For those who care for someone with Parkinson's disease
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By shakydog On 2009.12.27 23:18
….… on my life….…

in 1985 my father asked me to move 1200 miles to become a caregiver for his brother. My uncle had asked my father to be his executor and guardian during his progression with parky. When I moved to San Diego, I was a 29 y.o. Farm boy and had no idea what i was getting into. I spent 2 years of learning how to handle meds and the dirty part of caring for someone 82 years old with full blown parky. I worked 40 a week to pay my bills because there wasn't enough money to pay for both nursing and me so I spent 16 hours a day as his only caregiver.

After his death, I moved close to my parents home. My father soon followed his brother in his parky symptoms. My mother did the best she could, but had health problems of her own and I spent more and more time giving a hand with the daily chores that were necessary for caring for someone in a wheelchair because of the
parky. His passing in 1993 left a hole in my heart that still won't heal.

When I was dx in 1998, I was devestated. I had spent over 10 years dealing with the end result of this bastard and I knew how my world would end - not with a bang, but a whimper.

Do I play tennis? No. I can't play golf.

I can keep going and - NOT LET THE BASTARD WIN

I appreciate you who love enough to give the best care possible.

Humor and Hope is my way of dealing with something I've seen happen before. get some

This must be the post Xmas blues


By Mary On 2009.12.28 14:20
shakydog, I can only imagine how you must feel. Reading your post made me sad after caring for Dad and watching what the disease did to him. This was the hardest thing I have ever had to do in my life. I can't imagine what it was like for Dad living it, when watching it was so devastating. I hope to never have to experience it again. I also have a hole in my heart and life left by Dad leaving me. Hugs and blessings to you, Mary

By lurkingforacure On 2009.12.28 15:22
shakydog, I am so very sorry, wow, is all I can say. I am pretty sure my husband's dad has PD as well but he is almost 80 and it is just now symptomatic, although he has had so many other health issues the early PD symptoms were probably obscured. But to have had to deal with PD and all of its stages for not one, but two people, I cannot fathom.

It is interesting, though, if not tragic at the same time, that you endured incredible stress from a pretty young age. And I mean stress, not the kind we all have in our lives, but that relentless, watch-a-loved-one-die-despite-everything-you-do kind of stress. The reason I mention this is because there are some fellow parkies I know who believe chronic stress like this brings on PD. One fellow in particular did as you did, moving to take care of first one relative, then moving again to take care of another, then house catches on fire, etc. etc. Just one big life calamity after the other....and then the PD. He is not alone in his belief that chronic, horrific stress activates microglia in our brain and they never are able to relax again, and that constant overstimulation (they call it exitotoxicity in the medical world) is a killer. The best we can do is de-stress, which is next to impossible for someone like my husband, but we do the best we can.

My daughter's school counselor lent me a book called "Why Zebras Don't Get Ulcers" and it's all about the actual physical consequences of chronic stress, that severe kind of stress than never lets up. I think pain has the same effect, particularly if you don't know when, or ever, it will improve. The book, among other articles out there, makes a compelling argument for de-stressing our lives as much as possible. I know, easy to say, hard to do. I admire your courage and outlook in light of your past, and you should take a great deal of comfort in caring for not one, but two loved ones with PD.

By mylove On 2009.12.28 15:50
Shakydog’s courage, and his way of looking at life (head on, ready to take whatever comes and make the most of it), are what I admire in him. He’s not stretching the truth on the challenges life has given him (and there’s far far more to the story than he is giving you here), but in the face of it all he’s a stalwart, honest, giving man that has always thought more about others than himself. While he is currently wearing the hat of PWP, he has also been a caregiver, as he says, so he shares many of the same experiences as most of you. I feel that makes him a great resource, as he can relate to how it works on both sides of the fence. He has indeed walked the walk. There are things I wish I could have helped him bear, but that was before I had the privelege of knowing him. In this, and in so many other ways, he has been my hero.

By karolinakitty On 2009.12.28 16:05
Shakydog.. i can empathize ... i too took care of family. My gram, at two different times in her life and my mother. Neither had PD but had serious problems with heart and diabetes. I was only in high school when my gram first got real sick, I worked, went to school and slept on a cot beside her bed at night. Slept wasn't really the right word, perhaps napped. The second time i was married with 2 kids in school and working. Mom the same thing until i just couldn't do it anymore, the last time she fell, i had to put her in nursing care. I still was there almost everyday and was with her when she passed.

We too take a humorous approach to this new life with PD. If we didn't i think we'd just get on each others nerves. So here i am caregiving again. This road will be a harder one to hoe but it's a different place and a different time. I know it's not the same as my other caregiving times, that's why i'm here.
My PDr also was a cregiver for his mom who had cancer. We both know the horror of things, he had a breakdown after mom, and then just about a year later was when he was mugged, hit over the head several times with a crowbar and left for dead. He says he figured since he didn't die then there was more for him to do. Even with this PD now, he feels the same. I know at least there is still for me to do and dammit i'm gonna do it until i can't no more.
Strong convictions from someone who was once dead and now is facing it head on. Is there power in being positive, i believe so, we believe so. Take what you get and move on. What, are you gonna lay there and go Oh woe is me or get off your butt and be what you can until you can't be no more......we choose the latter.

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