Hubbie here. Pauline started something new lately that struck a chord with me. In her writings she has started noting the difference in speaking to Lewy and in speaking to her Daddy. This is a very important distinction. Pauline has received comments from some of you about how LBD stole your mother, or husband or wife. But they have not been stolen. They are still there. They are inside. They are just asleep or trapped or maybe just too tired to fight their way out. Sometimes they wake up and speak to us for a while; let us know they are still alive. But mostly they sleep. It’s tough to fight Lewy. He is one tough son of a bitch. And, truth is, he just trying to take you into the late rounds and wear you down. He’s Frazier and not too many of us are Ali.
My Dad did not have LBD. He had a different curse that vibrated his muscles 24/7 and basically burned his body out. As the disease progressed he lost the ability to speak. He lost the ability to do pretty much anything. But even at that point he was still alive inside. He was still there. One of the last times I was “alone” with him was in the ER at the local hospital.
It’s funny but now I can’t even remember the event that caused my mother to call and inform me that I needed to help get Dad to the emergency room. Mom is not one to cry wolf so I came. Around 1 AM he was in a stretcher in the local hospital emergency ward. We went thru the standard procedures and as such a male nurse came in to install a catheter. For the two of you who don’t know, this involves shoving a quarter inch diameter plastic tube all the way down the penis of a male patient. It is not a pleasant experience for the receiver, the giver, or the observer. Daddy held my hand while the nurse worked. I stared into his eyes and he looked deep into mine. No words were spoken.
“This really sucks, don’t it Dad.”
“Yeah. Sorry you have to put up with this.”
“Hey. I owe ya a couple.”
So if you have somebody that is being pulled into the light, hang on to them. Carol Anne made it back. Maybe your person can too. At least once in a while. Watch for it. You don’t want to miss it.
John Prine, as is often the case, said it best in Hello In There.
I’d love to leave you a copy but the RIAA is everywhere. Tell you what, I’ll hum the melody in the background as you read the words.
We had an apartment in the city,
Me and Loretta liked living there.
Well, it'd been years since the kids had grown,
A life of their own left us alone.
John and Linda live in Omaha,
And Joe is somewhere on the road.
We lost Davy in the Korean war,
And I still don't know what for,
don't matter anymore.
Ya' know that old trees just grow stronger,
And old rivers grow wilder ev'ry day.
Old people just grow lonesome
Waiting for someone to say,
"Hello in there, hello."
Me and Loretta, we don't talk much more,
She sits and stares through the back door screen.
And all the news just repeats itself
Like some forgotten dream that we've both seen.
Someday I'll go and call up Rudy,
We worked together at the factory.
But what could I say if he asks "What's new?"
"Nothing, what's with you?
Nothing much to do."
Ya' know that old trees just grow stronger,
And old rivers grow wilder ev'ry day.
Old people just grow lonesome
Waiting for someone to say,
"Hello in there, hello."
So if you're walking down the street sometime
And spot some hollow ancient eyes,
Please don't just pass 'em by and stare
As if you didn't care, say,
"Hello in there, hello."
3 comments:
oldfriend said...
well done, Hubbie
Anonymous said...
Thanks.
That one was a bit tough to write but I do love the distinction Pauline has made. It really helps understand and deal with the situation.
Thanks for reading.
Hubbie
Anonymous said...
Thank you for your writings - I have no doubt that I am in the same situation with my mother but I have not had the benefit of a probable diagnosis. Wondering has been the worst part though I understand that the treatment would be the same regardless of assigning an official name to her progressive problem (Sinemet, Aricept & Namenda). The visuo/spatial component problem is now the hardest to deal with, really - as you illustrated with 'put your hands here (on the walker)', yet the hands go elsewhere. My mother can read a greeting card but can not find the food on her plate. The constant sleepiness is increasing also. Thank you again for sharing your ongoing observations.