Caregiving Is A Marathon Not A Sprint

a few weeks ago i went home to native chicago after learning my 79 year-old father has lung cancer. he also shows early signs of dementia, as well as being challenged by depression & hypertension. when i arrived at the bernard mitchell hospital on the campus of the storied university of chicago in tony hyde park i was stunned at his dramatic weight loss. dad is built like a penguin (though we jokingly called him a weeble) yet laying in bed he looked like half a person. he shook my hand & told me he was glad to see me, struggling to speak.

the room was eerily quiet. perhaps because it was late evening, perhaps because his former roommate was no longer there, or perhaps because god wanted him to get some much needed rest. there was a tray of uneaten food to his side, a few nurses tending to other patients across the way & the popular game show wheel on fortune was on tv. my dad seemed oblivious to it all. he just layed there, on his left side, sort of mumbling to himself. he was not the independent, prideful, robust man i knew for the 48 years god's graced me with life.

i'd never visited my father in a hospital before. as such, i didn't know what to say to him. i tried to get some information about his condition & prognosis from his nurse, an attractive & charming sistah, before entering his room. i felt like i needed to be armed with something tangible because i was anticipating a battle of intellectual resistance. my father, like many black men of his generation, has always treated his emotional, mental & physical health as an afterthought. he was in the business of doing, not feeling. i once told him the most athletic thing he ever did was jump to conclusions. he didn't think it was funny at the time. i did. wateva.

attempting to appear like the birth of the cool was my initial strategy. not that i'm prone to displaying irrational outbursts when loved ones are ill mind you, yet something in my spirit was calm, quiet & serene. god's grace was with me. yet when he told me president-elect obama was our new supreme court justice & hilary clinton was following (w/ her traveling pants) suit i didn't know how to react. my first thought was to diffuse his dementia with sarcasm, but i didn't think it was appropriate. a small sign of maturity had surfaced: his needs were more important than me trying to extract some attention i felt he never gave me as a child.

to be honest, i didn't want my dad to see how scared i was. the unknown can be terrifying for almost anyone. so many questions permeated my consciousness: would he be hospitalized indefinitely? will our family transition him to an assistant living program or nursing home? will he return to the solitary isolation of his apartment? is he headed for chemotherapy, radiation and/or surgery? will the dementia permanently negate his short-term memory & long-term plans for breaking the casinos? was he going to die prematurely from cancer like my cousin joey at age 45 just four short years ago?

i wanted to stop thinking but i couldn't find the off switch...

witnessing the vulnerability of my dad for the first time in my life helped me fully appreciate accepting my own. american-born black men are socialized & conditioned to always appear - by any means necessary - aggressive, dominating, in control, masculine, powerful, strong, tough, virile, etc. the noted african-american poet paul laurence dunbar called it the mask of silent unity. filmmaker byron hurt, in his critically acclaimed indie doc, beyond beats & rhymes: a hip hop head weighs in on manhood in black culture, says, "black men live in this box which defines our manhood...when we live outside of this box we get called a bitch, faggot, punk, soft, weak...nobody wants to be called those things." comedian dave chappelle brilliantly asserted in a season two sketch of his self-titled comedy central show, "this is when keeping it real goes wrong."

when my dad was released from the hospital he was visibly depressed. he layed in bed all day, tossing & turning to get some relief on one side of his deteriorating frame. he refused to take off the hospital gown at home, he wouldn't eat any of the food delivered weekly by the meals on wheels program, take a (much needed) bath, or turn on the lights of his one-bedroom hyde park apartment. he seemed more like a prisoner than a person. he had a homemaker, nurse, physical therapist & social worker to assist him, yet he was resistant at every opportunity. i felt frightened, inadequate & wanted to run like hell: but where to, how far, what for & from whom? i prayed & asked god to reveal his will for me in the moment.

afternoons i'd come by & just sit with him. his bedroom looked like sanford & son. talk radio was on & his tv had colorful zig zag lines running amok. it was obvious he was not emotionally available so i stopped trying to engage him. when you're sick & folks ask a lot of questions, you don't like feeling interrogated. well, i don't ok? at one point he said to me, "mark, i want you to rescue me from the phone & the door." rescue me? my father wanted his homosexual son to rescue him? clearly he was crying for help because he didn't feel safe. my heart was deeply touched in a place usually reserved for men with a smile like morris chestnut. but i digress.

my dad lives at the very end of the 17th floor in his building. the long ass walk gives one enough time to reflect on all kinda shit. anyhoo, on one of the more bitterly cold chicago afternoons my dad came to the door, which was slightly ajar, though accompanied by a long, silver doorjack behind the knob. he insisted the door was open. it wasn't but i was not about to argue my point with him. he proceeded to sit on the lone piece of furniture in his pitch black living room, a chair in front of the windows. there were a pair of large binoculars on the window sill & he told me to use them whenever i felt like it. he said, " i'd give you a history of the city but i'm too tired. i've done everything the doctors & nurses asked me to do i just want to come home & get some rest & i'll be fine cause i got everything i need right here."

just the same he told me his building, at one point, was, unbeknownst to most folks, the tallest building in the city of chicago. this was in the mid-50's, just before rosa parks & emmitt till inspired the civil rights movement. looking out at the prudential building & sears tower this hidden fact was, of course, for me, difficult, if not impossible, to imagine. nonetheless i was grateful for the moment. he was, now, the dad i always longed for & wanted to have, a man who would take time to talk to me & teach me what was important in life: having a sense of belonging, knowing your place in history, sharing a piece of your soul when no one is looking.

the day before i flew back to harlem usa there was a peace beyond understanding in my dad's bedroom. if only i could bottle that feeling forever. i stayed with him for about an hour & left quietly to watch the bulls game with my aunt maxine, who lives on the same floor as my mother. i believe, self-centeredly, this arrangement was made because god knows how lazy i am. as i tiptoed out his room he thanked me for coming by & said he appreciated me trying to help him. what more can a son want from his ailing dad?

while walking out of his building i remembered the party for elders in the community room on the first floor. i peeked in for a moment, not really expecting to see anyone i knew, but curious about the food being served. one of the volunteers from the party's host, a non-profit for the elderly organization (their name escapes me) asked me if my dad received a plate. i told her he's not eating, he's really depressed & he's trying to come to terms with his life-challenging illness. she said she's worked with cancer patients for years. she said illness can bring families closer together or drive families further apart. but she said family members who desire to tend to the needs of their loved ones should understand caregiving is a marathon not a sprint. god speaks through people & she comforted me at the divine time.

my new role as caregiver is challenging & rewarding. as soon as i got home i did some research with cancercare, a national nonprofit organization providing free, professional support services to anyone affected by cancer: http://www.cancercare.org/. their chelsea headquarters are in the same building where i receive aids-related services for my life-challenging illness - an unexpected vehicle for us to bond. i've also enlisted the services of a few friends in new york who live with cancer & asked them to call my dad periodically for emotional support. to my surprise & delight, my dad agreed to take their calls, just not on the same day because "i don't want to feel anymore overwhelmed."

home is where the heart is. indeed.

Daddy Has Cancer

daddy has cancer. those words appeared on my text last thursday pm, courtesy of my youngest sistah tracey who was in the university of chicago hospital tending to my father's debilitating health. initially i was shocked. stunned. in complete dis-belief bcuz it was happening now, for real, to my father, to our family, to me. felt like the weight of the world, his illness, the uncertainty of it all, other family member's premature demise, my emotional instability were on my suddenly frail shoulders. perhaps grandma jefferson was right, "the lord works in mysterious ways,"she used to always say, to no one in particular, though i suspect folks were listening.

at the time i was coming from a trusted friend's 16th year anniversary in recovery at a na mtg in spanish harlem. her family was present, folks carried the message of hope & freedom, food was abundant, the room was packed...my cup had runneth ova. i routinely check my messages after a mtg & received the ominous text. his doctor mentioned cancer was probable yet didn't know for sure so we had an inkling. still, when the word becomes official shit changes. as i walked home i felt anxious, frightened, insecure & sad. my body was in pain. darkness was the color of the wind as i tried to make sense of it all.

i started thinking about who to call, what to say, where to go & yet my body kept walking home in a steady pace. grandma jefferson used to also say, "let your conscience be your guide." spirit said it was safe to be alone with my fallibility & feelings. when i got home i cried. i wasn't angry with god or the doctor or my father: i just needed to cry. a friend once told me tears are liquid prayers. my intellect quickly took ova. worry is a lack of faith, i tried to assure myself. i can get thru this with sanity & serenity. but what the fuck am i supposed to do, now? i started to feel shame bcuz i only have $200 in my savings account & should be able, at 48 years of age, to have enough money in the bank for emergencies like this. my aunts jean, martha ann & maxine told me to save for a rainy day but i neva listened to anyone bcuz i wanted to do things my way.

the impending sorrow was seemingly unbearable. daddy has cancer. daddy has cancer. daddy has cancer. those three words fully permeated my consciousness like nothing in recent memory & i didn't have a reference point. you only get one father in this world. he was a decent hue-man being, good person, hard-working, law-abiding, tax-paying (well, after the irs handcuffed him) citizen. he doesn't deserve this. not cancer. not my father. not after all he's been through in almost 79 years in white america. yeah, i went there. always do. my father once told me america is a lie. he ain't lying...

we share the same perspective on america's ugly supremacist his-tory though he persists on reminding me i'm not black, i'm a a hue-man being. in fact, he cites barack hussein obama's recent historical presidential win as evidence stating, "one day we will no longer use the term black or white to identify ourselves in this country." this is the same man who predicted, in the spring of 2007, obama would win, because, "america is ready for change & hilary won't win bcuz she's white & she supported the war in iraq." at the time i thought he was crazy. typical knee-jerk reaction. his wisdom is appealing bcuz my mind opens to a world of endless possibilities.

in addition to the cancer diagnosis, he's showing early signs of alzheimer's & dementia. at one point, he thought one of his grand kids belonged to the jenifer hudson family. as if she doesn't have enough to deal with her damn self. getting him to adhere to treatment has been a religious experience by most accounts. my father hates doctors, hospitals & medicine. in fact, he resents being told what to do by anyone (!) who is younger and/or female. black male pride is alive & well in the tuggle household. unfortunately he's been dishonest, irrational & uncooperative as it relates to getting better. he thinks he can sleep his pain away. ironically, i think the same way at times, so my compassion & empathy for him is real yet we are now in a battle to save his life.

the hospital social worker suggests he consider accommodating a daily (five days, four hours) home attendant, going into a nursing home, or moving into "assisted living." if he accepted "assisted living," the pending institution would seize his pension benefits & leave him with a nominal monthly allowance. my father spends more time in nevada than las vegas: i don't think so. like a good little boy my father tells me & the medical staff he'll "do whatever they tell me to do," yet when he leaves the hospital he tells other family members a completely different story. it was suggested he see a nurse twice a week, in addition to receiving physical therapy. earlier this week he told the homemaker upon arrival to his apt to leave bcuz he "gets meals on wheels twice a week."

sigh.

at present he's being hospitalized thru the weekend. for that i'm greatly relieved. its not safe for him to be home alone & as my cousin lorraine aptly noted the burden of care shouldn't fall on my mother or tracey. he needs a colonoscopy, suffers irregular bowel movements, has acid reflux, inconsistent appetite, breathes heavy, hypertension, physical discomfort, arthritis & other ailments too numerous to document. i'm going home for a week to hopefully knock some sense into his stubborn skull. like many people with various health challenges, he is his worst enemy. i don't expect a medical miracle when i get home, but he is my father, i love him dearly & will try to make him smile. after all, laughter is god's universal pill.