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My mom lives with me and my family now for 20months. She has been on hospice for 18mo. She is 85yrs old with Lewy Body Dementia and parkinsons low thyroid, arthritis, 70% hearing loss and poor vision.. Her mobility isn't too bad but her dementia is getting really bad. She has swallowing problems and her behavior is unmanageable. There is no reasoning with her and she is very unhappy and agitated.
She is on Zoloft, Xanax, and Seroquel. I have asked hospice to try Aricept but they said it is not very effective. Instead, they want to up the Seroquel from 25mg to 50mg in the morning. She also takes 50mg at night . She takes 1mg Xanax three times a day. 150mg Zoloft at bedtime. She is on thryoid supplement, Sinemet, stomach acid reducer.She has had mild pneumonia once and treated for it. The neurologist said it is not a matter of if she will get aspiration pneumonia again, it is when.
After being on hospice for 1 1/2 yrs and the fact I think her quality of life isn't good anymore, is it appropriate as POA for me to tell them not to treat her if she gets it again. Just pain meds to keep her comfortable. This "hospice" company is not what I think of as hospice. My mom is very thin and frail yet pretty independent. She is incontinent but can go to the bathroom herself. She can dress herself and make herself lunch. I do her laundry, shopping, cook her meals, and take care of her meds. The hospice aide gives her a shower.
They had treated many UTI's but how many times should they treat pneumonia? I see her dementia getting worse, her condition deteriorating real slowly, and her going for years in this condition till the next time she develops pneumonia.

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Jeannegibbs, thank you for sharing your expertise in dealing with LBD. Pstiegman, my mom has been deemed incompetent by two doctors so the medical POA has been activated so I think I am her Health care proxy.
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My husband (Lewy Body Dementia) was treated for pneumonia twice in the hospital and once at home, over a nine year period. Once he was on hospice I would not have treated pneumonia except to keep him comfortable. (I was his health care proxy and very in tune with his wishes.) He died of pneumonia and pulmonary embolism -- the most common causes of death in LBD. The autopsy report said he would have died of a heart attack very soon in any case.

In my opinion, once a person with a terminal condition is in the active stages of dying, it is not appropriate to continue to treat them, except to maintain their comfort and dignity. My husband continued on his seroquel -- being agitated is not comfortable -- and on several other drugs for bothersome symptoms. If he had had a severe cough or chest pains or symptoms that really bothered him then I would have followed hospice's suggestions for dealing with them. As it was, his final bout of pneumonia did not have overt symptoms that needed treatment.
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I would certainly give her antibiotics and pain meds, but would not put her through a protracted hospital stay. Hospice means no extraordinary heroic measures. As POA you are only supposed to sign things she cannot. She should have someone appointed as Health Care Proxy who would then have the authority to make decisions in consult with the MD.
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