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By shakydog On 2010.04.26 16:14
We all share the same traits, the men that you wonderful caregivers are dealing with.

We all had jobs that were demanding and fulfilling. We designed and built great things. We were able to repair anything that we saw - sometimes before it was completely broken. A million things that we did everyday without thinking and without any real effort. Thousands of hours spent on making our part of the world a better place. Hundreds of projects completed. Dozens of sleepless nights planning our next day with the belief that we could do everything. And we did everything by ourselves, from concept to design to completion.

Until now

Now we are done before we start. We always had work and devoted our lives to working. We worked 12 hour days then came home to complete projects that we enjoyed. Now we are happy to be upright for 12 hours. The pride that we had in our accomplishments has turned into bitterness at our ineptitude. There is no need in conceiving something that we can't design. No need in designing something that we can't build. No satisfaction in the completion of something of our own making. The nagging thought in the back of our minds is that we used to fire guys who couldn't work any better than we do now.

We try to find work around the house, try to find some way to be productive. But then the med's wear off, or kick in too strongly and we have to stop working. It's too much effort to put everything away right now and we just need a break before getting back to work. Then you get home before work is finished and raise Cain about the mess and finishing isn't that important any more.

It isn't that we are newly obsessed with puttering around the house, we are compulsive about our desire to work. For me, OCD started when I was 14 and figured out how cool it was to get a pay check. It's a tough habit to break.

By LOHENGR1N On 2010.04.26 20:42
Well shaky you've got me typing now, something that has been running around in My head for awhile now. Reading postings like OCD, stubbornness, posts about the batteries, all these "little idiosyncrasies" We seem to develop. Is it the disease? The Medicine? Combination of both? When We Patients try to help with a project and it takes too long or We fail to clean it up (hide it). We may get reminded (sometimes continuing reminding is referred to as nagged or nagging). We just have to stop doing these things we get told. Nerves are frazzled in both We Parkies and Our Caregivers. Sometimes as posts suggest we seem childlike (I don't know if that's quite right perhaps more like unruly, surly teenagers?)

Now I'm going to tread into territory that is seldom discussed very deep rooted in fact maybe baseline and just maybe the cause of the paradox our behavior presents. I'm not talking about Dementia as that's a whole other ballgame in of itself, as is results of some medications and effects of those medications.

I'm talking about actions like going to the bathroom at night. Why some will persist in trying to go even when they fall and end up needing help night after night? Why others will not try to go but try to hold it all night and night after night wet the bed? Why Do we do things that seem to get under the skin of our caregivers and just create a mess of everything? Then repeat that action? We're just trying to help We say. You're not helping I can do it myself or leave it, it's easier for me to do it you say. Here are our paradoxes every night we fall going to the bathroom maybe we're trying to help. Trying to save you from having to get up and change the sheets again? Why do we wet the bed? Maybe we're trying to not get you up to aid us in getting to the toilet? Trying to let you get a bit more sleep? We end up damning ourselves if we do or if we don't.

I've been thinking about these questions and puzzling them about as I said. I think the deep down underlying answer is in the realm of taboo. The realm where lay hidden our greatest fears, hoping never to see the light of day, hoping never to be faced. You see, We do these things because We have Parkinson's Disease, we are for the rest of our lives as current medical technology stands going to decline. I believe here We meet the greatest unspeakable fear.......Abandonment...... the fear of being left ALONE. Of Partners, spouses, loved ones walking out leaving Us alone. The fear we didn't pitch in enough, we didn't do everything we could to not become a burden too heavy for you to bare. I don't know the statistics, I don't even know if there are any statistics on this but the fear is there make no mistake about it. We can deny, we can dispute or pasha it. What I've said isn't easy to read or think about. It's just what it is. Something to ponder when it's been a rough baffling day that seemingly makes no sense. Statistics probably point to Spouses staying much more than leaving. Just on this board the percentage of staying till the end is astronomical. It lifts the spirit to see and know just how wonderful humankind is and how strong love can be to witness the heroism displayed daily on this forum and in these posts we read. For that I consider myself lucky to be some small part of the miracle that happens here. I'm privileged to meet and to correspond with You all here, you light up the darkness and your warm, understanding and love draws in those looking for help. Saying We understand and we know. Take care, best of luck and hang in there!

By shirley On 2010.04.26 21:20
Lohengrin, You are a very wise and insightful man. I am sure that everything you posted is least in my husband's case. I think he is afraid I will reach a point where I won't be able to take the parkinson's any longer. Thank you for putting those particular fears into writing. It validates what I've been thinking all along and helps me to better understand his feelings.

By karolinakitty On 2010.04.27 08:15
Thank you Shaky and Al ....

Wisdoms from the mouths of those who know.

By parkinit On 2010.04.27 11:30
Thanks for sharing all. It has opened doors of better understanding for me. So glad you are opening your hearts and minds.

By lurkingforacure On 2010.04.27 18:15
One of the very first things my husband did upon dx was to make out a list, of all the things "we" needed to do. It was very sad, as it revealed to me what he was thinking. On the list were things like transfer all assets to my name alone, and then we would get divorced, he would give me everything for the kids, and I was to go find a new husband who could be, in his words, "a real dad" (I know, I still cry when I think about that one). If our situation weren't so sad (youngest baby only six months old at dx, etc.), it would almost be funny...absurd, really.

I was actually very surprised he would make such a list, because in the many hours that we discussed why I could not possibly honor his requests on the list, he was unable to tell me where he would live, or how, or who would help him take his meds on time down the road, make sure he got to his doctor, etc., etc., all down the road, if I were to honor his list. All he was thinking of was me and the kids and OUR lives, with no regard to his own, and when questioned, he had no idea how he would cope. Or whether, which was a fear I had, to be honest....

But in addition to incredibly admirable amount of concern for his family, out came his own fear about being a burden, and believing that in time, I would come to resent him, hate him even, and then either leave him alone to cope, or worse, stay, hating him the whole time, with both of us miserable. He had read a lot in a very short period of time and all the stats were bad.

It made me sad, realizing that he knew me so little. I think deep down, he has the fear of abandonment, but also has a fairly low self-esteem which I fault his parents for (the last of three kids, an "accident" as many of us were back then, and thus got next to no attention.... no need to go into all of that now and we all have baggage...) but the point is that because of the self-esteem issues, I feel he doesn't believe, deep down, that he deserves the kind of love I have for him, the kind of love that never gives up, never resents, never abandons. How sad is that?

Perhaps by now, he sees things differently. He tells me all the time how lucky he is, that most wives would have taken off long ago. I just hope he now sees how loved he is, PD and all, and that he IS worth all of our love.

It was good to read shakydog and al's posts-it really helps to be reminded of this, in the day to day coping with everything. Both of you have a way with words, a real gift.

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