It's impossible to describe how it feels to have years of deep background & personal experience with patient advocacy & be so many miles from my sister when she needs that so very much.
From what Mim tells me, the doctors hold out no hope. She seems to have absorbed & accepted that, which doesn't surprise me. She's always expressed a whole view of death. We had two great examples in how both our parents approached their own deaths & Mim seems to be blazing her own similar trail.
But being okay with the idea of death is a far cry from being at peace with the thought of dying. This is where I'm so frustrated.
Apparently - and I haven't talked to anyone on her primary medical team (and the person who does isn't readily available - Mim can't eat or drink anything. From what she said when Peter, John & I were there on Friday, she is okay with that. The stages she expected, from what a doctor apparently said, is that she'll go into a state of malnutrition, then die. However, it seems that what's okay with Mim isn't so okay with her physicians.
Yesterday, Mim said her doctors want her to receive IV nutrition. She made it clear - at least talking to me - that's NOT what she wants. But she hasn't the energy to fight for her preference. Which is the #1 reason patients need an advocate willing to take on the fight - patients, even ones in for a relatively minor procedure, can know what they want, but not be physically or mentally or emotionally able to go to the mat for it.
NO ONE on the face of this earth is as fine a patient advocate as out niece, Whitney. She put us to shame. This was years & years ago - she was in her very early twenties. Mom's medical team wasn't doing what Mom clearly needed. Where we approached it diplomatically - our mother's daughters - Whitney pinned the head nurse to the wall & told her in no uncertain terms that she WOULD do what Mrs. Lockhart needed done, WOULD contact the physician RIGHT now & get his okay for whatever would relieve her grandmother's constipation & she - Whitney - wouldn't leave until it was DONE. Whitney modeled the perfect patient advocate - she knew what Mom needed & wasn't getting, knew who needed to give the approval, knew that the only way her grandmother would get relief was through the woman she had pinned to the wall. And it happened. Neither Mim nor I ever forgot seeing our petite & powerful niece set the bar for patient advocacy.
THAT is what Mim needs, right now. But Whitney is a world away, in Melbourne, AU, while I'm left high & dry here in SE PA.
Even if I had wheels, I'm 60 miles from Toms River. Ideally, we'd have two cars & John could cover, as he does so well, dinners with our older friends & I could spend most of the day & a good part of the evening with Mim - doctors often don't stop by until after visiting hours.
At this moment, a 2nd friend has lent me her car for the day, but that's for local errands & getting her mother to dinner tonight, not for mad dashes to & from the Jersey Shore.
There is a friend who has been visiting Mim practically every day. I am asking her about taking on being Mim's patient advocate. She can't spend the time there, but she is a force of nature, someone I'd trust would move heaven & earth to let my sister's medical team know what Mim wants done, along with the tenacity & temerity to kick up a fuss, if need be. Will be talking to her later today. Fingers crossed.
I spent almost 25 years in the health care benefits field, a marketing & public relations writer. How many articles did I write over the years on being an effective patient advocate? How many mentions of it did I include in executive speeches? How many times was it featured in a flyer or brochure?
Perhaps the #1 thing I took from my years at US Healthcare & Prudential was the realization that doctors, hospital staff & many families expect PATIENTS to speak for themselves. How realistic is it for someone flat on their back in the hospital, all sorts of tubes & wires connecting them to this & that, to dredge up the wherewithal to be the ideal assertive patient? How many of us have a clue how to do it, even when we're in the best of health?
Few people have the background & depth of experience I have in patient advocacy, all due to happenstance totally outside my control. But I can guarantee that if I was in Mim's situation, all of that knowledge & hands-on experience would mean nothing. I wouldn't be able to dredge up the basic energy to make a fuss, let alone take on a fight.
Doctors want to do what doctors want to do. It's often not what the patient wants, not even - it seems - what's always in the patient's best interest.
Mim believes that her situation is terminal. If it is, what she does NOT want is to drag it out. If it is, she wants to be released as soon as possible from a body that no longer serves her. Makes sense to me.
Whatever their reasons, most of the doctors I've come across HATE death - many seem to take it as personal affront to their abilities as physicians. And in despising death, they can tend to prolong a patient's dying. Yes, they can give Mim nutrients which would keep her failing body from total failure. But who's being served by that? Not my sister.
Mim needs a patient advocate. I live 60 miles from her. Non-family members visit every day - it's wonderful for Mim, reassuring to her out-of-state family AND patients with regular visitors are likely to get superior care from the staff. Her friend, Barbara, is acting as on-site liaison. I should be planting myself by her bedside, gettingto know the staff & creating alliances for her care. I should be over there, but we don't have one car of our own, let alone the two we need for me to be there & our clients to be covered.
Am feeling better, being able to write this out. The fact is, Mim needs me - as the sister I was born to be & the patient advocate I've become - and I'm 60 miles away. Even if I had wheels, the wear & tear on my own health - it's a long drive to & from, heading home possibly as late as 10 p.m. - could be ghastly.
Ideally, the friend who visits almost every day will be able to take on some patient advocate support.
Ideally, I'd be able to be there every day, for as long as it takes to see her doctors & make her wishes known/followed.
Ideally, they'd have Whitney to contend with, our petite & powerful niece pinning them to the wall, letting them know, in no uncertain terms, that they WILL do what her aunt wants & she wouldn't leave until it's DONE.
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