We Are Family

I got all my sisters with me…

Sister Sledge’s 1979 signature song, “We are Family,” was recorded in one take. Pretty remarkable considering, “Kathy Sledge, who sang lead, did not know the lyrics ahead of time. Rodgers and Edwards (writers and producers) gave her each line through her headphones as it came up to make it sound spontaneous.”          
Source: http://www.songfacts.com/detail.php?id=1557

Winging it. I can relate – but getting it right the first time like she did? Not so much. It took me years to figure out that providing in-home care services by its’ very nature, extended a tempting invitation for me to become part of the family I served. Sounds good, right? But if you’ve been a caregiver for very long, I’m guessing you already know exactly what I’m talking about. Maybe that kind of thing has worked out well for you, but when I look back, I realize allowing myself to become part of the family has caused some unnecessary heart ache I hope you'll avoid.

I like to be liked. I long to belong. It gives me pleasure to help others when they need it most, but sometimes I need a (not so) gentle reminder that caregiving is my job, NOT my identity.

Oh sure, everyone means well. Families want us to feel comfortable and appreciated in their homes, plus it’s flattering when people say you’re just like one of the family. We see, hear, and find ourselves in the middle of some very personal situations. A listening ear, comfort and reassurance…that’s most often where things get iffy. Lines are blurred and we cross over before we know it. Do you find yourself unable to “clock out” at the end of your shift? Texting back and forth after hours? Seems impossible to let go and move on?

The truth is, after the coroner is called your work is done. I keep a photo album and a box of keepsakes to remind me of those I’ve loved and served. They and their families will always hold a special place in my heart...while I continue to fill it with more and more families who’ll need my help in the days ahead. 

Be encouraged! You are part of a world-wide family of caregivers. Learn to give your best without giving your heart away. And oh yeah, next time you hear Sister Sledge singing, “We are family, I got all my sisters with me…” turn up the volume and sing your heart out, along with all of your caregiving sisters and brothers in mind!

Finishing - But Never Finished

Life’s journey is one l o n g => marathon we’re seldom prepared to run. As caregivers we offer assistance to weary runners approaching their own personal finish line. Sometimes we cheer them on and sometimes we bandage their feet. Sometimes we lovingly cool their brow and wet their lips; but all too often when they falter, we attempt to pick them up and carry them the rest of the way, all by ourselves!

Imagine the inevitable (and preventable) crash you both face, all because no one asked for help.

Burn-out is a very real occupational hazard, whether you’re a family caregiver or you give care as a professional. Do yourself a favor, read some expert advice on how to run a marathon using walk-breaks:   https://www.runnersworld.com/training/a20862651/why-you-should-take-walk-breaks/  You don’t have to be a long distance runner to benefit from the concept. 

Thoughtfully plan to take short, daily “walk breaks.” Long awaited vacations and get-a-ways are not nearly as effective when it comes to curing and/or preventing exhaustion. A lifestyle that incorporates walk, run, walk, run, intervals is a more realistic and effective way to prevent unnecessary burn-out.

Recognize the signs and symptoms of Caregiver burnout:

https://www.webmd.com/healthy-aging/caregiver-recognizing-burnout#1

Staying strong takes thoughtful planning and preparation, especially for those of us running a challenging race of our own while assisting others who are facing the end of theirs as well.

Priceless

                                            Photo by Kelley Bozarth - Unsplash

MasterCard’s “priceless” commercials have been tugging at our heart strings for nearly two decades now. And why not? The immeasurable worth of relationships is a timeless truth that appeals to young and old alike.  

As a caregiver I witness more than my fair share of priceless moments. Loving hand squeezes, forehead kisses, laughter and tears comingled in a desperate attempt to hang on to a life that’s slipping away… I may not be at the top of any corporate ladder or pay scale, but OH! the benefits of what I do - are PRICELESS.  

In 2013 I had the privilege of looking after a married couple in their nineties. Both widowed, they met and married while in their sixties, never imagining their second marriages would outlast their first. I always looked forward to their nightly ritual when they blew kisses to each other from across the room, and then I’d turn out the lights.  

His & Her bedside commodes and twin beds replaced their queen sized bed and stylish furniture. Not exactly the American dream for retirement, but their modest kitchen afforded them the simple pleasure of dining together while enjoying a beautiful backyard view.

I’ll never forget the day Mildred shared one of her dearest desires with me. It was something she hoped would happen sometime before she died. I’m almost afraid to write about it, for fear of corrupting its’ purity.

What she wanted, I dare say, longed for, just once…was a really good kiss from her dear husband Nelson.

Aww! I know, right? J

Her innocent confession hung in the air like the sweet scent of lilacs in May. And oh how I wish I could say I quietly soaked it all in and simply nodded in respectful admiration. I should have kept my mouth shut and smiled, but no, the doer in me wanted to set things in motion. To clear the way for her wish to come true...so I promised to get on him about brushing his teeth more often and make sure he mowed down some of those whiskers he kept missing when he shaved in the morning. Hmm, I even thought perhaps I should light some candles at dinner, you know, to help set the mood? Yep, I’m ashamed to admit it, but I wanted to be the one to make sure Mildred’s lovely wish came true.  

Fortunately for them, she set me straight and don’t think she didn’t! She thought he was just fine the way he was: whiskers, bad breath, and all. So I stayed out of the way, and watched and waited. Months passed and sure enough, one cold, dreary February morning, Nelson came clunking along behind his walker into the kitchen like he always did. But this time he stopped next to where Mildred was sitting at the table. He pressed his hand flat on top of hers and she looked up at him, the man of her dreams. He said, in his breathy hoarse voice, “May I have a kiss?”

I stepped back and held my breath, not wanting to spoil the moment. She smiled, and giggled, and said shyly, “Of course.” And right then and there folks, I witnessed her dream coming true. Better than any chick flick, or fairy tale, or romance novel; they kissed! 

He lingered for a moment and then, without a word, he clunked along with his walker until he plopped down in the chair where he always sat, right across from his beloved Mildred, every single day since they’d declared their “I dos.”

Yep. The pay I receive for being a caregiver – is PRICELESS.

They Call Me Mellow Yellow

How many of us needlessly toss and turn with strange bedfellows like Wondering, Waiting, and Worrying? Medical terminology, confusing lab results, and a plethora of medical websites can all be a blessing and/or a curse. Even if your doctor does have a brilliant mind and an uncanny ability to diagnose your ailments, she or he may not be the best communicator on the planet. And then again, maybe neither are you.

Want to avoid some needless worry? The next time you see your doctor, don't be afraid to ask questions. And keep asking until you fully understand what you've just heard. 

This week I found myself zooming down some highly polished hospital hallways, fearful of what I was going to find once I tracked down my friend Lucy. I stopped at the front desk to ask what room she was in and the guy mumbled three words that sounded like Critical Evaluation Wing to me. I could feel my anxiety level rise. "Critical!?" She seemed fine to me a couple of days ago…

Halting in my tracks, I was relieved to see “Clinical Evaluation Department” prominently spelled out on the wall above her room. I coached myself on my way into her room with thoughts like, “Ok, ok, take a deep breath, calm down, and remember to smile!”  

And there she was. Sitting on the edge of her bed, watching TV, swinging her legs, and eating gluten-free chicken fingers with the promise of a bowl full of yellow Jello for dessert. 

The song, “They Call Me Mellow Yellow…” began playing in my head. Seriously!

So yeah, even a trained facilitator can lose their composure -  ever so needlessly.  

Slaying Zhilaohu (AKA Paper Tigers)

Still in my pajamas and enjoying my second cup of coffee, a desperate phone call interrupted my day off. It was Ken. Calm, cool Ken. A guy so laid back, I often wondered if he was taking short naps in between sentences.

Ken is a member of the sandwich generation. He and his wife Anna are hard pressed between the needs of their kids, their grandkids, and their fiercely independent elderly parents; so I occasionally lend them a hand as an eldercare professional. Ken’s voice was shaking one particular day when he called for my help, “My dad has stage four kidney failure…this could be it…my mom wasn’t sure if it was stage four or three or…the doctor called and wants to see him right away…They’re probably going to admit him…” I reassured him that I’d meet his dad at the doctor’s office, I got dressed and quickly jumped into my car.

A short time later, I was listening to the nurse record his remarkably good vitals. Apparently all he needed was a vitamin B-12 shot. “That’s it? Are you sure? What about his kidney function?” I asked. It was fine for a man his age. Go figure. So, what the heck happened? I knew there had to be a health literacy teachable moment somewhere in the middle of all this and here’s what I found:

Ken’s mother read the lab test results that came in the mail the same day they called to schedule his B-12 shot. Did I mention that she suffers from macular degeneration? And that she’s legally blind? And that all she could really make out was the test key, which gave specific ranges for stage one right on through to stage five kidney failure. She never compared her husband’s actual reading to the key…which led to her hysterical call to Ken…which led to Ken’s frantic call to me... which led to ...well, you get the point! It was like playing Telephone Tag, with disastrous results.

This short but intense emotional upheaval could have been avoided and here’s how:

A simple medical release form would give their adult children access to their parent's test results, not only that, but a quick phone call to the Doctor’s office would have prevented it from getting out of hand.

If this kind of thing has ever happened to you and/or a loved one, you are not alone. According to the *Minnesota Health Literacy Partnership, “only 12% of literate Americans are proficient in understanding health information.” Twelve percent!

We can all promote better health through better communication. This short video clip sums up the benefits of finding a trained health literacy facilitator. I hope you enjoy watching! 

Use cntrl+click: https://www.youtube.com/watch?v=VKodtW01RIY

*Source: https://healthliteracymn.org/health-literacy/why-health-literacy-matters

Reach Out and Touch Somebody's Hand

Touch. What’s the first thing you thought of when you read the word? Whether you’re a professional caregiver, looking after your elderly parents, or a Meals-on-Wheels volunteer, adding thoughtful touch when interacting with those suffering from Alzheimer’s/Dementia can make your moments more meaningful.

BUT…

Before you start doling out unsolicited bear hugs, be sure to read their personal warning signals. Yes, your body language is key to effective communication but even more important is what they're saying with theirs. If they pull back or look confused or seem uncomfortable, stand at a respectful distance and put your hands someplace where they can see both of them. It could be that they were not raised in a demonstrative family. 

Today’s seniors were not only influenced by the economic upheaval during The Great Depression, but they were also parented under the influence of “John B. Watson, one of the originators of the behaviorist school of psychology,(who) urged parents to maintain a physical boundary between themselves and their children… ‘Never hug and kiss them, never let them sit on your lap. If you must, kiss them once on the forehead when they say goodnight. Shake hands with them in the morning. Give them a pat on the head if they have made an extraordinarily good job on a difficult task.’”  Small wonder most of our seniors have never been big on physical affection.

In one of her research studies, “Tiffany Field, the head of the Touch Research Institute at the University of Miami’s Miller School of Medicine found that one group of elderly participants received regular, conversation-filled social visits while another received social visits that also included massage; the second group saw emotional and cognitive benefits over and above those of the first…Touch itself appears to stimulate our bodies to react in very specific ways. The right kind can lower blood pressure, heart rate, and cortisol levels, stimulate the hippo-campus (an area of the brain that is central to memory), and drive the release of a host of hormones and neuro-peptides that have been linked to positive and uplifting emotions. The physical effects of touch are far-reaching.”

Source: https://www.newyorker.com/science/maria-konnikova/power-touch

Supporting them with a hand on the small of their back, a gentle touch on the arm, a rub on the shoulder, sitting by their side while looking out in the same direction (as opposed to face to face), are all non-threatening forms of physical touch. Commenting on a man's firm handshake can boost their ego as well as their immune system. Moisturizing their skin, combing their hair, tucking them in, a manicure, a foot soak, these are all, non-threatening forms of physical touch. An affirming facial expression combined with light conversation, and physical touch can help prevent feelings of embarrassment.

Good TIMING, an affirming TONE of voice, and non-threatening physical TOUCH (in that order) can pave the way for more meaningful visits with older friends and family.

Love Letters

We could all learn a lesson on the importance of TONE from Will Smith, The Date Doctor, in the 2005 hit comedy Hitch, “60% of all human communication is non-verbal body language. 30% is your tone, so that means that 90% of what you’re saying, ain’t coming out of your mouth.”  I’m not sure about the accuracy of those percentages, but I’ve rated TONE second in importance, right behind TIMING when communicating with those who suffer from Alzheimer’s/Dementia/TBI.  

In the last decade a lot of emphasis has been placed on what we say. Canned sentences like, “When you do thus & so, I feel this & that.” I’m not a fan. I tried to teach that to a group of single moms with diverse cultural backgrounds…once. They giggled and rolled their eyes, and then informed me that their kids would laugh them out of the kitchen if they used even one of my canned phrases. I get it. We had our own family vocabulary taboos. I remember when one of my boys (3 years old at the time) visited a family farm in Iowa. He innocently pointed and exclaimed, “Yook Grampa, chicken bowel movement!” when he peeked inside the chicken coop. Yeah, his dad didn’t want him to learn the word poop. My turn to roll my eyes. LOL

Families have their own lingo and far be it from me to try to tweak it. Mayberry’s Sheriff Andy Taylor tried to reform a verbally abusive couple by giving them a cordial script to follow at the start of their day. At first it seemed like a great idea, “brilliant” in fact, according to Andy’s doting Aunt Bea. But Deputy Fife cringed when he heard the couple exchanging “Good morning honey(s)” in a contemptuous tone of voice, “I’d rather be called skunk face than Honey like that!” So, yes, the words we choose are important, but the tone in which we say them speaks even louder than our words.
     

So, by now you must be wondering what all this has to do with improving your visits with someone suffering from Alzheimer/Dementia/Traumatic Brain Injury? Folks with these kinds of challenges can't keep up with all the nuances of communication so they rely heavily on visual ques. Lean on that fact and put it to good use!   

If you read my previous blogs, you'll understand the primary importance I've place on what I call the Three 'T's. The first 'T' is for  TIMING. If at all possible, choose a quiet, non-stressful time for both of you. If they are in a nursing facility, ask their caregivers what might be the best time for a visit. 

When you arrive, I recommend using the first three minutes to let them know how glad you are to see them! This sets the second 'T' (Tone) in place. Knock before entering. Asking permission to come in, sets a safe and respectful tone, as well as a genuine smile or handshake. It's like choosing the right stationery for a love letter. I’ve been known to spray perfume on my love letters, in the same way, lavish your visit with affection and kind words. 

Give them time to take it all in, and if possible, to respond as well. Choose comfortable and familiar topics for conversation.You may want to think about it ahead of time, in order to be able to guide them safely through a pleasant conversation. Be realistic about their attention span and their ability to keep up with the speed at which you speak. Don't be afraid of silence. Give them plenty of time to respond. 

As with any well written correspondence, you'll want to summarize your time together with a well chosen and meaningful closing. Here's where you need to use intimate knowledge to choose a meaningful way to express the third 'T' which stands for Touch. When you say good bye, find a way to physically connect with the person. At the very least, use eye contact, lean towards them, and speak words of affirmation like It's always good to see you, or I love you, or how much you're looking forward to coming back to see them again sometime soon.  

I hope you'll enjoy viewing the short YouTube video clip (below) which illustrates the importance non-verbal communication.  

  Will Smith – Hitch

 https://www.youtube.com/watch?v=xo-c3z6U4Vc