challenging for her from the perspective of her fingers. Her hands aren't shaking anymore but they remain a bit unsure of themselves, although she retains her confidence in them, mostly. As I watched her manage the cards, the men, the counting, the strategies and the rules (which we have been inevitably reviewing repeatedly through every game we play in the last more than a few years) I gave her lots of room to do almost everything herself, including separating the wily cards that tend to stick to one another, teasing her that picking up two cards at once is "cheating" and, if she's going to cheat, she ought to do it in ways that I don't immediately detect. When it seemed necessary, which wasn't often because frustration simply never gained a foothold in her during the game, I'd coax her with, "Just take your time. I saw you do it yesterday (or "a few hours ago"), I know you can do it now." I say this to her often in regard to many actions that seem to be giving her trouble at any particular moment. Sometimes it becomes a prophecy, sometimes, if the encouragement is unsuccessful, we simply abandon the attempt but hope for the best the next time.
I also thought, as we played, about how doing this is excellent therapy, totally foolproof because it's play. It's not only good for her hands, it's good for her mind, good for her socially and emotionally and good for her soul. I'd never thought of Sorry like that before, I don't think. Mostly, when we've played it, it's been our way to square off against one another safely and harmlessly. That aspect remains but this particular period of my mother's life is cutting a few more facets into our pursuit of the game. As my mother has often said, "We're a 'Sorry' pair, the two of us."
Quickly, before I get ready to go play with my mother this morning (I think we'll do her hair today, maybe shave her, if she wants, she refused this yesterday; maybe, since our day is beginning earlier, we'll get in some early reading, too...oh, by the way, although I've been reading to her every day, usually in the common areas, none of the residents except that prickly, shrunken man with the piercing eyes has expressed any interest in listening along): I want to bring everyone's attention to Novabella's comment appended to the "Respite my ass!" post and express my gratitude for this heads up. Hadn't actually thought of it that way until she brought this to my attention. As I considered what she said I realized that, at least in my case, this period is allowing me to lead only one and a half lives instead of two. Even that is making a felicitous difference.
Off to play.
The surprise of the day...
...is that my mother took the news of the upcoming short term intensive rehab session with not only acceptance but something bordering on pleasure. Without reservation, she agreed that she "could use some help" regaining her "sea legs". During the conversation she asked why it had been canceled in the first place. I explained that when the diagnosis of lung cancer qualified her for hospice, hospice took over so quickly that I was blindsided and didn't realize that this would take away the rehab.
"Lung cancer?" she asked.
So, I explained that part again. She wasn't shocked. She shrugged her shoulders, lifted her hands palms up and smiled.
I'm not sure she really gets it. I feel that we still need to have the conversation about her not being treated and why I chose this route. Something tells me, though, that she would agree with my decision, either because it makes sense to her or because she trusts me.
As the conversation continued about rehab therapy, when it was likely to begin and how long it would last, I noticed that, beneath our conversation, I was feeling suddenly lighter about how the rest of her life is likely to progress, possible physical difficulties and debilities she would experience, how she would endure these. I was surprised, because I didn't think I'd been feeling heavy about all this, but I guess I had been. I'm sure that there will be much that we'll be going through that will be hard on both of us. But, you know, I'm finding that I'm not inclined to second guess. I'm thinking, within the next few weeks, I'll find that book, How We Die, that I bought so long ago and look up the facts, just so I have a yardstick. And, I've found myself trying to recall where I put that book with the word "Final" in the title that I bought at the same time. However, if I never get around to doing either, I think we'll be okay. We've been through frightening, oblique stuff before. We can do it again. Of course, at the end of this we'll be parting ways, but, you know, that's what happens when you've been conceived into this world. We'll just do it. Nothing else to do.
I want to write a few words about something that caught my mind earlier this evening. I was rummaging through the hectic events of the last week and few days and realized that, among all the people with whom I've dealt, all the people who have been the real movers and shakers, with the exception of three out of twelve, the ones who have either accomplished what seemed impossible on our behalf, ushered me to a level of understanding that brought more important clarity to everything, the ones who have pulled rabbits out of hats or helped me do this, have been women deep into middle age, women in my age group. This is not to say that we haven't had some excellent help from others, but the real miracle workers have mostly been these women. Of the three who weren't, two were men who are probably in their mid-thirties, both physicians, and one is a woman in her mid-twenties. Of those, the two men had to be catalyzed into action by a middle-aged woman who would not be ignored. The woman in her mid-twenties, the Hospice Intake Nurse, did not. Frankly, I find myself hoping I am witness to the woman in her mid-twenties when she hits her mid-fifties and beyond. I can't even imagine what sort of legendary feats she's going to be performing, but I'd love to be in her audience. As I realized this, I caught myself smiling. It figures, you know. You have to be willing to stop thinking of yourself chiefly in terms of how the world might see you so you can get out of your own way and motivate others to act on behalf of what you believe needs to be done. You also have to be able to quickly and easily rally all your strengths and weaknesses without rehearsal. Middle aged women, probably because they are either leaving or past the mating game, are preprogrammed for this. Of course, not all middle-aged women are comfortable enough with themselves to do this but, baby, you'd better make way for the many who are. Middle-aged women, I think, also aren't any longer concerned with whether anyone notices and lauds their effort or, for that matter, criticizes them in an attempt to stop them. If such happens, well, that's nice, thank you very much, or, perhaps I was a bit thoughtless, I'll reevaluate and polish if necessary but, excuse me, my cell phone's ringing and I've got another iron in the fire...
I should be in bed. I gave myself plenty of time to get a good sleep but couldn't stop thinking so decided to see how my Mac was doing (the repair place was closed today). It seems to have healed itself, although over this three day weekend I'll refresh my last back-up then stop by on Tuesday, run the vanished problem by the experts and see what they think it was and if it might recur.
In the meantime, I've got a somewhat earlier wake-up in the morning. The weekend schedule at the care home runs a bit earlier because the staff is lighter so I'm readjusting my visits so Mom and I can relax with each other. Aside from the rehab discussion mentioned above, a few other noteworthy things occurred that I want to record, but, finally, my eyelids are drooping, so those will have to wait until...
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson