I have been trying to find help for over 8 months regarding Trina’s screaming for many hours in a day (sometimes up to 12 hrs) and flailing on and off day and night (our goal is to keep her safe). All the docs want to do is try new meds, which may be a part of the problem. Then a crazy neurologist, after knowing she is non-cognitive, vegetative, asked us if she could drive. WHAT? How can we feel safe with no one to turn to? My last writing was about us being alone in this and it is the truth.
Her current, main doc, will try to get another specialist out of the area to do a cam appt soon and hopefully we can reevaluate meds. A new med has helped her sleep, so I am thankful for that. But to have one’s body at unrest all day and night must be exhausting for Trina as well. We just hope to find answers soon.
Mama is getting tired. But, I am taking extra caution to eat better and exercise (walks) as often as possible to stay ahead of the tasks needed to allow Trina to feel happy that we are in this fight 100% for her!
Caregiving has its moments … we are human … but literally the majority of the time we only feel blessed to have her with us.
I encourage all of you out there to take only one day at a time and get as much good rest as possible to brave the new day with a smile.
READY, SET, GO!
Blessings and will check back in soon.