For those who care for someone with Parkinson's disease
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Topic Good times for everyone else Go to previous topic Go to next topic Go to higher level

By exhausted wife On 2016.09.17 15:35

By Trusting On 2016.09.17 18:14
No, you are not alone. I won't say he is the life of the party but he does put his best foot forward when he is with old friends. He wants to be sure he looks good and I think he just loves the attention he gets.
My husband doesn't demand anything when he is home, just sleeps in his chair most of the time but seems when I want him to try to do something with just me, he doesn't feel like it. It does get tiring but then I know he gets tired of just me around all of the time. He can't drive to get out on his own, so even when we go someplace he likes to be around others. I'm not sure I wouldn't be the same way if I were in his shoes.
I also think our PD mates don't like others to know how bad things really are for them. I think its a man pride thing. Don't think that others don't know what you do for him, they do. It gets awkward for others b/c they don't know how to talk to us about it. Hang in there. We are all here for you.

By VioletV On 2016.09.17 20:24
Oh exhausted, you are far from alone in this. I think that the PD person puts on their best face out in public (including in doctors' offices) and lets their hair down at home. What is so hurtful about that is that we, the long-suffering caregivers, see them at their worst and they don't often seem to rally to make things easier for us. It is really hard to get family/friends to "get" how tough things are.

One solution I discovered that has made a difference for me. I took a 4 day vacation to visit my daughter and invited my PWP husband's daughter (my stepdaughter), who was sure I was not treating her father well and was keeping her from having contact with him, to come for a visit while I was away.

She jumped at the chance. I didn't exactly engineer this, but at one point the hired caregiving schedule had a gap in it and I didn't hustle to fill it. Thus, stepdaughter had about 6 daytime hours to manage her father on her own. She was in tears by the time it was over, and subsequently said to me "I don't know why you don't just get in your car and drive away." Now she is singing a somewhat different tune. Can you invite these judgmental others to spend time alone with your PWP while you get out of Dodge for a day or two. Let them have some what of a full experience?

By lurkingforacure On 2016.09.17 23:17
Yes, and don't think kids don't notice when daddy doesn't have time or energy to do anything with them but can get dressed and out the door in record time to go have lunch with a friend. Very sad for our kids.

By exhausted wife On 2016.09.18 08:35
From the bottom of my heart, thank you. I couldn't stop crying before I posted. I am in better control now. Bless you all.

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