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jasonellis

Losing someone I have yet to meet to Lou Gehrigs Disease

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star2000   

I am a caregiver and have been for 6 years. I was fortunate enough to be my mothers caregiver before she passed away 19 days ago. I finally got ready to go back to work just to find out that I am going to be taking care of someone who is dying. At first I didnt know that I could handle it but as I started researching, I discovered that I would want them to have great care. My client has Lou Gehrigs disease. I have honestly never cared for anyone who has this. I wish that I knew of some people who have dealt with this before just so that I can get information one on one. I have been doing research on my own and reading up about it. I also watched a documentary about a guy who started filming as soon as he was told he has it. It was a very wonderful documentary called Indestructible. I just want to get as much infortmation as I can because I want to be able to be prerared for everything. I honestly hope that someday we can get a cure for this. I know this is going to be a hard journey for me, even more so for my client and his family. I am not sure how I am going to be emotionally, I hate knowing that im losing someone yet again. It could be 2 years it could be 5 years. I dont know for sure. I havent met them yet because their paperwork is still waiting to be approved and so I hope to hear something this week. I just dont know how to feel at this point after watching the documentarry it just really tore my heart out of my chest. I dont know if anyone on here has lost a friend, or family member to ALS. If anyone has dealt with ALS and has any advice, I appreiciate it. I always love my clients and just want to treat them as I would my own family. I will be coming in here probably more often to get my feelings out because like I said I am new to this but know this journey will not be an easy one.

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Caremal   

I have helped with PSP Progressive Nucular Paulsy sp? and it is smiular. You will know what to do just help them in what they need. Walking eating. and so on. if eating is diffacult for them - put food on their fork or spoon and let them eat it if they can on their own. Spoons area easier as food will not fall off so easy. Get to know how they talk as that will one of the most difficult thing. Lean some sign language so so speak. So that if things get harder for them you will know how to help them. Make the sign language your own between the 2 of you. and God be with you as you take on another caregiving task.

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I wish you a great deal of strength in guiding this person through their greatest challenge in life - the challenge of facing one's own mortality. It's important to keep yourself grounded with a fundamental law as you go through this experience - the law of gratitude.

Remember to find gratitude in your own life and your own fortunate circumstance.

As you help this client along, your own life is juxtaposed with that of someone less fortunate. Remember to appreciate every moment you have in your healthy body because, ultimately, we are borrowers from this world. Nothing is ours, it is only leased to us from the universe for a period of time. Be grateful for your life and enjoy your body and mind in memory of those who no longer can. This is where your strength will be renewed.

Best of luck and thank you for the service you provide.

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