I get weekly updates about how Tyler is doing in his various activities. I've grown very accustomed to hearing that everything is great, and that's about it.
This week Tyler had a very bad day. It seems he was not comfortable with a fill-in staffer and got quite hostile about it. For whatever reason they had a long night without Tyler sleeping, and they had some damage around the house. It had to be one of the roughest times for him since moving in over a year ago. Fortunately he settled down the remainder of the week with his normal, trusted staff.
Emotionally, I never stop being a caregiver. Even with him living in another home and having a dedicated staff I still feel that emotional thread that ties us together. I know its inevitable that he will have bad times and struggles, but I'm not able to prepare myself for them emotionally. The instincts of rescuing and protecting him and everyone else comes back abruptly and strong. I feel powerless to not be there to calm him and comfort him.
Tyler's bad days have a real effect on my psyche, and I'm certain I am not alone among caregivers in this struggle. My therapist has drawn comparisons to a PTSD type of response to having had experienced so much stress and fear with Tyler's care for such a long period of time. I have battled through extreme anxiety, sleep problems, and heightened anxiety in situations where we would have had difficulty (even though he is not physically with me during those periods). Its odd to me that my emotional state is much more fragile AFTER he moved away than BEFORE. Perhaps at the time I was so engrossed in making it through every minute, every hour, every day, that I never stopped to feel those things. I learned to block them out for the sake of keeping the train on the rails. My own issues would be for "later".
Thankfully things sound much back to "normal" for Tyler. He had a dentist appointment today which he did very well for also. I'm so happy about that. Now I just have to deal with my own "later".
"Later"
To close my eyes
I cease to feel
And tell myself
Forget what's real
Ignore the fears
Suppress the mess
Create a truth
Without the stress
Eyes stay open
Mind still races
Thinks of dangers
Risky places
Have to manage
Push for greater
My own struggle
Waits for later
Later is safe
Kept far away
Later pretends
Won't see the day
But later waits
And grows older
Revenge it seeks
Hand is colder
When later's now
It hits you hard
Down to your knees
Until you're scarred
Take this advice
And feel your pain
Don't put it off
To feel again
Be well and God bless. Tom
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