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Taken from the Lewy Body Dementia Association website;

"End-of-life issues include determining what medical interventions are desired, or should be avoided, when a person is dying. Such interventions include emergency care or hospitalization, CPR (cardiopulmonary resuscitation), ventilator use, artificial nutrition (tube feeding), artificial hydration (intravenous fluids) and comfort care.

So many of these decisions are intensely personal ones and require asking difficult questions. What are the care priorities are of the ill person? Do they want to extend their functional ability, maximize their quality of life, or lengthen life? Comfort care, which is care that alleviates pain and distress, can be started in any stage of dementia, but is an important part of caring for the person with end-stage dementia. It improves quality of life through reduction of distress.

Tube Feeding or No Tube Feeding? That is the Question.
The biggest question I wrestled with when my father was at the end of his life was nutrition. He had already gone 3 days without food or drink. I thought perhaps if we used tube feeding or intravenous fluids it might strengthen his ability to recover. But the flip side of the coin kept staring me in the face. What was I saving him for?

People in the advanced stage of LBD are in a progressive state of physical decline. Certainly that was the case with Dad. Even if he recovered from the flu, he’d never recover from advanced LBD. Like others with LBD, muscle weakness may affect his swallowing ability. This can lead to aspirating food or liquid, resulting in pneumonia, a common cause of death in advanced dementia. Even without problems with aspiration, he’d probably succumb to pneumonia or heart failure after months of being bedridden. After conferring with those closest to him, I decided to leave my father’s fate in nature’s hands; either his fever would break, or he would begin the dying process.

The Evidence is Clear
I later learned what experts recommend about tube feeding and advanced dementia care. There is no evidence that supports the use of feeding tubes in advanced dementia and experts recommend that it not even be offered as a treatment option. Instead, the recommendation by the American Geriatrics Society is to provide food or liquid by hand-feeding, only to the extent that it is enjoyed by the person receiving care. There is no evidence of longer survival, less pneumonia, improved wound healing, weight gain or improved quality of life with the use of feeding tubes.

So how did nature take its course? After a week of being unresponsive from the fever, out of the blue my father opened his eyes, stared straight into mine, took a few more breaths and left this world. It’s been almost four years now. And I am still at peace with my decision.

For more information on comfort care at end of life, read “End of Life: Helping With Comfort and Care” published by the National Institute on Aging."

I know this is difficult to read and even more difficult to be the "captain of the ship" on your mom's journey. I would suggest you try to read the information on the LBDA website. God bless you both in these times.
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Jen, I am moving your post back to the front page. Hopefully a caregiver who is familiar with this will answer you.
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