I'm Coming Out
In 1980, Diana Ross released a song entitled, "I'm Coming Out." With it's disco, funk instrumentation, coupled with its celebratory lyrics declaring what she wanted to reveal to the world, the song became wildly popular on the charts. Hearing the often sampled chorus on commercials and in movies has always made me smile, hold my arms wide like Diana, dance around and happily belt out the lyrics right along with her.
However, there are times in life when one must "come out" and it's not always a joyous occasion. Nevertheless, sometimes it is only in the very act of revealing, sharing publicly, that one can find or regain power and purpose. So, I'm coming out... While I am a Social Entrepreneur & CEO of Kandice Jacobs Creations, Incorporated, God in His infinite wisdom has decided that I am capable of donning yet another hat, that of CCO -- Chief Caregiving Officer. Yes, I am now one of 43.5 million women/men around the US, (according to AARP 2016 statistics), who are caring for a loved one with a chronic, life-limiting or terminal illness.
My father was diagnosed last October with Alzheimer's disease. While each day is a blessing, life as my mother and I know it has changed; and, it will continue to do so. This has become our sobering reality. As much as is humanly possible, I believe I have accepted this new reality. A major part of this acceptance means acknowledging the loss of the former, more ideal image of what I envisioned the latter years of my parents' life together being and how I envisioned spending that time with them. I must instead acknowledge the less than ideal and speak the words:
"My father has Alzheimer's disease."
I have begun sharing it with some one-on-one over the past months, but I share it this way now, today, because I have felt God moving upon my heart to do so for quite a while. Why go public? What is the purpose in doing so? There is a stigma attached to this disease, as with many other physical or mental illnesses. Particularly, within the African-American community, we tend to be very hush-hush about things which do not even need to be shrouded in secrecy. We too oftentimes are crushed beneath the weight of the make-believe and highly unrealistic mantle of strength. Sometimes we as caregivers are sworn to secrecy by our loved ones who have not come to terms with their own loss of good health and dream of how the latter years of their life were supposed to be lived.
Alzheimer's disease is a degenerative neurological disorder, ultimately effecting the balance of all bodily functions -- language skills; memory; cognition (i.e., the ability to make sound judgments, reason or problem-solve at optimal capacity); personality and emotions; the ability to perform every day, formerly routine tasks; sensory ability; balance and mobility, etc. As a result, many Alzheimer's patients feel like they are "going crazy," like they are "losing their minds." The sad reality is that while most certainly they are not crazy, their mind (i.e., their brain) is betraying them in the worst way imaginable.
Not wanting to upset or further frustrate one's loved one -- who feels so unable to control what is occurring cognitively, emotionally and physically -- caregivers often acquiesce in regard to allowing them to control the narrative -- the telling of their deeply personal story. Other times, as a caregiver, you feel the need to shield your loved ones from the insensitivity of those who do not think before they speak. We all know these types. Everyone in-fact knows who they are; and, I would bet that right now -- as you are reading this -- someone who fits this description is coming to mind. We often nonchalantly say, "Well, that's just [so-and-so]." This is the normal modus operandi, but when you think about your loved one being their fodder, all bets are off! To avoid such unfortunate exchanges, in which you don't know if you can be trusted to overlook it, you keep your personal family business to yourself and whisper in corners to the trusted few.
No matter the good-intentions, I have recently come to the personal conclusion though that keeping such a secret forever is virtually impossible. As your loved one's disease progresses, it could also do more harm than good to his/her reputation. I have had to accept that I can no more entirely protect my father from the insensitive, uncompassionate, purely nosy element of society than he could entirely protect me from all the cruelties of this world over the years. The roles have now reversed, and I must embrace that powerlessness also and simply "pray without ceasing," be as informed about this illness as I possibly can, and love him with every breath that he takes -- as he has done for me for the past 38 years.
I have learned that secrecy only gives strength to the stigma and sense of shame.
"Shame over what?" I have repeatedly thought for months.
Although my father understandably struggles with the realities of the degenerative nature of this disease and the unavoidable why(s), I know he has nothing of which to be ashamed. It is hard to imagine how an illness can be a blessing. However, I learned early in life as a child with chronic asthma -- getting weekly allergy shots, constantly camped out at the doctor's office or at Wolfson Children's Hospital (my annual vacation home) -- that if you are willing to look, blessings abound even in the most trying of circumstances and the darkest of spaces in our lives. I learned early to value life, to take the time to be kind to everyone -- because you have no idea what another human-being may be living with -- and, I gained first-hand knowledge that we are stronger and more powerful than we know.
I had no control over my physical body and the ability to breathe at times, but I learned not to fight it -- to not tense up, to remain calm and just talk to God, to be mentally tough, to hold on until I could breathe normally once again. In those moments I was learning compassion for others, patience with life and the things over which I have no control, and how to trust God for the strength I need. I needed this training ground for this present season in my life as a CCO (Chief Caregiving Officer). The responsibility is great -- downright overwhelming at times. The pay and hours are awful! Still, there is no place I would rather be.
Although he is a humble man who simply loves his family and feels he has done what he was supposed to do, I feel I owe a great debt to my father. He and my mother are the reason why I am who I am today -- glory be to God, a person who I actually really like. When they weren't giving me (and my siblings) their first, they were giving me (us) their last. So no, my father has nothing of which to be ashamed. Therefore, Deuteronomy 5:16 is quite easily my mantra, "Honor your father and your mother, as the LORD your God commanded you, that your days may be long, and that it may go well with you in the land that the LORD your God is giving you." Caring for my father now is one of the greatest privileges of my life.
Still, I do not wish to paint a picture of idealism or untruth. Every day is not easy, but it is worth it -- my father is worth it. Sometimes, when he doesn't know it, I sit and I watch him. I'm taking mental pictures of him in these isolated moments, encapsulating precious memories, taking snapshots of the man I adore. I watch him, sitting in his office with a record blaring, listening as he happily sings off-key to Donnie Hathaway, Marvin Gaye or Earth, Wind & Fire. In that moment, I am happy because he is so joyous. He closes his eyes, crooning, likely being transported back through time to the moment he first experienced those lyrics. I smile from my hidden position, tears filling my eyes, wishing he and I could stop time and just live in this moment for a while longer. Every time he makes one of his notoriously witty come-backs, and he fills the room with riotous laughter, I find myself on the verge of happy tears once again because it is a glimpse of the man I have known and loved all these years.
In these moments, I am reminded that although my father has Alzheimer's disease, the disease does not define him. I am reminded in these moments of the beautiful soul still existing on the inside, the rich tapestry of life he has lived. My father, above all else, does not want to be pitied. While the disease is progressive, there are still things my father can do; and, it is important that he be given the opportunity to do those things. The feeling of being useful, making a contribution, is vital to every human-being's self-concept thus aiding in one's self-worth. I am reminded that as all-encompassing as this disease is, how devastating it is -- utterly heinous in nature, forcing me and my mother to bear witness to its waste -- my father is still in there. So, I can cope. I can remain calm, close my eyes when I need to steady myself, talk to God and hold on until I can breathe normally again.
I am clear God is calling me to be a voice of influence as a caregiver, as a resource of help to others who feel they are drowning before the wide-open eyes of numerous on-lookers. Therefore today -- finally -- I have decided to stop resisting and answer the call. Armed with my father's blessing,