For those who care for someone with Parkinson's disease
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Topic A PWP caregiving a PWP Go to previous topic Go to next topic Go to higher level

By karolinakitty On 2012.03.04 09:32
As I mentioned a short time ago, I have been getting more and more involved with the PWP, then really the caregiving aspect of things. In my own little world I think I've got that end ok. That's just me. I've played the caregiver role many times before so it's not new to me. THat's just me, this is my opinion and not made to look like I am looking down on anyone or what what I am saying is the way it should be.

Out of about 100 PWP that I am currently involved in, in their personal and medical lives, 5 of those are currently caring for or have recently lost a loved one with PD.

I am not saying here that one has it tougher than the other, first off, this again is my observance, but imagine having PD and caregiving for someone with PD. Imagine being the partner of a person with PD, who is caregiving for a loved one with PD. You know as I go through life, one thing that has kept my attitude where it is, is knowing that there is always someone out there who has it worse than you.

I'm not going to use these peoples real names, even though they wouldn't care, I just see so much life in them, it truly amazes me.

There is Sally, she has PD, has had PD for almost 10 years now. She care gives for her Father who is in his 70's and has PD, as her mother needs caregiving also,he is currently in his last days and she still is out there advocating for both patient and caregiver. To see her so strong mentally and emotionally really inspires me. Her spouse, helps her, helps her father. He really is something special too. I guess the real deal there is this. Knowing what you are going to face, seeing it right in front of your eyes but still pushing forward is amazing.
At present, I don't know of anyone here caregiving that actually has PD themselves. I know we used to have one called Shaky, (not shakydog)his dad had PD , he recently passed, his brother has MSA, and he himself has PD and aided in the caregiving role as he his dad stayed with them in his last days.
Knowing PD and living with it are miles apart. Having the disease and actually seeing first hand what you will end up like, how your personality may change, how your body will deteriorate, how much you will lose of that's tough. I can't imagine having PD myself and taking care of someone with PD, where do they get the strength, both physically and mentally.

It's hard enough watching your loved one lose a bit of themselves as the disease progresses, but knowing this will probably be your end has to be tougher. Again, just my observation.

It really helps my own walk down this road, to see others who are in this deeper than I am. To hear them talk, to see them aide others is truly amazing. To know what they go through on a daily basis and see how they handle things really puts it right out there for me. It truly put things in a different prospective.

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