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08/20/2014

Comments

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Carolyn Dietrich

Thank you for talking about this. I worked at a hospital before I retired and it's often "assumed" by those in the medical field that people will know these things and they don't. My husband and I had to make some decisions for my mother-in-law and we did so based her quality of life and level of fear as a dementia patient who no longer understood what was going on. Those who are caring for the loved one and having to make decisions for them need to know it's okay to not try everything and need to ask themselves if they are doing it for the good of the patient or to make themselves feel better.

Angela

Thank you, Carol, for your wisdom and insight. You work right on the front line of life, and I admire the compassion and respect you extend to those you care for each day.

Your light shines through in so many, many ways.

Judy H.

This is really, really important information. You are correct that not everyone knows enough about these issues. Thanks for laying it out there clearly.

KerowynA

Carol - We as caregivers do suffer from fear of questioning, from not knowing what questions to ask and from not knowing our rights as caregivers.

When my Dad with dementia developed sepsis, I made the very difficult decision to not have a feeding tube put in and to ease back from full (hard-mask) oxygen. The doctor supported me, but Dad's nurse and respiratory therapist clearly disapproved for religious reasons, as this would hasten Dad's death.

Unbeknownst to me, the respiratory therapist didn't exactly follow the doctor's orders -- instead of using nose tubes (I know they are called something else, but I don't know the term) for oxygen delivery, she put Dad in a full soft face mask.

I was too ignorant to know that there was a difference and too intimidated to ask questions, so for the next six hours I watched Dad, unresponsive, take deep shuddering breaths and struggle for every breath.

During this time I never saw the nurse again, but the respiratory therapist kept coming in to check on Dad. I talked to her about Dad's life in dementia -- his fear and anxiety, his repeated hospitalizations that increased that fear and anxiety and his pain from various physical ailments. She clearly became conflicted as she listened to me.

At the shift change, the charge nurse came in, very, very angry, with the chagrined respiratory therapist in tow. It was then I discovered that Dad had been on the wrong kind of oxygen delivery for the past six hours.

They put Dad on a nose tube and within 2 minutes, his breathing had calmed. He passed away peacefully 15 minutes later.

This, exactly this, is why it is so important to ask questions, to be informed and to know your rights as a caregiver. That afternoon haunts me to this day.

Amy at love made my home

I feel so strongly about this, I never could think of the right way to describe it before, but you are so right it is being "rescued". I think of all the things that you have discussed around this topic it is the being rescued that I have the biggest problem with, we can save people from an awful lot of things, but I am not sure that I want to be rescued and then just exist. As I hope I said before, I really am so grateful and glad for these posts Carol. Thank you. xx

Joan

Valuable information here, thanks for being and keeping us so well informed. You're a treasure.

Maureen

Carol, I so very much appreciate the calm, clear way you have of discussing these decisions that so many people hope to avoid/ignore. We each have our own version of what a quality life means as we age but I know for sure, I do not want to be rescued from dying when that is all that is being done.

Fortunately, no one in my family is counting on that next check, be it one from the govt or elsewhere to maintain their own life(style). I doubt that your readers fall into this category but it is one of the sad reasons many people force their 'loved' one to endure an ongoing existence that is truly not 'living'. A dear friend of mine partially reached her burnout point because of this kind of reasoning. Keeping Mama alive meant the check kept coming. Poor, poor Mama.

robin

My husband and I have talked to each other many times about our wishes but your posts made me realize I haven't talked to my kids about it all. Thanks for telling us to be specific - I have always said I want my husband to err on the side of death if there are any questions. I don't want anyone guessing what I want when the time comes.

Sharron

So appreciate your thoughtful information. xox

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My name is carol...

  • I live in Kansas.
  • I write tall tales.
  • I tell about stuff that happened to me.
  • Most of it is true.