My sleep pattern…interrupted, inadequate and yes filled with dreams of not caregiving. My days are not my own, they belong to them. Who is them you aske? Well if you have to ask you haven’t been affected; my loved one and ALS, that’s who own my days.
Yes, I miss and grieve who I was and my many plans for myself and us. However, and I feel this to my core, I would not change places with anyone…except with you. You don’t deserve this, we don’t deserve this.
Moments of despondency, I see them in your eyes. I also see them in the mirror. They pass, but like the surface of a flowing river, it belies the turbulence below; beautiful on the surface. No one understands unless they themselves wade into these deep waters.
I don’t want to caregiver today, I’m exhausted, but I do. I’m emotionally spent, my soul is battered and bruised, but I’m here. I’m afraid, so are you. We see it in each others eyes, blinking that fear away…for each other.
I don’ want to caregiver today or any day! My body screams this. But I do, “I Do”.
I do because you are my:
Spouse
Child
Sibling
Parent
Family
Friend
I don’ want to caregiver today, yet I do because…I love you.
Juan Reyes
TJO
ALS TEXAS DAD 
Life isn’t fair, but in my opinion every single day is a gift and if you choose to wallow in sadness then that’s your choice. Caregiving is a hard job but at the end of the day anybody with a shred of humility should be happy to care for their loved one. Bitching and moaning about it doesn’t help anybody.
LikeLike
Not the intent at all. I’m a pALS, simply sharing the harsh reality of caregivers, a true testament of love.
LikeLike
You said it well! This. This. This.
I am so honored to have been my husband’s. I would so trade places if I could have.
LikeLike
I’m sorry I honestly shouldn’t have commented. I appreciate your perspective
-a fellow pALS
LikeLike
Please don’t apologize, it’s hard enough
LikeLike
Sorry, hit enter by mistake. But there’s no need to say sorry. I wish you well.
LikeLike