We have approached what is quite a horrid phase of PSP. While physically completely debilitated, basically unable to move other than to swallow, eyes forced always shut, Mom still seems to be mentally aware. She's now officially a prisoner in her failing body.
I am horrified. I'm not sure at this point if I should be wishing for a hasty end to this, and I'm ashamed of myself for even considering it. The thing is, she seems very comfortable. Her hospice care is wonderful; she gets physical therapy twice a week and a massage bi-weekly. She is eating, albeit pureed food. She responds. She sometimes smiles a little.
In fact, she's lost none of her marvelous sense of humor. We actually had a great time during my visit last week, giggling like crazy. See, two of the gents at the home had a little shouting match, all up in each other's faces - typical strutting male stuff. The entire common area could hear their salvos:
"You talkin' to me?"
"Yah, you. I don't like the way you look."
"Well, I'm sick of your shit, too."
"Get up! I'll show you what for!"
Never mind that one fellow was sitting in a chair, strapped to an oxygen tank, and the other wobbling precariously behind a walker. Nope. They were ready to duke it out.
So, a fun day. Also, Mom may have difficulty responding, except when you tell her you love her. Then the answer comes, clear as a bell: "I love you, too, sweetheart."
I am horrified. I'm not sure at this point if I should be wishing for a hasty end to this, and I'm ashamed of myself for even considering it. The thing is, she seems very comfortable. Her hospice care is wonderful; she gets physical therapy twice a week and a massage bi-weekly. She is eating, albeit pureed food. She responds. She sometimes smiles a little.
In fact, she's lost none of her marvelous sense of humor. We actually had a great time during my visit last week, giggling like crazy. See, two of the gents at the home had a little shouting match, all up in each other's faces - typical strutting male stuff. The entire common area could hear their salvos:
"You talkin' to me?"
"Yah, you. I don't like the way you look."
"Well, I'm sick of your shit, too."
"Get up! I'll show you what for!"
Never mind that one fellow was sitting in a chair, strapped to an oxygen tank, and the other wobbling precariously behind a walker. Nope. They were ready to duke it out.
So, a fun day. Also, Mom may have difficulty responding, except when you tell her you love her. Then the answer comes, clear as a bell: "I love you, too, sweetheart."
Stacy, I ran across your blog when reseaching PSP. My mother was diagnosed Aug. 2010, and she's probably in stage 3. I've read every blog of yours a couple of times now. I've told my sister about it, but she's not like me and wants to cross bridges as we come to them. I on the other hand, need to know what we're in for. I feel your pain. There is so much guilt right now. Guilt for thinking thoughts like you, about a hasty end. Guilt for not spending time with her. Guilt for not spending time with my husband and kids. Guilt for working.. the list goes on. PSP is a cruel disease and effects so many. Keep writing. I'll keep reading.
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