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Topic Interesting comment...need a good answer... Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2014.04.09 18:33
We were discussing the future with PD and I said, "We aren't going to do well when the disease progresses and worsens, are we?"

He said, "YOU aren't going to do well...you keep watching me for "signs" and "changes...I see you looking at me all the time."

Hmmmm...DO we do that as caregivers? I didn't think I did...I had no answer...I said, "I didn't think I did...hmmm..." He dropped the topic...DO you and what should I have said?

By McCall On 2014.04.10 11:33
I was the one that first spotted what I thought might be PD and I was right and yes I do watch him and question him about what he is feeling, if things seem worse etc.

Nothing wrong with that in my book. The problem I see is that while he usually seems himself, sometimes he is not and I cannot always tell, and if that happens he can be in danger. So yes I watch and I try to evaluate.

and in answer to your original question to him, for us the answer is NO we are not going to do well in the future, I see a very bleak future for both of us.

By Freespirit On 2014.04.10 13:12
I am CONSTANTLY monitoring my husband. Things can change quick with PD. I've learned from past experience to to pay attention and stay on top of "things."
A friend of mine said it well when she said, as caregivers we are constantly putting out little fires hoping to fend off the big ones. I paraphrase, but I sure can relate to this.

In answer to the future. . . my husband is aware that his future with PD is not a comforting one to look forward to. Whenever it comes up, I ALWAYS tell him that I will always be here for him and do the very best I possibly can to make sure he has the very best care possible always.

I don't know what else to say. Providing good care is the only thing I have control over.

By lurkingforacure On 2014.04.10 13:52
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By LOHENGR1N On 2014.04.10 16:23
Jane, I've been holding off comment on this post and I'm not meaning to offend any caregivers. From my point of view as a patient yes close family and caregivers can seem to "hover" watch and note. It's only Human or loving, caring to do. I know with my mind I am always looking around the Doctors waiting room watching to see if I can guess to myself what each patient has and in P.D. I can tell pretty well what medication they are taking also. As I said I think it is only human. Caregivers watch to try to avert trouble and that's good We know from where the hovering comes and it is the heart. However from inside this disease I am (and I think I speak for others here too) constantly assessing my situation ex; I'm feeling shaky is it visible to others? If no one knows I have P.D. will they notice it or do they have to really look for it? All the time and all kinds of things.

So what to do? If you can try to be like a Poker Player, stone face, no tells. It will take practice. As your eyes sweep over us if you notice something try not to stop and stare or sweep your gaze back to it. Most times we know and hope it doesn't scare you if something new is developed. Each relationship is different and so are the dynamics of them so no cut and dried easy answer to give but the way you speak of your relationship with Carl maybe a I'm going to try to be more covert in my spying on you then okay? might have gotten a chucke and okay back. I don't know just a suggestion as We feel under the microscope constantly and then catching a lingering glance and a bit of fear or pain in those loving caregivers eyes you all have it can if only for a moment heighten our helplessness against this disease and or fear that you're scared and saddened that we can't make it right.

All you caregivers are the best and even if we butt heads once in awhile well that's what happens in families and we're one big family here feeling our way through. Take care, best of luck and hang in there

By makrivah On 2014.04.10 22:50
We are 8 years after diagnosis plus MCI a year ago. My beloved PWP is in denial. He takes his meds, but doesn't know what they are or why he takes them. He doesn't read literature or show any curiosity about what is happening to him. He doesn't ask his doctors questions. He has no interest in anything that's happening to him. A friend gave him a book written by a man with PD. My husband reads a paragraph or two (which takes him a very long time) and then tells me that "isn't it amazing, I have some of this stuff too. How strange is that?" As for the things I do, he doesn't notice. A dear friend once referred to me as his caregiver in front of him. He was appalled and totally rejected that he needed any assistance. So I float along in a vapor state, doing what needs to be done while he ignores (or is truly oblivious to) what is happening to him (or should I say, to us). To the point of this thread: my observations of his symptoms go unnoticed. We NEVER discuss the future. Any attempt I make to bring him into reality is rebuffed. Sounds blissful, doesn't it? Maybe for him. For me, I feel like I live a dual existence. What is and what he thinks it is. Sigh. Things could be worse. Love you guys. Thanks for giving me a place to exhale deeply.

By JulieB On 2014.04.12 10:46
I know I have been too watchful (at least outwardly) with Michael. I think it's almost automatic after ten years. Al, your comments turned on a light for me--what you shared and advised was so needed. Thank you. I'm grateful for your viewpoints here, which bring me out of my autopilot/ caregiving wife mode, into the perspective of the PWP. You help me remember compassion over efficiency...sad that I need the reminder! xo

By carman96 On 2014.04.12 11:43
Yes, I admit to hovering. It's hard not to, because it only takes a minute for him to get in trouble. Just now he almost fell into the TV trying to pick up a box I was letting the cat play in. No, I didn't get up and he didn't fall---this time. He has been very lucky he hasn't gotten seriously hurt. He forgets to use his walking stick or he puts it too far away for him to reach. He doesn't understand how impaired he really is. Or he's just trying to prove he can do things by himself, which he rarely can.
So what am I supposed to do? Let him fall? The neurologist told him safety is the most important thing. She said if you fall and get hurt you won't be spending the night at home. It sucks any way you look at it.
I know it's terrible for him, we all know that. Yes, I guess I'm selfish. I don't want to take him to emergency and I don't want him to be in the hospital.
If he was rational, I think he would much rather I hover than to have to be with a paid attendant or in a nursing home.
Poker face? I doubt I could pull that off. Interesting concept though.


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