They said anywhere from a few weeks to 2 months. Since it mimics Parkinson's she has had trouble swallowing and now is worse and they say they believe she is aspirating. She stopped eating 6 -7 days ago then on Thurs. night she wanted to, then 1 time yesterday and 1 time today it is very little. Tonight after she took her couple of bites we could tell she had to go to bathroom she did not fully make it it was a mess. Got her in the shower and after that I was getting her dressed and it was like she was having a stroke or something. She just put her head down when I would lift it to get her to look it was like she was frozen and had no idea who I was. I somehow got her dressed my sister in law walked by yelled for help we got her into bed finally and she was just laying there staring. I have never seen this before any ideas? I thought maybe last 2 days were like her rally days because today she even came outside smiling. She is also non verbal due to the muscles in her throat not working.
My daughter is also an RN and says she would never put anyone on a feeding tube that is like your Mom. Once inserted, can't uninsert because then thats considered starving them. Not sure how Hospice would handle this anyway. I would call the Hospice Nurse and run this by her. She is suppose to be available 24/7.
A swallowing problem is the first phase if dying. Then they aren't hungry or thirsty because the body is shutting down. They may rally but that maybe short lived. You need the Nurse to come and evaluate the situation.
Important thing here is that you are dealing with rapid progression and with the swallow deficit. With it you are now looking soon at a decision about whether or not to administer artificially administered nutrition. I already have written in my Advanced Directive that dialysis and nutrition such as this is forbidden. As a nurse I know where it leads. So you are looking at a tough decision coming, because continuing to feed is going to mean aspiration pneumonia due to fluid and food in the lungs. Did your mother make her wishes known to you early in her life? Do you plan to move into palliative care or hospice care?
I am so sorry. At the very least I think this is soon 24/7 care that you will not be able to do at home. I know you will have spoken with her doctor about this, and I hope your Mom will have a swallow evaluation, because continued eating may cause pneumonia at any time.