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Topic Just want to be heard..not wanting advice Go to previous topic Go to next topic Go to higher level

By umajane On 2014.09.08 22:59
Called a friend as I needed to talk about my PWP. She just wanted to give advice and some how lecture me. I was hurt and annoyed. She does not have a clue.
Does anyone ever have this experience.
I quickly got off the phone.......

By Freespirit On 2014.09.09 08:32
Umajane, I feel like you are writing MY story! I have pretty much given up talking to anyone about the situation with my dear hubby except those who are living the PD experience. People look at my husband and see a nice-looking man (and he is!) who walks very slowly and that's pretty much it. They wonder, "what's the big deal?" They have no clue about what we go through with this disease, and I just don't go there anymore. I have this forum and two "cyber girlfriends" (whose husbands also have PD) that I am able to get support and understanding from.

By jaxrock On 2014.09.09 09:57
Nobody understands........except US..

By HangingOn On 2014.09.09 11:34
I am there with you. They don't understand and seems like they don't want to. Most have not seen us in a while or only see when the meds are working.
So hard sometimes.

By jcoff012 On 2014.09.09 12:25
Jane, sadly it seems even worse when it is a family member who treats you like this. My BIL almost tries to "one up" me when I tell him about his brother's symptoms, bad days, etc...I get..."When Mom did that...." or "We fix that problem." or, my FAVORITE..."Well, he sounds GREAT! I wouldn't even think he had PD!" Of course, this is all on the phone.

I would say you need to either get a new friend or educate her...I am to the point in life that I don't want friends in my life that cannot understand what I need...So, I tell them...!

By Dazedandconfuse On 2014.09.09 22:22
Wow.....I hear you. This forum has turned into my life line.

By carman96 On 2014.09.10 00:36

By moonswife On 2014.09.10 08:27
I am one with this group. Only at work, (because my coworkers often make the emergency run home to help him up off the floor) do my friends understand. The exception.....those that have traveled to our "other house" on Catalina Island. They like the resort atmosphere, but see his daily tribulations and because most are long time friends, empathize also. Nights are, of course, the worst. On a good note our new Movement Disorder Dr added back one pill at night. He thought the original meds had Mike overmedicated and took all away after 10 pm. Wanted body to "reboot" every night. I got to the point I wanted to boot Dr since I had 270lb rump roast to help with bodily functions. HE LISTENED. Last two nights much better. When the middle age "kids" of ours ask "how is Dad" I can say..."back on track again". If I only could make them understand the dirt on that track is getting mucky underfoot for their Dad.

By Marilyn-NJ On 2014.09.10 11:05
These posts just always validate my life. My friends, the long term ones, have finally gotten the message that if they just drop in on me so I'm not in solitary confinement on the weeks, it's a pure gift. The often leave my house with tears in their eyes, but after many years of just short calls for updates that they don't want to really know about, they've gotten better. My adult children see it all. My son handles it well and can discuss anything and everything with me but my daughter, has a hard discussing the realities. The 3 little Grandsons, the oldest one is six, are the best. They don't know Grandpa in any other way. My colleagues at work are the most wonderful. They don't know David intimately and can handle the details of my life and the situation better.

Yes - the daily chores of caring for a 200+ disabled husband with bodily function issues and increasing dementia has challenged me to the core.

By Witsend On 2014.09.13 13:40
This happens all the time, and as I've headed closer to a complete breakdown caring for my PD husband, it has rankled me more. When people start in with, "Have you tried this? You know, there's a program that...." These people have no clue. None. I finally started responding with: "I appreciate your advice. Unfortunately, I am so far along this road that there is nothing I haven't researched, learned about, experienced, or tried". Sometimes people get offended, but I have enough to worry about without trying to manage their emotions.

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