THURSDAY THOUGHTS: CAREGIVING

I've been on the other side of caregiving for about 7 years now. I admit, there's a little residue, but as weird as the pandemic was, it gave me a minute—an odd gift of time—to quietly reflect, create, reminisce, dust off, and reset. 

I've noticed how much more I adore peace, pleasant people, laughter, and harmonious circumstances. Stress (although I hear there’s a good variety), is not my friend. I've also noticed, however, that I'm considerably more direct---not rude or mean-spirited, mind you. That's something I was never allowed to be. I'm just less inclined to second-guess, dismiss, or ignore what I see, or see through, nor do I have the will or energy to entertain pointless arguments, or drama.

My heart still goes out to family caregivers, and health care providers. While the players may be different, the stories, reflections, issues, concerns, and gripes are quite similar. The situations they face and share, daily, are thought-provoking, reminders, and even triggers. My parting words to every caregiver I’ve randomly, yet seemingly divinely met, over the years, have always been, “Please take care of yourself, and don’t take anything personally.”

In my experience, neither the illness, uncertainty, nor daily tasks, were ever as troublesome as the handful of meddling micromanagers who, perhaps without even knowing, made things more difficult. There were people who endeavored to insert themselves, their ideas, supposed rights, and unsolicited, unprofessional opinions, not in helpful ways, but in ways that often required damage control. The rumors were frequent, as they are apt to be, when people aren’t privy to the information they want, or  think they should have. 

Sometimes, what calls itself concern, can be oppressive, antagonistic, destructive, repellent, and just flat-out nosiness.

FYI: If you're not, nor have ever been in the trenches, never think you can just phone in, or show up, and tell the soldiers how to fight, how to feel, or how to navigate the battlefield. In caregiving situations, the enemy is the illness or infirmity. Unfortunately, some people haphazardly plot against, and aim their weapons—be they words or deeds— at the caregivers.

There’s nothing like long-term sickness, rehabilitation stays, or death, to reveal people's actual roles, motives, statuses, involvement, and positions in the lives of others. Some people have no idea that they’ve been compartmentalized. Conversations have been had. The relationship, clout, and rights they think they have, only exist in their own minds. 

I'm pretty sure I've said it before: Caregivers can be some of the strongest, most conscientious, patient, and dedicated people. They can also be the most criticized, questioned, demonized, burdened, and accused. They've taken on the task of managing the daily physical, and even financial well-being of someone else, but not everyone agrees, approves, nor understands how or why. The murmuring, questioning, and speculation, can really get out of hand, often making caregivers have to be hyper vigilant, and protective. They shouldn’t have to divert energy and attention to the demands of the able-bodied acquaintances of the sick person. 

Mind you, some of the very people who have issues with, and create problems for the caregiver, would never dream of taking on the assignment themselves. 

Being in the mix of a caregiving situation, isn’t purely performative or cosmetic. Caregiving isn’t a photo op. It isn’t content for the ‘gram. It’s not glamorous. It’s not a show. One is either committed, or not (and, by the way, the insensitivity of posting pictures of vulnerable people on social media, is as vile and boneheaded as it gets).

A person’s illness can bring out the absolute best, or the shockingly worst in people, who don't always keep in mind that caregivers need care, too, and ailing people still have rights to dignity, privacy, and making their own decisions.

Caregivers take on so much more than many think. It's a mammoth 24/7 task, that begs for pure motivation, helping hands, empathy, discretion, and patience, not disgruntled, nosy, useless gossips. 

Caregivers have to know who people truly are. There’s no room for busybodies. Clarity, concerning the strength and nature of your relationships, should be established and sure. You cannot be vague, delusional, or arrogant about who you are in the lives of others. You shouldn't have to defend your commitment. You can’t just think you have a prominent place, open-door policy, or an entitled role in the decision making. That kind of leeway has to be granted, or is a result of long-established trust and consistency.

Perhaps you do have a bazillion stories to tell about an ailing, recovering, or aging person. Perhaps you think you have a stake in their lives, but:

ARE, or were you really friends? 

ARE you family, or like family? 

ARE your feelings for one another, mutual? 

ARE you truly special? 

CAN you just show up, overstep boundaries, and ignore protocols at hospitals and facilities, or do the rules apply to you, too? 

IS your relationship confirmed, or well known? 

ARE you, or should you be privy, or entitled to intimate, medical, or legal details? If you don’t know what’s going on, why don’t you? 

ARE you being kept in the dark, or have your words and actions determined that in the dark is precisely where you need to be?

Are you an emergency contact person, (or the person, always making everything about yourself, and causing a scene, for which emergency services need to be contacted)? SHOULD you get the first call, or be on speed dial?

Will you be asked, tasked, or willing to sign your name, change or cancel your plans, leave your job, relocate, or take personal responsibility?

HAVE you been laboring under the misapprehension that your contributions, feelings, or opinions have weight, or are you just one among many, with no more access, knowledge, or input than anyone else?

Does the ailing person's narrative, of your history with them, jive with yours?

Is, or has your relationship been overwhelmingly one-sided? 

IS he or she your main man, best friend, ride or die, ace-boon-coon, heart, play mother, father, sister, or brother?

Perhaps you DO “go way back”. What value or relevance does that have now—today? When is the last time there was any significant engagement? What does history afford you, other than memories? Are those memories as precious, relevant, or serious to them, as they are to you?

When your name comes up in conversation, do they claim, praise, prioritize, dismiss, or even know or  remember you? 

Has your relationship been close, temporary, purely professional, performative, or wholly transactional? 

What is, or has your family member, friend, or significant other, been communicating to his or her trusted friends about YOU? Never mind who you think you are. To the responsible party in their lives—who they’ve personally designated to handle their affairs—are you:

A stranger?

Merely an associate?

Just a co-worker?

Barely an acquaintance?

Insignificant?

Inconsistent?

A groupie?

A nuisance?

A freeloader?

Fair-weather?

It’s good to know the answers, before your family member, loved one, or friend is vulnerable, incapacitated, hospitalized, or deceased. It's good to know where you stand, before someone, other than you, is chosen, and legally authorized to call the shots on their behalf. 

Who you think you are, and what role you think you should play, means little to nothing to someone who’s been soberly selected, tasked, and is committed to carrying out a person’s explicit, even notarized wishes. 

Authority and access aren’t rights. They’re delegated, and can be quickly revoked. Responsibility, however, is more serious. There’s liability involved where the buck stops, and there’s no getting around it, no matter who (or how close) you believe you are.

A good way to solidify your relationship, is to turn your love, care, concern, thoughts, and prayers into action, presence, and genuine interest, when a person is of sound mind, and in good health. Show how much you care when it counts, not when there’s nothing you can do except sit and stare.

#caregiving

#healthcare

#familysupport

#handleyourbusiness

#getyouraffairsinorder

#relationships

#putitinwriting

#POA

#palliativecare

#hospicecare