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Topic Talking about PD... all the time Go to previous topic Go to next topic Go to higher level

By formydad2014 On 2014.08.25 15:22
I really, really don't want this to come off the wrong way, especially to the PWPs that are on the forum. However, we have been dancing around an issue with my dad for months now - he doesn't talk about anything but his PD. We will try and re-direct a conversation and he will comment here and there, but when there is a lull in the conversation, he goes right back to talking about his symptoms, how he's feeling, etc.
It has gotten to the point where my husband, who is wonderful regarding caregiving for my dad and is very close to him, resists going to hang out at my parents' house, because all my dad does is vent to him and talk about his PD symptoms when they are talking.
Is this a symptom of the disease that's common? Or perhaps it's just common for someone who has a chronic disease to focus on it?
In any event, how can we make him aware that people are beginning to pull away because they don't want to hear about his PD all the time? It also seems that focusing on other things would help his mental outlook, thereby helping his physical state a bit. Or am I just ignorant to the fact that with PD, a "positive" (not Pollyanna everything's going to turn out great positive, but just being proactive about stress, eating right, etc.) outlook doesn't help? Or does it?

By LOHENGR1N On 2014.08.25 15:50
Formydad, sounds like it could be grieving going on and how does one get on with the grieving process? One step is to recognize the loss, talk about it confront it, get it out in the open. Some take longer on steps than others, also this is His reality, His life now and people at times need validation that others see that. To deflect statements and change the subject in effect dismisses their problems or shows non concern or it isn't importiant. And as I said this is now his world, his life. This disease is a constant readjustment and long grieving. Maybe he is facing the fact of his life as it is and that is something family doesn't want to face right now? A frank discussion might be in order to address and validate his observations and feelings? An acknowledgment of his disease and it's effects on his life and quality of such. He is trapped in this disease and sounds like he's reaching out, trying to explain what he feels and how it is, it must be extremely frustrating to him also if when he tries to bring it up it gets ignored or brushed aside as trivial. You all have the oppertunity now to listen and later when this disease robs him of his voice to have a soild foundation of how it's effecting him instead of it being a guessing game. Whatever you do just please keep in mind thing's being brought up are important to him, that's why he's repeating them. Validation of them is important to him and his ability to cope. I hope this helps a little, take care, best of luck and hang in there

By formydad2014 On 2014.08.25 16:11
Thanks for your insight Lohengrin.
We DO talk about it with him. All the time. We will gently try and get him to talk about something else after talking to him about his
symptoms of the last few days, medication, etc. for 20 or 30 minutes. It's not like he's bringing it up and we go "uh, huh... so, how 'bout them Giants?" I do research with him, help him with his meds, and talk endlessly about his PD. We realize that this is his reality now, but I guess my question is, does he even WANT to talk about anything else? Or is he just not realizing that PD is all he talk about? Does PD, as a part of the disease, make you lose interest in outside pursuits - even those that someone with his physical limitations can handle? He goes to a psychologist, and tells her he's dealing with it fine, etc., but won't go to a support group, an exercise class, etc.
We know that this is going to get worse - it's not an if, it's a when. I know that. I go to nearly all his drs. appointments with he and my mom, so I hear him downplaying these things that are bothering him to the doctors. We have to step in and tell him, "no, that's not how it is - here's how it REALLY is..."
I will take your suggestion of a frank discussion and see how that goes.

By jcoff012 On 2014.08.25 19:07
I agree with Al...he is grieving...mostly the loss of himself to PD. I know it is hard on you, but please let him talk while he can. At some point, he will understand. I am afraid if you make him stop talking, he will shut down and pull inward..and that would be sad.

I may be wrong about this, but I think someone with a chronic disease, no matter what disease, goes through a time like this...then, comes acceptance...and life changes...When I had a cancer dx, it was all I could think about...would I live to see my two year old granddaughter grow up? Would I have to give up traveling to Hawaii? And on..and on...that lasted awhile, then, one day, our daughter and SIL drove up to see us for Valentine's Day with a card that had a sonogram of our grandson in it...that read, "Meet your next grandchild..." So, I started to fight harder but cancer was not every thought, every sentence...Now, I realize that cancer CAN be conquered and PD cannot, but the feelings for the time are the same...the grieving...it becomes overwhelming to the person who is facing mortality...I had a great outcome, eight years later, but my husband will not...

However, he is a fighter...last night he walked for 75 minutes! He was exhausted, but he slept well...this was all his idea...Maybe we don't have as many issues yet because he watched his mom fight PD for 22 years, so he is determined to fight until there is a cure. I wish him well.

I also agree that you always need to let your PWP know how their moods affect you. BUT, I agree with Al, try not to lessen HOW PD makes HIM feel. Everyone handles stress or a disease in his/her own way. Give him time. You love him. He loves you. Stand by him and be kind. He will have moments of happiness and you will want to be there...Hugs and come back to tell us how your talk goes...Jane

By JulieB On 2014.08.25 20:10
My heart goes out to you, Formydad. Parkinson's Disease has such a huge effect on everyone, not just the PWP. I think Jane has given such kind advice here. Hugs to you and yours... xoxo


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