[Floridagal]

if anyone has handled angry and controlling caregivers i would love to know what you did that helped. the public behavior is different than what occurs in private. i may not be as able as i used to be but i am still a worthy human being. i don't know how long i'll live but somedays i pray i don't wake up to put me and them out of our mutual misery.

[vlhperry]

So Sorry Floridagal,

Yes, your intellience is intact. Paid caregivers usually are very helpful. Have you called her supervisor do disscuss it with her? Your intelligence is telling you to do something. The first thing your intellengence will tell you is to try. Are your emotions getting in the way. Intellengence should overcome emotions everytime.It does take practice to strenghthen that side of your brain. NOW is the time to make a change before you make it a habit.

Make list with two columns. In the first column, write down all the reasons you should not change or call your caregivers supervisor. Try to list pracitcal reasons based on logic, not emotions. In the second column make a list of reasons why you should. Include things outside of your life. Is the caregiver caring for other vulnerable patients? Are they unable to call?

After you have your list, take action. Either accept your caregiver's care or call her supervisor. You do not have to be specific about why you prefer someone else. Just say, "We are not a good fit." If you believe this to be true, if it is not what you believe, just be honest about your caregiver's behaivior. Keep track of examples of behaivior that displeases you. Learn to use mindfullness before makeing impulsive acts or any decision in your life. Life is a gift for you. Don't reject it.

Dianna

[Bob Dawson]

Originally Posted by Floridagal

.... i may not be as able as i used to be but i am still a worthy human being. i don't know how long i'll live but somedays i pray i don't wake up to put me and them out of our mutual misery.

Floridagal, first of all, knock it off with the part about not waking up and being put out of misery, and go with the part that says you are a worthy human being.
You are a worthy human being, and you do not have to endure mistreatment. I have seen a number of situations like this, but I don't want to tell you exactly what to do about it, because every case is different.
I am close to one situation where it is the caregiver who is being worn out, constantly bullied by the person with Parkinson's.
I am involved in another situation where the family caregivers give no care because they think PD is about shaky hands, and what's the big deal about that? They think the PWP is just being lazy and weird.
A common thread is that it helps a lot to have a third-party mediator, facilitator, go in and listen to their stories and set them straight; often the patient and the caregiver have not been communicating.
In one case the Neuro sent in a nurse who has 30 years experience dealing with PD patients, visiting them in their homes, and getting the whole family to smarten up and change their routine and the division of responsibilities - it's a struggle for life with a disease that does not yet have a cure, and we have to talk straight to our family and friends and nurses and doctors, and they have to talk straight in return. Some people may not know how to be a good patient or how to be a good caregiver. But empathy is a learned skill.
The patient and the helper have to SEE each other, and what this disease is doing to them, and how they are going to handle it.

In the end, though, the bottom line is very clear: you are a worthy human being. People must treat you as a worthy human being, or else they can hit the road Jack, and don't be coming back no more, no more, no more.

You will not tolerate being abused. So I would try first for seeing with new eyes with the help of a trained third person; and see with the heart; but your bottom line is that NOBODY is allowed to abuse you.
I am sure there are some experienced caregivers here - is there somebody on the caregiver thread who can chime in with some insight?

This is where the rubber meets the road - the relationships between those with Parkinson's, and all those without Parkinson's, and how it works between them. Just for starters, I keep finding people who have not the foggiest clue what Parkinson's does to you. Even though they are married to one.

[Floridagal]

thanks bob 7 & dianna. my caregiver has become increasingly resentful. i have suggested and actually arranged for breaks from caring for me, tried to be as independent as i possibly can, expressed my appreciation frequently, & it does not seem to make much difference. i know this caretaking is hard. i understand but he makes me cry. i guess i will have to get stronger. prayers appreciated.

[Bob Dawson]

Originally Posted by Floridagal

thanks bob 7 & dianna. my caregiver has become increasingly resentful. ....i know this caretaking is hard. i understand but he makes me cry....

Well, he is not supposed to make you cry. From this distance, he does not seem to be care-taking at all. YOU have Parkinson's and HE is resentful? Hmmm. You have Parkinson's and he makes you cry? Oh my.

[lurkingforacure]

Oh, this makes me crazy. You need to put on Donald Trump's hat and fire his a@#!
I have never heard of a caregiver making his charge cry, what part of "CARE" in caregiver does he not get? He sounds like he is in the totally wrong profession.

Contact the agency and tell them you are done and need a different person. If you are a woman, I would get a woman. If you are a man, get a man. It's not your fault you have PD and it's not your fault he obviously is unhappy in his line of work. Move on with someone who is not there just to pull a check. Or change agencies.

If you have family or good friends physically nearby, get them involved. Even if your family is not near, I would have them make some diplomatic phone calls, just to let the agency know that family is aware of the situation and watching.

It also doesn't hurt to throw out the name of a few supervisors: find out who they are, and let staff you that you and your family have a communication with him/her. I was always amazed at how different the majority of the staff at my mom's rehab facility acted when I either mentioned the supervisor's name, or, gasp, the supervisor actually was on the floor. It was night and day. And that ****** me off even more, to know that they COULD do such a better job but only did it when they had to.

[Bob Dawson]

Floridagal
The topic you have raised - about the patient and the caregivers (whether the caregivers are professionals or family -) is very important to us all; and sooner or later we ALL need caregivers. (There are times when I have to be spoonfed, as one tiny example)

Floridagal would you have some time to look into it for us? Maybe become our in-house go-to gal for all things about Parkies and caregivers.
Senior member Bobbi suggests starting with the sites listed below: (these sites may be pro-caregiver and not pro-patient; but if so you just make it part of the situation.) The patient - caregiver relationship is SO important in our lives, and yet I never really thought about it until you started this thread.
PLEASE CONTINUE.
We need YOU; we need you ALL, and we need you NOW.


Bobbi's Avatar

Join Date: Aug 2006
Posts: 1,842

Caregiver.com
Information Source for CareGivers
http://www.caregiver911.com/

Caregiving & Equipment
http://lifecenter.ric.org/topic/2/

CaringRoad
http://www.caringroad.org

Family Caregiving 101
http://www.familycaregiving101.org/

Long-term Care Givers: For Better and For Worse
http://www.craighospital.org/SCI/MET...CareGivers.asp

National Caregiver Resources
http://lifecenter.ric.org/content/16...pic=&subtopic=

National Family Caregivers Association
http://www.nfcacares.org/

Well Spouse Association: Support for Spousal Caregivers
http://www.wellspouse.org/

[Floridagal]

dear bob and other friends. thanks so much for the caring responses. i appreciate it so much. i would very much like to help in any way i can. i will do some research & start with the sites as soon as i can. today is a better day, you give me hope.

[Bob Dawson]

Originally Posted by Floridagal

dear bob and other friends. thanks so much for the caring responses. i appreciate it so much. i would very much like to help in any way i can. i will do some research & start with the sites as soon as i can. today is a better day, you give me hope.

oh u give me hope too floridagal
i needed to hear what u just said we all hang by a thin thread, but the thread is very strong
here is something i find s trange :

the PWP talk to PWP about caregivers
t he caregivers talk to caregivers about PWP
pwp and caregivers do not talk to each other

here is our twin site, on the other side of the grand canyon
http://www.myparkinsons.org/cgi-bin/...d_show.pl?id=1

[ginnie]

I don't have PD, but other health issues. I had a caregive/friend for 14 years. I am grieving now, because I lost this friendship. I could not take being told what to do so much. It was control, in most facets of my life. I would suck up being told what to do for just so long, then I would have a meltdown and start screaming. This was not healthy for me or for her. I was afraid to go to my own fridge, as I was afraid of putting something back on the wrong shelf. At the store, I didn't get to push the cart, or pick the food, I followed with her list, like a sick puppy. I had to make a change so I did. Now I am terrified of being alone, but it is better than being told when to make the coffee etc.
I know about controlling people.
I live in Fla. too. Where are you located? We all stive to have peace of mind. Change can be awful, and I don't know yet if I did the right thing to let her go. I was just so darn unhappy. ginnie