SorrowfulJones
New member
- Joined
- May 30, 2007
- Messages
- 5
- Country
- US
- State
- CA
- City
- Los Angeles
Hi, gang. I was just wondering if I could get a rundown of some of the things I have to look forward to. My mom was diagnosed with ALS on 5 April, of this year. From what I've read online, she's bulbar onset, the primary, most highly visible symptom being her increasing difficulty with speech. Between that, the increase in falls and her growing fatigue and "awkwardness" over the last year and a half or so...
Anyhow, talking to the doctor (out of her earshot), I asked how long we had her for, and he said, barring a miraculous remission or amazing developments in treatment or a cure, give the general progression, we're looking at 3 years, maybe 4. She has a great deal of weakness in her right arm and leg, no stamina, no energy, the least thing seems to wear her out. She can't lift her right hand above her shoulder or lift her elbow very far. We've been giving her goji juice, and she seems to have been more active, but that might be more psychological than actual physical benefit.
So I need the 101 course, ALS Caregiving for Dummies. I applied with her for SSI to supplement the widows' pension she gets, but they've already turned her down; I know, reapply. But what else is available? How do I swing getting her on MediCare/MedicAid? Are there any other resources for paying her medical bills? When do I get her a wheelchair, how much is reasonable and should I get a motorized/electric wheelchair? She has asthma and mislaid her nebulizer - how important is it to replace that (I intend to, but there are seemingly a parade of other things that take precedence)? She wants to stay in her house for as long as she can, so I'll be dividing my time between here and L.A. for a while - where do I even start looking for someone to stay with her when I can't be here?
And what do I do when I can't maintain anymore? There are times when it feels like, any minute, every atom of water in my body is going to suddenly start pouring out through my tear ducts; days when I just get so god damned angry, and I can't think of anyone to be angry at or what good it would do - what do I do then? I have enough trouble dealing with my own depression... What do I need to do to assure her comfort and dignity during the time she has left, and how do I do it without losing what's left of my mind? Oh - and can anyone recommend any good chat rooms for this sort of thing?
Knowing there are others out there helps a bit - I look forward to hearing from you folks. Thanks.
Yours,
Sorrowful
Anyhow, talking to the doctor (out of her earshot), I asked how long we had her for, and he said, barring a miraculous remission or amazing developments in treatment or a cure, give the general progression, we're looking at 3 years, maybe 4. She has a great deal of weakness in her right arm and leg, no stamina, no energy, the least thing seems to wear her out. She can't lift her right hand above her shoulder or lift her elbow very far. We've been giving her goji juice, and she seems to have been more active, but that might be more psychological than actual physical benefit.
So I need the 101 course, ALS Caregiving for Dummies. I applied with her for SSI to supplement the widows' pension she gets, but they've already turned her down; I know, reapply. But what else is available? How do I swing getting her on MediCare/MedicAid? Are there any other resources for paying her medical bills? When do I get her a wheelchair, how much is reasonable and should I get a motorized/electric wheelchair? She has asthma and mislaid her nebulizer - how important is it to replace that (I intend to, but there are seemingly a parade of other things that take precedence)? She wants to stay in her house for as long as she can, so I'll be dividing my time between here and L.A. for a while - where do I even start looking for someone to stay with her when I can't be here?
And what do I do when I can't maintain anymore? There are times when it feels like, any minute, every atom of water in my body is going to suddenly start pouring out through my tear ducts; days when I just get so god damned angry, and I can't think of anyone to be angry at or what good it would do - what do I do then? I have enough trouble dealing with my own depression... What do I need to do to assure her comfort and dignity during the time she has left, and how do I do it without losing what's left of my mind? Oh - and can anyone recommend any good chat rooms for this sort of thing?
Knowing there are others out there helps a bit - I look forward to hearing from you folks. Thanks.
Yours,
Sorrowful
. Epf gsun xjev O'wi tiip, vjisi ot pu sami eheoptv sepvoph jisi...vjot ot e huuf qmedi vu wipv.
