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My mother has Parkinson's and while she can still eat and drink, I am preparing myself for what may lie ahead. She doesn't want CPR, feeding tube, life support, etc. and I will respect her wishes. I have been told by a caregiver that watching someone die from lack of nutrition (i.e. no feeding tube) is horrible to watch. Does anyone have any first hand knowledge? I know every patient is different...

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Speak with the doctor, he can explain that when someone is in the state where they can no longer eat, they do not become hungry like you and I. End of life decisions are very personal, and honoring those decisions is the last thing we can do for our loved ones. My grandma had dementia so when she could no longer eat my father asked about a feeding tube. A feeding tube would not make her better, it would not increase her quality of life due to the progression of her disease. A feeding tube may keep her body alive longer, but she could have suffered during that time. It was more humane to not insert a feeding tube than to have her body exist. I think the death is harder for those left behind because we have lost something valuable. I think we should celebrate the lives of our loved ones and while not happy, be comfortable in the knowledge they no longer have to suffer.
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At the point where the body is in a dying process, as with Parkinson's a few months or weeks from the end, the body is shutting down. Food is not needed except to fuel a body that is being used for work or complex mental tasks. If you or I put too much fuel in our bodies, we get sick from too much (literally get a belly-ache, or even worse!). Imagine what that would be like, to be force-fed foods when you were bedridden and have no appetite. The best thing to do for these patients is to keep their mouth moist, offer ice chips, humidify they air. But food might just make them more miserable. One of my grandparents died of Parkinson's, ate nothing for about 2 wks, and died. But for about 5 months before that, greatly reduced food intake, couldn't swallow, had to be pureed etc. They were bedridden and couldn't talk, not expending much energy, literally could not do anything. It was difficult to watch, and many times I prayed for the angels to come.....
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I have seen many patients die from many different disease process's most all of which stop eating and it isn't as hard as you may think they simply refuse food as if they are full or just finished a meal. They simply don't want it they don't seem to feel hungry. They start to sleep more and more. Everything just seems to slow down. With the help of Hospice it can actually be a very peaceful ending.
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My Dad had Dementia and eventually failed a swallow study. He did not want a feeding tube so the decicion was made to allow him to have the solids and thickened liquids he wanted. We knew that swallowing difficulties could lead to aspiration and might cause Pnemonia. This could have shortened his life. We felt comfortable following his wishes and allowing nature to take its course. He did pass away but did not get pnemonia.
These decisions are difficult for families but discuss it with your Doctor and Hospice as well.
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Your mother needs to fill out a MOLST form, which her MD has to sign.
It's "Medical Orders for Life Sustaining Treatment"
You have been given incorrect information. When mom stops eating, it means the system is shutting down. The horrible part is when patients are not given morphine to ease their breathing and relieve muscle contractions. Another horror is not giving any medications for delirium. Giving too much fluids fills up the lungs and legs and that is painful too. Talk to the MD or a Hospice Nurse.
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