For those who care for someone with Parkinson's disease
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I was reading the recent copy of Neurology Now, from the editor, the power of acceptance. How to cope with death and dying. I'm not going into all the five stages it mentions or that one can become stuck in one stage or the other nor that not all people traverse all five. I'm going right to stage five. (since many people seem to put great stock in having "stages" to look at and compare to.). Stage five or the fifth phase; acceptance "Whatever happens, it's going to be okay." These phases affect both Patient and Caregiver/partner. (you can read the article online at; www.NeurologyNow.com) ...researchers have found the ability to reach acceptance is influenced by the quality, meaning and value the dying person places on their life. A person who finds value and meaning in life can make peace with the fact of death, even when it is fast approaching. That might need a reread or a second to sink in. I've counseled many a caregiver to let the Parkinson's patient do what they can as long as they aren't endangering themselves or others doing it. That gives value or meaning to the patient and their life. That helps the caregivers also, how many think they have to take over everything and then burnout because they HAVE to do everything. With all the good intentions in their heart they do everything for their charge too early and discourage the patients from doing or trying. I'll ask you reading this, ever have a loved one step in and say let me do that...I can do it quicker and better? Let Me tell you it doesn't go down very well. Self worth plummets, resentment builds in both partners. Stop treating me like a child, stop acting like a child you can't do anything right. Burnout, resentment! Another saying of mine is "there are two kinds of people in this world, the terminally ill and the terminally well. The terminally ill know it, the terminally well don't know they're terminal. And they don't like being reminded they are." Which can also bring about resentment in the patient/caregiver dynamic's. Seeing a loved one fail vividly points to ones own mortality. Parkinson's Disease robs Us of so much that We have to LIVE each day! That doesn't sound like it makes sense does it? Of course We have to live each day, but I mean LIVE create memories each day not let Parkinson's rob US of memories waiting to be made, never to come. Plant some flowers then pick them together, catch a butterfly or lightning bug. For a few minutes be a kid again each day, look at a caterpillar, gaze up at the stars! Live! People sometimes ask how I can always remain upbeat with a disease like Parkinson's? I can't, I have times when I'm far from upbeat. They say you're so brave? I guess you have to read above about acceptance. Bravery or courage doesn't mean you're not afraid or scared, We all are at times. It means using the ability to face those fears and trusting.....it'll be okay. I want to clarify acceptance .....it doesn't mean giving up it means to live life despite limitations. It means to fight the good fight and run a good race for as long as you can knowing it will be okay. It's not denial nor is it rolling over and giving up! It is going along recognizing some things are lost, beyond repair but not dwelling on these things! They're gone but it will be alright, trust. To do otherwise is to give premature victory to Parkinson's Disease! That I refuse to do, I'm kicking and fighting all the way. Take care, best of luck and hang in there! |
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Thank you Lohengrin for your insights and very inspiring outlook on coping day-to-day with Parkinsons. It is so easy to forget how to live life to its fullest in whichever capacity we have when things go a little or lot awry from illness or setbacks. I am going to keep your letter in mind for each day to keep my/our sights on the bigger picture from now on. It is far better to trust and know that as you say "everything will be alright" and to not let Parkinsons take the full focus from our living our lives. I found your sharing very helpful from a person who has Parkinsons to the caregiver who wants her man to have the best in life that he possibly can. Thank you so much! I will remember your kind words when I get too protective and too fearful - fearing the worst outcome just in case I can prevent something from happening. 
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Right on Al..... I get some comments sometimes like..why do you let him do that...his hobby that is... working with power tools and bending metals....Well...because he wants to...he doesn't accomplish much in a day, production wise, but, it keeps him living life and keeps the body moving....when the day comes he can't, then he won't.... LIVE... i liked that part the best... PD can mean a death sentence but "dying" before it's time is bad for both the caregiver and patient.....we made a bucket list and are almost through it....we accepted...we are still fearful...especially recently with things that popped up... but we also refuse to let it overcome us, put us in the house with all the blinds and windows closed..let it come between us..... I guess, i myself, should be one of the most fearful on this board...I read and have read all the posts for last almost 4 years since diagnosis...most of the caregivers here have been dealing with this 10, 15 or 20 years, yet I am in the same "stage" of this caregiving as most of you...by that i mean my guy has progressed so fast that he is up there with a lot of the same issues that those 10,15 or 20 years are dealing with. It is my acceptance and my guys acceptance of this disease that puts us in the other category though of being on top of the world.....the Buddhists first truth is "All life is suffering" basically saying all of life is suffering....Most of us know the story of Job...and it is through his suffering that brought him even closer to his God.....Accepting that suffering is the hardest part, and as Al said it's not that we are never afraid or have bad days, but, accepting that you will have them, dealing with them and moving on, that is the hard part.. but it is the part that lets us live...... |