LEWY BODY DAILY JOURNAL

This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.

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Saturday, August 23, 2008

one back to school

We took our son to his senior year of boarding school yesterday. I started to cry when we met with the college counsellor. I feel like worry about John's and my future has distracted me from helping our son with deciding about colleges. He was supposed to write a draft of an essay this summer, but he didn't even start it. I did remind him a few times, which leads to the other time I cried, talking to his advisor, worrying whether he will learn to step up and take responsibility for himself.

I'm hoping that pushing our son to take more resonsibility for himself because of his father's illness is coming at a time when the challenge is right for him. But I worry that it must be awfully hard for an 18 year old boy to have his father beginning not to be a father figure any more. His sister is younger but more resilient and more able to talk about what she is feeling. The idea that this is going to be hard but we are all in it together as a family works for her.

3 comments:

Anonymous said...

Stella here--
Oh, Pam, I recognize the feeling of not helping the son enough. There is a difference between boys and girls, as a general rule. So, maybe you dropped the ball one time, big deal. Look at all the other things you gave him this summer! You gave him time with his father. Who knows what next summer will bring but for now it was the right thing. The essay will be taken care of one way or another. I think you will be surprised at the maturity your son will gain during this next semester. Have faith.

natron_10 said...

Pam,
I feel for your son and daughter.. My father has been living with Parkinson's Disease and Lewy Body Dementia now for 13 years. He had the symptoms of PD when I was in 7th grade. He was a score/book keeper for my basketball team & we had a get together after the season and he was sitting on the bench reading the paper and my assistant coach asked him if he was ok because he was shaking the paper... He thought he had a pinched nerve and it was missed diagnosed as that for four years... The lewy body dementia was always the 2nd disease and never was bad, but now the two has switched place and lewy has taken over. He is in the last stage of both diseases now. I was lucky how my parents raised me; I was more mature than my friends; I guess I kind of had to be also... However, dad and mom has always tried to not put anything on me; because, they wanted me to live a "normal" childhood.. However, I helped out whenever I could and whatever needed a lot. I'm sure I should or could have done more at times, but I was young and had stuff to learn & mature into more than I was.. It's funny at times; I'm my father's POA & MPA and some people think that is weird because I am only 22 years old. However, I have lived through it all and I know what my dad wants and needs.. I won't lie; it has been hard, very hard, sometimes... My faith in God and my wonderful family and friends keep me going and keeping my father as comfortable and kept for as possible.. It's hard one day you are in your back yard playing catch with your father and now you can never do that again.... My family has always been really close, but I truly have to say with dad having these disease that I wish upon no one, we have became a lot closer... It's hard for a kid to know that his parent is dieing and there is nothing that you can do... You want to do everything in your power to do what is best for your parent.. However, you have to understand you can only do so much and you have to live your life also.. That is the hardest thing of all for me... My father worked way longer than he should have according to the doctors and he is stubborn as a horse sometimes, but i am very proud of him and he is very proud of myself also.. We finally had to put my father in a nursing home about 2 years ago. He is doing as well as he can be... One thing with Lewy Body Dementia you never know what tomorrow might bring... My father's neurologist always jokes with my mother and I that we should write a book because all the stories we could tell... For your son and daughter. Everyone finds their ways to deal with this.. I myself never really talked about my feelings and stuff.. I rather help other people with their problems then myself.. However, sometimes it's hard to hold everything in at times.. I found that at times if I just sit down on the computer and type away everything that I feel about dad and stuff it helps me get it out.. Also, everyone needs a escape... Even if it's not for very long you need to do something that gets your mind off everything.. I have a motorcycle and that is my get away in the summer and I live on the mountains snowboarding in the winter. Helps me just get away from everything and refresh I guess.. Between dad, college, work, and everything that goes on with a kid it's a lot to handle at times... However, one thing that i have became to believe over the years; everything happens for a reason. Even though sometimes we don't know why or what positive things can come out of it. God won't give you something he doesn't believe you are strong enough to get through..... It will make you stronger and grow also.. Sorry for the long comment and my grammar... I just start typing whatever comes to my fingers... I know it's hard but don't stress and worry yourself to death... My mom does that and I could only imagine what it would be like. I do it also, but it takes a lot harder of a toll on her I'm sure.. I always tell her "Worrying is like a rocking chair; it gives you something to do , but it won't get your anywhere." Live your life the best you can take each day.. Take it day by day and spend as much time as you can with John now while his mind is still good and add as many memories to hold onto. Also, live "your" life to the fullest as well.. I'm done writing this novel lol sorry again... I will pray for you and your family. God Bless and Take Care!

Very Sincerely,

Nathan

Pam said...

Thank you, natron_10. I will share your comments with my daughter so she knows she is not alone.

Pam