In May 2016, after a series of falls and visits to many doctors, my mother was diagnosed with ALS. I've been lurking here, scared to come out and say anything, touched by so many stories here and by the support you all offer one another. I have benefitted indirectly when I was feeling quite alone with all of this. Thank you.
Wasn't sure how to even post anything today (and wonder as I write this if I will again press "delete” so as to stay in hiding...) Anyhow - here I am. I am saddened by the heartache that brings us all here.
Snapshot of where things are now for my mom: she went from cane to walker to rollator to wheelchair-bound in less than 6 months. Now is having a lot of difficulty transferring in and out of the wheelchair. She’s so scared that she (soon) won’t be able to use toilet independently - told me today she'd rather die. She’s stopped taking showers b/c of modesty (refuses assistance unless completely covered) and fear of falling – instead, she just spot-bathes as she's able. She still has use of her hands and some upper body strength but is getting more hunched over.
Her swallowing is okay and she's maintaining her weight. Her voice is increasingly affected (low volume), and her speech, although slurred when she’s tired, is still understandable. Her breathing is taking the biggest hit lately – she has shortness of breath, incredibly weak sneeze/cough, huffs/puffs audibly when moving even slightly. Fortunately, she has been using a bipap every night and during daytime naps; it has both assisted her sleep and drastically reduced daytime drowsiness. Prior to ALS, she contracted pneumonia several years in a row, and so that looms as a huge risk.
I am the only family member living nearby her, so it's pretty intense for me, but I am grateful for this time and wouldn't trade it for anything. I am with her daily and constantly, doing what I can for her. I was feeling angry at my siblings for being so hands-off and sporadic in their visits, but now I just feel more sad that they and Mom don't have the time together they could be having in these precious days.
The anxiety/worry/sadness was feeling like a big rock I’d been forced to swallow but somehow I’ve gotten a bit better at quieting the screaming inside my head so that I can be there for her without the distraction of my own fears. Her courage is inspiring to me, but I often doubt my own. I pray for acceptance and staying within the bounds of the day, not getting ahead of where we are.
In finally posting this today, I was hoping to come out of the shadows here, even if I have so little to offer anyone else.
Wasn't sure how to even post anything today (and wonder as I write this if I will again press "delete” so as to stay in hiding...) Anyhow - here I am. I am saddened by the heartache that brings us all here.
Snapshot of where things are now for my mom: she went from cane to walker to rollator to wheelchair-bound in less than 6 months. Now is having a lot of difficulty transferring in and out of the wheelchair. She’s so scared that she (soon) won’t be able to use toilet independently - told me today she'd rather die. She’s stopped taking showers b/c of modesty (refuses assistance unless completely covered) and fear of falling – instead, she just spot-bathes as she's able. She still has use of her hands and some upper body strength but is getting more hunched over.
Her swallowing is okay and she's maintaining her weight. Her voice is increasingly affected (low volume), and her speech, although slurred when she’s tired, is still understandable. Her breathing is taking the biggest hit lately – she has shortness of breath, incredibly weak sneeze/cough, huffs/puffs audibly when moving even slightly. Fortunately, she has been using a bipap every night and during daytime naps; it has both assisted her sleep and drastically reduced daytime drowsiness. Prior to ALS, she contracted pneumonia several years in a row, and so that looms as a huge risk.
I am the only family member living nearby her, so it's pretty intense for me, but I am grateful for this time and wouldn't trade it for anything. I am with her daily and constantly, doing what I can for her. I was feeling angry at my siblings for being so hands-off and sporadic in their visits, but now I just feel more sad that they and Mom don't have the time together they could be having in these precious days.
The anxiety/worry/sadness was feeling like a big rock I’d been forced to swallow but somehow I’ve gotten a bit better at quieting the screaming inside my head so that I can be there for her without the distraction of my own fears. Her courage is inspiring to me, but I often doubt my own. I pray for acceptance and staying within the bounds of the day, not getting ahead of where we are.
In finally posting this today, I was hoping to come out of the shadows here, even if I have so little to offer anyone else.
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