You didn’t expect to care for my every need, but here we are. Ever since ALS decided to infiltrate our life, you have been at my side when needed. Your daughter/son in law and your grandkids love it when you visit. ALS has made you acutely aware of your child’s mortality, and your impending grief; you have lost me, your heart knows, your mind hopes.
Now you reprise your roll; feeding me, bathing me, helping me after toileting, lifting and moving me. You cook my favorite meals, dote on me, hover and at times get on my nerves—it’s your love language.
No I don’t want a sip of water, no I don’t have to empty my catheter bag. Thank you but I don’t care for a snack, maybe later. No I’m not upset with you, you didn’t do anything. I’m just really frustrated and angry at my condition, now we both need tissues.
Can I have a sip of water, maybe a snack please. Can you fix my pillow, a little higher, that’s good. I changed my mind, can I go outside for a bit. Please stop bickering, you’re driving me nuts!
I cry, you cry, we cry, alone, together and then alone again. I know you’re suffering, witnessing my decline, but you show up. I see, out of the corner of my eye, your fear, your strength, the love for your child.
Just as I opened my eyes at birth and saw your faces, the first time my eyes could focus, I’m sure it brought me great joy. Now as my eyes fail to focus, I can barely make you out, but I know you are there.
Love you…Thank you.