Oops - I Almost Forgot..

Last night I watched “The Boy Who’s Skin Fell Off” on PBS. It was about a fellow’s last four months on Earth, before succumbing to skin cancer - a by-product of 36 years of suffering with a condition known as EB.

I watched it twice. Once by myself and once with my husband, Clay. I woke up this morning with very swollen eyes from crying so hard. What a tragic and inspirational documentary. Johnny Kennedy, the sly-witted, philosophical hero of this story endured horrific pain, whilst his steadfast mother provided unwaivering care his entire life. Being privy to his last days made me grateful for the life my hubby and I share. Even with it’s challenges we feel blessed, especially after seeing “The Boy Who’s Skin Fell Off” and realizing just how challenging our lives could be.

The documentary also got me to thinking about how dependent Clay is on me.

If, for instance, I were to die in my sleep how would he get out of bed? We have no friends or family who drop by. Even if they did, the doors would be locked and Clay would not be able to get out of bed to open them. He’d be stuck in bed with a decomposing wife. Yuck!!! Now, he’d probably like to see me lose some weight, but not quite in that manner.

I realized that we needed a phone by his side of the bed so that he could at least call for help! When we got up this morning I put our hand-held phone there, but now have to figure out a way to make sure he can pull it to him in case his hands can’t grip and he drops it.

Also, what if I were to get in an accident while out doing errands? Who would get him out of his chair, into bed, out of bed, cook, etc? We’re new to this community and it is quite evident that we need more of a support system. These are just thoughts that caregivers have, I guess. Morbid, perhaps, but necessary. Maybe it’s time he got an electric wheelchair and a lift for the bed. Independence of any sort would be a good thing.

I keep telling him that I’m not going anywhere, but it’s always good to be prepared.