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Sick Parents

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August 24th, 2008

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eyes
First, I must thank you for automatically allowing us to post in this community because I really need to write right now.

I was a part of this community a really long time ago when I first found out my dad's diagnosis. Actually, I think I was just skeptical of his diagnosis. We didn't even know for sure. I had a slightly different name, and I was about...16 I think. I'm now 20 and just coming back to college for my junior year. The disease has progressed quite a bit. My dad has early-onset Alzheimer's disease. He's only 49...

I just feel like I can't talk to anyone who fully understands what I'm going through. I don't like pity parties, which is usually what I get when it's mentioned. Most people just ask me how my dad is doing, and I say "He's all right." What else am I supposed to say? I HATE that question. He has trouble tying his shoes, making food for himself, getting dressed, just every day things. He doesn't remember much. He's so skinny, and it's like a stranger has overtaken his body.

I just recently came back to college last week(I'm only 45 minutes away from home), and I just feel so guilty. One-for leaving my mom. Two-because I'm reacting in ways I don't understand. I'm like taking out my anger subconsciously on my mom and I can't help it. I'm not yelling at her or anything, I just tend to be a bit colder towards her. I don't mean to. I think my way of dealing with this is by ignoring it. I help my dad when he needs it and I'm there, but it just hurts so much seeing him. The man that raised me...always so happy and having a good time...it's just so hard and I'm taking it out on my mom, who just lost her job. Of course it's not as bad since I'm not at home at the moment, but then I just feel like I'm not there to help at all now.

None of my friends understand. Sure, some of them have grandparents with Alzheimer's, and I know that's heartbreaking but it's slightly different when it's your parent. Do you know what I mean? You don't necessarily live with your grandparent. Not saying it hurts any less. It's just different.

Then when they complain about the dumbest stuff. It can just get to me when they go on and on and on and on about it. Things could be much worse...which is what I keep telling myself.

If you actually read all of that long novel, I appreciate it. Thanks for listening.
<3 Shmoo

August 5th, 2008

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girl
I really feel like I am the only one going through this right now, but I know I'm not.
I'm 24, and 6 years ago my dad(who is in his early 50's) was diagnosed with stage IV melanoma is his leg (near his knee) He had the surgery to remove it along with having the lymphnodes near by removed. He then did the interferon treatment. The dr. only gave him 3-5 years with the stage of cancer he had.
He was cancer free up until now. Today we got the results from him yearly CAT scan. It's back in his leg, but it didn't seem to spread to any lymphnodes or organs or anything like that which is good. He will be having surgery to get it removed and quite possibly have radiation treatment.
Obviously my dad is having a hard time going through this but he is just thinking of the absolute worst which isn't making it easier on us. He says he's only going to live 6 months, and the dr. didn't say anything like that. That's just what he feels. My mom was with him while they saw the dr. today. She is also a nurse and she doesn't think it's as bad as my dad is saying it is right now. My mom said not to listen to what my dad says (about all the negative stuff he is saying/thinking right now) but she said just to let him say what he wants to say; I guess just to get it out of his system.
I just wish I knew someone who understands...someone who is going through something similar.
We also just found out that my uncle has tongue(I think) cancer.
I'm really just waiting for it to come to me now.

August 4th, 2008

Hiiii

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Hey, I'm not sure if I'm even allowed to be in this group, I just want to be here for support for everyone else. I grew up with a sick parent, my mother was sick my whole life, all 18 years of it. Just 11 months ago she passed away. I know what it's like to live with a sick parent and I feel like I can help some of those people suffering with it now go through the hard things I went through my whole life, I just want to help people so they don't have to live life the way I did. I hope it's okay that I joined the community.

May 7th, 2008

Welcome!

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L is for Lupus, an online directory of reviews and recommendations for patients by patients, has officially gone online today.

Bear in mind, this is just the beginning. This site will not be limited to just lupus-related material. I've begun to include Fibromyalgia books and websites to review, and I hope to include other auto-immune diseases as well.

I'm very excited to be ahead of schedule! Please help get this started and write some reviews! Your opinion will help others research their auto-immune disease. I hope to see you there!



April 22nd, 2008

Beginning May 15th, 2008, L is for Lupus will be an online directory of reviews and recommendations for lupus patients by lupus patients. An online community/bulletin board is also in the works.

L is for Lupus is currently seeking submissions for books and other items to review. We're not ready to accept actual reviews just yet--that will begin on May 15th. If there's something you would like to see reviewed on L is for Lupus, please let me know by posting below or send me an e-mail!






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February 2nd, 2008

Hey everybody, I recently found this community and thought I'd ask for some help. If this kind of post isn't allowed, please tell me and I'll delete it.

My mother was diagnosed with an autoimmune disease known as Sarcoidosis in her lungs about 19 years ago, when I was 3. Over the years she has gotten progressively worse and the Sarcoids are obviously affecting more than simply her lungs. Throughout my life she has gone in and out of "remission." Remission meaning not that the disease went away, but that it was, for lack of a better word, dormant. Her sister also has it, but in her central nervous system, leaving her pretty much bound to a wheelchair by age 46. Obviously, growing up with a chronically ill parent, I feel, has impacted my life greatly. Not necessarily for the worse, but I feel that it has definitely impacted my relationship with my mother and the rest of my family. It has also greatly affected the way in which I relate to the world at large. My experience growing up with a chronically ill parent has inspired my current undergraduate research project. I'm currently examining how growing up with an ill parent affects family relationships and broader social relationships. I'm having trouble finding people to interview who have had this experience so I thought I would see if there was anyone on here who would be willing to help me out and be a participant in my research. It's all confidential and can be done online. I would send you the interview questions and you could just type out responses. I only need about five more people to participate. Please, any help would be greatly appreciated! If you're interested or have any questions, please message me or comment. Thanks again, and hang in there.

May 3rd, 2007

Hello Everyone, 
I'm also unfortunate enough to be a member of this community, my father has late stage Alzheimer's. I've been caring for him for several years, but now I've decided to place him in a SNF. If anyone else is going through the same issues and would like talk about it feel free to send me a message.

September 6th, 2006

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Battus philenor
I am in a HIV Outreach class and right now we're working on a project. I'd like to interview someone who has or has lost a family member to HIV or AIDS.

If you're willing to participate in this short interview, please email me at kanta@tmail.com or you can IM me on christinewuvsyou (If I'm not on, PLEASE email me)
Thanks! :)

June 27th, 2006

Hi guys,
Do any of you all have experience with Deep Brain Stimulation as a treatment for Parkinson's Disease? Any tips, pointers, anecdotes?
Thanks!

June 21st, 2006

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office
Hi. I'm new to this community. My dad has non-Hodgkin's lymphoma.

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