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And The Descent Continues

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Parkinson's Disease
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Posted 12/4/2006 4:46 PM (GMT 0)
I am not sure if the disease is advancing more or what is happening with Mom's body, specifically her bowels. Saturday brought 3 BM's, not too bad to deal with, Sunday was only 1 BM, but very loose and the odour was unreal. Today was 1 more, but worse than anything I have dealt with in the time that Mom has been here. Mom does not even realize she has gone and she takes no notice of the smell. Thank goodness for Mom's support worker this morning, between the two of us we were able to clean her up without too much rolling or discomfort to her.

Her willingness to get up and out of bed has decreased. Mom has asked more and more to remain in bed. The sleeping continues, but at times when she wakes from a sleep, I don't know what she will do. She will be nasty, or very sad with much crying, sometimes just a lost look on her face. If she isn't sleeping, then it is staring and more staring. She continues to be unresponsive and when she does answer it is usually "yes" or "no" or "I don't know".

I am not sure what lies ahead for Mom. I'm not sure of how to make things better for her. When is it time to stop all the meds, it is only Sinemet & Comtan 3x/day? The drugs are not doing anything to increase her mobility. I have asked Mom and she is not in pain.

If any one knows where I can find out more information about the "end" stage of PD, please let me know. As I have said before, the hallucinations are still here, she has dementia, non-weight bearing and the appetite is decreasing, what next? I know that no one knows for sure, not even the doctors, but it is so frustrating. The days are getting longer and very lonely.

Posted 12/4/2006 6:34 PM (GMT 0)
CG,Sorry you and your mother are going thru this.Sinemet aides with other functions besides movement such as swallowing,decreasing rigidity,and numerous other functions.For this reason I would check with the neurologist before making any med changes.Wish you the best Ed.
Posted 12/24/2006 1:44 AM (GMT 0)
I have left this on this thread to point out an obvious scam.This individual is selling a product,and if you email they have your email address,and you will get plenty of spam.protect your privacy.Please note this is a first time poster,and this individual does not introduce themselves or disclose if they have PD.I believe goldnorse is a Korean co. Ed
Posted 12/24/2006 8:56 AM (GMT 0)
Thank you so much for pointing out this scam. I found it difficult to read when "he" informed me about treating my Mom better. I think it is terrible that there are people like this, out there and at the holiday season no less !!!!
Posted 12/25/2006 12:44 AM (GMT 0)
Share survive,Your last post was a violation of rule 12.Please note that decisions about health,and well being are personal.for both caretakers as well as patients.Enough said have a Merry Christmas.Ed
Posted 12/29/2006 7:43 PM (GMT 0)
Daughter,

Your mom's decreasing appetite is her way of slowing down. She will probably sleep more now and eat even less. Please just let her body be the guide to what she needs. My mom-in-law did this just before she caught a cold that turned into pneumonia that took her. She became more distant and ate less every day. She seemed to perk up for Bob Barker on the Price is Right, but that was about it. I believe it was because she remembered him from her past and everything else on TV was new and strange. She became almost child like in her nighttime fears and often had to be sat with to soothe her back to sleep.

I think of you often with your vigil. It's such a long good bye... Can you take a break when the care workers come over? I used to go out in my car and drive around with the stereo up LOUD just to contrast the 'quiet, sick house' atmosphere at home. I also went out to the farmer's market and bought vegetables that took lots of time to clean and prepare... things I normally wouldn't take time for. I did this for myself. I used to make quick trips to the St. Vincent de Paul Store and Salvation Army store, too, to purchase paperback books for reading. That way I didn't have to worry about return dates at the Library.

I'll be thinking of you.
Posted 1/11/2007 6:27 AM (GMT 0)

I have reread the last post from Jeannine and a phrase caught my eye... it's such a long goodbye... Not only is it a long goodbye, but a very lonely one. Most days, Mom does not speak, yet I know that she can. Why doesn't she, what have I done or haven't done... no one knows. I wish there was a way I could understand what Mom feels, what does she think about.

It's one thing to provide for her basic needs, but how can I reach her ? How can I calm her fears and perhaps mine as well ? I realize I am asking for the impossible, just to have one more talk with my Mom. How simple that sounds and how wonderful it would be. I guess I need to hear her say that I'm doing a good job with her, that it's okay. How can I miss her so much when I am with her ?

Well, tomorrow is another day and it could be a great one, let's keep on hoping.

Posted 1/11/2007 12:20 PM (GMT 0)
I hope you get your wish.Sending thoughts and prayers your way.Ed
Posted 1/11/2007 12:46 PM (GMT 0)

It must be very difficult for you, and I won't pretend to know what you are experiencing.  Perhaps a local Hospice Center could give you some incite into what your mother is going through and how to help her and yourself.

Good Luck and good job,

Our thoughts are with you

Jerry

Posted 1/11/2007 6:51 PM (GMT 0)
My Dad died a few years ago. He did not have PD and in the end he just gave up. Wouldn't eat, barely talked wouldn't drink. He was totally aware and not senile or anything. He just felt (I think) that with a fragile body his life was getting more difficult. He was 93

He made his choice. Maybe your Mom is too.... it is very sad but at the end of the day it sounds like you are doing everything in your power to make her life easier.

With lots of love

girlirish
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