For those who care for someone with Parkinson's disease
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My husband was diagnosed with early onset Pd 15 years ago, less than 5 yrs into our marriage. Not what I had in mind, to put it mildly. However, in sickness & in health, and as tough as it has been thru the years, I committed to staying. But, as you know, every day is different & some more challenging than others. Recovering from friend's visit during which she took over pampering my husband and being critical of me. All I could do is think to myself, lady, you have no idea..... |
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Well, I feel for you...it certainly is easy for someone who doesn't deal with PD daily to step in for a brief few moments in time...and then comment that YOU aren't doing all you can... Please just let it roll off your back. You don't need to waste your valuable time making any excuses or shouldering any insults. We are all at different stages of the PD journey, but we all know the reality is far different than the way the media describes the disease. As I get older and have faced many times of being the "family" caregiver (before he died, my FIL said to me, "Jane, I will know it is my time to go when I see the family has called you in to sit with me...") He winked, but in a way, he is right, for some reason, I have been the one on which the family relies...I am really glad that neither of my husband's parents are here to see his decline, as it would break their hearts. Hold your head up, do as you always do, and know that others here understand that many times those who do not face the daily life of PWP have NO idea the problems that must be overcome...and with humility and dignity for everyone involved. Jane |
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| Jane very well said. I have been dealing with those not knowing anything about PD for a very long time, you would think they would try to be more informed before trying to tell us how to handle things. As the years go by you learn to let some comments roll off your back. BCS46 Your hubby with PD knows you give him your all. |
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Thank YOu both!! it took us a few weeks, both individually and as a couple to recover from that visit. I am moving on, and recognize there is nothing to be gained by trying to discuss with her. She is not the only one who does not get how difficult having PWP can be. She thought she was being so caring by taking over and babying him. NOT, that is a good way to make him feel useless, which is what happened. He cooks and feels like he is making contribution by cooking for us. She took over the kitchen and he told me after he missed being able to be in his kitchen. She is a great cook, but after a few days it was no longer a treat. We don't eat as much as she was cooking and PWP missed being in kitchen. She got a taste of what I deal with daily when she went to grocery store with him and he froze & got upset. She did not know what to do. Welcome to my world! |