kaylseyum
Member
- Joined
- Oct 17, 2012
- Messages
- 12
- Reason
- CALS
- Country
- US
- State
- WA
- City
- Near Seattle
Hi all, I am brand new to this forum. Happy this forum exists, not to happy to need it : / My mother in law (MIL from here on out) was just diagnosed with bulbar onset (probably familial) ALS about a week and a half ago although they have been suspecting it for awhile. My husband and I are her primary caregivers (mostly me as of right now). Man, it has been a whirlwind trying to figure everything out on top of coming to grips with this diagnosis and realizing my husband has a 50% chance of getting this disease as well if it is indeed familial (working on trying to get insurance to cover the genetic testing, which I know only accounts for 20-40% of familial cases...).
I work in healthcare field and I am currently earning my Master in Science Nursing (hence part of the reason I will not be able to provide full-care to my MIL). I am about to start a project and I want it to focus on ALS. So, long introduction, but my question is, if you could improve an aspect of being a PALS or a caregiver for a PALS, what would you like to see happen? While there seems to be immense information and resources for PALS a bunch of different places, I am coming to feel like there are definite gaps. For example, paying for long-term caregiving services? Healthcare workers knowledge of ALS? Coverage gaps? End-of-life and hospice coverage?
I appreciate any and all suggestions, and I hope to eventually help improve at least some avenue of this horrible disease as my masters will be focused in Program Development and Implementation.
I work in healthcare field and I am currently earning my Master in Science Nursing (hence part of the reason I will not be able to provide full-care to my MIL). I am about to start a project and I want it to focus on ALS. So, long introduction, but my question is, if you could improve an aspect of being a PALS or a caregiver for a PALS, what would you like to see happen? While there seems to be immense information and resources for PALS a bunch of different places, I am coming to feel like there are definite gaps. For example, paying for long-term caregiving services? Healthcare workers knowledge of ALS? Coverage gaps? End-of-life and hospice coverage?
I appreciate any and all suggestions, and I hope to eventually help improve at least some avenue of this horrible disease as my masters will be focused in Program Development and Implementation.