As a caregiver, I learned that the greatest, most consistent, sincere, and meaningful help, came from people who had been caregivers themselves. They weren’t nosy, antagonist or meddlesome. They fully understood how tough the task could, and would be.
Hearing, “How can I help you help your father?” was a godsend. No ulterior motives; no agenda, just a heart to serve. Rev. James Wilson was a true servant, and consistent friend to my Dad. He just showed up.
Rest In Peace, and thank you, Sir.
Happy heavenly birthday, Dad.
One of the most valuable things I learned, as a caregiver, was to lower my expectations of others —not diss, dog, be mad at, or kick them to the curb, but to realize and accept that everyone, in an ailing person’s orbit, brings different skills, opinions, inhibitions, personalities, feelings, experiences, and sensibilities to the caregiver table. Some people will surprise you with their impeccable timing, and thoughtfulness. Understanding, however reluctant, has to be extended to others, or you'll forever be bitter over what you assumed they should be, or be willing and able to do, but they simply can't.
Caregiving forces you to truly see, and be honest about everyone, including yourself. The nature and strength of relationships are exposed like never before, in times of sickness and death. You HAVE to lay down all wishful thinking, rules, and delusions. What used to be, will change. What always has been, may not. WHY be all bent out of shape, because an unreliable person, who’s ALWAYS been unreliable, isn’t suddenly a pillar of promptness, credibility and confidence? Being realistic, is one of the stress-relievers in a caregiver’s arsenal.
Perhaps, sickness motivated YOU to act. It’s your family member, or friend. Stepping up was a no-brainer, but did you ever once examine yourself, and consider whether you had what it took to be a caregiver? There was no playbook to study. Did you even have a clue? Relationship alone said, “You’ve got this”. YOU said “yes”. It changed you, reordered your priorities, and sparked YOUR sense of urgency for the comfort, care, and wellbeing of your loved one. The mistake, is to dare think that kind of motivation instinctively happens to everyone. The disappointment originates from taking off running in your caregiver gear, and unlike that scene in Forrest Gump, there’s no huge crowd of supporters behind you. Some people disappear altogether. Others may seem to become detached, cold, distant, paralyzed—even angry and critical. It’s as if the illness or infirmity has inconvenienced, confused, and threatened THEM.
Concern comes in many forms, and it can be inconsistent. Take help when and where you can get it, understanding that some people see you apparently handling things so well, they assume that you don’t need help.
The MVP’s, for whom my respect multiplied, were people like Rev. Wilson, who discerned my weariness, and asked that profound question. It wasn’t the usual “If you need anything…”. He understood, as did every other person who was on the other side of their caregiving journey. Of course there are needs! Wants, too! Caregivers need to know that they don’t require permission to acknowledge their own humanity.
Primary, live-in caregiving, as it relates to adults, is not a duty, obligation, wish, right, grift, or leisure. It is a CHOICE. Even if it’s a profession, it’s a choice. Morality, familial ties, friendship, or an emergency may drive that choice, but it is a choice, nonetheless. It is a responsibility that is taken on, but can be thankless. Be prepared for that.
Everything good, bad, and indifferent that goes along with caregiving, you choose to accept, deal with, and tolerate. YOU decided to take on the role. Anything big, or small that OTHERS do, you learn to appreciate, but you will do yourself harm, and be perpetually disappointed, if you have demands, expectations, and notions of what others OUGHT to be doing. There’s no equal time; no shift changes; no guaranteed relief. You have to know what you’re signing up for when you take the job—and it IS work.
For some, it’s a calling. They didn’t know they had it in them. There was a need, and they went. It’s a learned skill. It becomes second nature, as if they’d been anointed for the task.
On the other hand, everyone is not cut out for the job. You can’t make them do it. There’s no bribe, command, nor sob story big enough. Stop trying.
Everyone will not eagerly jump in to help. They know they’ll muck things up. They may call every day, send cards, presents, flowers, and food, but seeing and handling waste, is where they draw the line.
Everyone will not show up at a moment’s notice.
Everyone YOU thought was the ailing person’s ace-boon-coon-ride-or-die, may turn out to be just an acquaintance, opportunist, or fair weather friend.
Everyone will not readjust their schedules, postpone their plans, cancel their obligations or be at your beck and call.
Everyone isn’t capable or strong enough to handle the messiness, nor the sudden changes in appearance, temperament, cognizance, ability, mobility, or availability. You can’t condemn them for it.
Help often comes from unlikely places and people, who genuinely want to, and know how to offer meaningful assistance—without acknowledgment or fanfare. It’s usually people who have been in your shoes, who are the greatest advisors and advocates. They KNOW. It’s the same game, but with different players. Knowing how to spot, assign, and utilize helping hands, and bench others, is priceless, and helps avoid frustration and surprises.
Face it. You do NOT want some people’s brand of help. They’re like bulls, running loose in a china shop. Some people are neither organized, rational, clean, neat, discreet nor considerate. Some have no medical degree, but want to implement what they think ought to happen, ignore warnings and restrictions, suggest harmful alternative treatments, interrupt schedules, and act as if a major change has not occurred that demands adjustments from everyone. Some people are not as smart as you thought they were, and simply don’t know what to say or do. For others, it’s all about Kodak moments for social media, when the ailing person is at their worst. Others make work FOR you, gossip, spread rumors, leak confidential information, seem to want you to fail, and are anticipating death like vultures.
When sincere people ask, “Is there anything I can do?”, GIVE them something to do; tell them what you need—be it prayer, or two-ply toilet paper—but don’t expect them to be your twin, or do things the way you would.
By all means, don’t be mad when people can’t show up, don’t show up, or won’t show up. Lose the notion that they’re supposed to. LOSE it. Caregiving truthfully identifies the heart, soul, role, and intentions of everyone in an ailing person’s life. There is no law that says anyone is obligated, so don’t act like you have a case when someone says, “No. I can’t.” Don’t argue, be devastated, shocked, or plan lengthy guilt trips. The only person who you can control, is you. Remember the commitment YOU made.
Be grateful for the team that will organically form—and it will. It may be comprised of THE most unlikely people, but don’t stupidly refuse their support because you think someone else should be there—but isn’t. Stop wasting time and rejecting resources that are right under your nose. Whatever package that efficient help comes in, accept it. Stop lamenting who ‘s not assisting, and embrace who IS.
It’s true. We’re ALL either going to NEED a caregiver or BE one. That’s why it’s so important to soberly mind how we treat one another, during healthy seasons. Like the old folks used to say, “You never know who’s gonna have to give you your last drink of water”. (Or, in the words of my Auntee Lillian, “You never know who’s gonna have to wipe your ass”.)
What looks like abandonment, disinterest, and selfishness, may actually be fear and trepidation. Find, not excuses nor judgment, but grace for those who simply can’t handle it, and forge ahead with those who can.
By all means, take care of yourself. You are no good to your loved one, if you’re not physically, emotionally, or spiritually well. Financial stability matters, too. Choosing to be a caregiver has consequences involving present and future employment, savings, and retirement. Have a plan. Know your limitations.
Stop begging and arguing with whoever is exercising their right to make choices for themselves, that DON’T involve the direct caregiving you’ve assumed. Don’t be a complaining martyr, either. The person you’re caring for can hear, and doesn’t need to be sick, AND feel like a burden, too. That help you don’t want, might be just the help you need. Don’t keep waving off those rescue boats, because you’re insisting on a ship that’s not even headed in your direction.
If you're going to be a caregiver, check your expectations, and remember—it’s a choice.
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