Speaking Up

speaker

Awhile back I invited my writer’s group to compose a letter to people they interact with who are not caregivers themselves. To say the flood gates opened with this assignment would be an understatement.

Responses included:

The son or daughter who never calls, or who only calls to tell you about their problems. Or maybe they rarely visit, or never ask how you or your spouse is doing?

The busy sibling who has no time to help, yet is always happy to criticize your caregiving efforts.

Numerous acquaintances who use that well-worn phrase “Let me know if you need anything,” as a sign-off to every conversation, and that’s where it stops.

The well-meaning friend who comments on how worn out you look, just when you were feeling pretty good.

The doctors who act like you and your parents are working for them, and not the other way around.

It’s clear this particular prompt struck such a nerve, and in all instances the group remarked that they stifled their responses for fear of being labeled a complainer, a troublemaker, or a bitch. I get that keeping quiet can sometimes be the better plan, but, there are many instances where we’ve simply got to speak up, because remaining silent only reinforces a status quo which is hurtful to those we love, and to ourselves.

Here are a few excerpts from my own letter, written to some of the physicians involved in my parents’ care over the course of six years. This isn’t an indictment of all doctors, for some were compassionate, generous with their time, and truly seemed to understand the challenges faced by my parents, and me as their advocate. For the record, I gladly wore the labels noted above and did share a few of these comments with healthcare personnel.

______________

Dear Medical Professional,

Before we begin, please fill out this ten page form of very tiny type, documenting your qualifications. Already completed this for the last caregiver? Sorry, I’ll need you to do it all over again. You’ve been waiting to see me for an hour? Well, everyone knows that a 9 o’clock appointment really means 10.

Do not automatically assume that all patients in their late 80’s have no capacity to understand what you’re telling them. Also, be prepared to answer a list of questions about side effects, expectations of recovery, etc. after you propose a risky surgery or procedure. Never use the enticement, “You’re not paying for this. It’s covered by Medicare.” Where do you think Medicare gets their money?

Please refer to elderly patients as Mr. or Ms. or Mrs. and not by their first names, or as the UTI or cardiac cath in room 202. Surviving this country’s health care system thus far, entitles them to a great deal of respect, and you are treating a person, not a condition.

Stop saying, “How are we doing?” when a caregiver and her parent finally get to see you after sitting for two hours. WE are pretty damn tired of late night trips to the ER. How are you?

Don’t look at a caregiver and say, “You need to do such and such,” as if this person has been hanging out on the couch eating bonbons and watching soap operas, all this time. Instead, look her in the eye and ask, “And how are you holding up?”

The next time a nurse brings an elderly patient the two Tylenol you prescribed for pain due to a pelvic fracture, don’t get all huffy when the daughter/caregiver raises hell and demands to speak with another hospitalist. Prescribing opiates may not be your first choice, so do your research, or call in a pain management specialist. Just don’t minimize that patient’s distress.

To close, I get that you work long and demanding hours. As a caregiver, so do I. Maybe we can work together as a team to change things in this broken healthcare system of ours. Please accept these suggestions as a token of my commitment to this worthy goal. The next batch of suggestions will be accompanied by a bill for consulting services rendered. Payment will be due within 30 days, and FYI, I don’t accept insurance.

Respectfully,

Judith Henry

______________

Readers, if you’re game to give this exercise a try, pen your own letter to someone, and look closely at what you’ve written. Like the members in our writing group, you may feel a sense of relief just getting these unspoken words out of your head and onto paper. But think for a minute – is there a way to present your thoughts constructively to the person you’re writing to?  For example, instead of automatically saying, “I’m fine” to the adult kid who calls with a cursory “how are you?” be honest. To the physician who barrels in with a treatment or surgery, assuming your parent (or you) will acquiesce quietly, explain you have a list of questions prepared to be answered first.  When someone tells you, “Let me know if I can do anything,” don’t just say ok. Tell them what they can do to help, and be specific.

You never know. Your words may just start changing things for the better.

 

Are You Staying Hydrated?

hydrated

For most of us, being a caregiver is more like running a marathon than a sprint, and few things can dehydrate you faster than the relentless demands that come with this role. I’m not just talking physically, but emotionally and spiritually, as well. Those oft-ignored symptoms of headaches, fatigue, dizziness, confusion or anger can all be signs that our bodies and minds are depleted and out of whack.

So, even though we may not be able to mute the cell phone, hand our duties over to someone else, or get away for a two-week vacation, there are small ways to replenish that don’t take a large investment of time, or even money.

One caregiving friend I know takes walks with her beloved dog a few times a day. Hard to say who enjoys those breaks more. Animals are always in the moment, and they can teach us to do the same. Own a feline, instead? I can’t be the only person who’s gone into a trance while stroking my cat’s pointy little face. Research shows that petting a beloved fur baby can release a spray of endorphins that make you feel more calm and peaceful.

The benefits of music have been scientifically documented. It can reduce stress, relieve pain, and help insomnia. When traveling back and forth between Tampa and Orlando to visit my folks, I found that singing along with Barbra Streisand tunes always calmed me down. Would that I had Bab’s voice instead of her nose.

Art saves. Whether it’s a coloring book for grown-ups or a half hour of scrapbooking or knitting, focusing on a creative act gives your right brain a needed boost. It’s also the perfect escape from the barrage of information and decisions that a caregiver’s left brain must deal with every day.

Pay attention to the natural world around you. Listen to the birds chirping away. Notice the plants that are throwing out shoots or flowers. Admire the tenacity of the sugar ants still marching across the kitchen counter, despite all your extermination efforts. Oops! Meant to delete that.

Practice gratitude. Meister Eckhart said, “If the only prayer you ever say is “Thank you.” that will be enough.” When caregiving, my gratitude stemmed most often from things like a good cup of coffee, 10 minutes of quiet, and freshly laundered bed sheets. Oh, yeah, and a sense of humor that allowed me to laugh when life was at its most absurd.

Make a lunch or coffee date with a friend. Someplace close so you don’t feel stressed about stepping away from your caregiving load. One thing I realized is that each friend offered a different kind of support. Some were listeners, some were doers, and others were just great huggers.

Dig in the dirt. It’s ironic coming from me, the person who can kill a plastic plant. Seriously, though, even if you’re not a gardener, there‘s something satisfying about squishing your fingers in rich loamy soil, and repotting a droopy plant or growing a few herbs outside your kitchen door. My choice is always cactus, since they thrive on benign neglect.

Chop wood. Carry water. My interpretation of this Zen expression is that familiar tasks can actually be a comfort in the midst of all the “life changes on a dime” moments that caregiving can bring. The simple act of making mom’s meatloaf recipe for dinner, or helping your child with a homework lesson can ground you in the every day sacred. And yes, it goes without saying that some tasks are more sacred than others…

And finally, it’s ok to have a good cry. Studies show that crying can cleanse our minds as well as our bodies; releasing bottled up stress hormones that can cause all sorts of negative effects. Unfortunately, I didn’t do enough of that during the years spent caring for my parents. Instead, I drowned my sorrows in cheese and crackers. Trust me, crying is definitely better for your health and your waistline.

As caregivers, going the distance requires staying hydrated in all its forms. It keeps us from hitting the wall or at least from hitting it quite so hard. The rewards of being there for someone you love can be great, but let’s be honest – sometimes “surviving” is the real prize.

Photo from gratisography.com