For those who care for someone with Parkinson's disease
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By hubb On 2010.10.14 23:47
In our publication from one of the PD groups we belong to, there was an article about grieving losses with PD. It seems to me that in thinking about the many years my PD spouse and I have been dealing with this disease, there were many facts that apply to us all - whether newly diagnosed or been at it a long time like us. When you receive the PD diagnosis, it's usually both a relief and an overwhelming experience. It's comforting to have an explanation for the symptoms that have crept up on you, however, when you find that the prospect of being diagnosed with a condition that is expected to get worse over time and has no present cure can feel demoralizing. People have a fairly predictable way of dealing with the diagnosis. Kubler-Ross have divided grieving into 5 common stages...denial, anger, bargaining, depression and acceptance. At time of diagnosis, you doubt that it's really PD and try to find alternative treatments, but then you go into denial where family members and friends are distressed and often times you get clippings from every newspaper with all sorts of promises of cures for PD , then you grieve and become angry at the doctors for giving us this information . Then comes bargaining where you may believe that if you act a certain way, the reality of the diagnosis will disappear or there will be no progression of the symptoms. Then depression sets in which resolves with acceptance. And as we learn to settle with the additional difficulties that come with the progression of PD, the patient themselves struggle with losing credibility in relationships and feel as if they are treated like children. Acceptance involves taking the good with the bad and trying to survive each day. I'm thankful we traveled as much and as often as we did because all of a sudden, now that has become impossible. Acceptance also includes appreciation of the fact that our lives are filled with struggles and there are some aspects of our lives that remain beyond our control. I hope this doesn't sound like a downer, but after reading the article and knowing that we have gone thru all 5 of these stages - back and forth sometimes - reading and learning still are the best tools for a caregiver because this insidious disease just doesn't give up.

By parkinit On 2010.10.15 11:41
Hubb -

Thanks for your thoughts. You are the second person who has recommended this book by Kubler-Ross in the past few days, so I'm going to have to check it out.

My spouse had PD, and my dad is dying from cancer. He has lost his ear and has several outbreaks on his face from the cancer. There is no ignoring the facts when it is "in your face" and on his face daily. I told my mom yesterday that we need to have some heart-to-heart talks with dad before it is too late as a family. I hope we all make the time (I have siblings) to tell him how much he has meant to us, how much we love him, and that it is okay for him to "move on" to better things ahead.

By LOHENGR1N On 2010.10.15 16:17
hubb, Great post thank you. I read many years ago in a young onset handbook about the grieving process and the relation to diagnosis of P.D. You touched briefly upon an important fact. In the grieving process with a disease like Parkinson's we will tend to revisit earlier stages and seemingly go through the process again and again as we lose more to the progression of this Disease, this is normal to grieve the loss. I just wanted to point this out that it is normal for one to get mad again, to deny a worsening.

To awaken in the morning and find one can't bend over to put on a shoe. To fumble with the medicine trying to get it in you with the hope it will work and you'll be able to get up and to the kitchen, your hands will work guiding the slices of bread into the slots of the toaster. Hoping the coffee or tea cup will make it to your lips without slopping the contents all over. At times like these it's ok to slip back into an earlier stage. In the acceptance stage I think it's healthy to include acceptance that I'm going to slip back into other stages and then work my way through them again. Heck, it's no wonder so many suffer from depression along with this disease. I'm rambling now so again great post. Take care best of luck and hang in there

parkinit, please know our hearts and prayers are with you and yours.

By hubb On 2010.10.15 20:53
Al, my hat's really off to you...I don't know how you do it all by yourself. It takes all my time, effort and energy to keep my PD spouse going and I know if I wasn't there to help him, he would already be in a home of some kind or would have just given up. I know it's so difficult to ask for help - it's much easier to be a giver than a taker. And you are so right about the meds - just hoping it will do the trick one more time and some times it does and some times it doesn't and after all these years, we still haven't figured out why or what.

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