Rauja

RAUJA


Watching my fathers’ daily decline has been difficult. Parkinson's disease demands courage beyond words. 

I used to get angry with my father when he'd ask me to button his pants or help him put on his vest, but we've moved far beyond that now.  Maltie, his home care aid from Trinidad, stepped into our lives just as my coping skills were spiraling out of control.  It took some adjusting on all our parts, but she has evolved into so much more than an aid.  She has become my confidant, my counselor and most recently, my comedic relief.

My father will tell you that she’s too bossy and constantly reprimands her for trying to help him.  Because the only guidance I have ever given her was "don't baby him" Maltie quickly adapted a tough, drill sergeant approach.  Watching them bicker is a lot like watching an episode of the Honeymooners.  Because of this, I now refer to my father as Ralph and Maltie as Alice.  My father, unable to grasp the name Maltie, calls her "Doggie" and Maltie, with her rich Trinidadian accent calls my father "Rauja" her pronunciation of his middle name ‘Roger’.  During these past few months I have been studying Malties accent and will often imitate her heavy-handed tones and island expressions.  This makes her laugh.  It makes Dad laugh too. 

Caring for the elderly is not an easy task.  Maltie performs her duties with dignity.  Despite her dominant demeanor, she never belittles him or allows him to feel sorry for himself. 

Because Dad takes an anti anxiety pill before going to bed, Medicare requires him to see a psychiatrist on a regular basis. Yesterday, on our way into see the "head shrink" at Greenwich Hospital; I stopped at the gift shop were they had a rack full of children’s costumes hanging just outside the entrance.  One in particular caught my eye.  A puffy pink and black polka dot lady bug costume complete with long black wings, a matching bonnet and antennas.  I picked it up, held it against Dad's frail frame and said "perfect!  Let's get it!"  Dad's eyes opened wide.  "You'll look great as a lady bug" I added.  "I don't know Shawnin”, added Maltie, “I really wanted him to be a laaamb." 

We continued on down the hallway, debating which would suit him better.  This was our way of warming him up before seeing the doctor.  Typically Dad will not talk to the psychiatrist; all he'll do is stare at his sneakers, drool, and when he's had enough, yawn.  The doctor informed me that there is an unspoken awareness among the elderly that the psychiatrist is often the one who will recommend they be placed in a nursing homes and therefore, most fear him and will resist any sort of help. 

Today’s visit was no different.  My father sat expressionless, slumped over in his chair. 
"How are things going Mr. Kennedy?" asked his doctor. 
No reply.
"Is there anything I can do to help you.  Anything at all?" prodded his doctor. 
Maltie and I looked at each other and shook our heads.

"Ralph’s going to be a lady bug for Halloween, isn't that right Alice" I declared.
"Yes, but I want him to be a laaamb" said Maltie.
Without hesitation, the doctor bent down as low as he could go in an attempt to make eye contact with my father and gently stated, “that sounds great Mr. Kennedy."

When my attempt at humor failed to stir a reaction in him I added, "Is it okay if he wears his costume now or should I make him wait until Halloween?" 

The doctor hesitated for just a moment before offering his professional opinion, “I think its okay if you start wearing it now Mr. Kennedy." 

With half a grin my father replied “good”. 

Eventually, Dad loosened up. After surrendering to being a lady bug what else did he have to lose.

"How are you feeling otherwise Mr. Kennedy?" 
"Okay" he sighed

The doctor went on to advocate Exelon and Aricept, two medications he believed would slow down the onset of Alzheimer’s or dementia.  Because my fathers’ future will most certainly include a wheelchair and a feeding tub, I’m not convinced that he wouldn’t be better off if his mental clarity deteriorated. 

Do you ever see anything that doesn't make sense?” The doctor continued.
Dad was quick to answer “NO.”

"Like what?" I asked. 

Sometimes people see scary things, things that don't make sense.

"I was in Jersey the other day" Dad admitted

"Jersey, why Jersey?” I questioned

The doctor leaned in and quietly told me, "they don't have any control over where they go.”

"Why didn't you take ME" Maltei asked
"Were you watching the Giants again?" I asked
"Why else would I be in Jersey" Dad said. 
"I thought you were going to take me to Florida" insisted Maltie

Once gain, the doctor leaned in, this time telling Maltie , “they don't have any control over where they go." 

"We're going to Florida don't you worry Doggie" Dad continued.
"As long as you don't get married" I reminded him
“I'm not getting married”
"Then why are you two always holding hands"
"We're not holding hands, she's helping me balance." 

"So, Mr. Kennedy, are you saying you have problems balancing”
Dad went on to admit that he was having problems with his balance and that it makes him feel unsure of himself and he didn’t like that.

"And I don't want the bag" Dad protested
”What bag?” asked the doctor.
“Oh, lord, father” Maltie whined, “not that again!”

Shortly after seeing his younger brother Frank with a colostomy bag, Dad developed an unrealistic frication on "The BAG" 

"You don't need the bag" challenged Maltie,  "you does pee pee all the time."

The doctor patiently tried to reassure him that not being able to urinate is cause for "the bag."

No reasoning seems to help.  Not from the urologist, his general practitioner, or from his psychiatrist. 

Out of utter frustration I asked, "What color bag do you want?" 
"Get him a red one" said Maltie
"No he doesn't like red"
"Okay, then get him a green one". 
"You can carry it around with you and everyone will admire how sharp you look with your bag" I told him.  "You can put your wallet and keys in it if you want to".  Dad will go nowhere without his wallet and keys.  If his pants don't have pockets he'll tuck them into his sock. 

When our group session was finally over Dad turned to me and said, "I like him, he's very GI."

We didn't get the ladybug costume as we exiting the hospital. 

"Stand up straight Rauja.  Come on, come on now man...you can walk to the car, don’t be getting all lazy on me."

For a man who was once a great high school athlete and then went on to complete over 100 marathons, the last at the age of 72, he accepts his circumstances with pride. 

I know his days of walking are limited so for now it is reassuring to watch him fight back with a slow, deliberate shuffle.

In the mist of the daily struggles we all endure as a result of his disease, we find humor.  And with that humor comes a remarkable gift.  A memory.  Today, it was the memory of a day we all went to the hospital and looked at Halloween costumes.  The day we defrauded the doctor by conning him into thinking we nuttier than most.

Perhaps we are.