Author: sarambarton

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Corona virus Covid-19 pandemic stress management stress relief

Surviving the Stress of the Pandemic

As a long-time caregiver (10 years for my mother and 5 years for my father), I know a lot about being unable to leave home, to come and go as I please, especially during challenging times. It can be extremely stressful.

In the last two months, I have also been  laid up after surgery and unable to drive, go grocery shopping, or take a walk. I know the frustration of being cut off from what I enjoy doing. With only one arm functional, I’ve had to make a lot of adjustments in order to survive and thrive under these conditions.

It’s important to find ways to get through the challenges that keep us from our “normal” lives and manage the increased stress that comes with them. So, here are my best five tips for surviving tough times like these:

1. Keep to a regular routine/schedule:
It may sound silly but having a routine or schedule will help you get through the day more easily because it makes your time more predictable. Rise and shine at the same time every day. Keep your usual bedtime routine. Eat regular meals. Organize your “to do” priorities according to your needs and the needs of the people around you. Treat this time of crisis like it is a challenge you will master. Take it seriously and look for opportunities to move in positive directions. Don’t forget to give yourself breaks throughout the day, just like you would have if you were at work. The important thing is to be proactive in navigating yourself through the pandemic in ways that make you stronger and more confident.
2. Choose your weekly goals and work at accomplishing them every day, as time allows:

The crisis isn’t ending tomorrow. It will take weeks, if not months, to resolve. You are more likely to manage your time and energy effectively by being productive in the interim. Sure, you aren’t in your normal work surroundings, but that doesn’t mean you should lounge around and binge-watch episodes of “Married with Children” in your underwear until the pandemic is over. Use the time wisely to get a head-start on projects you have long thought about doing, but never did. Stay busy with things that matter to you, even while you are holed up. Thinking of renovating the bathroom? Do some research on current style trends, price out options, or even compile a list of local contractors. Planning a trip to France in the future? Brush up on your French with Babbel classes online and get suggestions of what to see and where to go from travel sites and blogs. Have you put off tackling that closet of yours because you always have “other” priorities? Open that door and dig into that black hole. Sort the items into piles. Donate what you don’t wear and organize the items you want to keep. The important thing is to make yourself feel like you did something useful at the end of every day.

3. When you do get out and about, take advantage of the opportunity to renew yourself:

On those rare opportunities that you venture out into the world, be safe, but also be mindful of your surroundings. Look at the world through fresh eyes and remind yourself every time you leave the house that this is a temporary situation. You won’t always be stuck at home. At some point, the crisis will end, and you will get back to your ordinary life again. In the meantime, appreciate the small things that you notice. Make eye contact with people, even as you keep your distance. Smile, nod, interact from a safe distance. The seasons are changing, so take all the glorious sights in. Look for beauty, for joy, for kindness, for goodness everywhere you go. The important thing is to remind yourself that you are still a part of the big world and once the virus has been contained, you will be back out there.

4. Get regular exercise

One of the best stress relievers I know is regular exercise. I have always made exercise a part of my daily life, but whenever I am facing difficult challenges that create extra stress for me, it’s even more important. When I was providing hospice care to my mother, I burned off a lot of stress with heavy workouts. I continually challenged myself to keep going with different exercise routines. Now I am busy with physical therapy exercises every day, to regain my mobility and function, so I can get back to my healthy self. I set aside that time because it makes me feel like I have some control over my life, even if I can’t do everything I want to do for several more months. Get in touch with your body’s need to stretch, to move, to feel alive. Let your mind wander as you work up a sweat. Exercise helps clear the head and brings us better clarity and focus. Regular exercise can tamp back some of that depression, panic, or fear you are feeling during these uncertain times. When those endorphins kick in, your mood is likely to improve. Hate to work out alone? Challenge family and friends to physical contests. Take an online exercise class. Line dance with your kids or grandkids. The important thing is to “just do it”.

5. Reward yourself for your perseverance and determination:
Treat yourself with respect during this difficult time, by recognizing that there are ways you can and should make a difference. You have control over certain aspects of your life while you are stuck at home, keeping your social distance. Use them to your advantage to survive this. What can you learn from this crisis that will make you stronger, wiser, kinder, smarter? How can you and your family adapt to these challenges in positive ways? This crisis didn’t suddenly emerge in a single moment on one day. It took its time getting started and it will take its time ending. Think about what you will do when the pandemic begins to wind down. What are those first steps on the road back to ordinary days? The important thing is to recognize that your efforts to get through this crisis are a reflection of you as a human being, so go ahead and make yourself proud by doing well.
Categories
deaf elderly furosemide hearing aids. dementia hearing loss Lasix lymphedema

YOU AND ELDERLY PARENT SHOULD LINGER OVER BREAKFAST

I am now going on Year Five of caring for my father. In a few short months, he will turn 94. Looking back, I appreciate the many lessons about aging that I have learned.

The hardest lesson came when my father was treated for swelling in his legs. It was so severe, he was prescribed massive doses of Lasix, generically known as furosemide. For a long time, he was miserable, trying to keep up with the constant trips to the bathroom. It sapped all of his energy.

But he was lucky. His saving grace was his vascular nurse, who recognized that he actually had lymphedema. Once she got him the proper treatment for this, he was no longer on Lasix.

Unfortunately, by that time, the diuretic had damaged his hearing to such an extent that my father was told he needed a cochlear implant. Given all of the medical issues he has had in the last year, he confided that he just wasn’t up for more surgery. In lieu of that, he opted for more powerful hearing aids.

But here’s a little secret about hearing aids for people who don’t wear them. Just like people who have eye problems don’t always have 20/20 vision with glasses, people with hearing loss sometimes experience difficulty even with hearing aids.

What does that do for an elderly person? It creates a sense of isolation. If you can’t participate in conversations, you are cut off from your social circle. And it can also create great challenges, especially when you are in a situation where things are going on around you and you aren’t able to properly process the limited information you have at hand.

This became especially troubling for my father when he was hospitalized a few months ago with pneumonia. The medical staff often ignored him and his hearing limitations. A few young nurses called to him from the doorway of his room, to give him instructions. They assumed he heard them when he didn’t. One made the mistake of telling me that my father was “a little forgetful”. I informed her that you can’t forget what you never heard. I finally had to tell the physician in charge that the staff was not adhering to the Americans with Disabilities Act. Deaf patients are entitled to “effective communications”. They need to understand the medical procedures that are planned for them. And that means that if necessary, every doctor who wants to treat that patient must provide information in writing or have a representative make sure the patient understands his or her medical plan.

What the hospital staff didn’t know is that I have a significant hearing loss. I grew up lip-reading, so I know all of the tricks of keeping up in a hearing world without having normal hearing.

And there are tricks. First and foremost, it’s imperative that you get up close to your elderly parent and lean in, to be sure he or she actually hears what you say. In a quiet room, it’s often fairly easy to carry on a two-way conversation. But the minute the acoustics change or there is a great deal of background noise, all is lost. That is when deaf people really struggle to keep up. When the brain takes in minimal information or misinterprets it, it can cause all kinds of communication problems.

One of the most important things I have done with my father is to linger over breakfast. Why? Because that is the time we sit with the newspaper. My father often reads stories aloud to me that have caught his attention. It gives us a chance to discuss current events. There is a back-and-forth that involves him sharing his thoughts and views on a wide range of subjects, from politics to local events to sports and entertainment.

You might think this is similar to watching television together with the closed captioning on and chatting about what you experience, but it’s not always the case. If you read a story in a newspaper, it’s all there in black and white for you to see. But closed captioning doesn’t always capture dialogue accurately. It’s an assistive device that enables me to follow the gist of a show, but it’s not perfect. I am often so distracted by reading the captions that I miss the action. If I focus on the action, I miss the captions.

Hence, I don’t rely on my hearing to hear. Does that sound strange? I don’t rely on my hearing to hear. It’s true. I rely heavily on my eyesight to help me see what people are saying to me.

But what happens if your loved one cannot see well, as is the case for my father? His ophthalmologist said there was no point in getting prescription glasses because they don’t make anything clearer for him.

Yes, as our parents get older, their physical senses really can dull. They struggle to function in the world without the full range of perception.

A case in point? The other night, I was watching a television program while I was working. During the commercial, I whisked the dog outside to do his business. What my father saw was me hurrying away with the dog. When I came back, I found him in a worried state. He mistook my rush to get back to my TV show as a sure sign there was something terribly wrong with the dog. That cause him great distress until I reassured him that the dog was just fine.

That’s the trouble with growing old. The world moves faster than your senses do, and it can be very difficult to accurately interpret your surroundings.

That’s why I linger over breakfast with my father. Or whenever I am doing something that puts me in close proximity to him. I make an effort to converse as often as possible. It’s a way to connect with him on physical, mental, and emotional levels.

But it also serves another purpose. It allows me to check for signs of dementia. People with significant hearing loss often begin to lose their faculties because they are cut off from the rest of the world. By constantly engaging in discussions, even those that might be very loud to people with normal hearing, I can see how well my father is able to apply logic and reason to comprehend his world, and more importantly, his environment, especially with all of the challenges that his health presents.

When he is frustrated by his circumstances and believes nothing can change, I push him to express his frustrations. That is the only way I can figure out how to amend the situation. I can’t fix every problem for him, but I can and do regularly look for adjustments and adaptions we can utilize to keep him engaged and involved in his own life. That is what quality of life is all about.

So, if you are caring for an elderly parent, take the time to have interesting conversations with your mom or dad. Gauge how well your parent is coping with the challenges he or she faces. And above all else, recognize just how debilitating it can be to become isolated by the loss of physical senses. Work hard to keep your loved one functional, because that is the very essence we human beings rely on to feel that life is worth living.

Categories
cancer caregiver caregiver education caregiver strategy caregiver stress caregiver support carer support grocery shopping time constraints

Grocery Pick-Up Is a Desperate Caregiver’s Best Option

There I was, bringing my dad home from the hospital. Long hours by his bedside. Little free time. No food in the house.

What’s a desperate caregiver to do?

Order groceries online. Oh, what a godsend!

I was nervous at first, mostly because I normally do my buying at another grocery chain. I like to clip coupons. I know the products and the aisles.

But I had no way to slip away for the hour or more I needed to shop at my favorite store. Rats. My envelope of coupons would go to waste.

Still, I needed to feed my dad…and me. I needed staples like toilet paper.

Other times, I have used a delivery service (Peapod) to bring the groceries to me. But to tell the truth, it’s not always convenient. The driver could show up when I am doing a caregiver task for my dad.

And then I remembered that Peapod also offers curbside pick-up. For just $2.95, someone would actually schlepp the aisles and gather all the groceries on my list, pack them into paper bags, and deliver them to my car at a time I could select for myself. Seriously…$2.95? That’s a small price to pay for keeping my sanity.

The downside? It took a really long time to master the online ordering process. Waiting for products to load from the weekly sales or from a department took too long. I finally got the hang of using my shopping list to select products, thus limiting the number of items I was offered. It helps, if you have preferred brands, to add them to the search.

And yes, I did shop for sales items, but only if they were products I planned to buy anyway. I learned this lesson the hard way. My first order took almost three hours to do because I scrolled through too many products. Going in with a plan and sticking to it is a busy caregiver’s best option. It’s the fastest way through the process.

So, the next time you find yourself strapped for time, low on extra energy, or just not in the mood to drag yourself to the grocery store, consider doing a pick-up run to a local store. For a very reasonable fee, you will save your sanity and free up some time to do something that really needs doing.

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cancer management palliative care Stage 4 cancer

STAGE 4 CANCER: RETHINKING OUR SUPPORT SYSTEMS

Four years ago, my friend got a frightening taste of death when her breast cancer metastasized, spreading into other organs. Her prognosis was not sunny, but somehow, she managed to endure some grueling treatments and survive them. When some doctors suggested that she prepare for the worst, she pushed back. She still had so many things to accomplish and she wasn’t ready to give up the fight.

When I look at where she is today, I am amazed. Her cancer has been in check now for quite some time, although she requires regular chemotherapy treatments to stay that way. But the important thing is that she is still here. Why? She is caregiver for her elderly parents, who have had serious challenges over the last year or so. If she weren’t here, what would have happened to them? Who would have looked after them in their time of need?

But her goals, her raison d’être, are far more ambitious than that. She is not just a caring and compassionate daughter. She also has guided young lawyers toward success, enabling them to pass the California bar. When her doctors informed her that it was time to retire, she balked, insisting on keeping her career intact, even as she scaled back her workload. It seemed like every time she was on the brink of success, cancer knocked her back on her fanny.

One of the early casualties of this unpleasant reality was her music. If you cannot hold your instrument, it’s hard to be a musician. Neuropathy, muscle weakness, mobility issues, and mind-numbing pain all took their toll on her. When she recently recorded her version of Santa Baby, we were so thrilled, not just because she stepped up to the microphone, but because she took that song and made it her own. She was getting back into the limelight, where she belongs.

The truth is that my friend doesn’t fit the mold of what has long been held to be the vision of a Stage 4 cancer patient. She has so many struggles, but she also has so many successes.

Stage 4 cancer patients often straddle the divide between life and death. As their disease is managed over years, not months, and as treatments have improved, these survivors are in perpetual limbo. Why does that matter?

It’s hard to keep a job when you have persistent, yet treatable long-term health challenges. If my friend had followed her doctors’ advice four years ago, her income would have been wiped out and she would be completely dependent on disability payments. Her teaching opportunities would have dried up. She would have had little hope of restarting her career.

This is often a typical experience for Stage 4 patients like the banker I met long ago. He bemoaned the fact that he was forced to give up his position in a financial institution because of his disease because he wasn’t expected to survive it. Four years later, with his stomach cancer managed, he floundered, trying to restart his career. He still had much he hoped to accomplish in the world of finance, yet he was on the outside, looking in, all because the expectation was that he was dying.

We need to start the conversation about how we can empower those Stage 4 survivors who choose to remain active and engaged in their chosen fields, should they feel up to working.

Pain management and palliative care are also crucial for any patient with Stage 4 cancer. There are almost always side effects and complications which can dramatically impact a patient’s ability to get over the obstacles that stand in the way between the “new normal” and everyday life. The better the disease management, the greater the success in navigating said obstacles. It’s important that we understand just how powerful it is when we help these patients find the “work-arounds” that hold them back. Overcoming the challenges of immobility and finding physical adaptations are imperative. How do we help people who are sometimes able and sometimes not able? There are times my friend can walk and times she can’t. There are times my friend can drive and times she can’t. She is able-bodied and yet disabled. That’s because she resides now in two different worlds, and she’s never really sure which one of them she’s in until she runs head-first into trouble.

What kind of accommodations should we make for people whose health fluctuates? We can’t just tell these people to surrender to their disease because they bear the label of Stage 4 cancer. We can’t expect them to give up the things that matter most to them. Nor can we dictate to them what they should or should not do. The doctors who insisted that my friend retire didn’t understand just how important her work is to her. For as long as she can remain engaged in her career, focusing on goals and continuing to advance her agenda, she chooses to do this. It helps her to have a purpose in life. It helps her to feel like she’s still a contributor whether she guides students, cares for her parents, or continues to pursue her beloved music. And to be honest, the world genuinely is a better place because she is still with us. So, who are we to stop her from pursuing her dreams? So many lives have been lost through the years, so many good people whose battles asked too much of them. That’s why we often think of my friend as a walking miracle. She has beaten the odds thus far, and she has put that “extra” time on this earth to good use. But she, just like other Stage 4 cancer survivors, needs more than just cheerful words and prayers.

There will come a time when more and more people survive the disease, and when that happens, we will have to help them maneuver back and forth between the world of active disease treatment and remission, without shutting them out of, or off from, what makes life worth living.

Is it a drain on healthcare to have people survive their disease? Yes and no. For every patient who adapts to the challenges, doctors learn more about what works and what doesn’t work. They find what is cost-effective and what wastes valuable time, money, energy, and resources. Some chemotherapy treatments have turned out to cause more damage than good. Some of the newer options that empower the immune system to fight the disease are showing promise. As these survivors begin to move away from a terminal prognosis, they need a better transition to more effective support systems.

How can we provide personal assistance, services, treatments, career options, and insurance coverage that works for them? Obviously, we know that what works for some doesn’t work for others. Can we find new ways to be mindful of their needs and responsive to their ever-changing physicality? Maybe what we really need is for Stage 4 patients to educate us about what they really need. While they are able, we should help them to flourish. And while they are disabled, we should work to empower them in ways that show that we recognize and respect that their lives are in limbo. We should strive to be that “bridge over troubled water” that Simon and Garfunkel sang about so eloquently, not just because we feel sorry for Stage 4 survivors, but because we understand just how valuable their lives really are, and we remain grateful that they are with us still.

Categories
grief Stage 4 cancer

Things I Will Miss About Him

I will miss seeing his little red sedan coming down the road.

I will miss his comings and goings, and the brief exchanges we had in passing.

I will miss seeing the bumper sticker on his car, knowing that the kids he coached thought enough of him to make an effort to help him in his hour of need. They got involved in the effort to fight cancer because of him. It mattered to them that he knew he mattered.

I will miss knowing that he touched many lives because he insisted on working, even through the tough, painful days. He didn’t quit.

I will miss the man who was an inspiration to adults and kids. Where will they turn when they have those moments of doubt? Who will show them what courage looks like, sounds like, feels like?

He wasn’t a superhero. He didn’t leap tall buildings in a single bound or fly through the air. I never saw him wearing tights and a unitard. What I saw was him shuffling along with his rollator, struggling to get to where he wanted to be. One foot in front of the other. One day at a time.

He was a decent human being who found himself facing a tough opponent. It was a scary battle. His foe was unrelenting. But he worked through the pain because he needed to believe that his life still counted for something, that he still counted for something.

There were times he doubted the path he was on. He even doubted himself. But he still persisted.

His future was clouded by cancer. This disease robbed him of the moments that normal people take for granted. He learned the hard way to make his life count.

He will not be around to see the kids he coached grow up. He will not attend their weddings or celebrate their life events. He won’t be here to cheer them on as they grow into the people they were meant to be.

But he will always be with them. He is a part of them now. They will remember him and be more compassionate with the people they meet in life. They will go the extra mile because they had the chance to learn that it counts.

And maybe the biggest lesson of all for them is the hardest to learn. Life isn’t fair. We don’t always get the breaks we deserve, no matter how worthy we are. Things happen that are beyond our control. We can only do the best we can with what we’ve got. We hone our skills and figure out ways to make improvements, so that we have the best chance to succeed. Sometimes we don’t get there, but playing is always better than being stuck on the sidelines, wishing we could participate.

He went the distance. He put in the time, the energy, the effort, even though it was often so hard to do. Those kids will remember that. And they will remember they were lucky to know him. And they will be better for having known him. And maybe one day, one of those kids…or two…or three…will decide that it’s their turn to guide young lives, to mentor them, to encourage them, to believe in them and what they can do.

We are here on this earth for such a short time. Dust to dust. Ashes to ashes. The spirit lives on in every heart. Rest in peace, Coach.

Categories
disability hearing aids hearing loss

I’m Not Ignoring You…I’m Deaf

I had business to conduct at a government office the other day. When I signed in at the kiosk, I clicked on the button on the electronic screen that identified me as hearing impaired. “Good,” I thought. “I will be able to speak with someone who is familiar with my situation.”
But even after doing that, I faced skepticism from the official with whom I spoke. Our conversation was one I have had hundreds of times before. It went something like this:
“I’m sorry. Can you please repeat that?” I asked politely. “I’m deaf.”

“No. You’re not really…are you?” I watched surprise spread across her earnest face. She just couldn’t believe what I was saying.

“Yes, I really am.”

That didn’t stop her from turning her head away or dropping the volume of her voice again and again. Clearly, she had had little experience with a person who lip-reads speech.

For me, this is a common encounter. I grew up being unable to hear. Despite adults telling me that I just needed to pay more attention to what they were saying to me, I was often clueless in noisy settings. There was too much going on for me to isolate the speech I was trying to understand.

Now a very experienced lip-reader, I often find people doubting my hearing loss. Some deny it. Some think I’m faking it. And some are just confused by it. After all, I don’t “look” deaf.

I’ve had numerous runners assume that I hear their footsteps pounding on the pavement as they come up behind me when I am out walking the dog. Some are polite about startling me. Others not so much. One nearly mowed me down as she blew past me. If I can’t hear you yelling a warning at me, I can’t step aside, can I?

I am always hypervigilant, since I cannot hear danger approaching. I track every sight I can because I never know what is coming my way. That’s because I was once violently attacked and the only thing that saved me from greater harm was the fact that I saw my assailant in the reflective glass as he snuck up on me.

But most people never notice the signs of my hearing loss. They never see how much work it is for a person who is impaired to function in a hearing world. Without my hearing aids, I struggle to follow conversation, especially because my hearing loss is asymmetrical. One ear is more damaged than the other. If you are talking to me on my weak side, you might think I am ignoring you. My peers in school thought I was a snob because I didn’t respond to their overtures. How could I? For every ten words spoken to me, I am lucky to recognize three or four by sound alone at 75 decibels.

I once had a psychologist, who was not actually treating me for anything, confidently announce to me that my hearing loss was the result of a language processing disorder. She decided I had a learning disability and couldn’t wait to explain to me what my REAL problem was. That’s the trouble with a so-called expert making a diagnosis without the facts or proper testing. What she didn’t realize is that when I sleep on my bad ear, not only do I not hear speech, I don’t even hear my super-loud alarm clock positioned barely a foot away from my pillow. I rely on the light on my phone to flash when a call is coming in. And when the kitchen timer goes off, the dog tries to be helpful by woofing. That’s because deaf is deaf. No amount of speech pathology is going to change the fact that I can’t hear sounds that most people hear.

I was twenty one and studying to be an educator, when one of my sage professors recognized the fact that my word recognition skills were so poor. She insisted that I have my hearing tested. My first audiologist was shocked that I had never been diagnosed, given how serious my loss was, but she said that I was so adept at reading lips, I had compensated for it. At the time, the technology we have now was not available, so hearing aids weren’t really an option.

These days, though, hearing aids can be programmed to better accommodate the range of frequencies that are affected by hearing loss. The first time I heard traffic moving on the highway, I was shocked. I had no idea it was so loud. Nor did I know that a flushing toilet or water running in the sink could make so much noise. And when an airplane flew over head when I was out walking, I was shocked by the roar of the engine. Garbage trucks on trash day and the school buses accelerating down the street are cringe-worthy. As for the screech of fingernails on the blackboard, I have no frame of reference for that, but I imagine it must be painful to hear. I am not looking forward to that experience.

Are there disadvantages to lip-reading? Definitely. Men (and even a woman or two) have often presumed I was coming onto them because I watched their mouths so intently during conversations. They thought it was sexy, flattered to think that I paid so much attention to them. All I was really trying to do was follow their speech.

If I am not looking at you, I am probably not hearing you, even with my hearing aids in my ears. Hearing aids do not take the place of healthy hearing. They are not part of a miracle cure that magically transforms my disability into a functional ability. So much depends what I am trying to hear. I don’t always immediately recognize sounds, especially if there is background noise. Then again, if a person yells loud enough to amplify the decibels to my hearing threshold, I can hear every word he or she says.

I can look in the rear-view mirror at a traffic stop and unintentionally eavesdrop on a stranger’s conversation. I can watch TV without the sound on, but only if I can clearly see the speakers on the screen. It doesn’t really matter if the conversation is in American English, British English, or Australian English. Those vowels and consonants are formed similarly, no matter what the nationality of the mouths that utter them.

And the advantages of lip-reading? I can’t tell you how many times I have served as an interpreter for other people. When my mother lost her hearing, I was able to step in and help her communicate with her health care providers and others. I do that now for my father, who has a profound hearing loss.

When I translate for someone else who is hearing-impaired, I always make sure I repeat back to the speaker what I think I have heard, so that I can convey the intent behind the words. I want to be as accurate as I can be because I know people with hearing loss often feel disconnected and disenfranchised from the hearing world. It’s about understanding the context and the gist of the conversation. Are we all on the same page? Have we resolved misinterpretations, misunderstandings, and mistakes?

I like to see things in written form whenever possible, because that way I can be sure I understood. I can see what I might have missed.

Some people think that if I ask for something to be repeated, it’s because I didn’t pay attention to what was originally said. I long ago gave up apologizing for being hearing-impaired. I do double the work that a person with normal hearing does to participate in a conversation. If I ask people to repeat something after I have announced I am deaf, and they still give me a hard time, I will terminate the conversation. That’s because they clearly aren’t interested in my needs.

Hearing loss is the silent disability, the one that most people don’t recognize as a real disability. In today’s world of technology, there are people who still think that any and all hearing loss can be “fixed” digitally. A little tweak here, a little tweak there is all that needed, right? Wrong. Just as you wouldn’t think that a person who navigates a staircase with crutches has good mobility or a blind person with a cane can fully function on a busy street, deaf people can’t simply overcome hearing loss with technology. Compensation is not the same thing as healthy hearing. People with hearing loss need to have their disability accommodated in reasonable ways. We’re not asking for you to fix us. We simply want to be able to function as well as we possibly can in a hearing world.

Categories
caregiver caregiver education carer

Caregiving Isn’t Real Work?

I can’t tell you the number of times I’ve had people remark that I don’t really work. I’d like to, but I can’t. It’s happened too often.

I’m always amazed, and to this day, I’m still stunned by that widely held belief. How do people think I pay my bills? And yes, I do have bills to pay.

What folks never see is all the time, energy, and effort that goes into being a good caregiver. I am constantly putting my own work and needs aside to handle this crisis or that crisis. I don’t know what I will face when I wake up in the morning, or go to bed at night.

The last two and a half months have been a case in point. My 92-year-old father woke up one morning, unable to walk. Things went downhill quickly from there. It took weeks to determine that he had spinal stenosis. He spent nearly every waking hour in agony, all because he can’t take the pain medications that would relieve it. A medical miscommunication turned out to have difficult consequences for him. Imagine being immobile for two months before you finally get back on your feet. It takes a toll on your heart, your muscles, your psyche….

The pain center was a godsend, but the staff is very busy and there’s a wait to be evaluated. I had to push for them to expedite treatment because of all my dad’s suffering. Once he had the procedure, he began walking again. He’s finally just about pain-free, but now he’s got to go through physical therapy again. That means I schlep him to the pool twice a week. All totaled, it’s two hours out of my day times two, but a great investment in my dad’s independence.

So, picture me pushing him in a wheelchair, loaded down with his swim gear bag, my purse, and his walker, which I sling over my shoulder on a luggage strap. I park the car in the parking garage, wheel him onto the elevator, push him through the maze of halls to the swim facility, wait for him to get into the pool, run upstairs to pay the insurance co-pay to the rehab facility, and then run back down to the pool to wait for him.

When I get home, I don’t just go back to my work. I have to do things like straighten out the billing errors from doctors. It’s amazing how many times I have been told that it’s the insurance company’s fault, only to prove otherwise. I’m not looking for a “told you so” moment. I’m looking for the magic fix that will straighten out the ongoing problem. Last month, we were told there was money due back to my father. Yesterday, a new bill arrived from the same office with new billing code errors and no refund. The billing department has trouble straightening out their own work again and again. If we had just gone ahead and paid all the overages this year alone, it would have been hundreds of dollars wasted. Caregivers and patients really do have to pay attention to bills.

But what really has me flummoxed is the popular notion that I need to take care of people, and therefore, people are giving me the opportunity by showing up. A few years ago, a relative invited herself over for dinner. Upon arriving, she took down the Christmas wreath and told me it was time to put it away. When you’re a caregiver dealing with serious medical issues, it’s really not a priority.

And then there was the relative who got all huffy when I said we couldn’t welcome a big group of people to the house. At the time, I was dealing with bleeding issues surrounding my dad’s cancer surgery. We had just lost my brother to brain cancer. Instead of the normal reaction of saying, “Is there anything I can do to help?”, or even acknowledging my brother’s death (that would have been the decent thing to do), I was on the receiving end of some very unpleasant behavior by a disgruntled relative who thought I was at fault. Why? Because I was already having the immediate family over for dinner. What was wrong with serving another ten or fifteen people?

People who are not full-time caregivers have trouble comprehending the concept that it’s real work. I recently found fingerprints on the dusty buffet, as a message from a family member that it was time to dust. This same relative goes around telling people I don’t have a real job. And yet, I’m the one person who does all the “fixing”, whether it’s with the bank, the lawyers, the utility companies, or any of the other entities who pop up at the most inopportune times.

I am the person who has to make sure that all of the medications are tracked, dispensed, and taken properly. At one point recently, my father had twenty four pills to swallow in a day, and that doesn’t count the weekly medications. Which pills have refills? Which don’t? Which doctor treats what conditions?

And that doesn’t count all of the loads of laundry I wash and special meals I cook. With so many medications, there are serious issues that need to be accommodated, food-wise. Can’t have the sodium found in processed foods. Fiber overload causes serious problems, especially with certain medications. Have to avoid certain foods with certain medications. The list goes on.

I’m up every morning at the same time, following the usual protocols. I work when I can on my own projects, constantly interrupted by this crisis or that crisis. Some nights, I don’t finish working on my own projects until midnight. When his health improves, it’s crunch time for me. I get as much done on my own projects as I can, because I know that I can hit a major roadblock at any bend in the road.

As a caregiver, I always have a bigger “to do” list than I have time to complete it. I haven’t worked much lately on my own Bucket List because my dad’s limitations are all too real. He needs care. He needs compassion. He needs comfort. I’m not a caregiver because I have a psychological need to care for people. I’m a caregiver because I love my dad and I want him to remain as independent and active as he can, for as long as he can be. It’s about quality of life, not quantity. I work with him to get him over the bumps and humps on the road of life. That’s really the key word. I work with him. I don’t do for him, I do with him. It’s a cooperative effort that makes sure he has a voice in what goes on in his life.

So, if you’re a caregiver and you can relate to what I have written here, take heart. Don’t let the “civilians” who don’t understand what life in the trenches is like get you down. You know how hard you work while you toil at home. You know why you do it. And you know that at some point, everyone is going to need help living. What goes around, comes around. Be kind to your fellow caregivers and offer real support. And don’t be afraid to stand up for yourself. It’s not an easy job we do, but we do it out of love and respect. There’s no shame in that.

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Uncategorized

New Guide for Caregivers Taking Care of Seriously Ill Patients

Lately, I’ve been so busy being a caregiver, I haven’t had a lot of time to post much. But I did manage to pen a short guide about helping someone you love when serious illness strikes:

The biggest toll that a serious illness takes on a loved one often isn’t on the body. It’s on the mind and spirit. It’s hard to stay focused and hopeful when everything is changing. That’s why it’s so important for caregivers to understand the psychological impact of illness.

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Categories
caregiver education medications

A Practical Caregiver Mindful Minute


Here’s a tip for people who are taking lots of pills every day:
 

Categories
advanced cancer disability handicap

The Woman Who Had No Shoes

There once was a woman who had no shoes. She had a fancy car. She had money. She wanted for nothing. But she had no shoes, at least none that have ever been worn.
 
Beware! She’s loose among us. You will recognize her by her shoes. Her soles are unmarked. There is not a scuff, not a scratch, not a drop of mud, nor a rain drop, nor a single tear upon them.

How can this be, you wonder? I will tell you. It’s because she has no soul. She has never walked a mile in anyone’s shoes, not even her own.

In this day and age of endless rancor and bitter attacks, we have forgotten to be civilized, and as a result, the most vulnerable among us have suffered grievous harm to the heart and emotional distress for the soul. Case in point?

I have a very dear friend who has struggled with cancer, cancer treatment, and a myriad of complications for several years now. She happens to be one of the finest people I know. She’s a teacher, whose wise counsel has shaped many minds. She’s a mentor to children whose lives have been torn apart by circumstances beyond their control. She’s a loving and kind daughter, who cares for parents now challenged with their own health issues. She’s a writer, whose eloquent voice has inspired so many of us. She’s a musician, whose songs have delighted crowds. And now, she’s a human being who deserves to be defended in the face of an unconscionable attack.

She was recently out in public, hoping to have a pleasant time after suffering through more physical pain than any person should have to endure. Slowly making her way from the curb onto the sidewalk, she was assailed by verbal abuse that spewed forth from the mouth of the woman with no shoes.

Just imagine how much energy it required for my friend to put one foot in front of the other as those words stung. Picture the effort she made to move each leg as her heart filled with tears. There she was, minding her own business, determined to get on with the business of living her life. And what did she get for it? A vicious insult so outrageous that I will not even repeat the gist of it, because it was so very wrong. This kind, tender-hearted soul was attacked by a mean, self-absorbed woman with no shoes. For those of us who love her, our frustration with the injustice of it all knows no bounds.

My sweet friend is a woman of many shoes. She is the light in a dark world. Every sole of every shoe she has worn is marked not only by her own experience, but by the depth of her love, compassion, and wisdom. She has a closet filled with these relics of her journey through life, and each pair has a story to tell.

The woman with no shoes has made no mark of her time here on Earth. Tis a poor, loveless creature that has never known the joy of being, an empty soul that has never known the treasure of having real love shone upon her. I have no doubt that love is all around her, but until she puts on a pair of shoes that belong to another human being, she will see and hear nothing.

Every time we learn from the people around us, we are made better by it. Every time we put ourselves aside and we seek to see the world from another’s perspective, we grow in wisdom and compassion. It’s not enough to recognize the differences that separate us. We must take that understanding and make sense of it. Who we are and what we do defines us as human beings. It is our responsibility to make the world a better place, not through tearing it apart, but by shaping it with loving hands.

If the woman with no shoes had taken a single step in any one of my friend’s shoes, she could have been transformed. That’s how powerful and profound my dear friend’s wisdom is. To embrace life with such zeal in the face of overwhelming adversity has created a superhuman spirit that knows no bounds. We need more superheroes in this day of nasty, vile, antisocial interactions.

But to be a superhero, you must walk in many, many shoes. Not just the comfortable ones. Not just the ones that fit, or look good, or attract compliments. You must slip on the ones that pinch to learn about the pain of being narrow-minded and the ones that are too big to understand how much room you have to grow. Your journey begins and ends with you, and how far you are willing to go is something you must decide. When you become tired of the endless bitterness and rancor, put on a new pair of shoes. And as you wear out each subsequent pair, take what you have learned and share the wisdom. That is the power of shoes that have been worn well.