Eilleen.... Whatever you did or didn't do I can't think of anything more selfless and beautiful than what you did. The helplessness of the unknown was alleviated by your presence. Michele's passing was very moving.
My cousins wife (veteran RN)and another cousin are at my sisters now helping my brother in law with Michele's "transition". She is officially getting hospice care and after a difficult week of painful spasms, horrible anxiety and air hunger...she is resting comfortably . Even though I know she...
Thank you for your response. We talked about some options this week and I think BIL has some people he will call. It's such a hard thing because he is her main "lifter n chief" and she knows its hard on him yet he resents being criticized for not moving quick enough. I love my sister but I...
My sister is completely paralyzed now except for eyes and still able to smile beautifully. She indicated to me she could feel the CO2 building up in her body despite ventilator use (bipap). She thinks the end is near and wanted to discuss some affairs issues. She wants hospice but her husband is...
My PAL (sister) has had rapid ALS. Diagnosed Sept 11 last year she could walk with cane to the past few months has progressed to unable to speak, eat (PEG) or move at all. I wish we'd had time to adjust. I can see and feel she is near the end. At 58 and at the height of her career and looking...
Please....I need some response. I've gone from having a sister and trying to make sure all ducks were in a row with ALS. The best equipment etc.. to feeling completely slain by this demon who has left her motionless. I was just bragging a few weeks ago how I knew what she was saying. Now none...
My sister has had a fairly fast progressing ALS having been formally diagnosed Sept 2019. Limb onset has given way to inability to speak intelligibly at all and just had a PEG placed this past week due to very poor swallowing, dehydration and weight loss.
My concern is her distress and...
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Totally understand. My sister went from limping to full power chair in 6 months. She can't manipulate her phone to text me. I go over to their place Mon and thurs to help and give my brother in law a break from bathing, feeding, dressing and we watch Tv and sit in the sun...
My sister was diagnosed this past Sept.
It is so sad to think my little sister will pass prematurely. This forum helps me realize I will get through this. Thank you for sharing a little of the grief. All of it is helping me process.
This thread was informative. I'm fairly new to posting. My sister is th Pal and it is the spacticity that causes so much pain.
Moving, stretching and tramadol are all that helps. Benzos too
I am not very tech savvy but just reading these forums has helped me feel less alone as my dear younger sister is struggling with MND/ALS. Thank you all.