CAREGIVER DIARIES: THE INFAMOUS "THEY"

The music was familiar. I loved it.

I'd been singing along in my own way (singing all of the parts, and what I thought were the lyrics) for 25 years. 

The invitation, however, demanded precision. 

I knew that singing precisely, as opposed to leisurely, would take concentration. I knew that the days leading up to the concert would be long, and I worried if my brain would be able to handle it--and the sight reading. 

I was exhausted.

There's been a lot on my caregiving plate this year. I felt a little rusty because I haven't been singing very much. I considered declining the gracious invitation. You never want to be the weakest link. 

I'm so glad, though, that I decided to accept, and participate in the Soulful Celebration concert at the Kennedy Center. It was just the shot in the arm that I needed. I felt so refreshed and happy after that final "Hallelujah!". 

I'm still smiling about it. The spirit of cooperation was wonderful. Being in the company of caring, nurturing people was, too. 

Music really does help and heal.

Did I really think the enemy wouldn't "try it", though? ...lol

We were on a break from rehearsal on Monday when I walked into the canteen to grab a bite to eat, and was greeted by a woman who happened to know my Dad. 

"I just knew you'd be here!" she shouted as she hugged me. "I guess you stay busy traveling, huh?" 

I wanted to correct her that the event was one of a few times I've actually sung publicly all year, but I didn't.  

She said, "I guess we can go to see your dad now. I'm sorry I haven't visited, but we heard what was going on." 

Dumbfounded, I asked, "Who's "we", and who told you that you couldn't visit? He's in a public place."

 

She looked more puzzled than I did. "Well, I got an email...they said...I mean in his condition...you know...I mean that your family was restricting visitors, and..." 

I stopped her mid sentence. "Who are they? What email? Who told you that?" 

She was suddenly very apologetic. She said some other stuff about knowing "how people are" but I had tuned out. Drama tried to find and hogtie me. I took a deep breath.

  

I've kinda gotten used to people misspeaking, being nosy, presumptuous, too familiar, pushy, antagonistic, demanding, divisive, careless, and misinformed. I don't think most people are being malicious, but it doesn't make some encounters any less tiring. 

I recall the time when I hated and avoided confrontation of any kind. I always felt like I had to defend, or diffuse, or explain in detail to people who didn't deserve an ounce of information. 

I used to think I had to make nice no matter what. 

Times have changed. Mercy is still a great motivator, but no longer at any cost. 

I still hear my late mother's voice in my head, "Be a lady...You don't have to get down on somebody else's level, but speak up when you need to". 

It occurred to me that in almost 3 years, I had never seen the woman on my street, let alone at my Dad's house, or at any hospital or skilled nursing facility to which he's been admitted. What made me think she was really interested in driving the 53 miles to Leesburg to visit him?

When I tuned back in, she was saying that she would do better and ask before she made assumptions or took another person's word as gospel. She had been her own mother's caregiver, and had her own experiences with misinformation. 

She bade me a "Merry Christmas" as she hurried off and said she'd pray I be "delivered from church people".

 

I thought that was funny, too, considering she had so successfully exhibited some of the telltale foot-in-mouth traits of the "churched". 

A friend witnessed the encounter and asked if I was okay. 

"The devil doesn't have any new tricks, Vanessa. Always the same old stuff, huh? You must be having too much fun and he can't stand it." 

We laughed, found a table and enjoyed our meal. That little hiccup wasn't going to wipe the smile off of my face that had been there.

The infamous "they" have been having a field day lately, and I don't know why its ever surprising to me. 

I've said it before and it bears repeating: Everyone can NOT represent you. They will go off script, embellish, flat-out lie, backpedal, omit critical information, do the most when the least will suffice, and worst of all, try to assume your identity. 

Some people can't represent you because they neither know your heart, nor do they respect your wishes. They'll make decisions and ascribe them to you. 

I'm happy that there are more people who know the truth of a matter than those who are satisfied to speculate. They help you to put out fires so that you can remain focused.

Why, when someone wants to know something, don't they simply inquire of those who actually know? Why phone someone who's not present to ask what's going on, take their word, and then disseminate it? That's just plain stupid. 

Since I became a caregiver, I've heard more about what I've said, what "they" said, what I've done, and failed to do, than I have in my whole life. I can count on one hand, however, the people who, prior to my Dad's hospitalization, consistently visited, and assisted in ways that mattered. 

That's why caregivers need to assemble a trusted team--people who will have your back, and if they can't do anything else, they'll at least pray.

It never ceases to amaze me how fixated people can be on everything other than my Dad's well being--and it's always the people who were eerily missing in action during countless times when I really could have used a helping hand.

 

Someone actually grilled him about where his watch, ring, and checkbook were. Now, who keeps valuables with them, for someone to come and steal, when they're in the hospital? Who thinks I wouldn't be vigilant about things concerning him, or not follow his instructions? Why would anyone visit him and cause him unnecessary worry? 

It's pure evil--and again, not a surprise. 

A deacon friend of my Dad's called to encourage me. 

"Just keep paying attention to your dad. You don't owe anybody any explanations. You've been doing this by yourself a long time. Somebody asked me the other day, "Why they got him way out there in Leesburg?" I told them because he's getting the best care there, that's why. Are you paying for it? Did you visit him, or help out, or ask him if he needed anything when he was right around the corner? No! So why are you worrying about where he is now?"

I laughed, but he was right. So many people have soooooo much to say; they've conspired, schemed, lied, undermined, and gossiped incessantly. Others want to be in charge, and run things (and me), but when it comes to actual work--if it requires getting their hands dirty, changing plans, or committing indefinite blocks of time, they simply can't be found. They're much too busy to be bothered. 

More than a handful of rumors and accusations are flying about me even today. I hear "They" said I'm mounting a lawsuit. I wonder who I'm suing? lol...

"They" surely do know a lot more about my life than I do. 

Where are the infamous "they", however, when you're sitting in an emergency room all night? Asleep in their beds, of course.  

A friend lamented, "What you're going through is more common than you think. Caregiving is a sacrifice. It's hours, days, and years of time. The people who should be saying "thank you" and asking if you're alright, are the ones who tend to cause the most distractions and try to tear you down."

Busybodies, the guilt ridden, and opportunists miraculously show up regularly at the ninth hour when they sense a funeral is imminent, and there's stuff to be had--but if you are a caregiver you can't get bogged down in minutia. Your constitution remains the same. You know what the journey has been--every major detail. You've seen miracles. You can't take your eyes off of the principal thing. Your loved one's restored health and well-being is always what matters most.

You can't forget about your own health, either. Sometimes you have to turn off, shut down, and unplug. 

Caregivers, stay the course. Try not to be alarmed by anything. Learn from everything. Remember:

1.As much as possible, continue to do the things you love; the things that bring you joy.

2. Surround yourself with supportive, encouraging, understanding people.

3. Stop giving power away to, and accommodating those who clearly don't understand what you face each day.

4. Make no room for nonsense. Set boundaries where they need to be, and don't move them.

5. Clear your mind at the end of the day. Something funny usually helps me.

6. When people ask, "Is there something I can do?", have an answer other than, "No. I don't think so".

7. Talk is still cheap.

8. What is best always eclipses what is convenient.

9. Stay vigilant. Stay faithful...and remember, prayer still works.