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Topic Back from our week in North Carolina Go to previous topic Go to next topic Go to higher level

By jcoff012 On 2013.09.25 10:41
Just thought I would comment on our trip. It was a wonderful, bonding time for our family on his side. After facing 22 years with his Mom's PD, it was interesting to listen to his siblings' take on it and on his current condition.

One sister was stunned at his weight loss and haggard, blank stares; one cried and told me she thought he looked like their Mom; our niece and nephews hugged and hugged me and said, "Aunt Jane, Uncle Ken (only I call him Carl) looks bad for him, but better than Grandma did." (Remember, she grew up with PD); our nephew said, "I am sorry for you, Aunt Jane. Uncle Ken doesn't look like he used to and you must be pretty tired always watching how he's doing." The brother I was concerned about was exactly as I denial..."He doesn't look that bad. He had a good time. He ate well and took walks with us on the beach." I wanted to HIT him!

Traveling was fine going; allowing the extra time between flights was a good idea...GOING...Coming back was awful...It was long and tiring and he had to pop Pepto Bismol and run for the bathroom between flights. Couple that with the four hour drive back from the beach the day before.

One thing that hurt my feelings was a statement he made that made everyone uncomfortable...We were sitting around talking and he came into the room. Michelle, our 22 year old niece who got married at the beach last year, but we couldn't go, had just said, "I wish you both could have been here, but we understand, of course." Out of nowhere, "My biggest regret in life was moving away from everyone." ??? What the? Well, everyone was stunned and silent. Someone broke the silence and we moved on, but it hurt...

Now, how do your react to a hurtful comment like that? Well, I didn't...I know the PD road will be full of these kinds of comments and the meds, now that they are amped up, cause him to say hurtful things and often he means them to some degree, but not always as blatantly crisp as such a comment.

Life is too short to sweat over the minor things, even if hurtful. *I* know, he will always be "big brother" to his family and he does regret that we don't live closer, so why make an issue of it? I didn't. There will be more of these unsolicited comments and I choose to not fight over them, just acknowledge that he means them to some extent and move on...Hurt feelings seem to go hand and hand with PD...

At times, we all need to step back and consider that our PWP is changing, and sometimes not for the better. But, deep inside my PWP loves all of us, is proud of us, loves our home and grandson, but truly would like to have ALL family together, not separated by the entire US! His regret is that he has so little quality time left and he wishes he were not far from all of the rest of the family...I understand that and accept it...I, too, wish we lived closer, as they are wonderful people and I miss them, too...Our life is here, but our love is with them, too...Just wish the doctors could find some meds that wouldn't allow the hurtful comments, but, is what it is...
Hugs and love, Jane Missed you all, but limited access...

By Freespirit On 2013.09.25 13:24
Welcome back, Jane.

Glad you had a nice time with family. Interesting how they noticed changes in your husband. Living with with our PWP day-to-day I think we miss these changes sometimes. What is that saying, "you can't see the forest for the trees" or something like that.

I know one aspect for me is my husband's difficulty with eating. I am so used to it, but I have noticed that others are taken back by it.

Ah yes, the hurtful comments. . . I'm fortunate that my husband does not spout off very many. However, when he does say something hurtful, I just try to keep in mind that he cannot help it.

By parkinit On 2013.09.28 21:57
Sorry for your hurt feelings. These comments do come and I have tried to harden myself against them. The meds? The disease? I don't know but it is like a normal mental filter is often missing.

By carman96 On 2013.09.28 23:19
Jane, glad it was a good visit with family. Sounds exhausting though.
Try not too get too upset by words said. I know my husband says things he doesn't really mean. Going to speech therapy has made me realize that it's hard for him to get his words out right.
When are you going to Maui? Wish I was going with you!

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