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By oshroshr On 2011.01.17 22:11
when I read each of the posts and I lurk way more than I post, I see so muchof my life in the posts of others. It is comforting. Again, this situation can be insidiously scary...sometimes I actually get involved in something and "forget" for short periods of time the reality of the PD in my husband. Sometimes he seems OK for a moment in time and I "forget". Then reality strikes and it seems to be harder to deal with than usual.
I keep worrying that I suddenly will be in a situation that I cannot handle and my son has had to move 1000 miles away for his job now.
Just relieving some anxiety but I also have no help and it can be ok most of the time and very frightening some of the time.

By karolinakitty On 2011.01.18 08:35
i know how you feel oshroshr, i sometimes get that feeling too. I worry about what may happen later on down the road. We have some good neighbors/friends but, as we all have seen they tend to go away. I really like to be so positive and up beat that i really hope when the time comes I can remain that way.
Even right now, he just is coming down with a cold, he is susceptible to pneumonia, always has been, and i need, in my mind to jump on it and NOT let it get so bad. Yet in the back of my mind i worry about it how bad it could get......
You think i would have learned with the ice storm.........

By Emma On 2011.01.18 09:59
oshoshr and kk, I have been where both of you are. I don't know if this will be comforting to you or not but I think that we are a little farther along on the Parkinson's journey than you and an interesting thing has happened. I find that the worse my husband gets the less I worry about what might be coming or what might happen. I know what is coming long term and I expect it. I know that there will be more problems along the way on a day to day basis. I know that I do all I can to educate myself and prepare. I know that when the next thing comes up, whether it's a new symptom or a snow storm I will figure out a way, maybe not a perfect way, but a way to deal with it. I feel more at peace and confident in my role than I did in the earlier stages. Interestingly I am less stressed and more patient and compassionate now. Probably because even though he needs more from me than ever I also see his suffering more clearly. One of my big worries in the past was how we would afford to hire help for him and relief for me. Well, now we need both of those and I have somehow managed to squeeze the money out of our budget and a not great amount of savings. Lots of worry for nothing.

You will find your way and you will learn to let go of the worry and of the expectation that you can or should do everything yourself or do it perfectly. There are things you can't change and things you can't fix and you will make peace with that. For the rest of it you have us, your forum friends.

By karolinakitty On 2011.01.18 13:24
It is comforting Emma....that is why I like this website..all of us are in different places, different beliefs and different in the ways we handle our worries, stresses and burdens. We can always learn from how someone else is handling things, whether we are on the same page or a different page, we can still learn and be comforted by it....

By Lacy On 2011.01.18 13:30
Friends....I, too, think about what's ahead. At the moment he's doing so darned well that it's hard to imagine the rough road ahead. I've always been a cheerful upbeat person and I think I'm remaining so right now. Friends and family are always telling me they can't believe how happy I am all the time. I tell them, I have my moments, believe me. Meltdowns don't come often, but when they do, they are in private and I allow myself to cry like crazy and wallow in self-pity for a bit, then decide I'm the one who's healthy and it's time to shape up and deal with it. Again, my mantra is "It is what it is" and it works for me!!

I've learned to find humor in as much of this as I can. A laugh or giggle now and then is like medicine for me. I have a little dog who is my constant companion (and sometimes a pain in the behind, she can be as needy as my PWP) and she brings smiles to our faces when we least expect it. The pets have been a constant source of enjoyment for us. Hubby's cat climbs up on his lap every chance she gets and when he's not in his chair, she goes looking for him and we find her on his pillow or alongside him. She never leaves his side.

These are things that help me cope. I try not to dwell on what's down the road, it's just too scary and there's not much I can do about it seize the moment when it's a good one and do the best you can with the bad ones.

Perhaps my pollyanna attitude is a bit much for some, but it's what gets me through. Each of us has to find our coping mechanism and when we do, and it works for us.....then we're able to forge ahead and deal with the next bump in the road.

I can't tell you how important this forum is to me and how my heart goes out to each and every one of you/us. We were chosen for a reason to be the caregiver(s). It might not be what we'd have chosen for ourselves (nobody in their right mind would choose this for themselves, right?) but it's what we've been entrusted with and I feel honored that God has trusted me with this precious person to take care of!

By NW_Raven On 2011.01.18 14:46
Thanks, Emma, for your reassuring insight (“I find that the worse my husband gets the less I worry about what might be coming or what might happen…”). I found your post such a relief to read that I have copied it verbatim into my diary/notebook!

While my wife is in PD’s early stages, I have been struggling to find a frame of mind and approach that works and leads us to some peace and acceptance. My feeling is that if I can find that way now, I will be in a good position to handle whatever comes my way tomorrow. Your words confirmed that my goal is worthy.

For example, I have been educating myself a lot and figuring out what needs to be done now and what can wait. But my wife suggests that I am getting ahead of things -- that she is not that bad and is in fact stable. I say that I need to know the possibilities so that I can relax armed with knowledge. For this and other communication issues, we decided we should get the help of a counsellor who specializes in PD through the Parkinsons research centre at a local university. We start next week.

Your post has inspired me to keep working at this on the promise that I might find some confidence in my role and some peace as I walk this road. If nothing else, I’ll just keep putting one foot in front of the other...

By oshroshr On 2011.01.20 21:20
It is truly comforting that so many of you are where I am and dealing with things in similar and different ways. I have this urge to sell everything and make everything simple but then what. I am truly grateful to be able to come on this website and make friends. My husband is sleeping now in his chair and I will have to try to wake him to go to bed. Go figure? But I cant sleep unless he is safe and whilehe had a bad day, he had a good nite so I must look in the moment and be grateful for each day. I admit I am afraid of what is coming but only because I fear I will not be ready or did not do what I should have to get ready. But when the time could be next year or next week, how do you get ready? Thank you to everyone for responding and be so friendly.

By oshroshr On 2011.01.20 21:22
Emma, thank you for this.
"You will find your way and you will learn to let go of the worry and of the expectation that you can or should do everything yourself or do it perfectly. There are things you can't change and things you can't fix and you will make peace with that. For the rest of it you have us, your forum friends. "

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