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.
Turns out that's also a technical phrase. It was used to describe my mother's inability to mobilize herself or help with assist in a report prepared, yesterday, by the Hospice Physical Therapist after yet another lengthy, thorough evaluation. Although the therapist judged my mother's incipient strength to be good to very good and accepted my observation that over the last few days since she left the hospital many of the debilities that set in during her exhausting fight with pneumonia have much improved or reversed themselves, despite her valiant attempts to help as she is being transferred from bed to chair to toilet to chair back to bed, etc., and help with stuff in between, her extreme leg weakness still needs to be addressed. Once we got my mother to bed (it was her nap time when the therapist showed up), I began a tortured monologue directed at the very indulgent and understanding therapist pretty much as follows:
I began by agonizing that I didn't understand why hospice doesn't support short term, intensive, live-in rehab, especially for hospice patients, like my mother, whose physical weakness is only indirectly related to the reason for their assignment to hospice. My mother, I argued, was able to both assist with help, mobilize herself with help, stand and move around with support until Wednesday night. It was made clear to me, I continued, by the neurologist who pointed the hospital staff in the direction of pneumonia, that her leg weakness, her suddenly increasing dementia and the other odd symptoms like inability to speak well, shaking, problems feeding herself, etc., could all be explained by pneumonia. As she was treated for the condition, I assured the therapist, everything has returned or is quickly returning to normal; except her ability to support herself at all on her legs. This, I said, is exactly as it was when she was released into short term intensive rehab after her low sodium incident in 2004. I unsucessfully attempted to hold back a few tears as I expressed my frustration that, as my mother's legs are, now, there is no way that I am going to be able to manage her transfer around the home on my own, especially since the therapist, who is trained to do this sort of thing, and I, combined, were unsuccessful in transferring back to her bed without the help of one of the specifically trained CNAs at the care center.Although, as I talked I was sure that all I was doing was, essentially, letting off steam which would evaporate into thin air, bless the gods watching over my mother and me, the therapist listened intently and agreed energetically. Within an hour and a half all other hospice people involved with my mother's care were informed and agreed. Everything is now set up to have my mother transferred to the facility to which she was originally set to go on 5/21/08 before hospice set in. She will be signed off hospice and back to her PCP's care for the duration of the therapy, then signed back onto hospice as she is released from rehab ten days to two weeks later. She will, hopefully, be transferred Tuesday. Hospice tried hard for a transfer before then, scouting all "sniffs" in the area for a bed within the next few days up through her planned day of release from respite care on Monday, but the only bed that looks likely is Tuesday, so we're paying for an extra night at the adult care center and I will pay for more if the wait is a little longer, since the Tuesday bed looks "highly" likely but isn't yet guaranteed. Hospice, though, made sure that we are "first on the list" when that bed, or another, becomes available, even if it should come available a little earlier than expected. As it turns out, I had copies of my mother's original orders for discharge from the hospital to the rehab facility for 5/18/08, the day her pneumonia was diagnosed and she started intensive treatment for that. That helped immensely and also vindicated my insistence on getting copies of everything, even if the people I have to approach for those copies put me through the wringer, which, in fact, they had at the hospital. That's a bizarre story in itself, but I'll tell that one later.
It makes no sense, I said, that hospice does not support whatever it takes to bring a hospice patient who is capable of more to their peak ability, especially since hospice services do not include 24/7 aids in the home. My mother was set to be transferred to rehab therapy right up to the day the lung cancer was discovered. As soon as she was accepted into hospice, which we arguably need, the rehab dropped through the floor. If the cancer had not been discovered, she would have been transferred and most likely would have done well; well enough so that our home life could continue more or less as normal. Why, I pleaded, isn't this possible under hospice? Wouldn't you think that encouraging the recovery of at least enough strength in her legs so that she could help me and hospice help her, at least as long as possible, would be desirable for all involved in my mother's life, including hospice?
Can you believe hospice mobilized so quickly, efficiently and compassionately on our behalf? I'd mention the name of the hospice organization with gratitude and kudos, here, if I was sure that the organization wouldn't mind...tick to my mind to remember to put on my list to ask the organization if I can mention them here. I want to. They are a group of amazing miracle workers. They deserve to be recognized.
I had planned to tell my mother of the change in plans last night when I visited her (I was on time) but she was very tired, what with also enduring her least favorite type of weather and all. We watched the last hour of the original movie musical The King & I, rubbed down her legs and she retired around 2000. She didn't want us to read. I did notice, though, that between morning and evening her speech, including her normal speed and tone, both of which were a bit unfamiliar in the morning, had improved even more and are almost indistinguishable from what they were a week ago last Wednesday night when her legs collapsed and I took her into the ER.
Movement isn't a highlight at this care facility for residents who need extra assist, and, as well, the wheel chair to which she's been assigned is much too high off the ground for her, which makes it difficult for her to gain any momentum to move her legs. They've also taken what I call the "stirrups" off, so her legs dangle, toes just brushing the floor, which I'm sure doesn't help. So, today, either during my morning or evening visit, I'm going to figure out how to attach the stirrups and start a daily modified exercise session just for her. The home has these but the aids haven't been insistent that she participate and she hasn't been inclined to do so.
Today I will break the news of her continued absence from home. I know she'll be disappointed but I also know it won't devastate her. I will, of course, talk it up, yet again, as boot camp. I will do all I can to build her spirit, as well as her "incipient" strength, between now and the day she is transferred to official, intensive rehab, and then, of course, I'll be visiting her every day, probably at least twice, to keep her spirits up and make sure she doesn't forget that we (the kitties and I) expect her home soon and miss her as much as she misses us and her home. I will also stay well out of the way of her therapy so that my presence doesn't hamper her inclination to progress.
Although my mother has a commercial Long Term Care policy and an In-Home Care policy, neither of these cover respite stays, let alone extensions of those, but I was surprised that it doesn't cost as much as I was imagining, day by day, to keep her at the care center until a rehab bed opens for her. It's a cost we can manage, for several days, if necessary, and the manager of the home has assured me that since, currently, they have an additional room empty, there should be no problem hosting my mother on a day to day basis after Monday morning. Monday through Tuesday has already been secured.
My heart aches that her return to home will be further postponed. I know how much she's counting on coming home Monday. I expect I will tear up as I tell her her homecoming is going to be further postponed. I'm counting on my mother's courage. Her yearning to return home is palpable but I also know that she and I have a deep understanding that will allow her to trust my decisions implicitly and she will do her best to prepare for the continuation of our journey in our own home and will understand that this preparation is necessary to ensure as much ease for both of us as possible. She may have lung cancer, but she's had it for awhile, that is certain, and it has not diminished her will, spirit or determination. As I explained to the physical therapist, although I know, now, that the fire department is compensated, by our taxes, to help pick people up off the floor, I am not inclined to want to be calling them daily to help keep my mother off the floor.
One frippery. I used to practice astrology and, occasionally, check certain daily horoscopes on the web, just for fun and comparison with unusual days. I haven't done this for ages, though. No time and, anyway, it isn't something that I use to determine anything. But, for some odd reason, yesterday morning, before I initially left home, probably in an attempt to keep my spirit light, I checked my favorite site, which publishes a Friday-Sunday forecast. I read my forecasts for my ascendant; if the word "accuracy" can be applied to astrological forecasts, ascendant forecasts would be more accurate than sun sign forecasts. Yesterday morning, before any of the above took place, I read the following...
"You demonstrate how adaptable you are on Friday. You take whatever hand you’re dealt and turn it into a big winner. To make things even more impressive, you accomplish at least two substantial feats almost simultaneously."...and thought, Hmm, well, this doesn't apply. I already know what lies ahead, what I have to do this weekend, it will be strenuous but won't require anything that could be labeled a "feat". The only "challenge" I faced was going through hospice to have my mother's wheelchair changed out for one more appropriate to her size and I anticipated no problems with that. I filed the forecast for mental deletion.
Last night, after I returned home for the night, I reviewed the unexpected trial that had appeared midday, the flurry on the part of several people to address it on a Friday, in the afternoon, before a holiday weekend, and remembered those lines in the forecast. Well, with help, I performed at least one unexpected feat, I thought, even though my original plan about the wheelchair has been temporarily tabled (it will be addressed at the sniff, as I think it will be necessary to do so). Not that this changes my ambivalence about astrology but, funny, isn't it, the tchotchkes you notice surrounding events when you are able to catch your breath and contemplate what has just occurred.
One final note: My Mac has become unusually sluggish within the last couple of days. I'm going to take it by my computer support place and see what they think. Since it still works, I may not leave it over the long weekend, I may wait until Tuesday to turn it in for repair. But, in case I decide otherwise, if you don't notice anything here for some days, it's because my Mac is in the hospital and I lose patience trying to boot up and operate my even slower PC.
If my Mac goes into the clinic, I most likely won't be bothering with the PC so I won't have access to emails, either. I beg your indulgence over what may be a vacation from being online.
Respite my ass!
I'm grinning as I type that headline, up there. Actually, it is more of a help than I can express to have the care home taking care of Mom, and I have absolutely no qualms about the job they are doing or the way Mom is reacting to this minor, intermittent (because, so far, I've been there a fair to good amount every day) separation. But, whoa Nelly! So much to do!
Not having to take care of Mom directly is allowing my brain to continually recycle everything that's happening so that I catch, I think, everything I need to act on, question, change, you know, whatever. As well, I am getting plenty of sleep, as the need arises, managing to slowly but surely return calls as they come through, think of and follow up on items and ideas that will help Mom remain comfortable and feeling as secure as possible over the last few days of our separation, etc. But, you know, if people who have never been caregivers to those with intense needs think that being spotted means the caregiver can sit back and relax, well, they'll realize different when their turn comes round the corner.
Today will be a two visit day for me and Mom again; and I will try very hard to be on time. Yesterday I promised Mom I'd be back soon after her dinner, by which I meant about 1730. Scratch that! After some post-visit running around for supplies, I crashed on the couch for "a little nap" at about 1430 and awoke with a start at 1735. I needed to call yet another sister before too much more time elapsed, so I elected to do that. When I arrived at the care center at around 1900, Mom had not only remembered that I had been due long before I arrived, she'd been asking for me in a variety of ways, including calling out my name when she was in the bathroom and heard people go by the door. This didn't surprise me. I apologized profusely. I don't lie to my mother on the hope that she won't remember what I've said; thus, when I'm not going to be where she is, I tell her, and she accepts that.
Anyway, I was forgiven, easily, but I need to be as Johnny on-the-spot as I was at the hospital, and as good as my word as I was.
I still haven't really addressed the geometric logistics of our home except in my head and unfolding the futon couch, which I am pleased to report should serve Mom well as long as she is living room bound, and sleeping on it to bring the alleviate the "couch bump" in the mattress. It is already coming under excellent control, even though it didn't occur to me to open up the couch and sleep on it until about 0300 this morning.
As it turns out, today and tomorrow promise to be stormy days, especially today, my favorite kind, so I'm looking forward to running around in a felicitous environment.
I did, by the way, mention lung cancer to my mother yesterday morning, early in the morning visit when she was coughing and said that she would sure be glad when "this cold" was over. On a quick hunch I said something along the lines of, "Well, Mom, you may continue to have breathing problems here and there. You've been diagnosed with lung cancer."
She reared to the side in her chair, fixed me with her ever famous, "Yeah, and your mother wears army boots" stare and said, "Oh, REALLLLLY!?!?"
That was all that was said, all that was necessary, although MPS and I did a hilarious riff on this later in the evening, starting with , "Yeah, you WISH!!!" and ending with, "Okay, then, I WANT A DOG!". Whether or not she remembers or believes it is immaterial. If she does, and brings it up again, or, as her health declines further, which may or may not happen for awhile, she may become curious again, and this may lead us into yet another discussion that contains the words "lung cancer". I am placing no bets, though, on how these conversations will go or how much affect they will have on either of us. It's still her, and whatever level of health or illness she's at, and me; not her and me and lung cancer. Her lung cancer to me is simply something I will take into account as it affects our life, rather like her anemia. It's there. We'll deal with it. She is not my anemic Mom. She is my Mom with anemia. Same goes for lung cancer.
We had an excellent intake interview with the Hospice social worker. Wonderful back and forth. Mom was not only lucid, fully engaged and thoughtful, she not only asked questions of the social worker as well as responding to his questions, I learned something very interesting about her that ties into my own life: When the social worker asked if she was afraid of anything, she responded that she is afraid of swimming because she almost drowned twice and, as an aside to me, said that [name of her brother] "had to pull [her] out twice." I was astonished. I immediately jumped in and said, "Wow, Mom, I'm afraid of swimming for exactly the same reason!" We informally, automatically clasped hands and nodded our already tight bond to yet another level of strength.
Well, gotta go clean the kitty box, shower, and head out to see if I can find one of those microwave shampoo caps.
It's lung cancer.
Ba da boom.
Figured I'd get that over with first.
My reaction when the doctor told me today was phlegmatic. She did, indeed, have pneumonia, too, or, at least some sort of "interstitial" build up of fluid, and that seems to have abated. She can breathe much easier, now, and is back to 2-3/lpm oxygen. The weakness that has been creeping up on her over these last three months and bombarded her Wednesday night, though, remains severe, although over the last two days she's been recovering a lot of the abilities that seemed to have abandoned her while she was enduring her physical crises in the hospital. She has almost completely recovered her ability to speak. She's regaining her ability to feed herself. Her humor and interactivity are completely back, although I don't think those ever lagged, she just couldn't communicate them very well. I understood that they were there from the variety of glints in her eyes when she was addressed, but her inability to work her mouth and a minor, temporary disconnect between her brain and her mouth hamstrung her ability to communicate. She still can't stand without "2 person max assist" [I'm suddenly learning lots of new technical phrases], but I have guarded hopes that some of this may come back to her for awhile before absolute decline sets in. So does she. Between the two of us, I'm hoping we might be able to manage a bit more mobility than she now exhibits. I'm hoping this because I think, being used to feeling that she can maneuver in her own home without more than the help of walls, counters, walkers, occasionally the wheel chair and her daughter, it will be important to her to be able to continue some of this for awhile as she is incrementally adjusting to becoming more and more bed bound. Thank the gods, though, that the woman loves to sleep! I want her to be able to sit in her rocker and muse and watch TV, though, as long as possible. I've asked hospice to help me train to handle her physically. Luckily, at least in this area of the world, they do this.
I took it upon myself to decide not to treat. The doctor recommended this course, and MCS and I had a conversation about this possibility a few weeks ago and we are sure, considering her physical frailty and her preference for not being "poked and prodded" by doctors, that "in the event", this would be the best course, so this wasn't a hard decision at all...it has already been decided. When the doctor suggested it I nodded vigorously. The "mass" is not insignificant: About the size of a small hamburger, so it's been there awhile. I had an enlightening conversation with the fantastic hospice intake nurse, with whom I immediately bonded. This evening as we were going over Mom's medical history in depth for the last several years this amazing nurse brought to my attention that it seems likely that the mass may have birthed itself around 2004, so, you know, she's had it awhile and, baby, look what kind of life she's led, despite it. But, now, it's become a force in her life with which to be reckoned, so, we'll reckon with it, her and I, together, although, as I contemplate this I realize we've already been reckoning with it and, I think, we're on copacetic terms with it. I have no recriminations or regrets about it not being found earlier, about doctors not looking for something like this or finding it early enough for it to have been treated. My mother is a "live your own life" kind of person, which is what she's done. Her preference for a light medical touch is part of what defines her, and it will, obviously, define her death. I mean, the last real operation she had was in 1973, a routine D&C that they used to do on women who were completing menopause. I'm sure she could have had more operations for this or that if she went to the doctor more and demanded more medical investigation, but that's not her style. She has always trusted her body. I think she can trust her body in this, as well.
The doctor vaguely spouted a "6 month" time frame before death. Of course, it could be shorter, or longer. You never know. She is in no pain, nothing unusual, anyway, nothing out of the ordinary. And, yes, I've employed in-home hospice to support us through her End of Days. I'm taking a five day break, yes, the kind everyone else calls "respite" (first time in my entire companionship/caregiving career I've taken a real break). This is mainly to get the house in order for the changes that will be made to accommodate Mom living here safely and comfortably. But, I have to admit, it's nice to feel as though I have a few days sort of to myself to settle myself with new tweaks on realities.
Mom's spending those five days at a, hmmm, it's hard to call it an "institution" or a "facility", it's very much on the order of a private home that takes in lodgers of the intensively needy type and is their final home; sort of a midwestern concept, which is interesting, considering that the assistant manager observed in conversation with me that many of their residents (now including Mom) are "midwestern farm girls". It's a beautiful place, well set up, very much like many people's idea of a warm, comfortable, inviting, even ideal home. My mother had been there about a half hour when she asked the assistant manager, several times, "How much will you take for this place?" Always the opportunist! Each resident has his or her own bedroom. I'm not sure but I think there are six or seven bedrooms. The living room is not so large as to be daunting but not so small as to be suffocating. Lots of comfy chairs and couches. A home type dining room; everyone eats at the common table. The kitchen is just a counter away and you can smell the meals cooking, all of which are home made. There are a variety of activities arranged for the residents, but the schedule is extremely flexible to allow for visitors and individual residents' preferences. While I was there two daughters were visiting with their mothers. I chatted up several of the residents; most of them initiated conversations with me, rather than vice versa. Some are in various stages of dementia, some are not. Some, it is obvious, require very intensive care, some do not. A married couple lives there, too, both in their nineties, each of whom has minor physical frailties. During the evening hours while the Hospice Intake Nurse was conducting her interview of me, one of the residents, a shrunken man with piercing eyes who looked upon us as though he was sizing up whether we were friendly or threatening invaders in his home, sat in a chair opposite us, stared at us for awhile, then, satisfied, I guess, that we meant no harm, sunk to his side and fell asleep. Something about this felt particularly cozy and accepting.
Mom was so impressed with the place that I briefly contemplated something I'd never before considered; moving her into the place permanently. Two things, though, changed my mind:
- It was clear, despite her desire to own the place, that Mom is anxious to get home, "with the kitties", and with life as she is used to it, although I'm sure she'd like our life to continue in a home like that, and;
- Three different residents talked about "going home" with conviction, one of whom exhibited about the same level of dementia as Mom and has been at the home since 2005, so, you know, I realized, be it ever so humble, and, believe me, our home is very humble compared to this delight of a care center, there, truly, is no place like home. I've come this far with Mom, I think I can go all the way.
There remains lots to report and, of course, I intend to report all of it, but, in the meantime, we're doing well, we've got a diagnosis and someone else's time frame but, well, you know, none of that has anything to do with the wonders that I expect this part of our adventure will reveal.
Oh, one last thing. Although I haven't yet, just because the time hasn't been right, I'm sure, at some point, I'll tell Mom that she has lung cancer. I'm sure I'll also tell her that I made the decision not to treat and I think she'll be okay with that. She'll probably be so okay with it that she will not believe she has lung cancer, and that's okay, too. I am getting an intimation, now, of how she will probably deal with what is coming up regarding her decline: She'll take it one day, even one moment, at a time, one difficulty at a time, she'll appreciate all the help she can get in regards to comfort, she'll decide how hard it's getting and she'll decide when it's just too hard; and, I think it will surprise her when she hits that point. And me.
Oddly, I'm excited. Being a loving, as well as benevolent, observer of how her life concludes has me jazzed. She and I have become so close in so many unbelievable ways. I do not want to miss out on this final lap. She will be leaning on me, more and more, physically, and, partially, emotionally. It's been hard for her to learn to do this and she doesn't do it easily or willingly, but she is accustomed to doing this now and trusts me implicitly; so much so that over the last some days in the hospital and last night at the care home, when she was lifted by others to be transferred from one place to another, she'd instinctively reach her hand out out to me and attempt to lunge for me. But spiritually and intellectually she's never leaned on anyone and still doesn't. I'm so curious to see what it will be like for such a person to bring her life here to an end.
I'm exhausted. I've got stuff to deliver to Mom's current "motel" tomorrow and I'm recovering from a severe bout of some sort of stomach flu bug that apparently worked it's way through the hospital while I was there visiting Mom and bedeviling staff, so I'm especially pleased that I have a few days to take some deep breaths and figure out how to rearrange this snug but somewhat unaccommodating house to enhance this next phase of our life. So, you know, as always...
May the gods of air and light,
inspire my mother's lungs tonight.
Turns out likely that my mother has pneumonia and has probably had it for awhile, without cough or fever. This possible diagnosis is courtesy of a neurologist who was finally brought in on the case when Mom's condition continued to deteriorate, most notably today, the morning prior to the afternoon when she was scheduled to be transferred to a local "sniff" for short term intensive physical rehab. I realized, within an hour or so of arriving at the hospital this morning, that her condition was so bad, especially what appeared to be her dementia but also, notably, her physical weakness, that there was no way she would be able to participate in her own therapy. That's when I insisted (rather inelegantly, I must admit, including uncontrollable tears) that her diagnosis be revisited and the rehab visit be canceled for the time being. Thank the gods of healing that attention was paid to my morning observations and my concern.
It's a long story, not yet complete, including such provocative tidbits as:
- The use of one of the podcasts I recorded with my mother to demonstrate my mother's mental orientation on Wednesday night when I took her to the ER;
- The use of one of her test results recorded on the internet to allow the neurologist to compare a head CT taken today with her history from another hospital;
- An episode of me loosing control that I desperately prayed to the gods of decorum to prevent but they wisely declined my plea;
- [related to the immediately previous bullet] An interesting confrontation over whether my demented mother was capable of making her own medical decisions over me making them (despite the fact that all my powers of attorney were in order and on file and she'd been evaluated as demented by the case worker that was assigned to us the first day she was in hospital).
Although it's been a rough, sickly couple of days for my mother and a rough, sleep deprived couple of days for me since Wednesday evening, tonight I'm relaxed and sure that I'll sleep well and deeply with my fingers crossed that she does, indeed, have pneumonia. I know, that sounds bizarre. What?!? Hoping a 90 years old, frail, chronically anemic woman with COPD/Emphysema has pneumonia?!? The thing is, pneumonia can be fixed, especially in those who have fight left. My mother has fight left. I know this because she fought being taken to the ER and is still fighting the possible rehab episode. And, besides that, I know my mother, and I'm not afraid of the possibility of her dying. She might as a result of this episode of ill health. But, I sense she's not yet ready to go, thus, I think, if she has her way and is supported by myself and at least a few of the professionals collaborating in her care, she and our kitties, whom she misses terribly and who miss her just as fervently, will soon be reunited and she and I will continue our journey, the one she is still convinced is blessed with immortality.
But, of course, you never know. She might be closer to eternity than either of us think and we might both be surprised by an imminent separation.
May the gods of air and light,
inspire my mother's lungs tonight.
To bed, to bed, to buy a white horse...
All material, except that not written by me, copyright at time of posting by Gail Rae Hudson