My dad has PD, I can't handle his decline

Posted: Mon Nov 26, 2007 10:25 pm Post subject: My dad has PD, I can't handle his decline.

I'm too prideful to seek formal counseling, I think. Maybe. I don't know. Amongst my friends, the people my age, I have older parents. I am only 21, but my parents are both in their 60s. That's not THAT old, but it means hings like Parkinsons affect me sooner. That, coupled with the fact that he was early onset, this is all happening way before it could for anyone else whom I would normally go to for support. As far back as I can remember, "Parkinsons Disease" was just something that my dad had. It happened so slowly, I didn't see it's effects. It's been around my whole life. I... I don't know how I am supposed to deal with this. Since I was 17, I've been a member of some teen support forums, and they can't help me. They are too "young" so to speak. All I get is that, "I don't know how that must feel, but you have my sympathies." I'm falling apart. I can't watch him fall. I can't watch at all.
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ahimsajackJoined: 25 Apr 2007Posts: 472Location: New York state
Posted: Tue Nov 27, 2007 11:21 am Post subject:

Khadgar, I empathize with you. PD is certainly a disease that robs us of our dignity if we let it. You will probably feel better if you focus on how your parents feel and how they are handling this. Yes, they and you are young, but your situation is not unusual. Try to put your heart and mind on them, and provide whatever love and support you are capable of. I find that I feel the worst when I worry about me, and I feel the best when I put my mind on others. It works!! Jack_________________We are what we think, with our thoughts we make our world.
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John ShJoined: 05 Mar 2007Posts: 101Location: Arroyo Grande, California
Posted: Tue Nov 27, 2007 6:40 pm Post subject: Khadgar

My opinion. Talk to your dad if you can, and also, start seeing someone, let go of the pride thing, you might as well join the rest of the human race, I am 67 and I see a therapist that is probably 45, it's comforting. It's a woman by the way. My heart goes out to you, but I know you need more then that. John
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zmunnJoined: 02 Mar 2007Posts: 60
Posted: Tue Nov 27, 2007 9:21 pm Post subject:

Khadgar, Well, I'm 54 and my PWP mom is 77 and it's not at all easy for me either, so it's not just your age. It just IS hard to see a loved one decline. One of my brothers copes by staying away, the other by calling regularly to tell my mom silly but entertaining stories about his cat. I have coped by moving my mom to a nursing home in my own town so I can see her daily and oversee her care. You'll find a way, but you'll be more helpful to your dad if you can get yourself in better shape. For most of us that means counseling from someone outside your family and friendship group. I hope you will consider that. There's no real benefit to your dad or yourself in your falling apart. My best to you, Zae
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MamaGullJoined: 16 Mar 2007Posts: 21Location: Washington state
Posted: Wed Nov 28, 2007 3:17 am Post subject: Re: My dad has PD, I can't handle his decline.

Have you looked around for Parkinson's support groups - not necessarily a group for folks your age, but for family members of PWP's. Depending on where you live, there are quite probably some excellent resources to lean on. My PWP and I learned that support groups of your peers - others who have walked in the shoes that you are just now learning to wear - was a life-saver. Our son was diagnosed with a serious mental illness when he was 19, and this sort of thing can easily tear a marriage apart. We found a group of people who had family members with equally debilitating mental diseases, and through those people we learned how to cope. We were given survival techniques, and lots of encouragement. There are all sorts of lists on the PD websites, and my recommendation is to hunt up a support group. Attend a meeting or two - if you don't feel 'right' with one, try another. As you've found out, PD isn't something that you can deal with alone - and the more help you can get from caring, understanding folks, the better you'll be able to manage AND to help your Mom. Best wishes - Sharon 56 CG to 65 PWP
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KhadgarJoined: 26 Nov 2007Posts: 2
Posted: Wed Nov 28, 2007 12:09 pm Post subject: Re: My dad has PD, I can't handle his decline.

MamaGull wrote:
Attend a meeting or two - if you don't feel 'right' with one, try another.I had attended a support group for caregivers that was local to my area, and everyone there was like, 20 years older than me. It was a downer. But, like zmunn said, maybe it's not my age. It feels like it is most of the time. Well, not the sole cause, but a catalyst. I don't know. My family dynamic is not that of open discussion. My dad is really stubborn, and it's taking forever to work him down from being so. I mean, I know that's normal. He doesn't want to give up his independence, I got that. It just seems that whenever I try to bring something like this up, this aura of doom fills the room and I am compelled to shut up. Difficult conversations -- are difficult. The more I think about it, the more I think it is not really pride. The thoughts are: If I go to a support group or a therapist, that is telling my dad, "You are causing enough stress in my life that I am going crazy and need professional help." He blames himself for everything, I'm almost positive he'd find a way to feel bad about that. Argh! I don't know. ...Thanks everyone.
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MamaGullJoined: 16 Mar 2007Posts: 21Location: Washington state
Posted: Fri Nov 30, 2007 3:35 am Post subject: Re: My dad has PD, I can't handle his decline.

Reading your last post, I thought I'd take a different approach. How about I float a few ideas past you? (point of reference, I'm 56, husband is 65 and was diagnosed 3 years ago; our son is 29) Do you feel the need to seek counselling, or to attend support meetings to help YOU, or to help you communicate better with your father? Do you and he communicate well about things other than PD - your school, activities, things he likes? I'm no help about communicating with dads that can't open up, mine is the same way, and after too many years I've quit trying. But I have learned a few things from him.... I haven't met very many guys that don't have a stubborn streak somewhere, some are just a whole lot more obvious about it. The more stubborn, the harder it is for these guys to open up (or so I've found), and there is too frequently a pointed avoidance of seeking medical attention, no matter how serious the situation. Sometimes stereotyping happens because we've seen the same behavior repeated by the same group of people over time - nothing judgemental, just making the observation. That said; it is VERY difficult for any man to be told that 'the life you expected to live ends today; you now have a degenerative neurological disease that will, over an undetermined period of time, rob you of your dreams'. Any research into PD makes that even worse - learning that at some time in the future things you take for granted may turn into daily struggles - swallowing is the one my husband finally admits that he fears. We know of the most common - walking is the big one, talking is a problem as well. There are many more. Talking about PD is twice as hard as anything else; if you talk about it, that implies that you have accepted it (and all of the implications as well) in your own mind. There seems to be way too little gray territory - too many people live in black or white. "I've got PD, I'm going to end up in a wheelchair with a feeding tube and a catheter, unable to communicate because my voice will be gone, for all intents and purposes a vegetable." You and I know there is at most a grain of truth in some of this, but the picture will be far less bleak than the imagination... It has taken me a while to sort out the approach to discussing PD with my husband - I don't ask him pointed questions about it. He knows that I'm involved with an online support group for PD caregivers, and I found that if I just talk about some of the things that others are running into, he starts to open up to me. The other time that he opens up is when we are driving - fewer distractions and nobody else can overhear our conversation. Let me know what you think, okay?
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