Been on hospice 16mo! My mom came to live with me 18months ago. She has Lewy Body dementia with Parkinsons. She is quite mobile but has bad swallowing issues. She had a feeding tube for over a year but we had it removed because it was causing her pain and she was eating real well. Her appetite is quite good and she eats quite a bit. She actually did well after the tube was removed. Recently, her muscle mass has really decreased and she is real thin. Hospice says it is a natural part of aging.
I asked the hospice nurse how long she can live wasting away like that. She says people can go on quite a while like that. She said she had a patient that was only 67lbs and had to stay wrapped up in several blankets all the time to keep warm. She said she was so tiny she looked like a child. How awful! Mom has not gotten aspiration pneumonia despite her trouble swallowing and is not in too much pain.
On another note, she is unhappy and very difficult to deal with. She moved in my husband, daughter, and I 18months ago. She treats me horribly, doesn't appreciate anything, and treats me like her personal slave. She wants my undivided attention and I just am too busy. We own a farm with lots of animals and it is a lot of work.I don't know how much longer I can do this. But, if she is really dying, I don't want to send her to a home now. I will not be able to live with the guilt. But, she has been on hospice for 16months and keeps going up and down. Everyone swears she will outlive me as all this stress is affecting my health.
I know deep down it is time for the nursing home. But I think I can do this till January. If I send her to a home and she passes right away it is like the past 18mo was for nothing. What are your experiences with end stage of life and what do you think is happening?