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Topic PWP, how do you do it? A good cry was needed... Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.04.14 17:50
I watched my husband (PWP) try to replace the sliding screen door this morning. He joked (first time I tried NOT to cry) that it was simpler to take it to the hardware store than to do it himself--which would have been unheard of three/four years ago), and so he did. Second time I tried not to cry: when he got home with the repaired screen door, he tried and tried to get it to slide smoothly on the track...his frustration at not being able to "fix" it was discouraging to him. He simply couldn't process HOW to do it. Third time I was close to crying: after a half hour, he said, "Well, that will have to do...and gave up and came into the house, visibly upset...He went out to the garage, and I walked over to see the problem...the track at the bottom was dirty, so after I cleaned it out and applied stainless cleaner, it slid well and smoothly...Don't get me wrong, this wasn't a brainstorm on my part; I have seen him do this 20 times over the years...

After he came in, I asked if he felt like getting the grocery list of seven items. He said, "Sure" and left...THEN I cried.

HOW do you do it, PWP? How do you keep going, learning to adjust?

I have such admiration and love for him, and for anyone who bravely faces the changes this awful disease brings, but I often wonder how you manage. I don't think I could do it with the grace you do. I realize some are complainers, but even with that, HOW do you manage ANY smile, ANY lightheartedness?

On the flip side, those of you who have been caregivers for years, facing these same downfalls, I admire all of you and wonder how do YOU do it?

Maybe I am uncharacteristicly melancholy today, I don't know. But, I want our lives to be as full as possible for as long as possible, and for the life of me, I cannot imagine what a PWP faces. Maybe it isn't for me to understand, but I truly want to give this my best...if only I knew how. Hugs and love, Jane

By lurkingforacure On 2013.04.14 21:54
Lots of tears....and a good pair (or three) of dark sunglasses:)

Sometimes you just have to cry. It's not healthy to hold it all in, crying has physically helpful aspects and if you feel teary, let it out.

I personally cry several times a day, always privately. Often I wake up and as I lay there, I will cry and I end up getting out of bed already having had my first cry of the day. I used to worrry about it, how much I cry, now I realize that I have so much on my plate that it would be abnormal NOT to cry! Plus, I have always been extremely sensitive and prone to tears, so I have learned to go with my body and if the emotions are too much, I just go with them.

What else can you do? If you fight the tears, it's even worse and harder, not to mention inhuman. We are meant to cry when we are sad or overwhelmed. Not allowing yourself that outlet only makes our jobs as caregivers harder.

By LOHENGR1N On 2013.04.15 00:16
Jane for Me it was a process, I had to work on not letting everything get me down and discouraged. It still is a process. I didn't at the start accept things with grace! I don't now accept everything gracefully. I was and do get frustrated. I fight daily with PD. I have learned to walk away from something that isn't going right because if I stick with it then I become frustrated and that compounds problems. (a hard lesson for a stubborn Polock to learn I'll tell you!) I try to look for the positive, like Your husband the screen got fixed, he realized it was at that time beyond his ability (maybe in a couple of hours it wouldn't have been but it was so He went and got help doing it. That's positive! He might have come back later and looked at the door and said to himself why you dummy you have to clean the track or maybe not, that isn't a biggie. If I had to guess the reason he didn't was not because he totally didn't remember it had to be done but the fact he couldn't get the screen replaced on his own was still lingering in his mind and then he couldn't get the door hung right to slide.

Crying is fine, therapeutic and needed at times. We all cry of frustration and loss. We shed tears about future plans now gone or at the very least uncertain because of this disease.

How do we keep going and learn to adjust? We have to really what's the alternative? If we don't keep plugging along adapting to doing things different because We're differently able'd now we're frustrated, slow, shaky, unsteady and at times feel like we're under constant surveillance (lovingly of course:) ). And it's normal for loved ones to grieve along with us over losses. We cry it out get back up and get on with it, it's really all one can do constant adjustments, plan changing and seeking out a positive when all seems negative. It's hard work but if we don't keep at it PD will beat the crap out of Us, roll over us and never look back leaving us broken and lying there way before our time.

We're all in the same game; Just different levels.
Dealing with the same Hell; Just different devils


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