"I feel [better]...oh [much] better...
...I feel better and [set-ter] and briiiiiight..."
    Quick, thorough, appropriate and very much appreciated response from "our" Hospice team. "We need to talk," is how Mom's Hospice RN initiated the agenda for our meeting today, which included, later, our Hospice Physician.
    And we did. It was refreshing. I was able to place each of my fears on the table and each was fully addressed. Some of the details of the addresses were:

1. My concern about my mother's inappropriateness for acute care management is not only duly noted and affirmed but I was assured that if there comes a time when Hospice is not necessary, detailed efforts will be made to make sure that the care to which she is referred is appropriate and comparable to Hospice.
2. What usually determines whether Hospice is necessary is whether those services being used by a client can be duplicated through another avenue and whether those that can't be duplicated are necessary. There are some, like the weekly RN visits, that can't be duplicated in exactly the way they are delivered by Hospice (for instance, Home Health Care features similar visits but they are tied to specifics like wound treatment) but also may not be necessary if someone is stable, and well cared for, even if they're terminal. Because the quality of care my mother receives through me is so high and encompasses so much, this was a primary concern in my mother's case.
3. My "lock and load" (love that description, courtesy of our Hospice RN) reaction to my concern regarding the possibility of Mom being discharged from Hospice because of the stability of her health profile was, while understandable, considering my prior experience with the medical-industrial complex, premature in the context of Hospice management. It is our Hospice's belief and practice to encourage patients and caregivers/family/relatives, whomever, to approach them immediately, directly and honestly with all concerns, no matter what. Mind you, I've heard this in the past in different medical arenas, done this and been discouraged by being ignored, slighted and/or off-fended. It's rather like the reaction of an abused dog to being petted, our Hospice RN explained. I agree. I also now understand that it isn't necessary to expect the typical years-old response from Hospice that I'm used to getting from Medicine in General.
4. Our Hospice doesn't have a cap problem. However, they also aren't interested in being accused of Medicare fraud, which is why they are so careful to continually reevaluate their clients on schedule and carefully examine borderline cases.
5. Finally, turns out, much to my surprise, my mother is actually registering yet another decline indicator. If the discharge records from the rehab center are even close to correct, she's losing weight. Officially, she's lost 20 pounds in two months. I doubt this, as does the Hospice RN. The RN nurse had her step on the scale three times to confirm her weight, in comparison with her discharge weight two months and a week ago. I even encouraged a fourth weighing, but the RN wisely cut off the weighings at three. The doubt is due to the method used to weigh my mother when the rehab facility discharged her: She was weighed on a scale in her wheelchair and the weight of the wheelchair was subtracted. Now, I never saw her out of her wheelchair during either her entry weighing or her exit weighing, so the chair weight was probably estimated and inaccurate. However, for the following reasons, it is likely that she has lost some weight, even though I'm not skilled at detecting it:
   • Something I mentioned to our Hospice RN about a month ago, a blouse that was tight on my mother when she was in the rehab facility, so tight that, even though it was a favorite blouse of hers, I stopped using it in her rehab wardrobe because I was afraid it would constrict her movement during PT, was, a month ago, loose, and remains so.
   • The Hospice Physician informed me that easy blood sugar control accompanies loss of weight, so it's possible that not only is my mother's tumor eating some of the sugar she gets, since she's losing weight her body is going to appropriate sugar better.
   • Thirdly, the amount of my mother's incontinence has increased since she left rehab. It's not, actually, that her lack of awareness of the necessity to urinate has increased, as that has been very low if not completely eradicated for a very long time. It's that she's not holding onto fluid as well as she used to, despite the amount of electrolytes she receives in her diet. It is more of a challenge, now, to keep her hydrated and more of a challenge to keep her dry during the day. When she was released from rehab I could count on one Depend in the morning and two in the afternoon keeping her dry. I could also count on two Depends during her nap and two plus an additional pad keeping her dry four out of seven nights during sleep. Now, it takes two Depends plus a pad with every day change to keep her from leaking through her clothes (much of the time; occasionally, during a change, her second Depend is dry, but this is very occasional), also to keep her from leaking through during her nap (in say, six out of seven naps) and three Depends plus an additional pad at night to ensure that four out of seven nights will be "dry sheet" nights.
   • Something I didn't recall, as well, until after the Hospice Team left: When my mother "takes to her bed", she is no longer able to easily adjust into the middle of her bed (for comfort and safety). I've been encircling her hips with my arms and scooting her over for about a month and a half, now. I've noticed that over the last three weeks or so, the scooting has been easier...sometimes it's almost as though I'm putting no effort behind it. I attributed this to two circumstances:
     1. That I was becoming more proficient at this task, and;
     2. since I count down before I move her so I won't startle her, I figured she's probably "helping" a bit.
     Although both of these could be true, it is likely, from what was discovered today, that some of this ease can be attributed to weight loss.
   • My own supposition, as well: Could be that she is losing muscle mass over fat mass, in which case it would probably be harder to detect by sight on a day to day basis.

    I was careful to admit to the members of our Hospice Team present today that I feel much more secure, now, for my mother and for my medical-advocate-caregiver self. I think, I mentioned, it was this belief, from the beginning, that we were finally, after nine years, medically secure with Hospice that caused me to freak when the question of my mother's stability and the subsequent possibility (remote, as it turns out, at this point) of discharge arose. I didn't feel that I'd been blindsided by Hospice so much as that I had been waaaay too trusting of what I'd been told; even, waaay to ready to trust because of past and very recent discombobulating medical experiences. I took the burden of Misunderstanding upon myself, which was accurate, but, then, added a heaping helping of Assumptions Based on Past Experiences in Other Medical Arenas and flipped into, well, "lock and load".
    Anyway, I'm okay, now. My mother is, too. She's sleeping off her much too early rising this morning. I'm simmering some aromatic home made chicken soup that's practically a stew. It's raining, again. The Little Girl is snuggled against my rear underneath the couch, which is where she typically hides during storm weather. Mr. Man is curled on Mom's rocker in sleep, keeping the pillow warm for her. Death, no matter how near or far, has taken note that when It wishes to greet my mother, It must be resplendent in It's best bib and tucker, ready for the ballroom. All's right with the world.
    Later.
- posted by Gail Rae @ 17:20   email  this post