Today has been one of those days where I could have walked out and kept going. At 7 AM its screaming of "Hello!" multiple times. Then when it was time to eat, it was having to touch the food after tasting and then not wanting nothing to do with it. At dinner time, I made a good dinner, and she took two bites and then wouldn't eat, and after that stuck her tongue out multiple times! I pushed the ensure plus for lunch and chocolate pudding for a snack just to get something in her system.

I did notice today that there was a bit more confusion and trying to tell me something but nothing made sense.

How the heck do you all deal with this when as her son and caregiver you want to make sure she gets her nutrition, but at times you say the hell with it?

Is there more of this to come? Will this ultimately get worse?


If it started suddenly, get her checked for a UTI.
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Reply to tacy022

I have been told that no two Parkinson’s patients are the same. My cousin cares for her mom who has Parkinson’s and dementia and has been on hospice for over two years. She also has her dad who was her mom’s primary caretaker and has had strokes and also requires care. She’s been living with her parents for probably three years now. Her mother must be watched every minute. After being placed on hospice, my cousin started her mom on CBD oil. She had stopped talking, had no facial expression, had hallucinations. Almost immediately she improved. Started smiling and talking. Over the year she improved significantly. In July she fell and even though she didn’t break any bones she lost most of her improvements and needed a wheel chair. It took three months but she is now smiling and talking and walking again. Again, each person is different. Caretaking her mom has been very difficult. I know she is committed to seeing it through but it has come at a tremendous cost. Cousins only child graduated high school and college and got married during her caretaking years. She is estranged from her husband. She does try to get away as often as possible.
Cousin has a MOW route she volunteers for. She takes her mom with her. Hers is a rural route where she delivers frozen meals weekly.
She takes both parents to the local senior center daily for lunch. This gets them out of the house and takes care of one meal daily. She also goes to all seminars in her area on Parkinson’s. She took both parents to a Rock Steady boxing for Parkinson’s location for a few years which she thought was helpful. Google this for your area to see if it is available.
Her mom did lose down to below 100 lbs but has seemed to stabilize in the 90s. She likes sweets but will eat her meals most of the time.
Will it get worse? Probably. But each of our journeys are leading in only one direction. Call your Area Agency on Aging to learn of any services available for your mom and see how you can connect with others. Caretaking is difficult regardless of the diagnosis. I wish you luck.
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Reply to 97yroldmom
NeedHelpWithMom Oct 27, 2019
This is true. My mom had a slower progression of Parkinson’s disease because she was diagnosed later in life. The people who are diagnosed younger like Michael J. Fox have faster progression.

So many variables. I spoke at length with her neurologist and everyone has an individual reaction to the disease. Neurological diseases are tough to live with and they do not improve, nor us there a cure. Meds are prescribed and that’s the best a person can do. Monitor the symptoms and control as best as possible with meds and exercise to help with strength and balance. Falls are common due to the mind and body issues that occur with this illness.
My mom has Parkinson’s but no dementia. Her appetite is fine.

My mom’s issue is being a perfectionist but she has ALWAYS been that way. Not related to aging. I am no longer her primary caregiver.

Sorry I couldn’t help but many others on here are very qualified to answer your question. They have or have had a parent with dementia.

Best wishes for you and many hugs. It sounds like you are doing your best to please your mom.
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Reply to NeedHelpWithMom

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