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.

     

Pools

     One aunt and uncle had a couple of kids and a pool. It was a large above-the-ground in a square shape with a deck. The pool itself was surrounded by long timbers on the outside. I've never seen one like it before or since but I suppose other folks probably had one like it.

     They also had beds of flowers surrounded the house. I liked the pansies especially. "They seemed to be such happy flowers"-- a phrase I must have heard somewhere. I didn't think that then but it's what comes to mind now.

     Their downstairs bathroom also had fish wallpaper and a couple of fish figures on the walls.

     Later, the pool was traded out for an in-ground of the same size, shape, and depth. I preferred the old pool but never said so. Aunt and uncle seemed rather proud of the new one so I said nothing.

     I learned how to swim in a big army pool in the southern part of North Carolina. We'd gone visiting and a day at the base was a treat! I was never afraid of the water that I remember. I always could float well and swimming involved adding arm and leg movements to what I could already do.

     I was exposed to a pool at a Y during gym class in elementary school. We were bused there. I hated that. The locker rooms were not private enough. The kids were too loud. The instructor decided that I needed to learn how to breathe after every stroke of the front crawl rather than after every five or six stroked when I needed to. Because of that, I was put into the "beginner" swimmer class instead of into the more advanced class where my other classmates went and where I truly belonged. I was overly quiet and didn't advocate for myself then. Loud tears at the least, or a screaming tantrum may have gotten my message across better than my whispered short protest. My swimming did not improve during that class. I already knew how to do all sorts of things in the water contrary to what the Y staff thought. 

     Dad preferred apartment living to renting part or all of a house. [Later, he preferred owning a condo]. One of the apartments had a pool in the back. We had lots of fun there in the summer. Once my mother refused to let me take a bathing suit along. I don't know why. Dad allowed me to swim in my clothing [blue laws meant that swimsuits could not be purchased on Sundays] which was then washed and dried before I went back to my mother's. 

     At the apartment pool, I swam, floated, jumped or dove off the board, swam underwater, and perfected my side strokes. [I can swim on either side equally well]. I also learned to do headstands in the water. When not in the pool, we played Rummy 500. 

     Dad saved a little boy from drowning in the shallow section of the pool once. Even the lifeguard did not see that the toddler was in trouble. I learned that choking can be very quiet.

     Dad's days enjoying pools, lakes, and the ocean are over. His card-playing is over now too. When asked if he wanted to play Rummy 500, he shook his head and in a rare act of vulnerability acknowledged that the game would be too difficult for him now.

     Dad admitted recently to no longer being able to "keep up." 

     Dementia sucks.

                    sapphoq on life

First Grade

     I was in first grade when Dad showed me some Mexican jumping beans. "There's a small worm inside," he said. We also experimented with magnets. He explained about the north and south pole. There were little magnets and one larger one that had a red handle. There was a cellophane-like "fish" that would rise up from the counter as you stroked it, "face" first to tale. And a white furry critter that did the same. There was also fun with balloons. "Static electricity," he told me as we rubbed them on our pants legs and then stuck them to the wall. We also made static by scuffing across the rug as we walked.

     I went outside once to play with some neighborhood kids. I didn't know them well. They started fighting with acorns. They flung them at each other across the driveway. I didn't like that. I was afraid of getting hurt by the sharp acorn points. So I went back inside.

     Dad has been forgetting more and more about the old stuff. He struggles to recall how old he is. He no longer knows the town he lives in. His brain is stumbling over newer memories. He remembers things from four days back [usually, after a fashion] but not three days back. And certainly not what he had for breakfast.

     Dad's veins in his hands are shriveling. His bones are very prominent, almost skeletal. Even his coloring is off. What used to be a rich olive complexion is now rancid.

     Some days he is aware that he is dying. On other days, I find him planning his escape into a new job, new apartment, old relationship. He can be quite adamant about some land that he thinks he still owns [which was sold off years ago] which he thinks will yield him about three or four thousand dollars to start over. During one of my visits last week, he complained to me vigorously that he had wasted his time by signing up to live [in the adult home]. Today, he was content that a relative had paid him a surprise visit on Friday [but he denied having the visitor return on Saturday].

     A staffer had stopped in today with two little ones in tow. Dad was delighted to see them-- he loves babies-- but they were not delighted to see any of the old folks there. The older one who I took to be around pre-school age hid behind her mother's legs and insisted that she wanted to go say hello to the people in the kitchen only. The toddler demanded carrying and turned her face away from Dad and his housemates.

     Dad insisted upon walking me out. He doesn't walk so much as stagger around. With me holding his hand and a staffer spotting him from behind, he managed an awkward lurch to the front door. He is receiving hospice now. Death is at the back door quietly waiting for him to be done with life. I will miss him forever after he dies.

     ~ sapphoq on life