Turtals
Member
- Joined
- Dec 11, 2018
- Messages
- 18
- Reason
- CALS
- Diagnosis
- 12/2016
- Country
- US
- State
- MA
- City
- Newton
Hi all,
I was wondering if anyone has a document/binder to share where all the important information one should know about one's pALS is in one place (contact info for doctors, nurses, etc.; medication list; etc.)
I know we should probably have compiled such a thing already given that my husband was diagnosed more than two years ago and is quite advanced but since I am home, we've never really had a need for it. However, I am going away for the first time in a year...just an overnight for a college friend's milestone birthday. I know it will be good for me to get away and he should be fine, but I'm a bit wary to leave and realize that having this information handy would be at least a starting point to put my mind at ease.
We have a live-in 24/7 PCA/caregiver who will be here. He is absolutely amazing and takes care of all of my husband's care however, he has some limitations...like, for example, we kinda don't think he can read (I know, I know but he makes up for it in so many other ways). My kids (15 and 18) will be around and friends will be visiting over the weekend so they would be able to help our PCA with any reading or needing to contact anyone, should the need arise.
So, if any of you more organized people have such a document already that I could use as a starting point, it would be immensely appreciated.
Thanks!
I was wondering if anyone has a document/binder to share where all the important information one should know about one's pALS is in one place (contact info for doctors, nurses, etc.; medication list; etc.)
I know we should probably have compiled such a thing already given that my husband was diagnosed more than two years ago and is quite advanced but since I am home, we've never really had a need for it. However, I am going away for the first time in a year...just an overnight for a college friend's milestone birthday. I know it will be good for me to get away and he should be fine, but I'm a bit wary to leave and realize that having this information handy would be at least a starting point to put my mind at ease.
We have a live-in 24/7 PCA/caregiver who will be here. He is absolutely amazing and takes care of all of my husband's care however, he has some limitations...like, for example, we kinda don't think he can read (I know, I know but he makes up for it in so many other ways). My kids (15 and 18) will be around and friends will be visiting over the weekend so they would be able to help our PCA with any reading or needing to contact anyone, should the need arise.
So, if any of you more organized people have such a document already that I could use as a starting point, it would be immensely appreciated.
Thanks!