Tuesday, July 17, 2018

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.

Saturday, June 23, 2018

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.

Apple, B&N, Kobo, and other retailers -- universal link

Tuesday, March 20, 2018

Wednesday, February 14, 2018

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.

Monday, October 23, 2017

Flu Season and Compromised Immune Systems

As flu season looms before us, I am reminded of how very vulnerable people with compromised immune systems are. How can you make sure that you don't become "Typhoid Mary" or "Typhoid Marty" to someone you love?

1. Be sure to get a flu shot.

It won't necessarily prevent you from getting the flu -- there are so many strains out there. But it protects you from having a severe case, one you might accidentally pass along to someone who is vulnerable. Some treatments, like chemotherapy and steroids can knock the immune system for a loop and prevent the body from fighting off infection.

Also consider getting the pneumonia shot if you are of the recommended age. If you are caring for someone who is seriously ill and can't get the shot himself or herself, it will be another layer of protection for your loved one.

And also remember that vaccines are important. I have had more than one cancer specialist mention just how dangerous it can be for a patient too vulnerable to be vaccinated to have to fight off a disease because he or she was exposed to a disease by a healthy, but unvaccinated individual.

2. Take cover.

Passing germs and bacteria among family and friends can wreak havoc with a compromised immune system. There's no need to panic. Be mindful when you sneeze or cough. Don't wipe your nose with your hand or spray everyone with your sneeze. Tuck your face into the crook of your elbow or use tissues to catch the cough or sneeze. As the old advice goes, "Say it, don't spray it!"

3.  Wash your hands frequently.

This is especially important when handling medications and food for someone with a serious illness. Sing "Happy Birthday" from beginning to end while you scrub up. Plain soap (not anti-bacterial) and water is best for this. Rinse well.

I have a container of sanitizing hand wipes sitting on a table in the TV room, not just for my use, but also for visitors when they come. It's easy to dab or swipe your hands when the product is available for all to use.

I have sanitizing cleaning wipes with bleach in the bathroom cabinets, so I can quickly disinfect. You can also spray surfaces with a disinfectant. Follow the instructions on the labels, to be sure you use the product effectively.

3. If you are sick, stay away.

That sounds cruel to many people, but it's a reality for someone whose body is under tremendous stress because of serious illness. If you feel a cold coming on, you can inadvertently pass that virus to a loved one who doesn't have the ability to fight it off.

Don't think that it's enough to "sit over there" and visit with a seriously ill person. You can't control every molecule of oxygen in the room or every square inch of surface you touch. If you are in a contagious stage of a virus, or you have an infection that can be spread by contact, you can do great damage. Call, instead of visit. Skype, if you must. But don't put someone else's life in jeopardy to satisfy your own desire to visit a loved one.

4. If you're not the caregiver, don't drop in, expecting to be welcomed with open arms. Call first. Ask if it is convenient for the loved one to see you. Let her needs or his needs come before your own desires. Seriously ill patients need rest. They need to sleep. They need to conserve the energy they have and put it towards healing. You'll often find that there are certain times of the day when they just can't function. Their bodies are depleted of strength, or the rigorous treatments they are going through are so grueling, they struggle with everything from diarrhea to vomiting to headaches. If that is the case, send a card, a note, an email, or even a text, to let your loved one know you still care. You're not going away or abandoning her or him. You're merely waiting on the sidelines until such time as a seriously ill person has the stamina to engage in social activities.

And if you're not sure what to do, ask. The patient and the caregiver often welcome company when there are good days. When you are thoughtful and considerate, you will likely shoot to the top of the "favorite guest" list, and you might even find yourself invited on a regular basis.

For more help as a caregiver, visit: The Practical Caregiver Guides

Saturday, October 14, 2017

What the Heck Is Palliative Care?

For a lot of people with serious illness, palliative care is a life-saver. Find out why:

For more help as a caregiver, visit www.practicalcaregiverguides.com

Thursday, September 21, 2017

When the Time Crunch Crunches a Family Caregiver

Time. Oh, I wish I had some! Between the constant issues that crop up and the emergencies that can't be predicted....

That is the usual plight of the family caregiver. Every day, I wake up thinking I'm going to take on the world. I have so many goals to accomplish. I have my "to do" list prioritized. But then real life takes over.

It took me a long time to figure out how to do what I needed to do, what my loved one needed me to do, and how to deal with all of the rigmarole that pops up unexpectedly, monkey-wrenching my life.

Short and sweet. Fifteen minutes here. Twenty minutes there. It's the only way I can juggle all of the tasks, errands, and chores of my day and night as a family caregiver.

I was talking to a high school classmate the other day. She admitted she struggles with this issue too. She has her own house forty minutes from her mother's. Back and forth she goes, taking care of meals, the house, and other assorted issues.

How best to describe a typical day for a family caregiver? It's like "Groundhog Day" over and over again. And again. And again. And again....

She asked me if I do a lot of cooking. I looked at her and laughed. I cook, but like a restaurant chef. I only make dishes that take me less than fifteen minutes to prepare. I don't have time to do elaborate meals, although I'm a good cook. I don't have time to fuss. My mind is set on fifteen minutes here, twenty minutes there.

Even when I pull the crockpot out to make my own spaghetti sauce, it only takes me fifteen minutes to chop my ingredients, pop the lids on the cans of tomatoes, and add my herbs and spices. Sure, it cooks for hours, but it doesn't need my help. And the best part is that I use what I need and freeze the rest for another night.

I learned that I can throw together a single apple tartlet with a quarter wedge of a Pillsbury pie crust, an apple, some sugar and spices, and a little butter. I peel and chop that apple like nobody's business, while the rest of my dinner is in the oven. Peach cobbler? No problem. I mix flour, old-fashioned oats, brown sugar, butter, and cinnamon together for a topping to go on a chopped, spiced, sugared, and floured peach. My dad gets to have a nice dessert that is still warm from the oven. The aroma is lovely, but it takes me less than fifteen minutes to prepare. Nom-nom-nom.

I break up my work day by squeezing my father's priorities into my schedule. What is on his "to do" list? Am I taking him to a medical appointment, the bank, or Town Hall? What task does he need to accomplish today?

And what is he going to do for socialization? Usually, we walk the dog in the park. It gives him exercise and the chance to chat with people. It helps him feel connected to this world. That's fifteen minutes well spent for both of us. The dog enjoys it too.

But I also have to take care of the house and yard, in between dealing with insurance issues, prescriptions, the technical glitches with his current project (oh, those pesky formatting problems are going to drive me bonkers!), and other assorted conundrums that seem to trip me up just when I am hitting my stride.

So I focus on fifteen minutes here, twenty minutes there. These little snippets of time allow me to create some semblance of sanity in the middle of an unpredictable and chaotic day. They allow me to dedicate serious time to my own work, so I can pay my bills, while still getting things done that need to get done.

You can't really call this glamorous work. This week, I tackled the mouse problem. In an old house that was built in the 1700's, it's not unusual to have the little critters creeping into the little nooks and crannies of the old root cellar, and from there, making their way up to the kitchen. But I refuse to share space with them. When I found they had invaded the insulation in the basement and used it for a comfy mouse house, I ripped it out, set traps, and began to evict them. As soon as I have controlled the rodent population, I will install mouse repellent, because I don't want to have to go through this all winter long. I admit this chore took me longer than fifteen minutes to accomplish, but I did it in fifteen-minute increments, breaking the task up over the day. Fifteen minutes for the hardware store. Fifteen minutes for the cleaning, heavy-duty disinfecting, and trap-setting.

Sometimes, when I finally get around to moving a chore up on my "to do" list, it makes me laugh. Today was no exception. I had a few minutes at the beginning of my day and used them to tidy up the laundry room. Lo and behold, that laundry cart caught my eye, with all its dust. I admit that, unlike my late mother, I don't fuss with laundry issues. Everything I need to wash a load is right there on the top shelf.

Imagine my surprise when I wheeled out that little cart and found all the laundry doodads my mom left behind when she went to that big, fluffy, pristinely white cloud in the sky. She had ammonia, glass cleaner, bleach pens, and stain sticks there, collecting dust. I found a whole bottle of Febreze, half a box of Snowy Bleach, measuring cups, and lots of those sample packets that you get in your Sunday newspaper or at the grocery store, some of which had exploded all over the shelf. Yes, they do apparently expire eventually....

It felt good to throw out all of the items I don't use. But I admit that seeing my mom's handwritten note on the half-empty bottle of Resolve made me pause. I might as well find a use for that.

I did, however, dump the mega box of baking soda. I think that after seven years, there's not much pizzazz left in the powder.

I got it all cleaned up in fifteen minutes. And yes, I will go back to just using the top shelf of the cart. That's the reality for a busy family caregiver. But that's okay. I got to laugh, thinking about my mom looking down and shaking her head in wonder at my laundry skills. She would have appreciated my "fifteen minutes here, twenty minutes there" philosophy. In fact, I think she would have come to embrace it. Every time a busy family caregiver chips away at the "to do" list, it helps to maintain the balance between work, home, and family. We can't do it all, so we prioritize. It's how we build a little success into every day.

The challenges of caring for a loved one can sometimes seem insurmountable. But when you are able to find the balance between meeting your own goals as a person and caring for your loved one, it all becomes doable. You should never lose yourself in the chaos and confusion of caring. Whenever you start to lose sight of your own goals and your goals as a family caregiver, break down the tasks into manageable units of "fifteen minutes here, twenty minutes there." You might be amazed at how much you can accomplish.

And don't forget to reward yourself with a break. Grab a cup of tea and sit a bit. Go for a walk around the block and clear your head. Fifteen minutes here, twenty minutes there....

Wednesday, August 30, 2017

What Does It Take to Be a Stage 4 Cancer Survivor?

There was a time when a Stage 4 cancer diagnosis meant a patient only had days, weeks, or maybe a month or two left of living. But over the last decade, with so many advances in treatments, more and more people are living with Stage 4 cancers.

But what does it take to do that?

For the patient:

1. A great medical team that keeps up with physical issues
2. Good support for daily living, medical treatments, and complications
3. Palliative care that enables the patient to be as active and comfortable as possible, by managing pain, addressing social, psychological, and physical challenges

That makes it sound easy to survive Stage 4 cancer, doesn't it? As long as you have doctors, nurses, and other professionals on board, it's a slam dunk. Only it's not.

It's also about what the patient brings to Stage 4 cancer. What are you willing to sacrifice to survive? How much work are you willing to put into your effort? And who will be at your side while you do it?

Imagine needing to have ongoing chemotherapy treatments that knock you off your feet. Not only do you have to psych yourself up to get to the cancer center for those, you also have to deal with the side effects (short and long term), the complications, and even the logistics of living with Stage 4 cancer.

Not everyone is willing, able, or capable of undergoing such a rigorous and challenging life. But for those who are, their work as survivors is nothing short of amazing. And every time someone accepts the challenge of living with Stage 4 cancer, we creep closer to the treatments that will one day eliminate the disease.

Surviving Stage 4 cancer means having a strategy, a plan. You can't just wing it. You can't just meander through your day. You have to be highly motivated to push on through the sometimes daunting challenges. Is it worth it? That's a question that only the person with the cancer can decide. If you're talking about surviving, you're really talking about living.

To live with Stage 4 cancer, you need to:

1. Engage in meaningful activities that enhance your quality of life
2. Have a sense that you are able to manage the challenges in your life to your benefit
3. Feel emotionally, mentally, and physically connected to people that matter to you
4. Have a team of people who can support your true needs and give you what you need to go on

One of the most important things I have learned from Stage 4 survivors is that what we supporters say and do matters. We need to take our cues from the people who are struggling. We can't assume to know that magic pill that will make it all better.

-- It's not our job to push treatments or give advice. That's what the medical experts are doing, and they have far more experience in the field than we do.

-- Good listening skills are important for supporters of Stage 4 cancer survivors. Recognize the need to vent when things go wrong. Understand the emotions that are strained and realize the toll of the physical, mental, and even emotional challenges of being a Stage 4 cancer survivor.

-- When in doubt, offer your love, your thoughts and prayers, your good wishes, your hugs (real or virtual).

-- Always open the door to hope. Hope for less pain. Hope for a better day. Hope for success. Hope for positive tests.

Why are these things important? When a person is facing such challenges, it's the little things that will matter most. An MRI that isn't all negative is better than an MRI that shows a massive tumor. A complication that has a potentially good outcome is better than one that is devastating and untreatable. When we supporters focus on the positives, we encourage hope in a heart that has already taken a beating. When we recognize that the complications are scary, rotten, disappointing, we share our loved one's concerns. By balancing our own reactions in an even-handed way, by understanding how very challenging it is to manage Stage 4 cancer, we become the light that shines in that dark hour.

The truth is that Stage 4 cancer survivors live with stress, fear, and worry every day in one form or another. Every new ache or pain could signal a spread of the disease. Sometimes there is a new tumor here, a new tumor there. But the treatments that are currently being used in advanced cancer management often mean Stage 4 survivors are gaining ground.

Who knows whether doctors will soon add a Stage 5 to reflect the new treatments that allow the people we love to continue living with the disease at Stage 4 for years, not months. I think that day will come.

In the meantime, if you know someone who is living with Stage 4 cancer, be sure that you fit your support to that person's real needs. When in doubt, ask what the person really wants from supporters. Is it encouragement? Is it acceptance? Is it a ride to treatment? Is it the chance to forget that cancer has wreaked havoc with one's life?

If you really love someone with Stage 4 cancer, reach out and be prepared for the realities of cancer management. It's scary at times, it's constantly challenging, and it's critical that we be there to offer meaningful support. Cancer isn't for the faint of heart. But for our heroes who insist on surviving it to the best of their ability, our job is to make the quality of that life a priority. Joy, love, laughter, acceptance, and appreciation for the good days is what gets a survivor through the bad times. Those of us who love people with Stage 4 cancer know that our lives are better, richer, and fuller because of them. They live with little miracles every day that open our eyes to what matters most. Love.

Saturday, July 1, 2017

Does a Patient's Personality Impact Your Caregiving?

Grant Wood -- "American Gothic"
Is your loved one a concrete thinker or a romantic at heart? Is he or she competitive or cooperative? Type A or Type B? Meat and potatoes every night or a seeker of exotic foodie experiences?

You may not consciously think about your loved one's personality when it comes to patient care, but maybe you should. When disease or illness takes center stage, your loved one's coping skills will be affected by how he or she views the world and interacts with it.

I've known plenty of patients, especially those going through cancer treatments, who have specific emotional support needs.

For someone who is used to being proactive, a cancer diagnosis is often followed by a plan of attack. If Marissa is used to tackling tough situations with action, expect her to do the same when she is hit with a need for major surgery.

If Phillip is used to coming to grips with a problem by analyzing it from ten different directions before making up his mind, expect him to do the same when the oncologist sets his options in front of him. He is likely to weigh each option over and over again until he is certain he has chosen wisely.

If Robin finds herself at a crossroads in the cancer situation and she usually takes things to heart, expect that she will be caught up in the emotional quagmire and help her to do what she needs to do to get through this challenge. Her emotions are likely to prevent her from moving forward. No amount of nagging is likely to help. She needs to regain her belief that life can again be good before she can actively participate in recovering her health.

And if Tom's usual reaction to bad news is to get on his high horse and wave his sword into the air as he rides off to slay the dragon and protect his castle, be prepared for that. There will be lots of noise as he psyches himself up to attack the beast that has invaded his body and disrupted the sanctity of his kingdom. If this is what Tom needs to find the courage to fight, that's just his personality gearing up to succeed.

Mary Cassatt -- "Young Mother Sewing"
We all have our personalities and our quirks, even when we are healthy. But when a loved one is ill, that's often the time we see personality come to the forefront.

Sometimes romantics have a hard time dealing with all of the facts of disease and disease progression. They need to keep an emotional distance from reality in order to maintain as much hope as possible.

Those folks who are very grounded in reality actually tend to resent any effort to paint a rosy picture. They want the cold, hard facts, so they can beat back the threat.

Can you see now why it is so important to understand your loved one's personality in order to provide the best kind of physical, mental, and emotional support?

For people who are used to driving directly from Point A to Point B, they will react to any obstacles in the road with their usual persistence. For people who like to wander on the road of life, they will mourn their inability to continue their adventures. How do you, as a caregiver, cope with that?

You may notice that your dad, the experienced businessman, insists on doing as much work as he can while he's going through chemotherapy, even when the medication causes side effects. As a caregiver, it's your job to help him through the process in a way that doesn't raise his hackles. It's important to help him maintain as much of his quality of life as is possible. So, while you may be tempted to call him a control freak, he is using his personality to cope with the fact that he's been sidelined and he's doing what he can to get back into the game.

Edvard Munch -- "The Scream"
Or you may notice that your dearest friend, Anna, is absolutely devastated by her breast cancer diagnosis and just wants to hide away at home. How can you, as her caregiver, help her to locate her "motivation button" when she's blown away by the reality she now faces and is ready to surrender?

Motivation is an important component in fighting a serious illness. Patients who believe that the fight is worth the effort are far more likely to take their medications appropriately and consistently, but only as long as it seems to have a reward attached to it.

For people diagnosed with diseases like cancer, there are often times when it is nearly impossible to see the light at the end of the tunnel. When a patient loses his or her appetite, the weight loss can pose a serious risk. And when a patient thinks there is no point in even trying to fight the disease, that's  likely to result in a poor outcome.

When patients are at their most vulnerable, how we interact with them can make all the difference. Do we want to trigger neurotic behavior by heightening fears and planting seeds of doubt? Do we want to protect our loved ones' sense of mastery, of optimism, by recognizing that each patient has inner strengths to call upon in times of crisis? If you know your loved one has faced difficult times in the past and has survived them by determination and resolve, isn't that something you want to bolster now? Remind him or her of previous challenges that seemed impossible, but were won.

Too often when a loved one is challenged by the stress and pressure of healing, or dealing with medications or physical issues (like brain tumors), the sense of loss of self is tremendously impacted by a lack of coherence about the illness. It's difficult to cope with so much uncertainty. By keeping things on an even keel, family caregivers offer their loved ones a semblance of sanctuary. Who doesn't want to feel that there is a "safe place" to go to escape the constant reminders of illness?

Leonardo Da Vinci -- "Mona Lisa"
That raises an important point for people who like to vent. Not everyone else does. If you feel like raging against the beast your loved one is facing, but your loved one just wants to put it aside and do something constructive, you may not be helping when you insist your loved one gets in touch with his or her emotions. Some people actually need to step away from their emotions in order to get through difficult challenges. By accomplishing tasks that have intrinsic meaning for them, they build self-confidence and self-esteem that help them get through the tough times.

On the other hand, if your loved one needs to vent, you can be helpful to him or her by engaging in conversations that respect and appreciate the insights offered. It can be cathartic to spill those scary emotions. It doesn't always require that caregivers put Band-Aids on the emotional wounds. Sometimes when we become good listeners, we give our loved ones the opportunity to sort out their emotions and to make decisions about how they want to live their lives in the "new normal" world.

We caregivers are the wind beneath the wings of our loved ones. It's not our job to tell the people who are going through such health challenges what they should or shouldn't do. But we can help them by understanding how to engage their personal strengths through understanding what makes them tick. By recognizing how they see the challenges they face, we can often help to point them in a positive direction and give them the right kind of support, the kind of support that restores as much of their personal power as possible.

And at the same time, we should also consider our own personality types. If you're a romantic and you're overwhelmed by your husband's Parkinson's diagnosis, you're going to have to find a way to come to terms with his situation in a way that makes good sense to you. You will have to understand that your love and your kindness will have the biggest impact when you take your cues from your husband. If he says he's is coping, accept that answer and find out what he wants from you. If you feel emotionally overwhelmed, find a relative, friend, or wise counselor who is capable of acting as your sounding board, especially if your husband doesn't have the strength to be your rock at the moment.

If you're a busy bee, constantly fussing over your mother when she's recovering from surgery, you'll probably be on the receiving end of a lecture that makes you feel like you're six years old once more. Once you understand that you're driving her bananas with your constant activity, you'll be able to step back a bit and stop stressing her out. Mothers can sometimes feel incredibly guilty when their children have to take care of them. When we make it seem like less of a chore and more of a pleasure for us, by sharing conversation, companionship, and comfort, we make everything more copacetic.

For more help with your caregiving, visit The Practical Caregiver Guides

Tuesday, April 4, 2017

Why an E-Reader Is a Caregiver's Sanity Saver

Most experienced caregivers will tell you that there's a lot of "stuck in place" time when caring for a loved one. We wait during tests, treatments, and appointments. We hang around the house because we need to make sure our loved ones are safe. If they're hospitalized or bedridden, we do a lot of sitting at their bedsides.

I remember just what a lifesaver my e-reader was when my brother was hospitalized. He hated to be alone because he was so vulnerable. I spent hours reading book after book while he slept. It didn't matter that the room was dark. I bought an e-reader that lit up.

That's the beauty of an e-reader over a traditional paperback. You can sit in a dark room while your loved one has a medical test (vascular, cardiac, etc.) and enjoy a wild thriller.

But you can just as easily read a nonfiction book, a magazine, or even a newspaper. What's more, you have an extensive library at your disposal. Every couple of months, I go browsing through the virtual aisles in search of a good read. I've discovered authors I wouldn't have found on traditional bookstore shelves.

I've taken chances on books that turned out to be duds. It helps to preview the book before you download it. But I've also found some really fun reads.

As a caregiver who has dealt with some very intense caregiving situations, I can tell you that stress is a very real issue when a loved one has complications or is in precarious health. I counted on my e-reader to whisk me away from my troubles. Even if I only read ten minutes here or ten minutes there, I could escape for that little bit of time. I could think about something other than my concern about test results or what terrible surprise would pop up next.

Best of all, I could tuck it into my purse and pull it out when I had a few minutes. When I pushed the button, I was right back where I left off.

Don't get me wrong. I still love paperbacks, especially if I'm sitting on a chaise lounge by the water on a fine summer's day. But paperbacks don't glow in the dark during a power failure. When the lights are out, I have the perfect excuse for curling up to read. That's why I always make sure to recharge my e-reader right before a storm blows through.

Does it matter what kind of e-reader you buy? Heavens, not to me. I'm not here to sell you one. All the big names offer their own versions with different features. I'm just telling you that having one handy during caregiving was a lifesaver for me. It kept me company through the long vigils, through the medical appointments, and even through hospice for a loved one. I still look forward to having an excuse to pull it out and read, although I confess I am grateful that my caregiver duties are lighter now.

If you are worried that you will have to spend a fortune to purchase digital books, don't. Most public libraries offer you free downloads from their collections. Many authors offer the first book of a series for free, special sales, or even giveaways. You can get free books from LibraryThing and GoodReads in exchange for honest reviews.

And the best thing about e-readers? They don't interrupt you with incoming phone calls. It's all about the reading. So, when you're feeling penned in by your caregiver duties, consider getting one. It's a doorway to your next great armchair adventure.

Sunday, March 26, 2017

When the Ghost of Cancer Interferes with Ordinary Pleasures

It happens so often for people with cancer. A remission ends and the cancer returns. Sometimes it spreads to other organs; sometimes it is easily contained. But the truth is that any patient who finds a return of the disease is going to feel crushed by the reality. That's a pretty devastating concept to wrap one's head around.

But what happens when people who thought your loved one's cancer had been successfully treated realize it's back? How do they react and what impact does that have on your loved one?

It starts with the looks of pity. Maybe the hair falls out again when chemo starts up. Maybe there are visible radiation burns. Maybe it's impossible to miss the surgical scars. People are shocked. Some are horrified. Some want to know what the prognosis is. Is your loved one going to live or not?

It's followed by disappointment. Or horror stories of what other cancer patients have been through. Or awkward silence. Or blame, as if cancer patients somehow did something wrong to get the disease.

The truth is many people don't know how to deal with someone else's disease. My mom once had a friend tell her, without any sugar coating of it, that she just couldn't handle people being sick. Given the fact that my mom was struggling with lung cancer and a host of other health challenges at the time, having a friend so bluntly reject her was incredibly hurtful.

And I've seen other relatives and friends have similar experiences throughout the succeeding years. I even recently heard a dear friend remark about how hard it is to go out in public, now that her cancer is back. This isn't a case of an overactive imagination. Your loved one isn't being overly sensitive. He or she is picking up on other people's very real discomfort.

As a caregiver, it's important to understand two things:

1. Your loved one will be seriously affected by the public reaction to his or her cancer. It will cause any number of reactions -- anger, annoyance, frustration, sadness, depression, disappointment, or even dismay. Whatever the reaction, it will take its toll on your loved one's psyche.

2. You cannot change human behavior with a wave of your hand, and you certainly can't force people to behave appropriately around your loved one. There will be loving and supportive people amidst the bumbling idiots and thoughtless jerks, but it still hurts your loved one to be segregated by cancer.

What can you, as a cancer caregiver, do to help your loved one through the difficult challenges of treating a returning or spreading cancer? Take action. Know your loved one's interests and find ways to adapt social opportunities to meet his or her cancer needs. It's still important for cancer patients to get out and be a part of life, but realize that some situations are just too emotionally overwhelming at times. Be proactive in planning adventures.

If the local coffee shop is no longer the welcoming place where everyone knows your name, it's time to go exploring. Plan trips to new places, to places where people don't know you or your loved one. Go to a museum, even if you have to push your loved one in a wheelchair. Take a boat trip down a river. Find a charming new coffee shop in another town and make the trip part of the adventure. Discover a new cafĂ© that serves Sunday brunch. Go to a park where you and your loved one can sit and enjoy the birds singing while you eat a picnic lunch. Go to the movies when the theater isn't crowded. Take a stroll on a quiet stretch of beach. Go to the aquarium (which is usually dark and has plenty of observation benches) and sit for a while to watch the fish swim.

Whatever you do, don't let this kind of thing determine what your loved one can and can't do. Don't let other people's inability to cope with your loved one's cancer deter you both from activities you enjoy together. Help your loved one continue to be a part of life, because tomorrow is promised to no one. Until that fat lady sings, keep your loved one focused on pleasure and joy by managing the environment. Keep hope alive.

Wednesday, March 22, 2017

Dear UnitedHealthcare

The other day, my dad received nine individual letters from you, informing him that the hospital where he has been treated for more than fifty years was no longer an approved provider as of April 2017.

At first, my father thought it was a mistake, a computer glitch. But as he read the names of each of the nine physicians no longer approved to treat him, his stress level increased. He began to worry about what was going to happen to him.

What if there was an emergency? Even if he went to the hospital by ambulance, there's no assurance his physicians could treat him, consult with emergency physicians treating him, or even do the follow-up care he has come to count on. And the hospital care he depends on would not be covered by his insurance policy. He'd have to go to another hospital for treatment.

This morning, he informed me that he was concerned that he had had too many health issues this year and last. Maybe UnitedHealthcare was trying to contain its costs by not allowing him to be treated at the hospital. What was he going to do if, God forbid, something happened to him?

And how was he going to replace all of these physicians with new ones? What if the rest of his physicians were also added to the list of "non-approved" providers?

Me? I know better. I did my research. It's negotiation time for UnitedHealthcare and the provider. In fact, UnitedHealthcare has a long history of using this tactic when things don't go well. What is wrong with that?

I'll tell you. Every time a patient is dragged into the negotiations by this kind of intimidating behavior, bad things happen. Not to UnitedHealthcare. Not to the provider. To the patients and their caregivers.

As a caregiver advocate, I have a lot of friends who count on good healthcare to stay alive. Friends who survived cancer and are in various stages of cancer management. How does this kind of negotiating tactic affect them? The last thing someone who is struggling with chemotherapy needs to hear is that he or she is going to be cut off from care without any explanation, all because UnitedHealthcare can't agree with the provider.

And what about all of the other people with UnitedHealthcare insurance...the elderly, like my dad...those recovering from surgery, in rehabilitation, in failing health...those with catastrophic illnesses like COPD, Parkinson's, or cystic fibrosis...or, worst of all, those patients now headed towards hospice care? What are they to do when they are already overburdened with serious illness?

I'll tell you what happens in those cases. Patients panic. Caregivers panic. They frantically contact their providers to find out what to do. Or, worst case scenario, they resolve not to seek treatment when needed, because they can't have their normal provider. They go without because the burden of transferring, as my father was informed he would have to do, to an "approved provider" is too much damn work.

So, UnitedHealthcare, let me give you a heads up. If any patient who is covered by your insurance policy is harmed as a result of your ridiculous negotiating tactic, it's on you. Be prepared for the onslaught of policyholders holding you accountable for the negative impacts on their health. Be prepared for the patients who suffer needless health problems because you scared the bejesus out of them, stressing them out at a critical juncture in their illnesses. Be prepared for the caregivers who line up to hold your feet to the fire for making their lives more difficult when they are already exhausted from caring for their loved ones. But most of all, be prepared for the families who lose loved ones because patients think they somehow brought this situation upon themselves. It's unconscionable that you used policyholders as fodder for your negotiations, tossing them under the bus because you cannot get the provider to bend to your will.

The moment you began to send those letters to your policyholders, informing them that their providers were about to be cut off, you abused your policyholders. You did actual harm, all because you wanted to manipulate your policyholders into pressuring their providers to comply. You could have explained in the letter that you were in negotiations. You could have told your policyholders you were working to come to an agreement. That would have been the honest thing to do. That would have been the honorable thing to do. You chose not to do that. Instead, you counted on that shock and awe to move things forward at the negotiating table. That was an unacceptable maneuver. Shame on you.

Wednesday, March 8, 2017

Why Keeping Hope Alive Is Critical

These days, with more advances in cancer treatments, survival rates have improved. But there is often a price to pay. Side effects can be brutal. Complications can be devastating.

Cancer attacks more than just the human body. It crushes the human spirit. The most confident person can be devastated by the loss of hope.

Doctors and nurses often treat the cancer patient's body, but not necessarily the mind. And yet, the mind is one of the greatest tools available in cancer management. How a patient perceives his or her cancer really does matter.

If a patient feels there is nothing to gain from treatment, it's unlikely that he or she will bother to:

-- Take medications appropriately
-- Eat as healthy as possible under the circumstances
-- Get enough rest
-- Avoid unnecessary risks to the immune system

Cancer is stressful. And when that stress builds up and becomes overwhelming, patients often surrender to the sense that it's futile to even try. It's easy to throw in the towel when you are in pain and unable to handle all of the horrible side effects. Patients often presume it's all about the cancer. But sometimes that can be a mistake.

There are so many issues that can crop up in advanced cancer management, when the options are fewer and the regimen is rougher. If a patient is undergoing chemotherapy on an ongoing basis, dehydration, infection, neuropathy, and steroids are just some of the complications that can wreak havoc with the human body. After a while, it's hard to tell whether it's the cancer causing the problem or the treatment.

If a patient loses hope and gives up, the battle is over. People who are pessimistic about their chances won't bother to look for solutions. They won't tell their oncologists about new symptoms because they don't want to know their cancer has advanced. But what if it isn't the cancer?

What if the side effects are manageable with the right diagnosis? What if there are options if the oncologist recognizes what is really causing the problem?

I remember sitting in an oncologist's office with a loved one who had just been given the prognosis about cancer. How many people survived this kind of cancer? What were the chances she could come out on the winning side of the equation? The doctor's response was simple. While many people didn't survive it, there were people who did. Why couldn't she be one of the people who survived it?

That little sliver of hope at the right moment in time made a difference. She lived much longer than the majority of patients with the same diagnosis. We learned to manage the symptoms, to address them as they came up, to focus on comfort in order to maximize quality of life. Cancer patients need to feel they still have a reason to get up in the morning. They need to believe there is something worth doing. They need to believe they still have a chance to grab the brass ring.

I have been blessed over the last couple of years in unusual ways. I lost two family members to cancers that were aggressive. But as I grieved, a friend of mine beat the odds, and in doing so, she taught me that hope is a critical component of any good cancer management program. After such a struggle with pain and debilitating side effects, she is still here. She teaches me what courage, fortitude, and perseverance are all about. And above all, she has shown me that we should never turn our backs on hope. Because she believed, she searched for answers. She stayed on top on the issues. She fought for what she needed. She is the new advanced cancer survivor, using cutting edge treatments that have kept her alive against all odds. It hasn't been easy. This isn't some kind of cake walk for her. She fought tooth and nail to keep going. She believes that she still has something to achieve on this planet, so she finds a way to get it done. We've come to understand the power of love, faith, and hope in this life touched by cancer. Cancer didn't make her a superhero. Her reaction to cancer did that. And because she did the hard work, we are inspired. We have learned that hope matters in everything we do. Love connects us. She's told us so many times that our being there for her banishes the loneliness and isolation that cancer creates. Hope pushes us to try harder to help her, to lift her over the obstacles that stand in her way. It feeds our faith that there is something good for her on the other side of that wall.

This is how new cancer treatments come to bear fruit. Those extraordinary people who endure against all odds teach cancer specialists that those baby steps forward can become giant steps. It's not enough to have strong medicines or powerful machines to attack cancer cells. Hope is the elixir for the soul and it opens the door to even the smallest little bit of opportunity. It is what creates quality of life for those survivors who believe they have a chance. And because they believe, more and more people are surviving what was once not survivable. Someday, cancer will be a thing of the past. Who's to say my friend won't be there to march in that parade?