CAREGIVER DIARIES : SUPPORT

Off and on for the past 12 years, I've been my Dad's caregiver. It's been full-time for the past 2 and a half years. 

My Dad's health issues have been grave, to say the least, in the past 4 months or so, and to see him making progress these days is so encouraging. 

It's why I don't have the time nor patience for distractions, and encourage all caregivers not to be sidetracked, either. 

I know that can be easier said than done, but it's worth a try. 

You need a team---a supportive team--and it may be comprised of people you least suspect.

When you're on the scene every day, you have a front row seat to the monumental efforts, actions, and expertise employed to restore your loved one to good health. 

It's stressful, sleep-depriving, and difficult, but not nearly what the ailing person is going through. 

You only see the signs of pain, but they're feeling it.

 

People who are detached from the situation may mean well by what they do, but the result of their thoughtlessness may be an insulin shot in the stomach, an increased dosage of some pain medicine, a setback, or an emergency procedure. 

Somehow, when you communicate the gravity of the situation to some people, they actually think you're exaggerating or making it up! They don't respect you, so why should they listen to what you have to say? You're just the caregiver. 

You tell someone, "He has Diabetes. His blood sugar was 155 today". They translate that as "He needs more cake". 

You say, "He has high blood pressure." They respond with, "How about some nice fried chicken and ribs? it won't hurt you!" 

It's hard on a person when lifelong habits, preferences, likes and dislikes have to be altered, but if they're making an effort to do it, why sabotage it? Everyone in the life of your loved one should want to be on board, and not do or say things to impede progress.

Between medical professionals, patients, and primary caregivers, there's always a detailed plan of care; there's always a goal. It's never a secret; it's not a game, but if you're absent, ignorant, just don't want to know, or think your uninformed way is better, you won't follow the plan. Just to have your way, or assuage your guilt, you'll fight against it to the detriment of the plan, and even the patient.

Caregiving is draining, but it's done every day by more people than we imagine. 

There's no more room on a caregiver's plate for anything other than empathy. 

Over the years, though, I've heard story after story from countless caregivers--friends, acquaintances, and strangers--that the number one thorn in their side is not their ailing loved one, the illness, lack of resources, or the health care system. The number one thorn is some disgruntled, divisive, self-absorbed family member, or friend of the ailing person. 

I welcome anyone who will be helpful, prayerful, encouraging, understanding, and cooperative. 

People with unresolved issues and axes to grind; gossips, liars, busybodies, manipulators, narcissists, and opportunists? No thanks.

I'm not sure why, but I re-read a very snarky text message I recently received from an out-of-state relative. I don't know what it was supposed to accomplish, other than for me to think her a fool, but it is good to know how people feel. 

It helps to know how to proceed. 

What did Maya Angelou say? "When people show you who they are, believe them the first time". 

With all that this year has entailed, that text message may have been the necessary icing on the cake. 

It may have been the final directive to stop hanging on to people who mean me no good.

In the message, she threatened to "talk to everyone" about me. I shook my head and wondered, "About what?" When was the last time she'd seen me, or spent any considerable amount of time in my presence? 

I would have had more respect for her point of view if she had an answer other than "never" to the question of the number of times she visited my Dad, or relieved me so I could get a break. 

What could she possibly accuse me of, or criticize me about? 

What could she even boast about? 

How many times she came to sweep, mop, or rake the yard? 

How many times she came to sit with my Dad, talk to him, help him brush his teeth, or wash his face? 

How many times she brought or cooked a meal, cut up his food, or washed a dish? 

How many times she took him to an appointment, changed a bandage, or drained a catheter bag? 

How many times she helped him stand up, or sit down? 

How many times she'd ridden with him in an ambulance? 

How many times she sat for hours in an emergency room? 

How many times she cleaned up vomit, or scrubbed a toilet? 

How many times she took out the trash, hauled out junk, or organized a room? 

How many times she helped him navigate a book, or newspaper article? 

How many times she filled out forms for him, or answered medical questions?  

How may times she laid out his clothes, or brushed lint off of his coat and hat? 

How many times she arranged for transportation to get him from point A to point B? 

I’d be more inclined to hear anything she had to say if the answer to even one of those questions was once or twice. Her answer would be “Never”, so what could she say to me?

I am amazed how people seem to think they have so much to say about things, people, and situations of which they know little or nothing firsthand. 

They have nothing to testify about their measurable or meaningful input, because they haven't offered any, but they are eager to speculate, micromanage, and criticize caregivers from a distance.

 

So many people have no idea how caregivers are faring, but for some reason they think caregivers are living the life of Riley.

I could only conclude that her rant was motivated by what she had been told--and, perhaps, guilt. 

Even if she thought what she heard was true, she still didn't, hadn’t, and won’t show up!

 

She'd been sold a bill of goods, by someone she trusted, and decided it would be a good idea to mount a campaign--in writing-- against me. 

I thought, "Good luck with that". 

She felt the need to tell me that "Life is hard". 

"No kidding?" I thought. 

If only she could spend a day in my shoes--no--better yet, spend a day in my Dad's! (He only has need of one shoe now.) 

Where was she when he was in surgery? 

Has she even once sat in on, or assisted with his physical therapy? 

He has suffered an amputation, and a myriad of other health issues. No one's life has been harder than his this year, and certainly not hers. 

I guess I was supposed to be afraid or intimidated by her threat.  "You will not frame this in your favor anymore" she wrote. I'm not sure what the "this" is that she wrote of, but I am sure of the days, months and years I've spent with my Dad and she--and the person she so blindly believed and parroted-- were nowhere to be found. I guess that's my fault, too.

How do people view even caregiving as some kind of competitive sport? 

Who thinks that anyone is looking for accolades, points, and praise? 

What favor is there? 

You have to show up, and know what you're talking about, and have experience, truth, and facts to be credible--not just dabble in idle gossip or misinformation. But there are people who have no trouble believing a lie, or defending one.

"Frame this in your favor" was an interesting choice of words that jumped out at me.  

Was she referring to caregiving? 'Cause, I'm sorry, where has she been? 

I wonder who is lamenting and complaining to her that I'm gaining favor as a caregiver while they're losing it? 

And, favor from whom? Did caregivers know there was some “favor” to be had, while they're elbow deep in someone else's bodily fluids? 

If there is favor to be found and had, who needs, wants, or expects it--without showing up? 

Who thinks caregiving is a sport where there's some grand prize to gain? 

Caregiving isn't a glamorous affair, it's work, and for many like me, uncompensated work.

In 2005, when my caregiving role began, I was reminded of what every good supervisor I've ever had, told me: "Document EVERYTHING". 

I'm glad I did, for such a time as this--when people who are as clueless as a brick, and chronically absent, want to rise up and find fault, take sides, or point fingers. 

(Thank you, smart phone.) 

When you're dealing with the affairs of another person, no matter who it is, you have to cover yourself.

 

I'm not surprised any more about what people will accuse you of. 

I'm not surprised by what people will believe and defend. 

Current events are certainly proof of that. 

When you're surrounded by people who don't want the job, but don't want you to have it either, you have to cover yourself. 

For a caregiver, a date and time-stamped picture, voice memo, email, text message, or note is priceless, and will shut down a thousand words of the chatty do-nothings in your life.

My aunt stopped me in mid sentence during our conversation the other day. "I want you to hear me. He's your father, but he's my brother. I think everything you have done has always been in your father's best interest". 

There comes a time as a caregiver when you don't really care any more what others think, even if it’s complimentary. I’m aware that some people care about me only as it relates to my being present for my father, but I appreciated her words. 

She suggested that I've had a bout of tunnel vision where it relates to caregiving. She's probably right. Caregiving takes all of your attention.

So many seasoned citizens have no one to advocate for them. The details of their lives can easily eclipse those of the caregiver’s. 

It is not unusual to become an expert in the affairs of another person, and totally forget the priorities, plans, and desires of your own life. 

I've seen so many people alone and struggling, when I've accompanied my Dad to his various appointments, or to the pharmacy. They’re exiting Ubers, taxis, or Metro Access with no one to assist, or sit with them. There’s no one to help them fill out forms, or answer questions.

I've seen people walk away from pharmacy counters and leave their medication behind because they couldn't afford it. 

Caregivers are often the eyes, ears, hands, minds, trouble shooters, and interpreters for their loved ones. There's a lot involved; lots of moving parts; decisions to be made, information to gather and store; things to do and keep track of that directly and indirectly impact your loved one. I’ve seen people who have no advocate.

There have been many critical days. 

I am keenly aware that I accepted the assignment, so my expectations of others has never been that anyone would do what I do, the way I do it. 

What I didn't expect was such consistent opposition and antagonism that, frankly, borders on hate. 

Fortunately, it has not hindered anything, it just gave me thicker skin, opened my eyes, and destroyed my aversion to confrontation. 

Dad is alive and well, thank God, celebrated his 91st birthday on Saturday, and is enjoying physical therapy--most times. 

He even stood up the other day. 

His arms are getting stronger. 

His appetite is coming back. 

That's worth all of the crap that busybodies can sling. Everything else, frankly, is moot.

Become a caregiver. I dare you. You wont be a soft-spoken pushover any more.

You don't have to spin anything in your favor if favor is already present. God grants that. 

Only the insecure, guilt-ridden, and the deficient have to rally, run, and create photo ops to make themselves look good, or blame others for what their own words and actions have caused. 

Consistent people merely allow their actions to speak for them.

Frankly, I'd be afraid to keep attacking people who haven't done me any harm. 

I'm not sure why competence and faithfulness inspires anger and envy in people, but it does. Perhaps, because they've been hoping that you would have failed, quit, and hung up your caregiving apron by now. 

 
If they're not helping you in any meaningful way right now, today, what are they going to do if you suddenly stop? You already know: NOTHING.

There are those who have no clue what a caregiver's day holds, but they have an awful lot of opinions about it that they share rather freely and recklessly. There are those who show up every blue moon and think it qualifies them to assess the situation and your role in it. 

What's even more fascinating is how people blame others for what they don't know--and could know--if they'd only show up more often. 

It's not unusual for people to concoct a crisis to cover their guilt or negligence, and then look for a scapegoat. 

 
People who have been assisting you, though, and those who have been caregivers themselves, know very well what's up, and they can't be tricked or persuaded otherwise. They can easily identify all of the players in your life. They know who's working, who's half-stepping, who’s all talk, and just wants to be seen. 

They know who's present, and who is missing in action. 

They know who's knowledgeable, and who's being briefed, and has to parrot information. 

They know who's wholly committed, and who merely pretends to be on the job. 

They know who's in it for the long-haul and who's temporary. 

They know who doesn't have the stomach for it, but at least they won't do or say anything to make the situation worse. 

They know who simply can't be there, but they'll at least pray.

I was always taught that before I formed an opinion or took a stand, it would be prudent to examine the facts--no matter how painful or disappointing. 

I was taught to be on the side of right, not personalities. 

People you like and love, can be as wrong as two left shoes, too. 

There's no love lost, but it's never prudent to uphold someone when they're dead wrong. That's not loyalty. That's stupidity. 

Caregivers don't have time to coddle people who are able-bodied.

It's always a choice to believe a lie, to allow oneself to be manipulated, to refuse to think for oneself, or be satisfied with half of a story. 

Talk is still cheap. 

Those who won't, or are too cowardly to stand up for what is right and fair, will always play both ends against the middle. 

How disappointing to find you have been fighting on the side of falsehood, making accusations against the innocent, and adding to already stressful situations instead of offering help or relief. 

Taking up other people's crosses and baggage is always a bad idea. 

Getting caught up in beefs that are not your own, is always a mistake. 

There's always the possibility that you will emerge looking and feeling stupid.

It won't be long, however, when those who have mounted a campaign against you, spurred on by someone who has an issue with you, will be thrown under a bus themselves. 

Self-serving, manipulative people have no loyalty to anyone, and will run over everyone. Their alliances are only to support their causes. 

Attention grabbers--those who, even in a caregiving situation—believe everything is about them--demand recognition, and are all too eager to tear you down if you don't cater to them. 

The gullible will never open their eyes. 

They will always hop on bandwagons based on what they heard. 

I imagine it's too painful to acknowledge that you have been lied to by someone you trust. 

It is often too late before people realize they have been roped into harboring ill feelings against people who have done them no wrong. 

There are those who are mad, and they want others to be mad, too. 

Why?

If you can't, or won't help a caregiver, don't hurt by peddling gossip. Think for yourself. Get facts. 

So many beneficial personal, and professional relationships are forfeited, and opportunities missed, when you refuse to do so.

You can't con people who know the truth. Those who have been angelic in their support and consistent assistance to caregivers, know what's up. 

People who have been caregivers themselves, have shockingly similar stories of being demonized by those they least expected. 

Sometimes the best defense is silence. Just keep working on behalf of your loved one.

People only think they want to know what you have to say when they confront you with nonsense. 

Many should thank God you haven't said all that you could say. 

Being a caregiver places you in a unique position to be privy to, and amass information about people and situations that you never knew before.

Sometimes your silence is to protect others from irreparable harm. Sometimes they don't even know they're tap dancing on the very nerve that will cause you to tell them what they really don't want to know.

There are some things God tells you to allow Him to handle--and I've seen his work--so I let Him.

A friend said, "You have to ask the Lord for strength and piece of mind. Don't be distracted or discouraged. People don't have to be invested in what you're invested in, but they don't have to undermine or minimize your efforts, either. Your victory in a situation; the fact that you haven't stopped doing what you know is right. is what makes those who seek to antagonize and undermine you really mad. People who've been trying their best to tear you down don't like it when you're supported."

I can count them on one hand, but I AM supported, and for that, I'm grateful.