WHY YOU AND YOUR 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.

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.

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.

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.

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.