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Topic Do you talk to him/her when YOU are scared? Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.10.13 23:59
Just tossing this out...

When you, as a caregiver, find yourself afraid, either for him, the future, your future, the kids, etc., do you discuss it with the PWP? If so, do you get satisfactory responses?

I guess what I am asking should be answered by both caregivers AND PWP...But, since it is only as a caregiver that I can ask, here is the backstory...

Last week, in Tahoe, Carl had a "spell" that I mentioned in another post. To me, it was scary, since it was his first and we were out of town. At the time, I asked direct questions and got direct answers, but only cursory ones. I didn't want to belabor the point...

The point? I was scared. I wasn't sure what it was, if it was 'normal', or if I did the right thing by not ignoring it, but instead by lightly discussing how he felt, what he wanted to do about it, etc...

SHOULD we talk about unforseen problems? Does it help you as a caregiver, or does it bring too many fears to the forefront? And, as the PWP, do you want to handle things yourself without a lot of questions, or do you really want to know we are afraid? Does it make your journey worse to know we cannot always handle things or that we truly are afraid of PD?

Been mulling this over in my mind, then our daughter, SIL and Nigel came for dinner...Our SIL really wants to understand PD and my husband's issues; but, he wants to, when they found out there was a problem, he asked me some of these same questions...

So, to all of you...please tell me/us if it helps/hurts to really discuss PD issues, especially ones that cause you to be afraid. I know we talk here, but should these same discussions be between caregiver and PWP?

Thanks ahead of time. Hugs to all, Jane

By LOHENGR1N On 2013.10.14 00:48
Jane I think I might have answered this or explained it a little on your traveling post I'll try to answer more and a bit more indepth tomorrow...I'm wiped out from typing right now. Later Kiddo!

By jcoff012 On 2013.10.14 14:08
Thanks, Wonderful Man! I read and reread your powerful post. It was spot on, as we see it.

I answered you in the only context I have, as a recovered cancer patient, who still has chronic leg issues with lymphedema. I, too, at first, not so much now, wondered if people were staring, wondering why I limp and wearing stockings in 100 degree weather.

But, you know, I have come to the conclusion that everyone has issues, just that some of us have ones that are more visible than others. I am glad to be alive and still able to walk on this diseased leg, and I know Carl is glad he is alive and still managing...

Personally, if family issues with our son were different, I would have canceled the trip to Modesto...One less trip on the books..,Lately, we are going from zero to warp speed with all these's like he is trying to ramp up before his appointment at UCSF, in anticipation of a change of meds, etc...always something, huh?

Always appreciate any input. If anyone has any comments, feel free...we are here til Wednesday, when we leave for Oakland...Maui on Thursday, back in twelve days...yum....hugs Jane

By Threadhead On 2013.10.14 14:24
A month ago my husband had gone out in the yard to fix a low stone wall he had built years ago that had shifted. After a little bit I looked out to see him lying on the ground, head on rock. I ran out found him pretty much fine, not bleeding, and started to pick him up. I'm pretty anxious at this point, but he wanted to get up on his own despite his foot being wedged between a rock and a lamppost. So rather than assume control and free his foot, I stayed calm and asked him what he wanted me to do next. I turned his foot so he could pull it out himself and then stand up.
If the situation is not an emergency, this is what I've found to be successful. Then, days later when we're having a good day, we can talk about it and figure out what we should do the next time.
We talk about our fears fairly often, but never in the thick of it, because we can't be our best rational selves. He was a therapist, so he wants to know what I'm feeling and thinking so he can feel useful in helping me face whatever we're dealing with. He would know I'm afraid anyway, and trying to hide it would be dishonest. And after so long I don't have the energy to hide it. We're lucky in that we almost never get depressed at the same time, so one of us can pull the other back up. Talking about a very specific fear is a good way to demystify it and see it for the usually small issue it is. You go from: OMG it's PD!!! to: well, you just have to turn your foot...It's not always so simple, and then we say we're just "muddling through" this one. Some days when it's so overwhelming, I just stop and ask myself, "Are you safe? Can you breathe?" Of course I can.
Also he's the only person I have to talk to, so it helps me feel less isolated. It also helps that the marriage was rock solid before PD.

By LOHENGR1N On 2013.10.14 16:47
Threadbare, It is fortunate He was a Therapist as He spent His life or career talking, rationalizing and figuring out problems occurring. Many haven't had that training some of Us have learned on the run so to say with Parkinson's to figure out, stop take stock of the situation .......many new to the Disease haven't learned yet or even thought about doing that. Your insights and your Husbands are and will be very valuable to Us here on the forum. We all come from different walks of life and professions some willing to talk about problems others not so willing. In past posts I've said We need to understand the grieving process and how it relates to our disease. We also I believe, need to tend to emotional first aid. Just as "normal first aid has ABC's (airway, breathing and circulation) we need to attend to danger (remove it or lessen it) slow breathing to prevent hyperventilation and comfort (ABC's) I think this is a good topic to pursue to help Us all out. I can give only my view point, but Steve can give His and Bob His and Shakey His and other P.Der's theirs along with all the caregivers here I'm sure we can figure out how and when to help in crisis.

By olpilot On 2013.10.15 04:04
This started a discussion after I read it, I asked my wife what she thought and the answer surprised me. She said she was pretty much always scared. She works an hour away and is afraid of leaving, is worried about my working in my shop all day, about me being alone.

She has never been shy about saying what she thinks or feels, not always a good thing. Years agto we were headed home to Colorado from our boat in Door co Wisconsin, long story there too. We decided to take the long way and went through Rapid City and by Devils Tower in Wyoming. At the time the motor cycle rally In Sturgis was going on, we pulled into a gas station and sat behind a couple of bikers in their club jackets, big patches on the back and all. They filled up and walked in to pay, she started to yell at them to move!!! I stopped her and asked if she was trying to get us killed, us in a little red Nissan, filled with sailing gear and two cats. She just never seemed to be all that afraid of things. So I never gave it much thought.

But she has said things since my diagnosis, sometimes thinking back I guess she was scared that I was doing something I probably shouldn't have been, trying to prove to her or myself I could still do this or that. Sometimes I will get upset because I feel like I'm being treated like a child, sometimes I act like one, but she does it because she is afraid. She I think sees my limits better than I do and tells me so. I can take pretty good care of myself, but I do things that with a little thought, like a child, I wouldn't do. More and more that happens, more and more I give her reason to be worried.

She has taken me to the emergency room more than once against my objections, she was right to do it. I get upset, but there has to be an adult in the house sometimes. Not to say that I'm always that way, but sometimes I hate to admit I can't do something. I'm glad that she speaks out when she's scared, I hate the fact that she has to. I do take it personal, I do get mad and I do get over it.

Living with Parkinson's sucks,I think loving someone with Parkinson's is hell. It's hard being in this body,with this brain that are both going bad, but I am not the one watching it, unable to do anything but worry and be scared. We are both powerless, helpless, but it's a little like driving a car going out of control, if you're the driver you still have the illusion of being in control, if you're the passenger your just scared and watching a crash. The truth're both scared.

By jcoff012 On 2013.10.15 17:41
Steve, you are a wise, kind man. I am not sure how you and Al do it. I, again, am in awe of both of you. Your willingness to share makes our journeys as caregivers that much simpler.

'Living with Parkinson's sucks, I think loving someone with Parkinson's is hell.' Wow, that is prophetic...and I agree. I think most caregivers do, too.

It seems to me that we all only do our best. As caregivers, I think the first thing to go is hurt feelings...learning to cope with them, accepting that your PWP does not MEAN to hurt you, but will...all of these feelings need to be accepted because they cannot be changed.

I agree...I hate this disease, too. It is cruel to both body and mind...and to all of us who wish we could halt its progress.

Best wishes to all who are managing...Jane

By parkinit On 2013.10.18 16:55
Jane -
Unfortunately, as there are no two patients alike, there cannot be a "patent answer" for you on this. My spouse tends to have OCD and if I mention something HE worries and gets stressed, my DH. So I try to shelter him from additional stresses (when I am scared, etc.) as much as possible. When he went into a comatose state for several hours, I left the room to make calls, came back to comfort him, was scared ***less, but tried to be a calm, collected force in front of him so he would stay calm. We are in stage 4+ of PD and I believe the more it progresses, probably the more you will wish to shelter your spouse from your own fears.

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