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Hi I was dx w/ALS in 2012. Then in 2014, after my first heart attack I was dx with CHF. About 6 months or so ago I was dx w/afib. From what I have read when a pt who has CHF & an ef < 35 (mine is about 15) the pt surviving more than a year is grim. But I have been told a few times now that I didn't have much longer & I'm still here. They are just going off of statistics & everyone is different so they really don't know, they are just guessing; But now is different. I'm tired & much weakerr & on most days I think that I would welcome death sooner than later. But I'm not sure if that's how I feel or just depression. Actually I'm not sure it matters. Does any1 else ever feel like this.
I lost my father on February 21st... it shocks me to think that was almost a month ago now. My father was diagnosed with ALS (Lou Gerig's disease) about three and a half years ago, so his death was not sudden. It was painfully slow to watch him slowly become paralyzed, immobile in a wheelchair and to loose his capacity to communicate verbally. The past three years as I have been completing college and starting my job search, I've been living and bouncing back to my home town to be a part time and full time caregiver for my father as his body started to fail. The past 3.5 years have been very emotionally difficult for me and I almost feel like I have been grieving for all these years as I watched him slowly loose his bodily functions. Emotionally things have gotten a lot worse for me in the last month. I recently relocated away from my hometown with my boyfriend. I have many different factors that are affecting my emotions; I am very stressed about job searching, being unemployed, lack of income, lack of validation through work, lack of social outlets. I spend a lot of time home alone applying for jobs. I am starting to feel estranged from my partner because I feel like I can't talk to him about my grief because he has not lost a parent, or another close family member. My foundation of grief make all of my emotions amplified and difficult to understand all of the various stresses and emotions I feel. I often feel that most people can't or don't understand what it is like to loose a father so young. I am 23 and he was 49 when he passed. Many adults I know still have not lost their parents. I have always felt the misunderstanding surrounding my father because of the nature of his disease, I feel that I have uniquely painful experience that makes me feel further isolated. The worse thing is, is that I really don't know how I can make things better except for staying strong and moving forward. I have trouble crying (especially in front of people), but I always feel better when I do. Often times my feelings get to messed up in my head, I can't put them to words. Sometimes I bottle my feelings up and lash out at my partner because I can't really seem to communicate well. This makes me question my relationship and question many aspects of my life because I don't know if its grief or another factors that is causing my unhappiness. i know that it is the grief, but it makes everything so much harder. Like many of you, I have lots of issues sleeping. Often times I can't get the final images of him out of my head. I spent his final three days by his side while at home he was on hospice, and some of those images will stay will me for the rest of my life. I tell everyone that he died peacefully in his sleep, but I question it myself. I try to think of him when he was happy and healthy, but sometimes that just makes it worse. Recently, I have such a hard time wrapping my head around the idea that though he body was failing, his spirit was alive and happy. He had his good days and bad while he was sick, but he was generally positive and the wonderful man I will always love. But then at the drop a hat, his body decided to shut down...and that spirit just left. One minute it was there, the next it wasn't. Immediately after he passed, I was relieved and happy for him. His body was his burden, it caged his spirit. I was happy that he had found peace outside of his physical form. But I still can't process this boundary between tangible and intangible that I keep banging my head against. I miss him dearly every day, and I know I will never stop missing him. He will always be the best daddy ever, and I will always be his little girl. Due to the fact he couldn't talk, the last communication I received from him was a text message a month before he passed...I miss his voice and I wish I could hear him again. Thank you all for listening. This is the first time I have turned to a forum to talk. Any advice, comments, stories, etc. are very welcome.