Gladys, my mother-in-law, known to family and friends as "GladyO'," is having a near perfect day visit away from the nursing home. And although the dementia from which she suffers seems to visit more frequently as of late, it hasn't reared its ugly head today. Instead, I find myself dealing with another important medical issue: GladyO's persistent question about end of life.
"What's the red dot for?" GladyO' asks shyly, then leans back in her chair and rubs the tips of the arm rests, waiting to see if I'll confirm what she already knows. "This." She taps the red ink mark on the nursing home bracelet secured around her wrist.
In past visits, GladyO' has informed me that the red dot on her wristlet is the nursing home's code for the "do not resuscitate" a patient, and she believes the red dot represents what is actually known more commonly as a Directive -- the official document which allows a relative to instruct medical professionals and physicians to withhold life-sustaining procedures. GladyO' remembers that I'd witnessed the initial signing of her Directive papers years ago, after having a discussion with her during her admittance stage to the nursing home.
I want to tell GladyO' the red dot on her bracelet is an alert symbol to nursing staff for an Alzheimer's patient. But the day is such a pleasant visit and no matter how many times I've told her in past discussions that the red blot represents her Alzheimer's and is there for her protection, she'll insist differently and become argumentative.
Still, GladyO's comprehension of the red dot has become an uncomfortable reminder, a tangible congruence of family responsibility, difficult life decisions and its consequences. I glance away, remembering a recent conversation with my veterinarian about "disposable pets" and wince. I'm suddenly reminded of my senior dog's frail health and GladyO's juxtaposed query.
Just recently, I'd taken my dog to the vet to have her euthanized, but in the end, I had ignored the informal Directive my family and I had agreed upon. Instead, I'd brought her back home with a bag of meds that would prolong her life. My senior dog's red dot is there; just not visible to the naked eye. Still, I see it.
My mother-in-law leans toward me and whispers that she's found out what the red dot is for.
I look at GladyO', brush back a few scraggly bangs on her forehead and wait. She raises a finger, anxious to share her secret. GladyO' is old -- musty-old. She rocks compulsively and chain smokes the pack of cigarettes I've picked up for her for our special day visit. And even though she suffers from dementia and other health issues, I know GladyO's comprehension of the red dot is not going to be analogous to the dotted ads of a Target presale, which she enjoys.
I lean in closer to study the red dot, and I'm reminded of a frightening day three years ago and the almost fatal misstep caused by the nursing home's negligence in dispensing her drugs. An emergency room doctor had called me at 2:00 A.M. and advised me GladyO' was in critical condition, and he was confirming the red dot order and was proceeding. I'd bolted straight up from bed and quickly rescinded the Directive.
But now we have the ugly red dot again. It looks like an angry pulsing blister.
GladyO' nervously fidgets with her wristlet and says, "Yes, ma'am, that new nurse told me, and she said they won't save me. Won't let me live..."
Her voice trails away.
I look at her and see questions, fear and hope. She's watching me, her caregiver -- her trusted keeper, waiting for me to make the mark disappear.
I take her hand in mine and ask her what she would want.
Her rocking accelerates. The corners of her mouth contort and tighten as she struggles to answer. "I think I'd like to live," she says. "Yes," she proclaims. "Why, yes, I want to be rescued, live a long life. Wouldn't you?"
I hesitate. I silently wonder about my own red dot and its keeper. We all have a GladyO' red dot, I know. And I think about a close relative and how I was the keeper of their red dot. I think about the difficult decision I had to make years ago.
In my mind, GladyO's red dot grows bigger and brighter. I knit my brow, reach down and touch the cheap plastic band. I try to twist it around, out-of-sight. It won't budge. It's tight -- too damn tight.
I smile, tap the bracelet, then remark that it's too restrictive, that maybe it's time to remove it.
A smile ripples across age-creased lips, stretches and then settles comfortably into the corners of her mouth.
My throat tightens. I don't want to be the keeper of the red dot -- anyone's red dot.
But yet I do, and I also know that at any given time we can become a keeper of a loved one's red dot. More importantly, with this difficult responsibility comes additional duties and issues of critical importance to be the strongest advocate, eyes and voice for your loved one, and to improve the quality care of our seniors. Current national studies and news releases have repeatedly shown us that most nursing homes around the nation are not making the grade; they are failing and are providing seriously inadequate nursing care. Check in with your State Elder Care Division to become an advocate for a nursing home senior and to also find out if the nursing home you choose for a loved one has received a failing grade.
GladyO' Richardson
10/28/1932 - 10/10/2010
Cause of death: Lithium Toxicity
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As your article points out, many institutions fail to comfort and/or listen to residents/patients who may not be in agreement with their own past decisions. GladyO and others in this situation should be listened to and assisted in reevaluated their choices. No matter what we have once written in an advance healthcare directive, we can always ammend it at a later date (if we are deemed to be mentally competent). If we lack competency, it is up to our loved ones to interpret our distress and do everything to help us make peace with our choices.
for some reason his carefully crafted DNR papers were not transferred with
him. My mother only found out because she was looking through his chart
for information on one of his meds. The DNR directive had been replaced
by some sort of 'Life at all Costs' card. No one would admit to doing this;
their story was that, since there was no DNR the standard procedure was
to use every intervention. No one had discussed this with any family member,
of whom there were plenty at hand, including my brother who is an ER doctor.
(And my father was still competent enough to state that he was a DNR.)
Well, they got that fixed in a hurry after my brother said a few choice words.
But for the average family, this could be a big problem.
Moral of the story -- make sure ALL paperwork is still current and filed properly.
The reason you do not know of the 'red dot' is because it is GladyO's comprehension of -- and a metaphore for my family as I relate back to and state here:
"I want to tell GladyO' the red dot on her bracelet is an alert symbol to nursing staff for an Alzheimer's patient. But the day is such a pleasant visit and no matter how many times I've told her in past discussions that the red blot represents her Alzheimer's and is there for her protection ..."
Nursing homes will put color coded dots on wristlets to alert if the person is a wanderer, diabetic, subject to falls, etc...
Kindest
Kim
I am in a very different situation. My wife is completely cognizant of what is happening in the nursing home; but she needs a couple of nurse's aids just to get her in an out of the bed, transfer her to a chair for a shower, etc. She is also in a special air bed because of problems with skin integrity.
She is NOT a DNR; and that is by her choice. She's been there for over two years now; and I keep hoping enough things will turn around that we can bring her home; but she is not yet a Medicare patient and I cannot get that same bed here in our house without her having Medicare! (There's more to the story than this, of course.)
It is killing me to know how much she wants to come home and to know that financially (poverty level) she's going to stay there until she has another stroke or they drop her or make some medication error that harms her.
Enough for now. Very well written and helpful.
She sounds like one of those millions of people for whom the last two weeks of life are the costliest for Medicare. Poor health choices for a lifetime, and then Medicare spends hundreds of thousands at the very end. With no "red dot," she would have an artificial breathing machine and electrical stimuli to restore her heartbeat when it stops. Did she really want to be on a breathing machine? The red dot should represent a discussion of options, choices, and their consequences.
I had that same thought when the author spoke of the time GladyO' was resuscitated three years ago, despite a directive. I do wonder about quality of life versus cost of care.
My father executed a Living Will and Right to Die Statement many years ago, before his dementia would have precluded him from doing so. Over the years, when he is having a good day, I gently and in a round-about way question him about whether he would want to be resuccitated if something happened.
His answer has always been the same, "No." This is very difficult for me, knowing I will be the one to have to honor his wishes when the time comes, but they ARE his wishes.