kaylseyum
Member
- Joined
- Oct 17, 2012
- Messages
- 12
- Reason
- CALS
- Country
- US
- State
- WA
- City
- Near Seattle
Hey all, this is actually my second post since my mother-in-law's (MIL) ALS diagnosis earlier this month. This diagnosis, as you all know, is devastating. On top of it all, her housing situation is not ideal and we are trying to figure out the best option for where to move her...
She currently lives in a house with many stairs, a puppy, and with her "less than nice" husband who has said that he "just wants his life back." Yeah, don't we all. So, that leaves my fiance and I as my future MIL's only support (I call her "MIL" for ease and lazy typing more than anything). She wants to move out (but they will stayed married so she can keep insurance) and we want to help her in whatever way we can. My hubby-to-be has severe dyslexia so his ability to navigate the convoluted world of healthcare and insurance, taking notes, keeping dates, names and phone numbers straight, etc is minimal, so it is more me than anyone. I would love to be able to devote 100% to helping her, but I am a nursing student in an accelerated entry-level Master's program (hard to explain but the best I can do is to tell you all that it is two years of school condensed into 11 months followed by another year and a half for the Master in Nursing portion). Uhh, I digress.
She had bulbar onset. As of now, her symptoms are minimal to no speech, lots of weight loss (mostly from not eating due to difficulty swallowing and depression). Her muscles are only showing early stages of ALS (the LMN portion), but she has two injured shoulders (one is torn), a bad hip and a bad knee (all on the same side). So she has some difficulty walking, has fallen a couple times (really worries me!), but is kind of stubborn (!) and not wanting any walking assistance devices yet except a knee brace and the occasional cane use...
Anyway, we are trying to figure out the best housing option for her. We are on the path to getting her SSD so that she no longer has to be dependent on her husband's income, but our house is too small for her to live with us and she has said that she doesn't want to live in "an old folks home."
I am wondering if you all think it is plausible for her to live alone? If so, how long? Will she eventually need one-on-one 24/7 nursing care? At what point? I am still kind of confused by the timeline since everyone is so different, and what things can be done by loved ones vs. an outside caregiver vs. a nurse's aid vs a skilled nurse? I am feeling very lost with all this which is completely out of my element as I am usually the one who everyone goes to for answers and support and research.
She currently lives in a house with many stairs, a puppy, and with her "less than nice" husband who has said that he "just wants his life back." Yeah, don't we all. So, that leaves my fiance and I as my future MIL's only support (I call her "MIL" for ease and lazy typing more than anything). She wants to move out (but they will stayed married so she can keep insurance) and we want to help her in whatever way we can. My hubby-to-be has severe dyslexia so his ability to navigate the convoluted world of healthcare and insurance, taking notes, keeping dates, names and phone numbers straight, etc is minimal, so it is more me than anyone. I would love to be able to devote 100% to helping her, but I am a nursing student in an accelerated entry-level Master's program (hard to explain but the best I can do is to tell you all that it is two years of school condensed into 11 months followed by another year and a half for the Master in Nursing portion). Uhh, I digress.
She had bulbar onset. As of now, her symptoms are minimal to no speech, lots of weight loss (mostly from not eating due to difficulty swallowing and depression). Her muscles are only showing early stages of ALS (the LMN portion), but she has two injured shoulders (one is torn), a bad hip and a bad knee (all on the same side). So she has some difficulty walking, has fallen a couple times (really worries me!), but is kind of stubborn (!) and not wanting any walking assistance devices yet except a knee brace and the occasional cane use...
Anyway, we are trying to figure out the best housing option for her. We are on the path to getting her SSD so that she no longer has to be dependent on her husband's income, but our house is too small for her to live with us and she has said that she doesn't want to live in "an old folks home."
I am wondering if you all think it is plausible for her to live alone? If so, how long? Will she eventually need one-on-one 24/7 nursing care? At what point? I am still kind of confused by the timeline since everyone is so different, and what things can be done by loved ones vs. an outside caregiver vs. a nurse's aid vs a skilled nurse? I am feeling very lost with all this which is completely out of my element as I am usually the one who everyone goes to for answers and support and research.