Dead Weight
    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.
    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?

    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.
    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.
    Later.
- posted by Gail Rae @ 05:37   email  this post