Guidance & Help Needed Please

Hello All,

I have a mother that has had PD for about 7 years now. about two years ago I started to take care of her. Things went as good as can be expected. about a year ago she got into her bed and has refused to get out; well she will get out of bed to use the potty chair that is now in her room. She refuses to sit in a chair and eat or just to get up out of the bed. She refuses to go see a doctor or take any medication. She had to be taken to the hospital a few months ago because she lost her balance and I could not hold onto her because of my own health problems. While at the hospital she refused to try and walk with the aid of a nurse and a walker. While at the hospital both her and I asked the doctor if he would put her in a care home, the doctors answer was that she is doing well and does not need to go to a care home. She lied to the doctor about what she could do and I tried to tell him that she does not do anything that she said she does (like walking by herself and getting herself food etc.). Alas to no avail, I had to bring her back home and my child and I had to pull her up the stairs.  In addition to her lying to the doctor she lies about what she can and cant do, She can lift herself up ( I have seen her do this when she thought I was not watching) she just lays there and wants to be lifted up to go use the bathroom. She also says very bad things about me to my child and my child believes her. She wants to act like a 2 year old child, and does things to make sure that I have extra work to do for her, things like letting my pet cats eat from her bowl and drag the food out onto the bed. She will not drink very much water no matter how I beg her, nor will she put lotion on herself (which she can do), and in turn her skin is very dry and it flakes off into the bed and all over her clothes. When I get her out of bed the skin flies into my eyes and then I can’t open that eye till the next day, what makes it worse is that she sprays herself with OFF® and the skin that gets into my eyes has that on it and it burns my eyes. She lays there and scrapes her skin off and I ask her many times not to do it and she says she does not do it. (There is a pile of skin cells lying right next to her legs; it is very obvious what she is doing).  I am at my wits end with my mother. There are no support groups where I live, and the care homes are full and her name is on the list to get into one of them. I need some support and do not know where to turn to get it. She treats me like I HAVE to take care of her and I am about ready to drop her off at the front door of the hospital and let someone else deal with her. Her actions are causing very bogs fights between my child and me and I do not want this to go any further, as my child already hates me because I cant stand my mother any more. If anyone knows of an online chat or anything else that can help me deal with these things I would greatly appreciate the help.  Thank you all for listening.

Lost & Confused

Hello Nene,

Thank you so much for your response to my post. I have my mothers name on a wait list for a care home. We have a few long term care homes here but many are lacking resources and all are full and the waiting list is long: one year or more, and still there is no guarantee that my mother will be able to get into one. Many of these facilities will not even consider her because she has only SS and is not eligible for any financial assistance from the state. I fully understand what you dealt with as it seems as though my mother does not listen to anything that I ask of her, and yet she still can do the things I ask. She knows the situation with the wait for the care home and I believe takes advantage of me because of it. I have read everything I can about PD and according to my readings the very last stages are when people with PD get into a bed and don’t get out. My mother has been in the bed for a year now and she is capable of walking with help and getting into a chair to eat but, like you stated she refuses to do anything. I love her with all my heart and would do anything within my power to help her, however I believe that she is doing this to me to be spiteful and mean. I know it sounds bad; however this has been going on and on for over two years now and it is really testing my sanity. Neither other of my other sibling wants to help with her because of the fact that using the term “mother” for her is very hard because she really was not one to any of her children. It is very hard seeing her like this and thinking that she would do something like this to the only child that cared for her is just ridiculous. She is not depressed, she has a good sense of humor (when she is making it) and she demands things and states that she has a right to have them. She does not treat anyone that comes over like she treats me nor does she treat my children the way that she treats me, and before all of this happened she was mean to everyone that came over and was mean to my children especially my daughter, who consequently now avoids her like the plague. I’ve tried to speak with her about exercising and sitting up to eat and just socializing with my family in general. However when she does get out of bed to eat I have to pay for it dearly because she finds all  kinds of things to say and do to keep me so busy that I don’t even have the time to eat dinner or get a nights sleep. Ahh… thanks for letting me vent and I hope that you and yours are doing well. I tell you I would not wish PD on my worst enemy. Thanks again

Lost&Confused

Hi Pearlinak,

My mom does not act depressed just angry and wants to blame someone for her PD. I guess I get the brunt of it since I am the only child that wants anything to do with her. When she did go to the ER she laughed and made jokes with everyone that attended to her. She will talk and joke with a friend that comes by and even with my x husband. She never pulls any stunts when there is someone else around, never lies nor throws her food on the floor, or even does the fake cry that she has down pat. She does not have a regular doctor and refuses to go see any doctor about the PD. I have pleaded and begged and threatened to leave her at the hospital, but she steadfastly refuses to go see a doctor about her PD. When I told her that she has to stop doing the things that she is doing (meanness, throwing food, wrappers, etc. around, whining only to me when she wants something, rather then just ask-which she does for anyone else and all the other things that she does just for me) her response was to urinate in  the bed this morning. She has never urinated in the bed before and she makes sure to tell me if she has to go all the time before I confronted her with her behavior towards me. No one at the hospital gave me any help or gave me any information of who I could contact. As I said there is a year + wait for care homes and the last DR. in the ER that she seen said to her and me both that she was doing fine and that she did not need to be in a nursing home. This was even after I spoke to him separately about what she could really do and what she told him that she does. I guess I will have to chalk it up to dementia and wait till she has to be put in a mental ward of the local poorhouse,  although I have to say it is more likely that I will end up there first.

P.S.

Neither of us owns a house nor has a lot of money, there is no chapter or group to help anyone deal with PD or a caretaker. Thank you for your advice if things get any worse I guess I will have to call an ambulance to take her to the ER again and just not take no for an answer from the DR. about the care home.