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birdnerd77

Processing the loss of my father to ALS

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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. 

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Birdnerd77,

I am very sorry about the loss of your father. It doesn't matter how or when we lose them--it's horrible. It's okay that you do or don't cry and get angry. Those are all very normal feelings for such a profound loss. Loneliness, anguish, fear, guilt and many other emotions are some other emotions we experience. Talking about your feelings is the best way to process and heal. It will take some time, but eventually, you will begin to feel better and the sharp, agonizing pain will fade to a dull throb. You will even be able to smile and laugh eventually when you recall a fun or happy memory of your father.

 

Please join us here and feel free to post, browse read and chat. We will be here for you.

ModKonnie

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Trish91   

Hi Birdnerd77,

 

I am really sorry for your loss, and I do understand what you are going through, as I lost my dearly beloved mom three months ago, to lung cancer, and experienced her suffering over the last four months of her life, initially, as mild pain in one of her legs, and then, over the last month, as full-on pain, weight loss, lack of motivation, inability to go the toilet on her own, loss of her appetite and even her voice had changed in the end. I also saw her die, and those awfully painful memories still hunt me every day and will be with me till I die.

 

She was only diagnosed 2 1/2 weeks before she passed. She was 67, and a wonderful person, a generous, strong and positive human being, a great mother, the best mother I could have wished for, my soul mate and very best friend and biggest supporter. She'd always been incredibly healthy, autonomous and energetic, so seeing her decline like that hurt terribly. Thus, like you, I felt relieved when she passed and her soul left that decadent body that had reached its limit and was making her so miserable.

 

Nevertheless, and even though I believe in a Supreme power and the spirit world, a different dimension with zero pain and suffering, all peace and happiness, where she is, it is unbearable not being able to see her, touch her, talk to her and get a response, kiss her, hug her, tell her that I love her, and just know that she's with me in this world, which is a really tough one. I know she's around, always protecting me and inspiring me, but my faith dwindles, my motivation fades, and my sadness and hopelessness overtake me like never before in my life, and I start to doubt everything, and feel no joy in anything. I wish I could have her with me again, here, or be able to join her there.....

 

I have a good support network, so I am very grateful, but at the same time, nobody comes close to my mom, her love and our relationship, which was super especial and unique.

 

I have had to deal with a lot in a very short time, and it's been a shock, the most shocking situation, and I feel traumatized. I had to organize my mom's property and assets, a process that isn't over yet, the contents of her home in record time, and start a new job, which is really stressful, as things that didn't matter to me before, now do, for I am particularly vulnerable and sensitive. Sometimes I feel like I am going mad at work, and it seems like an eternity. I also feel very lonely, for I've got no friends at work, and cannot talk about how I feel with anybody.

 

Of course, being at work distracts me somehow and gives me a reason to get up and go, but work is insignificant compared to how much I miss my mom and how I feel about her not being here any longer.

 

I guess all we can do is take it one day at the time, one moment at the time, and try to eat, exercise, sleep, work, search for work, talk with loved ones (boyfriend, husband, siblings, living parent and friends), and seek professional help if need be.

 

It's normal for you to be under a lot of pressure, so don't be too hard on yourself. Do what you can on a daily basis. You will eventually find a job, and it will be a lot easier than overcoming this tragedy. Everything has a solution, even if not immediate, the only thing that doesn't is the fact of death, as my mom used to tell me when I complained about the stupidest things in life.

 

We are all here for you, this forum is great, and nobody will ever judge you, so please vent whenever you feel like it, and please let us know how you go.

 

Warm regards

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stacey09   

I share my desperation, as my wife was diagnosed with ALS last January. I have scoured the internet looking for some glimmer of hope, however,i found one. This is what I know about HEALTH MED LAB Clinic and the drug Nurown. The Clinic HEALTH MED LAB was founded in New York and moved to South Africa. The drug has evidently been given "fast track" status by the FDA, which means trial stages 3 ad 4 are being conducted simultaneously. I believe these stages are 18 month studies which began last spring. I have asked our neurologist about what was happening here. He told us one of his patients Who just got cured again from ALS treatment with his medication, while the cells could be collected and cultured in South Africa, they don't have to go to Austria to get them implanted. Again with positive results. He has also had patients go to China and Mexico for similar treatment, with no success.My wife neurologist should be aware of any clinical trials that are available. My wife is now strong and healthy without any atom of ALS in her blood, You can contact them for ALS Cure at MDA OR healthmedlab@gmail.com

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