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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.

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Your mother is having a very quick progression here, no matter her young age. Swallow deficits are common across the spectrum of neurological problems. Lewy's Dementia is notorious for it, and what you just described sounds classic for Lewy's as well as others. With Lewy's a person becomes frozen, sometimes with a tapping leg or foot, and cannot swallow for some period. There may or may not be hallucination. But just one symptom of Lewy's.
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.
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Kimit1976 Sep 2020
Thank you yes I know it is not long and I know everyone is different but I wish we at least had an idea. We were going to take her to long term care but couldn't do it because of covid restrictions. I just couldn't imagine doing that with her already confused then you put her somewhere where we can't have face to face ir hug her till end of life. Hospice aid said today they could hear her aspirating. Don't really know if its alot or just as what they heard before we have done a swallow test. A few months ago and the the same speech theripist that did that sae her daily while she was in the hospital and said she has declined rapidly. That is when they said a few weeks to a couple months. I dod tell them about what happened on Saturday and they said all her vitals were good on monday. Right now the nurse is only coming in twice a week but an aid daily and have hired care so far for eight hours a day.
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When my Mom had a "good BM" her blood pressure would drop and she would sit in her chair and take a little nap.

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.
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Mimicing Parkinson's is more indicative of Lewy body dementia as mentioned below. AD and LBD can co-exist, however. It's referred to as Mixed Dementia. Swallowing difficulty and poor muscle control are usually end stage symptoms and aspirational pneumonia is certainly a possiblity. Being a mom of teenagers, I think it may be time to look for a care facility for your MIL. A speech therapist can help evaluate her swallowing issues. The responsibility of caregiving gets tougher and tougher. Know your limits.
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