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Nuch

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Joined
Jul 23, 2010
Messages
11
Reason
Lost a loved one
Country
US
State
MN
City
Minneapolis
Hi again-
So my mother has decided that she doesn't want bipap, a trach or a feeding tube. I completely respect/accept this decision as I know thats what I would want. She had a scare on Friday where she aspirated water and it caused her to panic which made breathing even harder. We went to the emergency room and luckily she was fine. For the most part she is fine eating and drinking (although she eats very little but loves her wine!) and she only started using the walker yesterday. Her breathing capacity went from 44% in July to 33% when tested last week. I was told once breathing gets difficult for her that's when we call hospice. First of all how do I know when that is? She has dementia as well and can't fully understand her symptoms. I just recently was able to get her to admit she has trouble breathing at night. Is oxygen something that I should get her to try so she has an easier time breathing? And when she does get to the stage where breathing is difficult and we call hospice, what does that mean exactly? Do they sedate her right away and that's my time to say goodbye?
Am feeling like things are progressing quickly now and want to be prepared. Thanks in advance for any advice!
 
Linda, I'm sorry you are going so fast with the progression, and want to bless you for accepting her desires so well. My pulmonary doctor said that when breathing is very bad, the neck is obviously straining as a patient breathes. With calling hospice, they will come out and assess (I think your doctor has to call?) but they no longer are called only at the very end. It has loosened up quite a bit. They should help to make your mother more comfortable. Personally, I think this is the time to call and ask for hospice.
Ann
 
Linda.. you are wise in acknowledging that the dementia effects the appearance of the disease. FTD is sneaky because the patient can appear basically very "normal" but they are unable to connect cause and effect, so she won't neccessarily connect inhaling and exhaling feeling "different" to "difficulty breathing"... so it's up to you and your observations. If she's losing weight and has officially refused peg and Trache, I'd request the hospice evaluation. they can provide so much to make your life easier, and if you are less tired, you and your mom will get better quality from your time together. At least have them do an evaluation.
 
My mom decided to not have the ventilator.She had a feeding tube but it was the end then.I still marvel at the will and dignity she had to not just exist on a machine.She had hospice with oxygen,morphine and zannax and I think she will always be my hero.
 
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