Plan B

     The hospice social worker and I were sitting with my dad recently. Applications had to be filled out just in case. Just in case Dad doesn't die soon in his sleep. Just in case he needs to be moved to the hospice itself. [He is already receiving hospice services]. Just in case he gets worse.

     Lewy Body Dementia is different from Alzheimer's in that there is no staging with L.B.D. Any of the symptoms in LBD can occur at any time during the disease. [The symptoms of Alzheimer's are more clearly tied to stages]. As a layperson, I understand about as well as can be expected. As my father's adult child, there are days when I want to scream at the world in frustration.

     Getting someone from the V.A. to call me back about arrangements after Dad dies has been impossible so far. No one has called me back. Whether I am supposed to contact a funeral parlor after he dies or call the Veteran's Administration to come and pick up his corpse, there are certain things that I need to know. Things like this make me want to scream. Losing a parent is painful. Not knowing how things are supposed to work immediately after his death is irritating as all get out. Not being able to speak with a human being at the VA hospital is rage-inducing.

     My dad has the true pain. I recognize this. As difficult as it has been for me to bear witness to his struggles, my dad has lost pretty near everything to his form of dementia. He lost a marriage, a livelihood, money in the bank. He lost friends, his standing in the community where he lived for so many years, his ability to maneuver safely throughout his environment. Although logical thinking is difficult for him and at times impossible, he continues to demonstrate that he has desires, wishes, and dreams. These things have changed within the past fifteen years or so that he has had this thing, but he does have them.

     For a time, I did not recognize my father in the fog that his dementia intermittently brings. Now I do. Some parts of his personality have been warped or accentuated by his neurology. But my dad is very much "in there" still.

     Having once been confronted by the extreme focus on self that I had to have during the first several years after the motor vehicle accident which induced my traumatic brain injury, I had to confront the extreme focus on self that people in general with dementias-- and my dad in particular-- engage in as a survival mechanism. Mine mitigated somewhat. Although the t.b.i. literally changed some of my preferences, I still very clearly knew and do know who I am. Dad is not so fortunate. When dementia is non-reversible, the self is intensely threatened. Focusing on the self is a healthy and reasonable response when neurology goes amiss. I say that his neurology has gone haywire. I suspect that his brain is rotting. Dad says his brain is failing.

     My father is actively engaged in dying. As grief-stricken [and worn out] as I am, I continue to keep up front the idea that I am losing one person but my dad is losing everyone. When I was younger, he rescued me from a bad situation. I didn't suspect then that someday it would be my turn to rescue him. I cannot save the fractured relationships that exploded during his disease process. I can advocate for him to be as comfortable as possible during whatever life he has left. I hope to give him a "good" death.

     In the midst of the paperwork routine, the social worker indicated that Dad needs to know why this stuff was being done. "I don't want to tell him," I said. But then I did.

     "The hospice house is beautiful," I explained. "You will have your own bedroom, your own patio, and a private bathroom. And there are gardens too."

     Dad stared at me. I tried again.

     "It's a plan B. In case you get worse. It's much better than a nursing home."

     "You mean like at the end?" he questioned me. 

     "Yes."

     "Okay." And that was that.

     "Maybe you won't have to move," I continued. "But if you do in the future, this is something we have to set up now."

     "As long as the [present] house director comes to visit me, I agree to go." He smiled.

     Dad was happy at the thought of his own bathroom. He was not impressed by the promise that the cooks will make him whatever he wants to eat at any time.

     "Pasta fazul!" I said. 

     "You like pasta e fagioli?" the social worker asked.

     "I sure do," Dad told her.

     "And chili too," I added.

sapphoq on life says: You gotta have a Plan B. Period.