Category: caregiver

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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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caregiver home care patient personality

Does a Patient’s Personality Impact Your Caregiving?

Grant Wood — “American Gothic”
STOICISM IN THE FACE OF ADVERSITY

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”
THE “DETERMINED TO STAY BUSY”
STRATEGY

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”
THE EMOTIONAL MELT-DOWNERS

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”
THE “KEEP CALM AND CARRY ON”
APPROACH

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

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#BCSM advanced breast cancer Alicia Staley caregiver Dr. Deanna J. Attai elderly Jody Schoger palliative care

Advice Columnist Puts Breast Cancer Patient at Risk with Bad Advice

Problem: A 75-year-old friend has experienced a serious health decline. The elderly woman is battling breast cancer. Reader contacts nationally acclaimed advice columnist, worried that the friend has dementia.

Symptoms: The patient forgets to eat, which leads her to lose consciousness in public. She has been hospitalized for malnutrition and dehydration. She is forgetful and repetitive in her conversations and written communications. She appears to be increasingly frail and unkempt.

Patient’s support system: Never married and without children, she has one sibling, who is aware of her decline and wants her to move to a “retirement community”. Other possible support comes from the reader and associates at the company that formerly employed the elderly woman. They want to suggest that she hires home care help while she considers a “retirement home”.

Advice columnist’s view: Talk to the friend (who is having communication issues and may not comprehend). Do some research through the local office on aging and present the patient with options that will allow her to remain at home (assuming the dementia diagnosis is accurate). Try to visit frequently. Do things with the elderly friend. And if things are dire, contact the sibling (presumably to intercede).

On the surface, it all sounds like a good working plan, except for one thing. The 75-year-old woman is battling breast cancer.

In the past year, I’ve lost two family members to cancer. I’ve also been there for two cancer surgeries for another relative. And, sadly, I had a beloved relative who had advanced breast cancer that was never diagnosed, despite multiple visits to her physician and complaints. When that breast cancer spread to her bones, every bit of her body ached and she suffered enormously. She could have been helped by proper cancer care, but because she was elderly, she was treated for age-related issues. That is a lesson I will never forget, because the people who loved her were unable to help her. When the aches and pains an elderly person experiences are chalked up to arthritis, dementia, or any other age-related issue, that patient will not receive the appropriate treatment. There will be no palliative care for the pain, no treatment for bone mets, and no help with issues such as nutrition and hydration.

So, what did I do when I read the advice from the nationally recognized advice columnist? I contacted her, pointing out the very real possibility that the problems the elderly woman was experiencing were actually the result of the breast cancer. It might have invaded her brain. That’s not an unusual thing with breast cancer, is it?

There is also the very real possibility that the decline in mental function was the result of powerful chemotherapy drugs and/or other treatments. Many breast cancer patients are familiar with the annoying and debilitating effects of “chemo brain.”

Anyone familiar with cancer patients and the challenges they experience knows that the malnutrition and dehydration issues raised by the reader can be symptomatic of the breast cancer. That’s why many cancer centers have nutritionists that work with families to assist in providing nutrition to the patient that is tolerable under the circumstances.

And let us not fail to consider that this 75-year-old breast cancer patient could be depressed with her circumstances. Having breast cancer can bring the strongest of us to our knees. I have a number of friends who are breast cancer survivors, married and single. They have shared their insights in ways that are now permanently etched on my mind and in my heart. Having breast cancer can be a very lonely, isolating experience. Good support is critical in surviving the brutalities of the disease.

The response to me from this nationally acclaimed advice columnist was less than stellar. She was offended. She took umbrage at my response to her advice. She tossed in a tiny little, “could be the cancer”, which was apparently meant to make her appear to be flexible on the subject. But she stuck to her guns that her advice was appropriate. It wasn’t. Why?

By sloughing off the 75-year-old woman off as being elderly, she had actually provided harmful, not helpful, advice (which raises the question of liability should the 75-year-old breast cancer patient be involuntarily hospitalized for dementia if the cancer is causing the problems). She allowed the “dementia” label to stand. She didn’t correct the reader or open the possibility of some simple ways to help the cancer patient.

What would be MY advice? First and foremost, if a woman is battling breast cancer, recognize that’s a medical diagnosis. That means somewhere, at sometime, an oncologist has treated the disease. We also know the patient has been treated for malnutrition and dehydration in a hospital. Is she still being treated or did treatment end? A scan could reveal a brain tumor pressing on the part of the brain that involves executive decision-making, for example. That’s not a matter of guessing that the patient has dementia. That’s a medical opinion backed up by scientific testing. Has that been done?

Hospitals and medical centers who treat cancer patients normally have cancer navigators, patient advocates, social workers, and a myriad of other support services that can assist a 75-year-old woman who lives alone, but has people to care about her. There is no need to go to the local office on aging for advice on anything.

But there’s a glitch, a very big one. HIPAA laws prevent unauthorized people from getting information on a patient’s situation, and rightly so. Obviously, the reader and her associates can’t call the medical center to find out how they can help. The 75-year-old breast cancer patient’s sibling might be able to do so, however. Normally, if someone is that debilitated by illness, a relative is essential in helping to navigate medical treatments, insurances, and other related issues. What is his involvement? Does he have power of attorney? Does she have an independent conservator? Who is helping this woman get through her treatments (or is she struggling on her own)? That’s the “go to” person. Every cancer patient needs one.

Thus, the best starting point would be finding out who is the “go to” person for the elderly friend. Who accompanies this woman to her treatments? Or has she been struggling with this issue by herself? Has she stopped treatments because she’s been too debilitated to get herself there? Is she terrified she’s dying and in denial? The reader and fellow co-workers could offer to drive her to and from treatments, couldn’t they? They could volunteer to stay with her during her treatments. They could be there when the side effects sideline her. They could find some positive ways to improve the quality of life for the patient that address her real needs, not her assumed needs. But they need to know who the “go to” person is and coordinate.

The minute anyone reads that a person with a cancer diagnosis has experienced a decline, it automatically becomes a medical issue. Whether it’s the cancer, the complications, or the stress of the disease, it’s critical to properly assess the patient’s condition, setting, support system, and services. No 75-year-old woman should be assumed to have dementia based on the observations of well-meaning, but untrained lay people.

The greatest danger that this 75-year-old woman faces is that she will be placed in a skilled nursing facility by her sibling because it is assumed her mind is failing due to dementia. If the real problem is that her breast cancer has metastasized, she could suffer through what remains of her life. She could be medicated with drugs used to treat dementia and not treated with drugs that would provide comfort at the end of life.

But the one point I would make here is that we don’t know what kind of relationship this 75-year-old breast cancer patient has with her cancer team. For all we know, they have done all the tests, diagnosed the disease accurately, and treated the patient humanely. If that is the case, perhaps what this patient really needs is the love and support of family and friends. Maybe she doesn’t know how to ask for it. Maybe she doesn’t know she can get it. So often, communication is a critical tool for a cancer patient, whether it’s talking to the oncologist or explaining problems outside the hospital setting. That nationally acclaimed advice columnist should have suggested that the reader and her associates find out more about how to help a woman dealing with breast cancer. There are plenty of good resources for that, ranging from The American Cancer Society to #BCSM, better known as Breast Cancer Social Media, formed by the late (and wonderful) Jody Schoeger and her social media partners, Alicia Staley (a great cancer advocate better known as Awesome Cancer Survivor) and Dr. Deanna Attai, a well-respected surgeon on the UCLA Breast Care Team.

I mentioned Jody Shoeger because I had the pleasure of interacting with her at a cancer blogger conference out in Arizona several years ago. She was the epitome of a wise and caring counselor for breast cancer patients, often reaching out to those who felt marginalized, isolated, and alone. She taught me about making assumptions one day, by correcting me — not all breast cancer patients have adequate support. I will never forget one post from her. She let a breast cancer patient anonymously share her painful personal story of being shunned by her husband once she was diagnosed. I have never been able to let go of that tale. It follows me wherever I go. It makes me determined to speak for those who don’t have the strength or the confidence to ask for help. I owe it to Jody now to share this with you. If you know a woman who is battling breast cancer, don’t throw your money into all things pink. Reach out and help in real ways. Learn what life is like for breast cancer patients and find out what you can do to help improve quality of life for a woman who is struggling. That’s what a real friend does.

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#LiveLikeMichelle cancer caregiver CTCA grief hospice

Michelle DID Win

Michelle DID win. As I join so many others in grieving the loss of this vivacious, determined, spirited young woman, that is uppermost in my mind. #LiveLikeMichelle….

She started out her life with cancer by blogging about what it was like to face such as horrible diagnosis. Wife, mother of young children, daughter, sister, and friend to so many, Michelle had no intention of allowing cancer to suck the joy out of life. She was going to beat this thing, come hell or high water. You know what? She did.

Too often we hear that people battled cancer and the cancer finally got the upper hand, resulting in death. Too often it sounds like they failed because they were weaker than the disease. The words “brave” and “courageous” can be found in obituaries in every newspaper around the globe. But battling cancer isn’t what makes someone brave or courageous. Battling the demons that stop us from living with cancer is the real test of the soul. We wage war with an enemy that steals our humanity as it marches through the human body. Cancer is a weapon of mass destruction. It terrifies us all with its mighty power, especially when it’s an aggressive, untreatable kind of cancer cell that invades. But that’s not the foe we need to fight, first and foremost.

Cancer cells destroy — that’s true. In lucky times, the right mix of treatments and drugs sometimes halt cancer in its tracks. Then again, cancer can be sneaky. Those cells can hide in the body, only to resurface at the most inopportune times. We never know which way the cells will mutate, or where they might show up next, or whether there’s a treatment that will be effective. That black cloud of uncertainty hangs heavy over the lives of cancer survivors and the people who love them. All that darkness can take its toll on the soul, drowning us in a sea of sorrow for what could have been, what might have been, what never was.

It’s easy to hate cancer, to give in and give up when we first hear that horrible diagnosis, to surrender before we’ve even begun to understand the real enemy. When we allow our fear of cancer to decide how we live our lives, we give up our personal power, self-determination, and above all, our right to choose to live our lives out loud.

Michelle taught me much about personal courage and bravery. Right up to her last few days, she fought hard to remain the wonderful young woman we adored. That mattered to her, even in hospice care. Imagine feeling like you’ve let down the people who love you because you just don’t have the strength, the energy, the power to rise above the cancer any more. You want to go on giving, but you’re just too exhausted to do it.

Michelle DID win because she allowed us to join her on her journey through a war zone where cancer is a weapon of mass destruction. Every time she was knocked down, she stood up. Every time she lost her footing, she got to her knees and then to her feet, dusted herself off, and continued on. Cancer never took that brave, courageous spirit from her. As the power of those destructive cells wreaked their havoc on her body, her spirit grew. Love became more important. Sweet moments mattered more than sorrow, more than hate. There was no such thing as an ordinary day. She chose to make her time on this earth count for something.

Michelle could have hated her life, could have raged against the unfairness of it all. She chose to encourage all of us to grab the light. She picked her path up the mountain, and in doing so, became a wise teacher. Michelle DID win.

None of us who ever had the chance to meet this dynamic, determined, dedicated young woman will ever be the same because we choose to remember and honor her. She lives on through us, through the things we learned vicariously as she battled to save her psyche and her soul against all odds. No virtual reality, no video game ever produced a fighter quite like Michelle. She was the real deal. She was a valiant warrior in a too-real war that doesn’t have a reset button.

And she did save her psyche, staying focused on what mattered even as doubt pushed at the door. She did rescue her soul from that dark, endless night by growing in power as a human being. She did become extraordinary, this woman with the soul of a warrior — not because she fought a battle with cancer, but because she lived in spite of cancer. Who would she be when the dust settled? That mattered.

Too often we see death as failure. We forget that each of us is mortal, that with every passing day we move closer to the end of our own lives. Sometimes we’re so focused on that, we forget to live. We squander our hours in meaningless activities. We hold back our unspoken thoughts, hold in our deeply felt emotions, hold ourselves off from really engaging in life. Michelle made those moments count. She was “working the room” everywhere she went, networking with hearts and minds on her crusade to make life matter. Michelle DID win.

Cancer never took the love out of her. She worked hard to make sure her children would be safe after her beautiful spirit departed from her body. She wanted her family to go on believing in sunshine, blue skies, and good times. She wanted everyone to thrive in her absence, not fall apart. You could see it in the things she chose to do. She was building memories to keep the hearts above the high water mark, to keep the souls she loved swimming when the tears came. And they have come.

Yes, Michelle’s spirit departed, but she is everywhere around us. She’s there, in the random act of a kindness shown by a stranger, in a hearty laugh that reminds us we have this glorious moment in time, in an outstretched hand when the heart is heavy. We need to recognize that same wonderful spirit in others and appreciate it, because that’s what Michelle taught us to do.

Michelle DID win. Our lives are richer for those beautiful smiles, the touching words, the moments that she chose goodness over evil, kindness over cruelty, generosity over stinginess. The world was a better place because she lived. The light she brought to this earth grew brighter as her spirit faced an enemy that wielded cancer as a weapon of mass destruction. The real enemy in the cancer fight is apathy. There was nothing dispassionate about Michelle. She cared about everything and everyone.

As we now go on facing life without Michelle, we should not think we have lost that beautiful spirit. She sowed the seeds in each of us who yielded to her joie de vivre. Her own light faded when she left us, but she lit our souls with her fiery passion for love, for life. It is up to us to feed that flame, to carry on that legacy in the way we choose to live. We honor her by remembering that apathy, disinterest, and dispassion are the real enemy. Live in the moment. Embrace love and let it fill your soul with its warmth. Seek joy and don’t stop until you find it. Demand all this from yourself and don’t take no for an answer. Burn brightly, as Michelle did, even in the face of that horrible weapon of mass destruction, cancer. Don’t let your light go out. Long after you are gone, your spirit will live, as Michelle’s does, in all the people whose lives you touch.

Rest in peace, dear Michelle. And thank you for being you.

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cancer cancer caregiver cancer management caregiver individualized cancer treatment stalkers stress

Having Cancer Is Like Having a Stalker Stalk You

Anyone who has ever had a stalker knows the sheer fear, that tension in the pit of your stomach that pulls your gut into one tight knot that never seems to let go. While you’re looking behind for that telltale shadow, you get broad-sided by that sudden furtive movement as your stalker suddenly appears right in your face.

If you’re a cancer survivor or a cancer caregiver, take a few pages from the “Life with a Stalker Handbook”. Understanding and utilizing the lessons learned in fighting a stalker long-term can help cancer survivors function more fully in their lives.

There are a lot of similarities between cancer and stalkers. Cancer, like a stalker, can deceive, can pretend to be cooperative, when in fact it is setting up shop in another organ, sometimes even hiding in plain sight and masquerading as a benign being. It can throw its hands up in the air and appear to be walking away, all while it plots to find another tiny opening in the victim’s life that can be exploited. There can be distractions, lulls, and even periods of inactivity, when you think it’s finally done. You tell yourself you can get back to your life, get settled into the normal rhythms and routines, only to find your life erupting into confidence-shattering chaos and confusion once again.

Stalkers are, like cancer, very dangerous because of their unpredictability, mindset, and potential volatility. In order to fight a stalker, you have to understand the menacing behavior of the individual stalker. You can’t assume that every stalker is using the same playbook. What drives this particular individual to do what he does? What does he hope to get out of it? Why is he attacking in this particular way? What does his victim have that he needs? Stalkers have certain patterns in common, but other activities and motivators are unique to the individuals.

The same is true of cancer. We treat it like it’s one disease, when in fact it’s hundreds of different diseases, with different triggers, behaviors, and malignancy rates. One size does not fit all.

If you’ve ever been the victim of a stalker, you know that panic. “What did I do to make this happen?” You review the scenes over and over again in your head, trying to figure out what it was you did to attract the attention of your stalker. Were you just too handy? Was it something you said or did, or even didn’t do? Why you? Why not your neighbor down the hall? Why not someone else?

Isolated incidents involving violence can be overcome with directed and mindful cognitive exercises. You can look at a single traumatic event and put a face to it, a meaning to it that will eventually allow you to come to terms with it and make peace, provided you have the right support and psychological tools.

But how do you fight a stalker over time? So often, the stalker lurks in the shadows, hiding behind bigger obstacles while he’s stalking, but the rest of the time, he usually blends into the crowd. A stalker doesn’t want to get caught, because if caught, he can be apprehended, contained, neutralized, even paralyzed in his tracks — so he feigns being something he’s not. The philanthropist loves everyone. The average Joe who’s minding his own business. The good guy who just happened to be passing by. The upstanding citizen who’s no threat to anyone. Cancer’s a lot like that. The symptoms can mimic other diseases, other issues, and that can be distracting. Doctors very often take the symptoms presented and assign them a diagnosis that has nothing to do with cancer. If they don’t suspect it’s cancer, they don’t test for cancer.

Some stalkers are better than others at getting away with their crimes. They learn to wear rubber-soled shoes as they creep about. They get to know their victims inside and out, always in search of vulnerabilities. Victims often flee to escape their tormentors, only to find themselves in greater danger. What’s a cancer survivor to do when the potential for “someday” looms on the horizon? Run away? Disappear? Bury one’s head in the sand and hope it won’t hurt too much when the rest of the body is left vulnerable to attack?

Stalking is, in reality, a mind game first and foremost. It’s psychological warfare at its best. It’s predator after prey. Sometimes victims can give their stalkers too much credit for intelligence. We imagine their power is greater than our ability to overcome, so we don’t look for reasoned ways to fight back. We don’t use our greatest tool, the human mind. We flee, and in doing so, miss so many opportunities to enjoy life by staying in the game. When cancer survivors wrap their heads around the notion that cancer is as much a mental battle as a physical one, they begin to understand their foe. In any battle, knowing your enemy is the most important means of directing his defeat.

Many victims of stalkers learn to live off the grid, to fly under the radar, in the hopes that they can evade their pursuers. Imagine spending all that time and energy trying to not do the things that will alert the stalker to your whereabouts or arouse his interest again. You might constantly ask yourself, “Is he going to find me again? Is he going to come after me once more?” The constant stress and distress of living with the potential threat cuts the joy out of life. You’re always teetering on the edge of despair. “I have now, but what comes next?” It’s the unknowing-ness of the future that hurts the most. It’s the mistrust of the half-consumed moment. Fear can paralyze us. “In the blink of an eye, life can change, and I don’t want it to get worse.”

But that’s not the only problem. Denial can often rear its ugly head in stalking situations. What happens when the stalker is in plain sight and everyone knows you’re his victim? What happens when everyone around you can see the stalker, but they don’t believe he poses a threat any more? People throw deterrents at stalkers all the time, in the hopes of dissuading them from acting out on their need to prey, as if that’s enough. That’s a lot like tossing cancer therapies at patients willy-nilly, in the hopes that something, anything, will work. Once treatment is completed, cancer survivors are just supposed to move on with their lives. They’re not supposed to wonder if the radiation will create new complications, or think about the potential for a different kind of cancer because the body was weakened by the first. “Don’t worry about it till it happens!” Is that really the best advice for someone who lives under the threat of another bout with cancer or complications? If I know I might have a problem at some point in the future, won’t I be better able to deal with it if I am armed with the knowledge that will empower me to do battle?

The truth is the more you know about the specific threat, the better, because that’s when you can develop a strategy. Even if you never have the chance to completely contain the stalker or his dangerous behavior, you can manage the danger he poses by being able to act in ways that make a difference. That’s how you rebuild a realistic trust in yourself, those who support you, and even in the potential for a good life. Fear that once prevented you from taking chances gives way to confidence borne of wisdom. “Yes, cancer may come back, but if it does, I’m ready for it. I’m prepared. I have my people and I’m going to give it everything I have.”

The most effective way to handle a stalker is to know him, inside and out. What makes him tick? Why is he doing this? Too generalized an understanding puts the victim at greater risk of not only triggering another incident, but also in becoming more vulnerable. There is a world of difference between a stalker who has a fantasy life and a stalker who has a secret life. Someone who is mentally unbalanced might spiral out of control without rhyme or reason. Someone who is trying to protect a skeleton in a closet will be very driven and determined in attacking his victim. His motivation for acting is self-preservation and he is willing to kill to make that happen. But stalkers are, by virtue of their covert lives, secretive. They depend on people not knowing what they are up to in order to hide.

Cancer treatments that focus on the specifics of an individual’s cells, genes, overall health, and any of the factors that affect that particular type of cancer are the best type of threat management for cancer survivors. Every day, new developments in fighting the disease show that certain types of cells work in certain, somewhat predictable ways. As doctors learn more, they also learn ways to cut the cancer off from what feeds it. Just as you want to move a stalker away from his victim, to neutralize his ability to cause harm, doctors take cancer treatments to new levels every day — by starving tumors here or by empowering the immune system there.

But where does that leave cancer patients? Still battered by the stalking, still fearful of the future?Victims of stalkers often have difficulty living normal lives because they spend so much time and energy trying to survive, just like cancer patients — it’s often a matter of knowing when you can safely poke your head out of your hidey-hole. But it’s more than that. Those who have, over time, had their lives disrupted again and again, had to pick up and move once more when their stalkers located them, never really fully trust in anyone or anything. You always hold back a little part of yourself because you expect that disappointment to arrive on your doorstep once again, almost always when you least expect it. Stalkers love to terrify their victims, so they look for the chance to pop up out of the blue. Living with that stress over decades is tough. You never ever completely let your guard down. You never ever really get used to believing that life can be good. “It was good once, and it’s okay now,” becomes the new normal.

But in accepting how things have changed, in taking it one step at a time, and most of all, in having the right kinds of resources to identify real-time threats, victims become empowered and stalkers will, over time, lose their power to terrify. Even when you know in the back of your mind that there could be another incident, another blow, you’re already thinking of what you can do to deal with it, to get past it. That’s the strategy that a lot of victims use once they really come to terms with their predators. “I refuse to give you power over my life, my emotions, my heart. I will not live in fear anymore. I am willing to do what it takes to keep myself safe.”

For cancer patients, the knowledge that cancer can, and might, recur is often overwhelming. It’s hard to live with the maybes, the uncertainty, the possibilities. How do you manage it? How do you plan for it? Should you even consider it?

Take a lesson from victims of stalkers. Don’t isolate yourself. Running away is a dangerous strategy, because your stalker will hunt you down. If you have fled, you have probably cut yourself off from your best support network, those people who will look after you and fight for you. The bigger your team, the better your chances of reducing your risk of injury or worse.

Instead, surround yourself with people who are knowledgeable about your situation. Don’t be afraid to immerse yourself in the learning. Talk to other cancer survivors and learn what they know about the disease. Think of it as a self-defense strategy. If you’re going to kick cancer’s ass, do it right. Don’t raise a little finger when your assailant comes at you with a big stick, grab a crow bar and cripple him. Let him see you are not intimidated or weak in his presence. Toss the creep to the curb.

So many times, victims of isolated incidents think it’s just a one-time thing, so they never bother to learn how to look out for themselves. Lightning doesn’t strike twice, right? But when you have a stalker, that’s an ongoing threat, one that isn’t going to stop until the stalker is permanently neutralized in his tracks. Being vigilant doesn’t mean you’re always terrified. The more you learn about cancer, especially your type of cancer, the more you can understand its weaknesses, its needs, and even its goals. Some kinds of tumors consume hormones to live and starving them of the hormones can prevent new occurrences. But there are side effects, aren’t there? The tumor needs that same estrogen that you need to function well, and in preventing the cancer from receiving it, you suffer, too. How do you balance that?

Every day, new ways to fight cancer, to hold it back, to knock it down, are becoming available. What we knew last year is less than we know now. What we know now is less than we will know next year. By keeping up with information that can make a difference, by learning to recognize new symptoms as they sneak in, cancer survivors have a better chance of managing their disease in meaningful ways.

Just as you need to be vigilant in recognizing new signs that your stalker has resumed his bad behavior, whether you notice new scratches on your door lock or you find things have been moved in your car, those are signs you don’t ignore if you’ve been a victim. Every long-time Stage 4 cancer patient I ever met had one thing in common. They all were proactive in dealing with new symptoms and they were willing to fight hard to survive. Those “I can do this” muscles were developed over the years of battling their unseen, seemingly unknowable foe. The harder they fought, the more they learned about cancer’s cunning, and once they learned, they got busy.

Many times, cancer survivors want to turn their backs on the disease once it’s under control. And so often, their families and friends want them to move on. That “let’s just forget about it and act like it never happened” mindset is what often puts cancer survivors at greater risk. Tackling the potential threat is as important as taking your chemo drugs, being zapped with radiation, or even going under the knife to cut the cancer out of you. It’s your new “survival mode”.

Long ago, when cancer happened and options were few, people didn’t have to live with cancer as a stalker. Death was often swift and cruel, and time fleeting. By the time a patient was diagnosed, there might only be weeks or months. But now? Now the possibilities for survival and cure are better than ever, and growing every day. That requires a new way of thinking about cancer management. It’s imperative that you recognize your stalker, assess the threat posed, and handle the aftermath of a cancer diagnosis effectively. You want to direct yourself to act, not to react, and you best do that by understanding what is out there.

Anyone who has ever dealt with a stalker over time has to come to a decision: “Do I live my life as normally as possible, take advantage of the opportunities, and stay out in the open, vulnerable to attack, or do I hide myself away, in the hope that I might survive a little longer? Do I survive or do I thrive? Do I embrace life or embrace fear?”

True inner strength comes from understanding fear and uncertainty and taking steps to manage its impact on our lives. It’s the choice to sit it out or dance. Music lovers know how hard it is to not feel the rhythm, to sit still when the tune beckons. What is life without song? As the Irving Berlin song said, there may be trouble ahead, and the fidlers may flee when the going gets tough, but while we have moonlight, music, love, and romance, we should embrace the opportunities to dance. Don’t ever let cancer take that away from you.

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cancer treatment caregiver caregiver education Dr. Robert D.Siegel Dr. Robert J. Dowsett Helen and Harry Gray Cancer Center

Where You’re Treated Matters — Helen and Harry Gray Cancer Center

I’ve heard horror stories from cancer patients and their caregivers about their experiences with cancer treatment in various hospitals and medical centers. From people being shuffled off into solitary confinement for the lonely hours of intravenous drips to a serious lack of communication on the part of medical staff with such relevant information as a loved one’s terminal condition, the list of complaints is often long and scary.

That was not my mother’s case when she was treated by the Helen and Harry Gray Cancer Center and I can prove it. After more than two years, I can still tell you a little something about the people who cared for her. That’s because they were memorable for the compassion and kindness they showed my mother throughout her treatment.

What can I tell you about Dr. Dowsett? Behind his serious demeanor lurked a good sense of humor, and sometimes he would make a wry, unexpected comment that had us laughing. He always sported a really spiffy tie, thanks to his bargain-hunting wife, also a physician. My mother loved that he appreciated his wife’s efforts to make him a “GQ” guy. If I asked about a new kind of treatment in the news, he would explain what was and wasn’t appropriate in my mother’s case. That may not sound like a big deal, but it demonstrated to me that he was up-to-date in his knowledge of advances in radiation practices for cancer treatment. That instills confidence in the patient and family.

My mother adored Shelley, the radiation nurse who checked her in on each visit to radiology. “You remind me of Meryl Streep!” she would say as Shelley took her vital signs. With a calm, patient manner, Shelley would smile sweetly, never mentioning that she was much, much younger than the Oscar-winning actress. Never rushing my mother, always supportive, Shelley was a reassuring presence during exams.

Diane was the nurse who would always stop by to say hi while we were waiting in the radiology lounge. Cheerful, approachable, she always wanted feedback on what was working and what wasn’t working. This genuine interest in helping us get my mother through cancer treatment counted for a lot. Diane, like my mother, loved good movies, and she introduced us to the joys (and convenience)of Netflix. When my mother was too ill to go out, we signed up for Netflix and she had the chance to see some really good movies.

Carl and the other “kids” in the radiology meant a lot to my mother. That’s because they always treated her with affectionate respect. Carl used to surprise my mother when he spotted her waiting for her chemotherapy. He would sneak up, appearing at my mother’s side to offer a big, friendly greeting. She was thrilled for him when Carl graduated from school and was hired as a full-time radiation tech.

Anne, the nutrition expert, was literally a life-saver. As a lot of cancer patients do, my mother lost too much weight before we were able to reverse the trend. Anne sat with us in her office, explaining how to feed a cancer patient who also happened to have diabetes. With a hearty laugh and a quick wit, she offered encouragement and sage advice, and she helped us understand my mother’s frustration with the need to eat and lack of appetite, offering positive solutions to get her back on track.

With a radiant smile and twinkling eyes, Denise was one of the kindest, gentlest people in the oncology department, which was good, because she was the one taking blood samples. I remember her as “the hugger”, who would wrap her arms around my mother and tell her how happy she was to see her again. My mother looked forward to seeing her on visits to the hospital and to receiving that hug.

Karen was my mother’s oncology nurse, always sashaying in and out of the treatment room with the patience of a saint, no feathers ruffled even on the most hectic of days. What I liked about Karen was that I could call her with a question and she would get back to me with the answer. She was always good at sharing tips about managing the side effects of the cancer drugs my mother was receiving, clearing up any confusion and helping us to know what to expect.

When Karen had a day off, Donna would often fill in, dispensing my mother’s chemotherapy drugs. A very experienced nurse, she was always available if there was a problem. I ran into her at the grocery store after my mother passed away and I felt compelled to thank her for all of the wonderful treatment she and the others provided. They made chemotherapy bearable for her.

Marcia? Oh, full of life and passionate! On her stark white lab coat, she used to add her own whimsical touches, like big, colorful buttons. Marcia, as a nurse practitioner, was the one who explained things about over-the-counter medications interfering with the chemotherapy. If one pain reliever didn’t work well enough or was dangerous on certain treatment days, she had no qualms about prescribing another. Comfort was paramount. Marcia was a problem-solver who liked things to go right for patients, so she often went out of her way to make good things happen.

Dr. Bob’s office was like a whimsical version of what a doctor’s office would look like on the Cartoon Network, and I think it defined him not only as a doctor, but also as a human being. There were illustrations done by his young patients taped up to the walls, along with a Sponge Bob Square Pants figure. The jungle-print drapes, solar-powered pith helmet, and photograph of him jogging in Africa amongst a herd of elephants were all part of a decorating blitz by Marcia and a few others in the department to celebrate Dr. Bob’s vacation in Africa. You’ve got to love a guy who does such serious work and surrounds himself with very “unserious” stuff. Dr. Bob was a straight-shooter as an oncologist. He was big on quality of life, something my mother really appreciated. Dr. Bob always treated her with respect, making it clear that it was her decision on when to say enough was enough. It made it easier for me, when her health had seriously deteriorated, to ask her if she felt she was ready to go into hospice care. As a result, we got a lot done in her final weeks, tackling the things that mattered most to her and fulfilling her wishes.

I could go on and talk about the valet parking attendants, who always hustled to get the car back as quickly as possible. My mother loved the greeter at the front desk and even the “gift shop lady”. I appreciated Dr. Dowsett’s and Dr. Bob’s schedulers. They offered appointments that fit my mother’s physical limitations and need to rest.

Does the Helen and Harry Gray Cancer Center sound to you like a scary, cold, or unfeeling place to go if you have cancer or like a patient-focused medical facility where the staff is welcoming and warm? A cancer treatment center is always more than just a single doctor or nurse. It takes many people to get the job done. With a disease like this, especially if the cancer is manageable, you and your loved one are likely to spend a great deal of time there. All the more reason to make quality of life and treatment a priority by picking a good cancer center.

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

For a free copy of my ebook in popular formats, visit:
The Practical Caregiver’s Guide to Cancer Care: How to Help Someone You Love

You can also find my free caregiver guides at Barnes and Noble, Sony, Kobo, Diesel, Baker and Taylor, as well as Smashwords.

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caregiver caregiver education children's activities hospitalized children The Practical Caregiver's Guide to Amusing Sick Kids

How Do You Amuse a Sick Child?

One of the things I learned long ago is that it is difficult to keep a hospitalized child engaged and amused over time. Very often kids with serious illnesses, diseases, and disorders wind up spending long days lying in bed, in between tests, examinations, and treatments. It can be even harder when kids come home from the hospital. What are parents to do?

I just published my latest free ebook, “The Practical Caregiver’s Guide to Amusing Sick Kids”. There are tips, advice, ideas, and games galore. Whether you need a quick game to play while you wait for the doctor to arrive or you want to do some bonding with your child, this is your go-to guide for keeping your sanity. Download it for free in the format of your choosing:
“The Practical Caregiver’s Guide to Amusing Sick Kids”

If you’re a health care or home care provider, you should know that The Practical Caregiver Guides are not affiliated with any health care agency or service provider. They were written out of my passion for caregiving and the need to provide useful education that is accessible to all. That means that these guides are also available to agencies and service providers who want to help families provide better care. Just pass along the Practical Caregiver link to a family in need. Help them to work with you to keep their loved ones healthier and happier.

If you need more help with family caregiving, visit:
The Practical Caregiver Guides
For a free copy of “The Practical Caregiver’s Guide to Cancer Care: How to Help Someone You Love”, visit my Smashwords page:
“The Practical Caregiver’s Guide to Cancer Care”

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cancer cancer retreat caregiver caregiver education Stowe Stowe Weekend of Hope Vermont

SAVE THE DATE — 12TH ANNUAL STOWE WEEKEND OF HOPE IS COMING UP!

If you or a loved one has been touched by cancer, you may be interested in the 12th Annual Stowe Weekend of Hope. It’s a big, happy festival of people who have or have survived cancer and the families who love them. Save the date, because it’s coming up May 4-6, 2012:
http://www.stowehope.org/

Why am I telling you about this event? Because I think having the chance to rub elbows with fellow survivors, to have access to fun, education, and Vermont can be a healthy thing.

What can you expect from the Stowe Weekend of Hope? First-time cancer attendees receive complimentary accommodations. There are discounts for returning participants. Throughout the weekend, you can choose from more than 40 medical and supportive care seminars presented by renown New England physicians and practitioners; wellness and creativity sessions; intensive workshops by cancer type; an  inspirational ecumenical candlelight service; and opening and closing ceremonies.

Best part? The setting. In the winter season, Stowe is a beehive of activities. It offers fine food, shopping, and recreational activities in a charming mountain village setting. That’s great if you’re a snow bunny and you’re swooshing down the hills like Hannah Kearney. But Vermont isn’t just for skiers. My favorite times in Vermont were had during the warmer months. There is something wonderful in those verdant hills. You can enjoy the fresh air and the many wonderful opportunities to hike, to walk, or just to sit and kick back in a place where the people are hard-working, friendly, and down-to-earth.

There are organized events throughout the weekend, including a dance party with the Ross Livermore Band, a “lantern tour” of Stowe, complete with ghost stories, and even a marathon. You’ll find yourself going to events all over the village, and you’ll have the chance to try out the best of Stowe’s restaurants on your “free time”. You can wander the streets in search of that perfect bite. How delicious is that?

You may even want to extend your visit in Stowe to take in some of the many other fun activities that abound in the Green Mountain State. There is the Farm at Morrison’s Corner, the Ben and Jerry’s Ice Cream Factory (Ice cream? Count me in!), Gregg Hill Gardens, and the West Branch Gallery and Sculpture Park. You can go hiking in one of the nearby state parks, play some golf, do some fly fishing, even work out on a bungee trampoline. There’s also the Cabot Creamery Cooperative, which makes award-winning cheeses, Greek yogurt, and other dairy products in nearby Cabot, Vermont (Greek yogurt is often recommended as a great food for cancer patients — full of protein, easy to digest, and packing good, healthy calories).

Vermont is the quintessential family-friendly place to be. You and your kids can find adventures and educational opportunities at every energy level, even when there are serious restrictions due to health issues. Maybe that’s why the Stowe Weekend of Hope is such a great opportunity for cancer survivors and their families. You will be among friends, people who understand and support the challenges cancer presents. It’s like a big hug for your soul.

If you would like more help with your cancer caregiving, visit The Practical Caregiver Guides:
www.practicalcaregiverguides.com

If you would like a free copy of “The Practical Caregiver’s Guide to Cancer Care: How to Help Someone You Love” in popular ebook formats, visit my Smashwords page:
http://www.smashwords.com/books/view/110999

Categories
cancer cancer management cancer treatment caregiver caregiver education Caris Life Sciences early diagnosis mycancer.com oncologist oncology radiology

CARIS’S CANCER TECHNOLOGIES PERSONALIZE TREATMENT

One of the most impressive women I ever met when my mother was undergoing cancer treatment was a lady who had survived two decades with the disease. How did she do it? She paid attention to her body. She got to the point where she could tell when the cancer was spreading or returning. She went in search of cancer treatment. She was not content to just accept it as her fate in life. Her husband was a supportive partner as she endured, managed, and directed her own cancer care. Why does this matter? I learned a lot from her that day as we talked in the chemotherapy room. She knew life is precious, that we are here to live life and to love. One moment in time can change a life for the better or for the worse. When we hesitate, when we accept the status quo without question, we are victims of our fate. When we accept the opportunity to learn what we can about cancer, when we begin to embrace the opportunities provided by emerging technologies, we help our loved ones to manage the disease better. Don’t close your eyes and look away because your loved one has cancer. Be proactive. Become aware of what’s available and what it can do for you and your loved one.

I’m a big believer in using technology to attack cancer and knock it out of the loop. Caris Life Sciences has a new program for cancer patients that enables better, smarter treatment:

http://www.mycancer.com/biopsy

Caris even has a checklist of questions to ask the oncologist, so that you and your love one better understand the type of cancer and the options for treatments. The idea is to individualize the cancer in order to provide the best treatment for the specific situation.

Anyone who has ever had cancer or cared for someone with cancer knows that it can be tough to withstand the rigors of treatment. Sometimes that’s harder than the cancer itself. With a more personalized treatment plan, unnecessary guesswork goes out the window. Cancer treatment is no longer “one-size-fits-all”. When oncologists and hematologists can see markers in blood that indicate cancer long before it shows up on a scan, that’s a head start on cutting cancer off at the pass. The sooner you know, the sooner you or your loved one can be treated. That means less treatment because it’s more effective at catching the cancer earlier.

One of the hardest things for cancer patients is to hope when things look bad. If your loved one has late stage cancer, you might be tempted to give up and give in. Would it help you to know that a new study showed that even late-stage cancer patients increased their survival rate by almost 30% using molecular profiling? That means that 3 out of 10 late-stage cancer patients thrived by using this technology. Three more people now live who would have died without the technology.

Any good cancer caregiver knows that working with a loved one’s radiology, oncology, and surgical team is imperative in keeping him or her healthier. It’s always important to be able to discuss the cancer and the options, because the better you and your loved one understand cancer, the better you and your loved one can manage the disease. And the better the cancer is managed, the better life will be for the whole family.

For more help with cancer caregiving, visit The Practical Caregiver Guides:
www.practicalcaregiverguides.com

For a free copy of “The Practical Caregiver’s Guide to Cancer Care: How to Help Someone You Love” in popular ebook formats, visit my Smashwords page:
http://www.smashwords.com/books/view/110999

Categories
cancer cancer advice cancer treatment caregiver caregiver education Kathy McGonigal oncology

INTERVIEW: KATHY MCGONIGAL, ONCOLOGY NURSE

In honor of National Family Caregiver Month, I’ve invited Kathy McGonigal, an oncology-certified nurse with almost 20 years of experience to answer some questions. My goal is to help cancer caregivers do a better job of helping their loved ones manage the disease as much as is possible.

 Sara:
 Hi, Kathy. I’m so glad you could join us. I really value your experience as an oncology nurse.  Let me ask you this. If you could give one piece of advice to caregivers at the start of treatment for their loved ones, what would that be?

 Kathy:
 It’s hard to give just one but I would say take care of “you”. This is the most difficult for the caregiver to understand. They feel like they have to be everything to their loved one all the time. Let others help you. Admit when you are overwhelmed. Taking a break is important. Eat healthy and get a lot of rest.

Sara:
So, so true. It really is critical that we take care of ourselves, so we can be there for the people we love. What the most common mistake you’ve seen caregivers make in taking care of loved ones with cancer? Is there more than one way to overcome this?

Kathy:
When patients hear the word cancer, everything changes. Most patients want to talk about their fears. Listen. Really listen. Instead of the usual “Don’t talk like that” or “Everything will be fine”, it is important to acknowledge their fears. It is also okay for you to tell them you are afraid too. Once words are spoken out loud, some of the fear disappears.

Sara:
I think listening is probably the best tool a caregiver can have in the caregiver tool box. It helps you to recognize when there’s a serious problem and to get the right help from your cancer treatment team. And a caregiver who is a good listener makes a cancer patient feel much more connected. It’s scary enough to hear the word, “cancer”, so knowing you have good support can make it all a little less lonely. How important is it for cancer families to understand the type of cancer their loved ones have and to understand the treatment that’s being given? Does it make a difference?

Kathy:
Families who understand the disease their loved one is suffering from is very important. You will be getting a lot of advice from other cancer survivors and caregivers. Not all cancer is created equal. Knowing what you are dealing with allows you to help make educated decisions and make reachable goals. The more educated you are, the less afraid you are.

Sara:
I think that’s really true about getting advice from other cancer survivors and caregivers. I met some amazing people during my mom’s treatments, and having the chance to talk to them about their experiences really helped me to do a better job in caring for my mom. One issue that seems to come up a lot with cancer patients is eating. Nutrition is often an important element in helping cancer patients get through the rigors of treatment. Do you have a good tip for feeding a reluctant patient?

Kathy:
Eating is important but it can also be a source of frustration between caregivers and patients. Feeding an illness is something we have all learned from our mothers. The patient knows how important it is to eat but it is not always possible. Think about how you feel when you are ill before you try and “force” your loved one to eat. Let the patient go. Make sure there are a lot of simple nutrient rich foods on hand. Cook simple so the smells are not overwhelming.  Don’t make the patient feel like you are monitoring everything they eat or not eat. It will cause too much anxiety. The patient will eat when they can. Leave it up to the doctors and nurses to address nutrition.

Sara:
Ah, what could be more annoying than the Food Police? How true. That’s a good point, too, about the cooking smells, especially if your loved one doesn’t already feel well. Reaching out to the medical team for help is good, solid advice, Kathy. As an experienced oncology nurse, you’re working on the front lines and I’m sure you’ve seen a lot over the years. Dealing with cancer can be stressful on a daily basis. A lot of cancer caregivers become overwhelmed. Do you have your own favorite ways of dealing with stress when you’ve had a tough week at work?

Kathy:
Wow, that’s a hard one and it is sometimes very difficult. I try to apply everything I learn from my patients into my personal life. I try to take nothing for granted. No matter how long you live, it is always not long enough. As stressful as my job can be, I have been privileged and honored to be invited into the lives of my patients at what might be the most vulnerable time of life. They have all enriched my life in ways most people do not get to experience. It is amazing to watch the human spirit take over. If you are a caregiver, you too will learn that while the patient says they couldn’t get through it without you, you will be the one who gets the biggest gift of all. You make it possible for your loved one to fight.

Sara:
What a great point to make to caregivers. I’ve seen that time and time again. Caregivers are the wind beneath a loved one’s wings and yet we’re the ones who benefit when we really make an effort to give the right kind of support for those we love. It changes lives, especially our own. Thank you so much, Kathy, for sharing your insight and wisdom. I know caregivers will be inspired by your words.

Contact:
Kathy McGonigal
kathymcgonigal@gmail.com