Advocacy, Death & Dying, Life & Living

what if we treated babies like this?

En français ici.

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The way we care (or not) for our most vulnerable reflects who we are as people.

Let’s imagine you are a young mother who has just given birth to a frail baby girl, your first child. She’s seven weeks early and terribly sick.

“We’ve done everything we can,” the doctors say after a few days. “We’re so sorry. She has six, maybe eight weeks at most. There’s nothing we can do.”

You are torn to pieces. You want to be as close to her for as long as you can, your baby girl who is dying. You spend your days peering through the glass into the special care unit in which she lies next to others who have no hope. Once each day they let you in so you can touch your baby’s skin, and let her impossibly small fingers try to curl around one of yours. You feel her life force. You pour your love and energy into her like water from a pitcher into a fast-flowing stream. You are exhausted, depleted. But whatever you have left you give to her. You connect with her. You feel it. She feels it too. She is your flesh and blood.

When she is fourteen days old, you arrive to find they have taken her incubator away and she’s shivering with cold. You watch her–a wisp of life alone in a strange world she doesn’t understand–and you are enraged at the injustice. You speak more loudly than you had intended when you finally find a nurse.

“What are you doing? Where is my baby’s incubator? She’s cold!”

“There’s no point wasting money on keeping your baby warm in an incubator,” the nurse is matter of fact. “She’ll be dead in a few weeks anyway, and she doesn’t feel the cold. She doesn’t feel anything. Premature babies don’t have feelings.”

You know that’s not true. You feel her feeling, despite everything. When you hear her cry it rips you apart. You want to help her. You are her mother. But you swallow your protests to protect her from further harm. One day you notice her diaper is wet; it’s not the first time. It has soaked through to the dirty blanket on which she lies. You can’t change her yourself; it’s against the rules. If you step out of line they may not allow you to see your baby at all, even through the looking glass. So you find a nurse.

“My baby needs to be changed,” you say. “She’s wet and uncomfortable.”

“Oh,” the nurse smiles, “We just changed her four hours ago. She’s not scheduled to be changed for another four hours. And trust me, we know what’s best for her.”

But you can see they don’t. No, they don’t know what’s best at all. They only know what appears efficient, what is easy, what has always been done, or what someone has told them to do. It’s all about procedures, not people.

“But she’s wet now,” you can’t help yourself. “She needs to be changed now, not four hours from now.”

The nurse’s face becomes a mask. “We have a schedule. That’s how we do things.”

“What about a blanket? May I have a blanket for her?” You plead. You beg. She’s your baby.

“I’m sorry, we don’t have extra blankets,” the nurse says, her voice rising, her face tighter. “And she can’t tell the difference between clean and dirty or hot and cold anyway. No need to spend good money cleaning blankets for soon-to-be-dead babies.”

Your heart is in pieces. Your hands are tied. One day in the third week, half way to her deadline, you find your daughter limp as a rag doll. You think she might be dead. You rush to find a nurse.

“What happened to my baby?” Your voice quivers; you are on the edge of an abyss.

“Oh,” the nurse says, “She was crying too loud and disturbing the other dying babies. We gave her something to keep her quiet.”

Keep her quiet! Your mind screams. Keep her quiet? You want to shake that nurse until her bones rattle. Your words tumble out like pick up sticks.

“She’s a little baby who is dying. She’s cold and wet. She’s lying on a dirty blanket. Put her back in an incubator. Give her something clean and soft to lie on. Change her diaper so she’s dry and comfortable. She’ll stop crying lickety split.”

“I’m in charge of these soon-to-be-dead babies,” the nurse loses it. “I’ve seen more dying and dead babies than you can count, and I know what I’m talking about.”

“You don’t know my baby,” your voice is suddenly as calm and quiet as death itself. “My baby lived inside me seven months, one week, six hours, thirty-two minutes, forty-eight seconds and a million heartbeats. We shared my body, my blood, my breath. She is part of me. She is me. We are one and the same. I know her. I have seen her in my dreams. And I see her here now. You never felt her stir inside you. You didn’t birth her. You don’t know when she’s in pain.”

The nurse is unmoved. Two days later, your little girl dies. But not from the disease she lived with. From the cold, the wet and the neglect.

https://myalzheimersstory.com/2016/10/21/10-reasons-why-neglect-and-abuse-of-elders-with-dementia-may-be-the-norm-rather-than-the-exception-in-long-term-care-facilities/

https://myalzheimersstory.com/2016/10/28/6-reasons-why-staff-in-long-term-care-facilities-dont-report-incidents-of-elder-abuse-and-neglect/

https://myalzheimersstory.com/2016/11/21/3-reasons-why-family-and-friends-of-people-who-live-with-dementia-in-long-term-care-facilities-dont-report-abuse-and-neglect/

https://myalzheimersstory.com/2016/11/23/3-more-reasons-family-and-friends-of-people-who-live-with-dementia-in-long-term-care-facilities-dont-report-abuse-and-neglect/

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Advocacy, Antipsychotic drugs, Humour

tragically wrong and hilariously funny: john oliver tells the truth about drugs, docs and big bucks

Brilliant lampoon of the sad truth.

https://myalzheimersstory.com/2018/10/09/big-pharma-big-money-big-crime/

https://myalzheimersstory.com/2018/08/23/10-seldom-mentioned-side-effects-of-using-antipsychotics-in-long-term-dementia-care-which-are-also-10-more-good-reasons-we-should-banbpsd/

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Books, Challenges & Solutions, Death & Dying, Hope, Life & Living, Quotes

what matters most

 

Atul Gawande fears or hopes

 

If you or anyone in your family plans on growing older, you must read bestselling author Dr. Atul Gawande’s book Being Mortal: Medicine and What Matters in the End.

It’s full of amazing wisdom, thought-provoking ideas, shocking statistics, heartwrenching stories and down-to-earth information about aging and dying with grace and dignity.

I absolutely love it!

I also love the idea of life being a stairway to heaven…

 

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Death & Dying, Life & Living

i may have alzheimer’s disease

Susan summer 2014
funny, i don’t feel demented most of the time…

I may have Alzheimer’s disease. Or not.

On January 29, 2015, I had my second appointment with a geriatrician; the first was the year before that. In 2014, I scored 29/30 on the Standardized Mini-Mental State Examination (SMMSE or MME for short); I knew the day of the week, but I missed the date. Oops.

A year later I delivered a perfect 30/30. I got the date right because the appointment was the day after my birthday. I turned 59 on January 28, 2015. A nurse administered the test, and then I saw Dr. G., the geriatrician.

I told him that while I had scored perfectly on the test, I had noticed changes in my own behaviour and memory over the last several months.

“The test is only superficial,” Dr. G. said. “What kinds of things have you noticed?”

“Well,” I began, “the other day at breakfast I noticed my toast was sitting on the table, not on the plate where it should have been. And I had no idea how it got there.” He made a note of it.

“I find things in places I wouldn’t normally put them. Nothing like the phone in the fridge or anything, but little things like a sweater in the wrong drawer, or an aluminum pot with the glass casseroles instead of with the pots where it should be.” He made a note of that too.

“Sometimes I can’t remember how to spell words I know how to spell,” I went on. “And sometimes I’ll be working on something and all of a sudden my mind just goes blank. Completely blank. It’s like a vacant parking lot – no cars there, nothing driving in or out. Just a void in my head, like I’m in some kind of suspended animation.” He took more notes.

“Are you stressed?” He looked up from the scribbles in the dossier. Well yeah, who isn’t? “Not any more than usual,” I replied. Which is true. On a stress scale of one to 10, I’m probably a seven. By comparison, a year ago at this time I hovered around 19 on a scale of one to 10, and during 2011/12 it may have been higher as I cared for a loved one with dementia full-time in the person’s own home.

So overall I’m still stressed, but much less than I have been. SNAFU, really 🙂 I told him about the root canal I had in December, the headache and toothache I’ve had for the last month and that I have no family doctor having been deactivated by the one I had because I hadn’t visited often enough. That seems SO wrong to me, but that’s another story.

I didn’t mention I spend half the day looking for things. Everyone does that. Or at least I think everyone does. I also didn’t tell him I occasionally wonder if I’m driving on the right side of the road or not — that’s been happening since I spent a year in New Zealand in 1979.

Dr. G ordered further tests. An EEG, and some kind of additional memory evaluation to start. They say changes in the brain associated with Alzheimer’s disease may begin years before symptoms appear. I suspect many people choose to deny, mask or hide the symptoms until they become too obvious for those around them to ignore. Perhaps they’re afraid to talk about what’s happening to them.

I may be experiencing the early early early stages of the disease. Or not. Perhaps it’s “normal” aging, or something else entirely. I’m not afraid of getting Alzheimer’s, and I’m not afraid of talking about it. I hope I don’t get it of course! But what I hope and what happens may be different things.

Both my aunts had it, my uncle has it not too. My maternal grandfather died in his fifties of cancer, but I believe some of his sisters had it. I recently learned my paternal grandfather might have had it as well.

I believe my risk of getting Alzheimer’s disease if I live into my 70s is relatively high. By documenting and sharing my experience as others such as Kate Swaffer are, I hope to  help people deal more effectively with the disease today and add to the body of knowledge  that will eventually lead to a cure.

If I don’t get it, so much the better. Tracking that eventuality will also be useful, given my family history. However my destiny unfolds, I’ll keep you posted.

https://myalzheimersstory.com/2018/01/28/born-again-just-for-fun/

https://myalzheimersstory.com/2018/09/15/ascendants-awakening-to-where-and-whom-we-came-from/

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Books, Challenges & Solutions, Death & Dying, Life & Living, Quotes

imagine aging differently

 

MAS AG MD meaning in old age is new

 

If you plan on growing older or anyone in your family does, you must read bestselling author Dr. Atul Gawande’s new book Being Mortal: Medicine and What Matters in the End.

A real eye-opener!

If you like this post, why not subscribe to my free updates?