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Topic a long time coming Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2011.09.12 00:35
This has been a long time coming, I'm trying to word it so as not to step upon tender toes. Please bare with me, I said awhile ago I'd try to step back and not respond to vents so quickly as it was causing problems with some. I believe for the most part I've stuck with that. I'll continue to try to keep doing that. In the past at times I didn't agree with something said or done and let it be known. Sometimes I was set upon for that, even told politely and not, that this was a caregivers forum patients shouldn't be on it or if on it should hold their posts. Most of these comments came for posters who were damn glad to have me post answers to problems with the disease or med's or to explain what might be going on. As long as I didn't disagree with them if I did, well I was told the above.

So at the risk of a few more battle scars I will go on. Vents are good, we all need to get things out and need guidance or help with problems. When vents are not good is if we use them to justify mistreating loved ones. I'm not pointing any fingers or bringing up anything specific, that's not intention nor is my purpose to cause any guilt. We're all still learning here. Parkinson's Disease is frustrating, very frustrating for caregiver/partner and patient alike. We all have to keep this in mind. If frustrating is a poor choice them overwhelming may be better. We have problems eating you have problems getting us to eat. What's the answer? Your guess is as good as mine. However this forum provides us with a way to compare notes on which might work or not. Menus might need to be trimmed or expanded. One thing about Parkinson's is it keeps you jumping (pun intended). All of a sudden We stop eating something why? Stubbornness? Pickiness? we're all guessing, maybe you spent time and effort thinking we'd enjoy the food only to find Us seemingly disinterested or not feeling like eating it then later catching us into some sweets or candy (ice cream) and thinking we didn't eat because we wanted to eat these instead? Your feelings are hurt you question our motives. When these things happen it saddens me. I'm reminded of one of my Nieces Her eldest child (son) has autism before diagnosed he wouldn't eat green beans She tried to make him sit there till they were gone. He'd get a mouthful and gag. She thought he just didn't want to eat them and was trying to make himself ill so he didn't have to have them. I told her and tried to reason with her to just use another veggie. Upon diagnosis the doctor told her some veggies children with autism just couldn't seem to eat. The texture or taste or even the hue or color of them made them too much for them to eat. With Parkinson's Disease our brains are changing and for the most part we're not deviously plotting to upset anyone. Just something to consider if or when some of these problems occur.

A lot of problems or quirks that come up as we're losing the ability to do these things throughout life we learn to do stuff, adapt now we're losing the communication from brain to point of usage so we stumble or fumble trying to do things, nothing planned to make it harder upon you just trying to help and feeling inadequate, stupid or useless. If dementia sets in we're basically forgetting the how to as well as having faulty wiring.

Finally one of the benefits of a forum like this is hindsight! The being able to gain knowledge from people who have gone through problems that one is now going through! They say hindsight is 20/20 in a way it is. It gives the chance to cut down on mistakes. It gives one wisdom and can circumvent many I wishes. Those I wish I knew or I wish I held my tongue or hadn't said something. This paragraph will probably be the one that gets me into the most trouble but, as I titled this post "a long time coming" Here's where I jump in it with both feet.

There is life after Parkinson's Disease for those We leave behind. I give all the credit in the world for the brave caregivers/partners and family who post after a passing! I salute their bravery in doing so! My heart cries for everyone of them and with great sadness and heartfelt compassion I read of their wishing for one last hug, or one more last day with their loved one's the one more hour or minute to say something they forget or wished They had said. I'm saddened by guilt some express, even though Their loved ones understood and knew the where's and whys. At times I have to get up and walk away from the keyboard when posting. I see and know Your pain, We've shared triumphs and sorrows, We're family at times through this disease closer then blood families. Our heroic posters have shared dark times with Us. times so dark they were lost and didn't know if they'd ever find a way back. I sense I'm at a point of rambling on here so, all We can do is the best we can. Remember to use the hindsight posted here, it can help cut down on the regrets one beats themselves up with afterward. If We're frustrated take a breath if that doesn't work take another! If overwhelmed reach out to other here They'll know what you mean! Be easy on each other and Yourself. Most importantly don't make mountains out of molehills, don't sweat the small stuff because in hindsight looking back afterward it's really all small stuff! Take care, best of luck and hang in there!

By karolinakitty On 2011.09.12 08:13
Well said my friend....

I think sometimes we(caregivers) forget that it is not just a shaking disease too. In the heat of battle or stress, things slip through our minds. Every little thing in a PDers life is usually in someway, shape or form related to the disease. I'm am in no way giving anybody room to blame everything on the disease, or step back with the "i cant's". But if you step back from that "heated" moment and do some thinking or will find I am not far off...Overwhelming, to me, is probably the best word. But there too I step back and let the swell come,knock me a bit, but keep my feet planted firm in the knowledge i have found.

By Michele On 2011.09.12 13:35
I hear you Lo, and agree with a lot of what you are saying. As a caregiver for a stubborn spouse with PD, I struggle with my control issues. It's a tough line to walk. In my situation as a caregiver, my spouse cannot do anything without help - he is wheelchair bound and has mild dementia. So, being responsible for his care and everything else, it's hard to let go and let him do what he can. One of the things that I have let go is food. It's one of the only things that he can control - what he eats and when. It's also one of the only things he can enjoy. But as a self-identified control freak, it is so hard to know when to back off when I am literally responsible for the life of another. If you are not a control freak before becoming a caregiver, you can be after.
You always give us something to think about and if you offend, you know you will hear about it. Keep on posting friend.

By gap2010 On 2011.09.13 23:05
I truly appreciate your insight, advice, wisdom and perspective so that I can relate to what my husband is going through. Keep posting as I look forward to your words of wisdom.

By Mary On 2011.09.29 16:18
Al, what comes to mind for me in reading this post is that I wish I could care for Dad from the beginning all over again knowing what I know now. I could be a much better caregiver. I never took on that role before and have certainly learned from it. Thanks for your post. I hope you find some benefit in this forum as well. Hugs and blessings, Mary

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