For those who care for someone with Parkinson's disease
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Topic Friends who don't "get it" Go to previous topic Go to next topic Go to higher level

By umajane On 2015.08.09 19:34
My very good friends of over 50 years can not grasp the situation we are as a caregiver and my husband as a PWP.
They try to be nice and invite us from time to time but are clueless as to the sadness of this disease. I am not a complainer and try with all my might to have a positive attitude.
She proceeds to tell me all their travel plans and how busy they are and how wonderful their life is and how lucky they are that they are healthy. I am happy for them but.....
Now that we are in this situation I hardly want to answer the phone when they call

By Lynnie2 On 2015.08.09 19:54
I am sorry your friend isn't very thoughtful. Maybe she just doesn't know how to talk to you and then just tells you what she's been doing, etc...I don't know.
You say you don't complain, but maybe you should just tell her what you have been going through and just maybe it will sink in. At least she'll know that your life isn't the same as it used to be and maybe she'll be more sympathetic towards you.
I know it's hard and I feel for you as my husband has PD and things are not the same for sure.

By SparkysGal On 2015.08.10 08:23
I have mixed feelings on this topic. On one hand I want our friends to relay the joys in their lives just like always and on the other hand I feel the pain of all the things we no longer do because of this disease. Friends don't always know what to say or how to act so I try to appreciate any contact and I try not to be a Debbie downer telling them all our woes (unless they specifically ask). I do always ask them to keep us in their prayers. All our close friends are aware of the PD.

By jcoff012 On 2015.08.10 15:29
It is doubly hard when members of your own family don't understand...*I* am the one who exaggerates how he is doing, etc.

I have said this before...Although we all should be grateful for the high profile that Michael J. Fox brings to PD, he often presents an unrealistic picture of our reality. Our own daughter said,"Mom, it isn't so bad...look at MJF, he's had it a LONG time."

My latest battle is watching my husband exercising so much...he finally admitted why...we are flying back East and part of the time he wants to put a roof on his sister's house! Imagine a PWP on a roof, let alone the physical strain...HOW can his side of the family, whose Mom had PD for 22 years, ignore the disease and allow him to do this? I am bewildered...

Like your friends do to you, I see this as self centered to the point of screaming...'WHAT is the matter with you?" But, we don't and won't...because, bottom line, if someone doesn't have to face the daily trials, it just simply easier to ignore the signs...

One last thought...perhaps your husband prefers that others remain the same around him...going on with life, talking about the future...because he knows his future....just a thought...

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