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Topic Personality issue Go to previous topic Go to next topic Go to higher level

By HangingOn On 2015.04.05 08:40
Is this seems if we try to have a conversation about anything... He HAS to be right. I cannot have an opinion on anything that might remotely be different than him. Even my job, he tells me that I am doing things wrong. But at the same time some of the things he says, doesn't seem to make sense, scattered thoughts and odd reasoning. Is this a Parkinson's Disease issue, meds or just trying to keep his place in life discussions?

By Wildcats1958 On 2015.04.05 11:03
This is common of all the things you mention. My husband had a triple by pass in 2008 and had Parkinson at that time. The personality change started in 2000 or I should say the PD enhanced some personality that had already been there. After the 2008 I noticed more determination to be right. I keep thinking that if he would just relax a little and go with the flow and realize that since Mayo Clinic told him I am now to be in charge of various things....that his life would be so much easier. The driving issue was ugly and now seems to have settled down. He has to have the last word. I have become stronger because of being a care giver and now let some of this roll off my back. The cognitive showing up makes it real hard because you NEVER know when it is going to flare up. Then it is very difficult in talking him out of things. He can fool people easily with what he says. Being a caregiver is not for sissy's. I have to have pep talks with myself every day and stay busy. Exercise such as walking helps a lot. I get out to walk for 1/2 hour and he is okay during that. Fresh air, walking, listening to music while I walk and 25 steps later things are better.

By LOHENGR1N On 2015.04.05 13:24
I don't have the answers that are being sought. I can't give any specific answers to everything as there are many factors involved, med's, P.D., personality before disease and the dynamic's of each relationship pre disease. One interesting statement though brought me into this thread and maybe I CAN shed a little light on things. I still have the words and ability to type them out so lets view this from the other side of the looking glass = P.D. Relax and go with the flow, for the most part that's what we try to do Us Parkies. What other choice do we have? However the flow isn't constant it ebbs and surges at times. Like the torrent we're shoved in with the diagnosis. Then as the disease progresses one day we can't get our shoes on or pour coffee all over the counter. Or we have trouble with the phone, microwave or remote to T.V. things we used to have no trouble with now we struggle to make work. Our loved ones and caregivers step in and through love and compassion take it over and make it work. You're only trying to make life easier for Us and We should just relax and go with the flow, however now We sit there looking at our hands that betrayed Us and the remote that refused to obey and see another loss. A loss of independence, a loss of worth another moment of what good am I? Another thing I can't do another thing that has been taken away from me. So maybe later while you're busy We take the remote and try it again just to see if we can work it and we goof it up or get caught and hear what are you doing I told you if you wanted T.V. changed I'd do it for you it's easier that way. It's not easier for us and it isn't great for self-worth either. Simple things putting toast in the toaster maybe we didn't get it all the way down and someone passes by see's it and questions it brings it to our attention? Now We snap and get mad, why, because in your eyes it is another thing we're incapable of and announcing it aloud again We're mad you might as well have put it on the 6 O' clock news! (not really but you said it aloud) brought it to attention and the words were said there's not taking it back I can't even make a toast what the hell good am I? For the most part we were pretty good functioning people before P.D. came and keeps on taking. So at times yes We have to be right in an argument, even if we're wrong we argue trying to keep something, anything we can under control even if it's the illusion of control because Parkinson's keeps taking and we are desperate to not let it take all. It's easy for a Doctor to tell someone that another is now in control, it is easy because the Doctor is in control in the exam room and office. But I wonder how a Doctor would react to someone coming in and taking his stethoscope and reflex hammer away telling him a Nurse was now in control of using them an he would just have to get used to it?
Discussions and being right also depends upon the dynamic of them pre disease did you have witty quick back and forth? Even if you didn't We can have trouble retrieving the words we want a kind of it was right on the tip of my tongue type of thing. Did discussions or arguments cover a range of topics? Changing train of thought is had for Us with P.D. also. We are constantly reminded all day long of what we lost, constantly struggle to keep what we still have and grapple constantly with things in between. And Yes at times you can come in and catch Us in a mess or wonder how in the hell did We get into that position at times like that please don't demand any explanation or accounting, take a moment and try to remember that yes we were told not to or that You'd do that from now on that we were told not to because we did not give it up willingly it was taken from us and we still want to be able to find a way to do it to get it back from the clutches of Parkinson's Disease. So maybe while you were busy in the other room and come into where we've been struggling trying to change the station on T.V. to no success and you ask whattcha doing we may snap watching this damn stupid program we seem mad for no apparent reason to you. I know you're frustrated but try to imagine our frustration and sometimes as long as we're not placing ourselves or others in danger we HAVE to try and learn for ourselves just what we can do before just relinquishing more to P.D. I know it's hard for others too and for loved ones and caregivers but if We're expected to relax and go with the flow You're on the same ride to some extent and should also. Remember to be kind to each other. Take care, best of luck and hang in there

By makrivah On 2015.04.05 14:45
Al, wise words. Thank you for putting these situations in perspective.

By HangingOn On 2015.04.05 16:22
Thank you Wildcats1958 for understanding. I know it is hard for the PWP, but I appreciate your understanding how it is for the caregiver. It is hard not knowing what will set him off. It is also hard to find someone that understands and doesn't comment back on how hard it must be for him and I shouldn't complain as some of my friends do. I am not saying I have it worse than him, just needed to get support from those in the same situation.

By Wildcats1958 On 2015.04.05 18:39
Reply to Hanging on. I sense that you and I are on the same page. One of the things that made our situation worse was that he job took him away from home all day and many night across the state. He started working out of the country before retirement and then at 2000 retirement he continued working out of the country and was gone a month at a time. When it all stopped and the Parkinson had set in and he was around home ALL the time that was a hard assignment for both of us. I ran the place and now I am running things full time again only he is here. He is patient but must also be very angry on the inside. I sure would be and I would let it all out!!

We caregivers are told to stay away from confrontations or don't set them up. Wow! In a real world that is impossible. We are also told to make time for ourselves and get out. That is rather tricky also. Just keep doing what you are doing and comfortable with. My cousin, daughter, counselor and best friends say I have come a long way. There are times when I feel robbed because he can't do any of the things we used to do together. When we do go somewhere he gets dizzy, passes out, falls , gets too tired, legs hurt, spills food etc. I think as a caregiver we start to build our own world/safety net to go to. That is why my walking is about my self. When I go to bed at night in my own room I can read, write, watch TV etc. for a period of time to just be me. I get up early and that space of time with my coffee, book in a quiet corner is about me! But I still know of all the events we are missing in the community etc. and I feel lonely, angry and want out of it. NO good answer for all the emotional feelings. When he has to have the last word and I know the last word isn't any where right that gives me a lot of problem. Once a person is a controller there is no changing them. My PWP has gotten too quiet and I think it may be some depression but could be fear of getting it wrong, can't talk clear or loud enough etc. I have lost the person I used to talk to.

By HangingOn On 2015.04.05 19:04
Thank you again Wildcats1958. I do believe we are on the same page. I have had to go back to work to make ends meet. I worry about him even though he is not dangerous left alone, but worrying is what I do. I come home to whatever mess is left. He is not so far along that he can't do most things, but I do see a huge change lately. Thank you for responding

By Wildcats1958 On 2015.04.05 22:47
Does he wear a med alert around his neck. We live in a retirement community and we were provided with them. I put it around his neck when I run an errand or go walking. He fell two weeks ago, which he does a lot of, and our daughter and son-in-law where here for the day and he fell, cut a ear badly and knocked himself out. He would not have been able to push the pendant. He has passed out and fallen so much that I am sort of numb to it. I don't seem to react except to call 911 and follow to the ER. I think the falls will get worse as the balance is and he is getting PTherapy. The meds are all readjusted again and with the PT there is little left to do. As Mayo keeps telling is progressing. He has two DBS stimulators. Seems I can handle the falls, passing out etc. but I just don't do well when he has those times that the cognitive mind starts failing. It is always a surprise and I don't ever know if it will get worse, out of hand, stay that way etc. etc. When he had the second DBS surgery he didn't handle the anesthesia well and lost his mind for 5 days. That doesn't happen to everyone. He didn't know me and had trouble for a month and was brought back to a nursing home. So when the mind isn't right I just can't handle it.

So far he is home since last October but there are days I wonder how soon he will move. Then there are good days. We do have long term care to use but the total costs per year will be extreme when he has to be moved. I question how long I want to care give as I am 75 and have excellent far!!

By HangingOn On 2015.04.07 19:58
My PWP does not require a lot of assistance at this point. Granted some days are worse, but he just turned 60 and we are just beginning this journey. I have noticed a huge decline in the last month. Memory, anger, and meds not working. I have noticed he doesn't seem to want to try to do things to make things better. I wanted to cry when I saw that he fell asleep while eating. I take walks when I can. No family or friends close by, so that adds a little more stress

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