This morning I made a decision about my oversight of Mom...
...at the rehab facility that was difficult but seemed, and still seems, necessary. Over the last few days Mom has become very comfortable at the facility; so much so, especially, I think, because of my ubiquitous presence, that she has somehow decided that she can say "No" to just about everything, including therapy, which she did yesterday. I didn't worry about this yesterday, as she has participated in therapy every single day she has been called to it, even the days in which she was battling the cold. Here at home, as you know if you've been a regular reader, she has what I refer to as "sleep days", when she doesn't want to do much of anything. Usually, within 24-48 hours she is refreshed and rebounds. It's also not uncommon for her to have "feisty" moods, when most of her vocabulary consists of the word "No". However, this rehab situation is too important for her to decide to take a feisty "No" holiday from it; so, today, when she attempted to excuse herself from PT yet again, I stepped in. The facility has rules that disallow personnel from overstepping a resident's "No". I, however, am not paid by the facility and don't have to take "No" for an answer. When Mom attempted to refuse PT this morning, I asked the therapist to step outside the room for a minute. Instead of asking Mom, yet again, if she "wanted" to do therapy, I simply directed her through standing up from her bed, getting into her wheelchair, and handed her over to the therapist.
    I left to make a long overdue Costco run. During the run I contemplated why Mom is getting so comfortable that she thinks it's okay to refuse the purpose of rehab and came to the conclusion that she feels much too at home because of my presence there. She has, on occasion, referred to in as though she is home. Thus, my ability to motivate her is failing...as is my energy in that area...and she is dangerously close to slipping over an edge which will render her emotionally incapable of gaining any more benefit from therapy before her physical abilities are tapped out. I decided it would be best for both of us if, over the next few days, I stay away as much as possible. After a bit more thought I determined that I should still visit in the morning to make sure she was up, changed, bathed, dressed, fed, has taken her meds and in her chair ready for the day. Then, I should visit in the evening just before dinner to make sure she was, again, up (as she usually takes a nap after her afternoon therapy), changed, alert and ready to eat dinner and receive her evening meds. Other than this, it is time for her to fall back on the therapists and the nurses and aids for her motivation, since she is no longer able to be motivated by me. It is as though she has become so comfortable that, in saying no to everything and everyone on her rehab schedule, she is actually saying no to me, as though we were at home. I decided that, being a sociable person eager to interact with others on pleasant levels, it's entirely possible that, without me there, she will be eager to follow the lead of whomever is in her room suggesting activity to her.
    I arrived back at the facility at 1130 from my Costco run. I first informed the Day Floor Nurse for today of my plan. He agreed with everything I said. Then, I let the CNA on duty know, and also informed her PT and OT. The latter two both demurred in regard to my mother actually saying "No" to me, rather than to therapy, both underlined that my presence is important to my mother, but understood what I was saying and even agreed to cooperate insofar as splitting her therapies so that she'd have something to do both in the morning and in the afternoon.
    I also, of course, told Mom of my plan and my reasons for it. She took it well. Of course, she will probably not remember and will need to be reminded on a daily basis, but that's all right. My ultimate goal is to get her going gangbusters, again, in therapy and focused, again, as well, on the ultimate goal, which is coming home.
    On my way out the Day Floor Nurse suggested a further elaboration to my plan: Perhaps this would be a good time for me to completely get away for a couple of days, since, he added, it seems that I trust the facility to take good care of my mother, which, at least as of this morning, was true. I left considering this.
    This evening when I arrived at the facility about forty-five minutes before dinner was to be served (as usual, I might add, since I typically vacate the premises during Mom's afternoon sessions and she always takes a nap afterwards), I discovered the following:

• She had not been changed since breakfast, thus, during therapy she had leaked through her industrial strength brief, wetting herself and the pad on her wheelchair;
• Although I had pointed out to the PT as she left with Mom for morning therapy that her oxygen tank was low and would surely need to be changed, apparently it never was. Not only was she left in the chair, at her window seat, after her afternoon therapy, to marinate in her wet clothes on her wet chair, she had also performed some of her therapy without oxygen and was not hooked back up to the concentrator when she was returned to the room. The afternoon shift aid discovered her in this condition.

    By the time I arrived this evening all this had been reversed, but I discovered some of it on my own due to the wet clothes left in her closet and was informed about the oxygen debacle.
    So, it seems, part of the reason my mother has been receiving such good care is that I've been there to make sure she gets changed on a timely basis throughout the day and check that her oxygen tanks are full and she is reconnected to the concentrator when she returns to the room. Thus, I continue, after all these weeks, to have much reason to mistrust my mother's total care to any facility, let alone the rehab facility. Needless to say, I won't be planning a getaway.
    This does not mean I am going to change my plan. I believe I need time to recuperate my ability to motivate my mother and my mother needs to be allowed to rediscover her ability to be motivated by me...and, as well, I need to make some tracks regarding home business: I just discovered, today, that, in the frenzy of keeping up with my mother and her facility care, I spaced paying the feds and state her quarterly estimated income tax. I'd like to be able to restore my Mac, as well, as that has been weighing heavily on my mind. And, the house, itself, needs some general maintenance and rearranging before Mom comes home. However, it looks like I am, once again, going to have to put the pressure on a medical facility, this time the rehab facility. I've decided my first approach is to inform the Day Floor Nurse, tomorrow, of what happened, so that word can filter down. I'll also be speaking to Mom's therapists about the importance of checking to see if she's been changed and keeping up on her oxygen flow. Finally, I've decided to post signs above her bed regarding the importance of her being changed regularly and snuggly (it's fairly common for the briefs to be hanging sloppily off her) and making sure she is hooked up to either full oxygen tanks or the concentrator. I already posted a sign, last week, about another common problem: Her oxygen tubing being caught beneath the wheels of her chair or the legs of her bed so that the flow is blocked.
    So, although I do believe that Mom needs me to be away from her, some, in order for both of us to renew the motivational part of our relationship I, once again, have, in less then 8 hours, had my trust in a facility's ability to take proper care of my mother eroded.
    There are other issues, of course, that I've dealt with day in and day out during my frequent presence there: One, yesterday morning, was a urine rash my mother developed overnight and had scratched into welts. This was disturbing because, although it is common for my mother to leak through here at home at night, we haven't seen a urine rash in years, anywhere on her body. Hydration, too, is a constant sticky subject and I am expecting, in my absence, to discover that I will need to push fluids every morning and evening because the staff isn't good at this throughout the day. I won't have to worry about her tendency to refuse breakfast, as I'll still be showing up to ensure that she won't do this. I'm not worried about lunch. She has never refused this. And, dinner, well, I'll be there for its arrival.
    People, people, people, when will we be able to agree that before the rest of us get old all of us need to turn around our ideas about what the old require from us? They require attention, care, interest and highly compensated professionals and institutions who are motivated well enough by their ability to make a good living tending to the old to actually tend well to them? They require enough staff to do this so that people don't get burned out on a regular basis. They require us to believe, as we do with infants, in their involvement in a life unique to their age rather than in their proximity to death. They require us to imagine what we would feel like not only in their prescription shoes but in their wet clothes, their aging, quirky bodies, their eccentric minds, and, most of all, their incredible ability to carry on despite the miserable odds with which the rest of us beset them? They require us to realize that we are them, they are us...and, just as we decided, in the early years of the last century, that we no longer had the right to toss abandoned children into the deadly warehouses we used to call orphanages, we have no right to consign the old and infirm to the substandard care that passes, these days, for adequate care.
    Bottom line, of course, is that the entire world needs a complete economic overhaul. In the meantime, though, each of us who has an elderly and/or infirm parent needs to open our eyes and stop kidding ourselves that the professionals know what they're doing!!!! In fact, the professionals know what they aren't doing and what they can't do because of economic constraints. That is rule number one. Rule number two is this: If you ignore rule number one, not only will one or both of your parents become its victim, so will you. If you think you can live to be old with that then, by all means, do everything necessary to remain in ignorance.
    Later.
- posted by Gail Rae @ 22:47   email  this post