Many cancer patients receive radiation treatments, often in addition to chemotherapy and surgery. In the best case scenario, there is little damage. Very often, radiation can alleviate pain when nothing else works. For example, when cancer spreads to a rib, a few sessions of radiation can make all the difference in the world. But with radiation, there often come side effects that warrant serious attention from family caregivers.
One of the most important side effects can be the radiation burns that result. Very often, these build up over the course of treatment. You might see an increase in redness on the skin at the sites where your loved one is radiated. It looks a lot like a really bad sunburn, and it's hot to the touch. It can also be uncomfortable to endure. Many radiologists recommend skin creams to soothe the fragile skin. Why should you encourage your loved one to use these? Skin is vulnerable after radiation. And when it is, infection can follow.
It's important for cancer caregivers to remember that very often cancer patients have compromised immune systems. It's hard for them to fight off infections. Protecting the skin after radiation means lowering the risk of infection. That's why, if the radiology team recommends a certain type of skin product for after treatment, you should not only make sure you obtain it, you should strongly encourage your loved one to use it.
Sometimes cancer patients are reluctant to involve family members in seeing the damage done by the treatment, especially if they need assistance in applying the skin product. They may want to spare you the unpleasant moments. But if you educate yourself about these side effects, you can help your loved one cope better. The cancer treatment team is there to answer questions and recommend ways to ease the discomfort of radiation burns, whether it's itching or pain.
But what about eco-conscious caregivers? It's tempting sometimes to substitute natural and organic remedies for products the medical team recommends. After all, if it's just a soothing balm, there's no real problem in substituting a natural healing remedy, is there?
Many people don't realize that a number of "natural" products contain allergy-inducing ingredients. (As an allergy sufferer, I can attest to the number of times I've had an allergy attack triggered at the hair salon by a well-meaning hairdresser who thinks "organic" is harmless.) If you know your loved one has allergies, you need to read all labels before providing natural and organic skin products to your loved one.
A word of caution -- Many people are unaware they have allergies, and often just think they are repeatedly suffering from itchy skin or a lingering cold. If you're not sure about symptoms your loved one has, ask a medical professional to explain to you the difference between eczema and contact dermatitis and a cold and an allergy attack.
What is the likely outcome of using natural and organic skin products with an allergy sufferer? He or she can wind up with dermatitis, and if that becomes inflamed, the chances of an infection increase, especially if the skin breaks. Other symptoms also include breathing difficulties, runny nose, and the normal symptoms associated with allergies. For cancer patients, having a skin or sinus infection as the result of an undiagnosed allergy can be a serious complication, especially if the immune system is struggling.
What kinds of ingredients can trigger an allergy attack? Many of the natural and organic skin products use emollients from almonds, argan, coconut, macadamias, peanuts, and even seeds like sunflower. They may or may not trigger contact dermatitis, depending on the allergies your loved one experiences. Today, many products, even those not certified as organic, use ingredients like chamomile. They are in skin lotions, shampoos, conditioners, and other beauty products. Always read the label and be aware of the potential.
But there are also other potential allergy triggers, especially for skin that has been damaged by radiation. Some products use fragrance, and that can also increase itching, which often results in scratching, and that can break the skin.
Sometimes the simplest solutions are the tried and true, the products without a lot of bells and whistles. That's why you should take the advice of the medical team on what products work best with radiation burns, and how best to use them. Don't think that skin will be okay on its own after radiation. Do your part to understand radiation burns and how to protect your loved one from further harm.
Friday, April 29, 2011
Thursday, April 28, 2011
IS THERE A DIFFERENCE BETWEEN CANCER CAREGIVING AND BASIC CAREGIVING?
Many people think caregiving is caregiving. One size fits all. The truth is that cancer caregiving is very different than basic caregiving.
In basic caregiving, the need for the care can be the result of anything from heart disease to ALS to recovery after a traumatic injury. The one consistent thing is that a loved one needs continued care over time, usually on an ongoing basis over time. There is often a consistency to the care, although the intensity of it may vary depending on the loved one's health at any given moment in time.
How does this differ from cancer caregiving? The treatment for the disease often causes more problems than the disease itself. Not only is the loved one coping with cancer, he or she is often rendered more helpless by neuropathy, nausea, "chemo brain", and even just the fear that comes with a cancer diagnosis.
But maybe the most important difference is that cancer patients often experience good times and bad, so their need for care depends on where they are in their treatment and management of cancer. A cancer patient may be knocked off his or her feet during the duration of active treatment, but then begin to slowly resume normal activities over time, once the chemotherapy and radiation stops. A cancer patient who has surgery may need recovery time, physical therapy, and the chance to feel more like his or her old self before life begins to find the balance again.
What does this mean for caregivers? You need to be more flexible in your approach to caregiving. You need to learn when to step forward and when to step back. Your goal is never to take over from the cancer patient and create dependency. And you must always understand that when a cancer patient feels that he or she needs to take back control of life, it's part of the healing. It's a way to manage the disease so the disease doesn't manage the cancer patient.
Cancer is the one disease that really has unique needs for care. Very often, the biggest issue for cancer caregivers is helping a loved one to survive with the fear that the disease can and may return. Now that cancer patients are living longer and better, it's about managing the disease to improve the quality of that survival.
Comfort care, also known as palliative care, is one of the greatest ways to help cancer patients survive the rigors of treatments. Many cancer patients don't know or understand what pain management can do to improve the outcome. When your loved one is being treated for cancer with powerful chemotherapy drugs, the experience can be brutal. With comfort care, patients often experience fewer nasty side effects, which enable them to better tolerate the needed drugs. The nausea can be controlled. For some cancer patients, the treatment can leave them feeling and looking like the walking dead if they don't take advantage of palliative care.
Sometimes the best thing a cancer caregiver can do for a loved one is to help put aside the cancer and just live in the moment. When cancer looms above every conversation, dangling as an unspoken thought, it casts a pall on any meaningful sharing. It's the elephant in the room. It's the bull in the china shop. It's the skunk at the picnic. Everyone is waiting for the next bad bit of news. The dread can linger long after the cancer goes into remission. That's why a good cancer caregiver learns to focus on the good, the "here-and-now" moments and takes advantage of them. Help your loved one to enjoy today and look forward to tomorrow. Don't wait for that special time to celebrate life. Appreciate the opportunities you have. This is one time when a bird in the hand is definitely worth more than two birds in the bush.
Cancer caregiving, more than basic caregiving, is all about the emotional support and empowerment of a loved one, with periods of sometimes intense physical care and sometimes no physical care at all. It's a roller coaster of symptom management and psychological coping. It's never about one way of doing things. It's about understanding your loved one and helping him or her to navigate through the cancer and its treatment in ways that allow for the maximum opportunity to pursue life.
Cancer caregiving is best done with a solid understanding of the type of cancer, the stage of cancer, the type of treatment, the side effects, and the options for palliative care. Embrace your responsibilities by knowing that how you make your approach to cancer caregiving really can help your loved one better survive the disease.
In basic caregiving, the need for the care can be the result of anything from heart disease to ALS to recovery after a traumatic injury. The one consistent thing is that a loved one needs continued care over time, usually on an ongoing basis over time. There is often a consistency to the care, although the intensity of it may vary depending on the loved one's health at any given moment in time.
How does this differ from cancer caregiving? The treatment for the disease often causes more problems than the disease itself. Not only is the loved one coping with cancer, he or she is often rendered more helpless by neuropathy, nausea, "chemo brain", and even just the fear that comes with a cancer diagnosis.
But maybe the most important difference is that cancer patients often experience good times and bad, so their need for care depends on where they are in their treatment and management of cancer. A cancer patient may be knocked off his or her feet during the duration of active treatment, but then begin to slowly resume normal activities over time, once the chemotherapy and radiation stops. A cancer patient who has surgery may need recovery time, physical therapy, and the chance to feel more like his or her old self before life begins to find the balance again.
What does this mean for caregivers? You need to be more flexible in your approach to caregiving. You need to learn when to step forward and when to step back. Your goal is never to take over from the cancer patient and create dependency. And you must always understand that when a cancer patient feels that he or she needs to take back control of life, it's part of the healing. It's a way to manage the disease so the disease doesn't manage the cancer patient.
Cancer is the one disease that really has unique needs for care. Very often, the biggest issue for cancer caregivers is helping a loved one to survive with the fear that the disease can and may return. Now that cancer patients are living longer and better, it's about managing the disease to improve the quality of that survival.
Comfort care, also known as palliative care, is one of the greatest ways to help cancer patients survive the rigors of treatments. Many cancer patients don't know or understand what pain management can do to improve the outcome. When your loved one is being treated for cancer with powerful chemotherapy drugs, the experience can be brutal. With comfort care, patients often experience fewer nasty side effects, which enable them to better tolerate the needed drugs. The nausea can be controlled. For some cancer patients, the treatment can leave them feeling and looking like the walking dead if they don't take advantage of palliative care.
Sometimes the best thing a cancer caregiver can do for a loved one is to help put aside the cancer and just live in the moment. When cancer looms above every conversation, dangling as an unspoken thought, it casts a pall on any meaningful sharing. It's the elephant in the room. It's the bull in the china shop. It's the skunk at the picnic. Everyone is waiting for the next bad bit of news. The dread can linger long after the cancer goes into remission. That's why a good cancer caregiver learns to focus on the good, the "here-and-now" moments and takes advantage of them. Help your loved one to enjoy today and look forward to tomorrow. Don't wait for that special time to celebrate life. Appreciate the opportunities you have. This is one time when a bird in the hand is definitely worth more than two birds in the bush.
Cancer caregiving, more than basic caregiving, is all about the emotional support and empowerment of a loved one, with periods of sometimes intense physical care and sometimes no physical care at all. It's a roller coaster of symptom management and psychological coping. It's never about one way of doing things. It's about understanding your loved one and helping him or her to navigate through the cancer and its treatment in ways that allow for the maximum opportunity to pursue life.
Cancer caregiving is best done with a solid understanding of the type of cancer, the stage of cancer, the type of treatment, the side effects, and the options for palliative care. Embrace your responsibilities by knowing that how you make your approach to cancer caregiving really can help your loved one better survive the disease.
Thursday, April 21, 2011
CHEERING UP THE HOME CARE SETTING
Does color matter to someone who is ill? Can a warm, friendly environment make a difference to someone dealing with a serious illness like cancer?
I'm a firm believer in shaking things up when they aren't working right. I'm also someone who thinks that it's really not that hard to look around a room and see ways to inexpensively change things to make them better. But can it make a difference for someone who is ill?
In order to understand this concept, you have to put yourself in the shoes of your loved one. How limiting is the illness? Does he or she have trouble getting around the house? Are stairs just too daunting to navigate? Are things that could be utilized now out of sight and reach because your loved one just doesn't have the energy to cover the territory?
When you view the home setting from the perspective of your loved one, you begin to understand the personal losses. For example, in the last six months of her life, my mother never had the chance to sleep in her own bed because she couldn't climb the stairs. That meant her whole world had changed. The room she had slept in for the last fifty years was no longer accessible for her. Her world became the home care room, and she spent almost all of her time in it as her health declined.
Even cancer patients who are temporarily limited in their mobility can feel cut off from their normal lives. It's important for caregivers to understand how this can affect the human psyche. Not only do you have this terrible, unpredictable disease and an uncertain future, you don't have your "stuff" to make you feel like yourself.
When you look at the main living space for your loved one with cancer, think about ways you can change things up to make it better. Could the walls use a new coat of paint? Don't hesitate to tackle this kind of project. Benjamin Moore offers a great paint that has virtually no odor, so it won't negatively impact your loved one. Other paint companies have similar products. The paint dries quickly, cleans up with a damp sponge, and the color you add to the walls can add a sense of new life to an old space.
If your loved one is sleeping more, especially during the day, you can add color with blinds, fabric shades, or even new drapes as a way to enliven the home care setting.
Does your loved one spend the bulk of time in the family room, dozing on and off while watching TV, especially after chemotherapy? Do you have a big, soft, comfy recliner in the room? That can be a great addition to the home care setting. The opportunity to relax in a chair that reclines gives your loved one the chance to feel normal, while still taking into account the limitations that cancer treatment puts on him or her.
But you can also do other things to improve the home care environment. Ask your loved one what you can bring into the room. If he or she has a favorite piece of furniture, why not move it into the space where your loved one spends the most time? If there are favorite photos or paintings or prints, why not adorn the walls with these?
Give yourself and your loved one permission to change things for the better. Why keep things the way they used to be, when your loved one has new needs? Accept the change and adapt to it. It's not a sign of defeat to acknowledge your loved one can no longer do certain things or use certain rooms because of a lack of mobility or energy. When you change the environment for your loved one, you're actually saying that life goes on and you're going to make the best of it. You take the home decorating bull by the horns and you add new energy to the room. Whether your loved one is a child, a teenager, an adult, or a senior citizen, redecorating the home care setting to fit his or her needs makes sense. It creates a sense of belonging in the family, even with cancer creating problems. What you're telling your loved one is that this space is for healing -- this space is for feeling better.
What colors should you put on the walls? What colors can make a difference? Well, why not take advantage of the techniques used in healthcare facilities by professionals? This article by Kim Baughan-Young in Managed Care Magazine, explains how color can help stimulate healing for patients.Kim is an interior designer AND a licensed therapist, a great combination in health care design:
http://www.managedcaremag.com/archives/0111/0111.colors.html
Always adapt your ideas to fit your loved one's needs when changing your loved one's home care setting. Make the space as user-friendly as possible.
If you're feeling overwhelmed at the thought of redecorating a whole room, stop a moment, take a deep breath, and think. What little changes can you do here and there? Start small. Work towards a bigger goal. I understand how limited a caregiver's energy can be. But sometimes these changes don't just improve the mood of a patient. They can also help a caregiver to feel more optimistic and cheerful. Whether it's adding a soft, attractive blanket for napping or changing a lamp to better suit your loved one's needs while reading in a recliner, little touches mean a lot. Make them practical, positive, and pleasant. That's how you can make a difference at home.
I'm a firm believer in shaking things up when they aren't working right. I'm also someone who thinks that it's really not that hard to look around a room and see ways to inexpensively change things to make them better. But can it make a difference for someone who is ill?
In order to understand this concept, you have to put yourself in the shoes of your loved one. How limiting is the illness? Does he or she have trouble getting around the house? Are stairs just too daunting to navigate? Are things that could be utilized now out of sight and reach because your loved one just doesn't have the energy to cover the territory?
When you view the home setting from the perspective of your loved one, you begin to understand the personal losses. For example, in the last six months of her life, my mother never had the chance to sleep in her own bed because she couldn't climb the stairs. That meant her whole world had changed. The room she had slept in for the last fifty years was no longer accessible for her. Her world became the home care room, and she spent almost all of her time in it as her health declined.
Even cancer patients who are temporarily limited in their mobility can feel cut off from their normal lives. It's important for caregivers to understand how this can affect the human psyche. Not only do you have this terrible, unpredictable disease and an uncertain future, you don't have your "stuff" to make you feel like yourself.
When you look at the main living space for your loved one with cancer, think about ways you can change things up to make it better. Could the walls use a new coat of paint? Don't hesitate to tackle this kind of project. Benjamin Moore offers a great paint that has virtually no odor, so it won't negatively impact your loved one. Other paint companies have similar products. The paint dries quickly, cleans up with a damp sponge, and the color you add to the walls can add a sense of new life to an old space.
If your loved one is sleeping more, especially during the day, you can add color with blinds, fabric shades, or even new drapes as a way to enliven the home care setting.
Does your loved one spend the bulk of time in the family room, dozing on and off while watching TV, especially after chemotherapy? Do you have a big, soft, comfy recliner in the room? That can be a great addition to the home care setting. The opportunity to relax in a chair that reclines gives your loved one the chance to feel normal, while still taking into account the limitations that cancer treatment puts on him or her.
But you can also do other things to improve the home care environment. Ask your loved one what you can bring into the room. If he or she has a favorite piece of furniture, why not move it into the space where your loved one spends the most time? If there are favorite photos or paintings or prints, why not adorn the walls with these?
Give yourself and your loved one permission to change things for the better. Why keep things the way they used to be, when your loved one has new needs? Accept the change and adapt to it. It's not a sign of defeat to acknowledge your loved one can no longer do certain things or use certain rooms because of a lack of mobility or energy. When you change the environment for your loved one, you're actually saying that life goes on and you're going to make the best of it. You take the home decorating bull by the horns and you add new energy to the room. Whether your loved one is a child, a teenager, an adult, or a senior citizen, redecorating the home care setting to fit his or her needs makes sense. It creates a sense of belonging in the family, even with cancer creating problems. What you're telling your loved one is that this space is for healing -- this space is for feeling better.
What colors should you put on the walls? What colors can make a difference? Well, why not take advantage of the techniques used in healthcare facilities by professionals? This article by Kim Baughan-Young in Managed Care Magazine, explains how color can help stimulate healing for patients.Kim is an interior designer AND a licensed therapist, a great combination in health care design:
http://www.managedcaremag.com/archives/0111/0111.colors.html
Always adapt your ideas to fit your loved one's needs when changing your loved one's home care setting. Make the space as user-friendly as possible.
If you're feeling overwhelmed at the thought of redecorating a whole room, stop a moment, take a deep breath, and think. What little changes can you do here and there? Start small. Work towards a bigger goal. I understand how limited a caregiver's energy can be. But sometimes these changes don't just improve the mood of a patient. They can also help a caregiver to feel more optimistic and cheerful. Whether it's adding a soft, attractive blanket for napping or changing a lamp to better suit your loved one's needs while reading in a recliner, little touches mean a lot. Make them practical, positive, and pleasant. That's how you can make a difference at home.
Monday, April 18, 2011
COLON CANCER ALLIANCE -- FAMILY MATTERS CONFERENCE
Are you a colon or rectal cancer survivor or a caregiver to one? If so, you might be interested in the upcoming national conference, "Family Matters: What You and Your Family Need to Know About Colon Cancer". It's being held in Denver, June 23-25:
http://www.ccalliance.org/
Why is this national conference important? I read the planned topics for discussion. They include sessions on information for the newly diagnosed, the long-term survivor, legal and employment issues, parenting a child when you have cancer, and what children need to understand about a parent's cancer. There are sessions on ostomies, pregnancy, and even sexual function. There's even a session for caregivers. But the best thing? Here's a place to learn about the advances for treating colon and rectal cancers. What's on the horizon?
Some people might be frightened by the idea of attending a conference that is so focused on discussing cancer. You might think it's scary. After all, you're already feeling terrified because you or a loved one has colon or rectal cancer. But when I read the agenda for this national conference, one thing pops into my head and stays there. Why would all of these experienced cancer professionals put together a conference for cancer patients and their families if they didn't think it could actually make a difference? Consider that. All this effort is going into providing families with strategies and information and education on surviving.
As someone who has worked with children who have a loved one with cancer, I can tell you that this can be an overwhelming experience. Children need help understanding what's involved, but at a level that reaches them. I see that the Colon Cancer Alliance is offering a three-part series for children ages 10-18. To me, this is such an important thing to do. You want your kids to get their information on your cancer from experts. You want to help them navigate the fear and work through it, so they are able to participate in the family. Very often, when a parent is affected by cancer, the kids get shuffled off or left out. The family can become fractured. When you're dealing with cancer, you need your family to be strong. You need everyone to be on the same page, with an understanding of your disease that is appropriate for the age.
In case you think the Colon Cancer Alliance is just a group of people determined to educate you on colon and rectal cancer, think again. "Family Matters" participants also have the opportunity to join the Undy 500. In case you haven't figured it out, it's about running or walking 5K in your boxers or your bloomers. That's right. It's an underwear fun run/walk. If you can't make it to Denver for the June 23-25 conference, don't despair. There are Undy 500 runs all over the country:
http://support.ccalliance.org/site/PageServer?pagename=undy_landing
http://www.ccalliance.org/
Why is this national conference important? I read the planned topics for discussion. They include sessions on information for the newly diagnosed, the long-term survivor, legal and employment issues, parenting a child when you have cancer, and what children need to understand about a parent's cancer. There are sessions on ostomies, pregnancy, and even sexual function. There's even a session for caregivers. But the best thing? Here's a place to learn about the advances for treating colon and rectal cancers. What's on the horizon?
Some people might be frightened by the idea of attending a conference that is so focused on discussing cancer. You might think it's scary. After all, you're already feeling terrified because you or a loved one has colon or rectal cancer. But when I read the agenda for this national conference, one thing pops into my head and stays there. Why would all of these experienced cancer professionals put together a conference for cancer patients and their families if they didn't think it could actually make a difference? Consider that. All this effort is going into providing families with strategies and information and education on surviving.
As someone who has worked with children who have a loved one with cancer, I can tell you that this can be an overwhelming experience. Children need help understanding what's involved, but at a level that reaches them. I see that the Colon Cancer Alliance is offering a three-part series for children ages 10-18. To me, this is such an important thing to do. You want your kids to get their information on your cancer from experts. You want to help them navigate the fear and work through it, so they are able to participate in the family. Very often, when a parent is affected by cancer, the kids get shuffled off or left out. The family can become fractured. When you're dealing with cancer, you need your family to be strong. You need everyone to be on the same page, with an understanding of your disease that is appropriate for the age.
In case you think the Colon Cancer Alliance is just a group of people determined to educate you on colon and rectal cancer, think again. "Family Matters" participants also have the opportunity to join the Undy 500. In case you haven't figured it out, it's about running or walking 5K in your boxers or your bloomers. That's right. It's an underwear fun run/walk. If you can't make it to Denver for the June 23-25 conference, don't despair. There are Undy 500 runs all over the country:
http://support.ccalliance.org/site/PageServer?pagename=undy_landing
Friday, April 15, 2011
CANCER AND DISAPPOINTMENT
Some families take on cancer as a family issue. It becomes a crusade. Some friends will encircle one of their own and create a safe cocoon through which to survive the cancer. What happens when cancer returns? What happens when cancer spreads to another part of the body?
If I could give those who love a cancer patient one piece of advice, it would be this. You are supporters, not sufferers. Even though you may feel your heart is breaking, it's not your body enduring the cancer treatment or the disease itself.
Why do you need to be aware of this? When you create a support team for someone who has cancer, you must remember this is not a sport. This isn't a matter of trying hard enough or "if only". Cancer is an unpredictable foe. A cancer patient can do everything right, can take every treatment available, follow every instruction, and take every precaution. In the end, it all comes down to how the disease affects each individual.
We love our sports teams and we can be fanatics in our cheering. That's fine for healthy athletes who train and improve their performances with rigorous attention to human technology and sports performance guidance. But cancer is a disease, not an opponent. You can throw all your resources at it and it can still win. Is that failure?
Failure suggests that there is a measure of control over a situation and the performer just didn't master it. In cancer, patients very often are fighting against all odds. The deck is stacked and the cards aren't in their favor. For some, they don't even find out they are playing until that trump card is dealt.
Are you unwittingly pressuring your loved one by the approach to support you make? What can you do to help your love one understand that he or she has your full support, come what may? How will he or she know that it's not your loved one's fault if the cancer returns or spreads?
What's wrong with the truth? What's wrong with saying what is in your heart and your head? "No matter what happens, I'm here for you. Rain, sleet, snow, drought, earthquake, tsunami...."
Well-meaning people sometimes rally around cancer patients and adopt their illness as a cause. We all want to end cancer. We all want those we love to thrive. But cancer patients are individuals, with hopes, dreams, fears, and sorrows. When everything you share with your loved one revolves around the cancer, when you push to keep your loved one focused on the goal of defeating the cancer, that's pressure to be cured. Is that the message you really want to send?
What can you do to improve the support you give your loved one? Be realistic. You cannot wave a magic wand and make him or her better. Real support is created by seeing the obstacles and meeting them as best as possible under the circumstances limited by the cancer.
1. Encourage socialization --
Help your loved one feel connected to family and friends in ways that put aside cancer and concentrate on fun. Don't put off the opportunities to bond. Understand what holds your loved one back and figure out reasonable solutions. Is it fatigue? Is it fear? Is it frustration?
2. Encourage good nutrition --
Cancer patients need to get through the rigors of cancer treatment and that's not always easy. Find out what cancer center nutritionists suggest for reluctant eaters. Help your loved one find ways to get the calories without the stress. And for heaven's sake, DON'T NAG! Nobody likes to be scolded, especially when you feel like something the cat dragged in.
3. Encourage organization --
It may seem strange to say that organization is important for cancer patients, but the stress of the disease and its subsequent treatment can often make it difficult for loved ones to focus. Providing structure and routine can help. Most chemotherapy patients experience predictable side effects, and if your loved one understands there will be good days and bad, he or she can maximize the activities on good days and minimize them for the days when it's important to rest. Fatigue is a real issue and prevents some cancer patients from achieving their goals. It's always a good idea to figure out ways he or she can conserve physical, mental, and emotional resources.
4. Encourage realization --
Cancer is a disease that can be unpredictable. A lot goes into a cancer treatment program for each patient. What does your loved one need to do to give himself or herself the best chance to survive? Patients need to keep themselves as healthy as possible under the circumstances. Physical health matters. Mental health matters. Emotional health matters. How does chemotherapy affect your loved one? How does the disease affect your loved one? How does the stress of having this disease affect your loved one? Help him or her to understand it's a matter of doing the best you can with what you have. Find out what other cancer survivors do to thrive. Help your loved one use what works.
5. Encourage optimization --
Some people think that cancer treatment is only about showing up for treatment. It's much, much more than that. Help your loved one to live each day as fully as possible. What are his or her short-term goals? What are things he or she wants to experience? Create a net of "positivity" around your loved one, highlighting what is successful in his or her life. If your loved one is worrying about what might happen, he or she won't be able to enjoy the here and now. Tomorrow is promised to no one. Live today. Embrace it. Make the most of it. Appreciate it. Build on it.
Many cancer families focus all their attention on the big cure down the road. When you put all your energy into such an enormous project and it fails to meet your expectations, you can find yourself devastated. Focus on realistic steps along the way. Improve family life. Share more. Laugh more. Live more. Find little ways in everyday life to overcome the effects of cancer, and that will help your loved one live a good life despite the cancer. That's really how you beat this disease.
If I could give those who love a cancer patient one piece of advice, it would be this. You are supporters, not sufferers. Even though you may feel your heart is breaking, it's not your body enduring the cancer treatment or the disease itself.
Why do you need to be aware of this? When you create a support team for someone who has cancer, you must remember this is not a sport. This isn't a matter of trying hard enough or "if only". Cancer is an unpredictable foe. A cancer patient can do everything right, can take every treatment available, follow every instruction, and take every precaution. In the end, it all comes down to how the disease affects each individual.
We love our sports teams and we can be fanatics in our cheering. That's fine for healthy athletes who train and improve their performances with rigorous attention to human technology and sports performance guidance. But cancer is a disease, not an opponent. You can throw all your resources at it and it can still win. Is that failure?
Failure suggests that there is a measure of control over a situation and the performer just didn't master it. In cancer, patients very often are fighting against all odds. The deck is stacked and the cards aren't in their favor. For some, they don't even find out they are playing until that trump card is dealt.
Are you unwittingly pressuring your loved one by the approach to support you make? What can you do to help your love one understand that he or she has your full support, come what may? How will he or she know that it's not your loved one's fault if the cancer returns or spreads?
What's wrong with the truth? What's wrong with saying what is in your heart and your head? "No matter what happens, I'm here for you. Rain, sleet, snow, drought, earthquake, tsunami...."
Well-meaning people sometimes rally around cancer patients and adopt their illness as a cause. We all want to end cancer. We all want those we love to thrive. But cancer patients are individuals, with hopes, dreams, fears, and sorrows. When everything you share with your loved one revolves around the cancer, when you push to keep your loved one focused on the goal of defeating the cancer, that's pressure to be cured. Is that the message you really want to send?
What can you do to improve the support you give your loved one? Be realistic. You cannot wave a magic wand and make him or her better. Real support is created by seeing the obstacles and meeting them as best as possible under the circumstances limited by the cancer.
1. Encourage socialization --
Help your loved one feel connected to family and friends in ways that put aside cancer and concentrate on fun. Don't put off the opportunities to bond. Understand what holds your loved one back and figure out reasonable solutions. Is it fatigue? Is it fear? Is it frustration?
2. Encourage good nutrition --
Cancer patients need to get through the rigors of cancer treatment and that's not always easy. Find out what cancer center nutritionists suggest for reluctant eaters. Help your loved one find ways to get the calories without the stress. And for heaven's sake, DON'T NAG! Nobody likes to be scolded, especially when you feel like something the cat dragged in.
3. Encourage organization --
It may seem strange to say that organization is important for cancer patients, but the stress of the disease and its subsequent treatment can often make it difficult for loved ones to focus. Providing structure and routine can help. Most chemotherapy patients experience predictable side effects, and if your loved one understands there will be good days and bad, he or she can maximize the activities on good days and minimize them for the days when it's important to rest. Fatigue is a real issue and prevents some cancer patients from achieving their goals. It's always a good idea to figure out ways he or she can conserve physical, mental, and emotional resources.
4. Encourage realization --
Cancer is a disease that can be unpredictable. A lot goes into a cancer treatment program for each patient. What does your loved one need to do to give himself or herself the best chance to survive? Patients need to keep themselves as healthy as possible under the circumstances. Physical health matters. Mental health matters. Emotional health matters. How does chemotherapy affect your loved one? How does the disease affect your loved one? How does the stress of having this disease affect your loved one? Help him or her to understand it's a matter of doing the best you can with what you have. Find out what other cancer survivors do to thrive. Help your loved one use what works.
5. Encourage optimization --
Some people think that cancer treatment is only about showing up for treatment. It's much, much more than that. Help your loved one to live each day as fully as possible. What are his or her short-term goals? What are things he or she wants to experience? Create a net of "positivity" around your loved one, highlighting what is successful in his or her life. If your loved one is worrying about what might happen, he or she won't be able to enjoy the here and now. Tomorrow is promised to no one. Live today. Embrace it. Make the most of it. Appreciate it. Build on it.
Many cancer families focus all their attention on the big cure down the road. When you put all your energy into such an enormous project and it fails to meet your expectations, you can find yourself devastated. Focus on realistic steps along the way. Improve family life. Share more. Laugh more. Live more. Find little ways in everyday life to overcome the effects of cancer, and that will help your loved one live a good life despite the cancer. That's really how you beat this disease.
Wednesday, April 13, 2011
WHY BONDING IS IMPORTANT FOR CANCER PATIENTS AND CAREGIVERS
In reality, the intimacy between caregiver and loved one always needs effort. It's too easy to focus on the physical needs of the cancer patient. Many caregivers get bogged down by the inter-related health issues that cancer management can create. There can be confusion and neurological dysfunction created by chemotherapy, leading to difficulty concentrating, short-term memory loss, neuropathy of hands and feet, and a number of other bothersome side effects. Radiation can create its own problems with the skin and the major organs. Even surgery can create long-lasting scarring and affect mobility and motion.
When you are caring for a cancer patient and he or she is not thriving, you're often focused on finding ways to help the patient eat enough to sustain life, or worried about his or her immune system. So many big issues take center-stage in dramatic fashion, and slowly your loved one becomes less the person you know and love, and more the family project. This can create a barrier between caregiver and cancer patient that needs to be removed in order to resume a normal relationship. How do you do that?
What's it like for cancer patients who need care? If you think about it, that's a tremendously unbalancing position to be in, where everyone is so worried about you, your survival is almost more important than you are. Sometimes it can feel like you are invisible because all people see is the cancer in your body. That can create big walls between cancer patients and the people who love them.
How can family caregivers create a better sense of normalcy for cancer patients? It's really quite simple. Make it real again for your loved one. In order to return to that intimacy you once shared, even temporarily, you need to balance that relationship. Put the Big C on hold for a couple of hours. Do something that doesn't involve talking about, thinking about, or imagining that cancer. Let it be about who you both are as people.
-- If you're a parent, help your child play for a few hours. Have fun together and listen to that sweet sound of laughter. Remember what a joy it is to engage in games or to swing through the air or to build a tower together. Have an adventure with your child, even if you don't leave his or her bed. Read a funny story or watch a silly movie together. Let your child run away with his or her imagination and take you along for the ride. Do something unexpected and enjoy your child's surprised reaction. Sometimes caregivers get so wrapped up in being responsible, they steal the joy out of the air. Let loose for a little while and let your child see you are more than just a protective parent.
-- If you're a spouse, take your loved one on a special date and remember why you chose this person to marry. Put the romance back in the marriage in a meaningful way. Remember the days of courting, how you took your time to share thoughts and feelings, or even just to be together without pressure or worry or fear? Emotional intimacy is all about being able to be yourself with someone you truly love. Recapture that sense of innocence and genuine affection and companionship. Discover each other again.
-- If you're a child caring for a parent, make new moments to remember. If you can see your mother or father as a person, beyond the role of parent, if you discover what he or she was like as a child, you begin to see that there is more to this person than you have assumed. Explore what you don't know of the past in meaningful ways. Awaken the sleeping treasures hiding in your parent and it will deepen your relationship. But it also does something more. It gives your parent a sense that he or she still has something to give you, something you can't get anywhere else. Your parent with cancer may rely on you for caregiving, but you can rely on him or her for pearls of wisdom and family history.
-- If you're a friend or relative caring for a cancer patient, remember what he or she was like before cancer. Is this someone who helped you over the big obstacles in the road of life? Have the two of you shared other battles? Maybe you had a romance or marriage that went south. Maybe you had career-busting moments. You two have found other trolls under the bridge. Put the cancer in perspective. Sometimes the greatest gift a good friend or relative can give to a cancer patient is the opportunity to put the cancer away while you do lunch or go shopping or watch a big game. Sometimes the chance to be "normal" again is a real gift.
Cancer patients are often stuck at home thinking about their cancer because they are too easily fatigued to get out and about easily. Adapt the event to meet the needs of your loved one, but do it. We all need healthy outlets for fear and frustration. It's what builds the muscles we use to rise above adversity. When you take the time to work on the emotional intimacy of the relationship you share, you reconnect and rediscover why life matters. Don't be afraid to reach out. And don't hold back because you fear you will eventually lose that love to cancer. Every laugh, every smile, every gleam of joy in an eye is what keeps us going. It's what makes life worth living.
Saturday, April 2, 2011
WHAT DO CAREGIVERS FOR BRAIN CANCER PATIENTS NEED TO KNOW?
Is there a difference in the type of caregiving you give to cancer patients? There can be. A lung cancer patient will probably have very different needs than a breast cancer patient, especially if the disease advances. A bone cancer patient will probably experience the disease differently than a blood cancer patient. An ovarian cancer patient's particulars will likely be different from a prostrate cancer patient's. And so it goes on.
Why do caregivers need to know there are different care needs for cancer patients? Caregiving is never a one-size-fits-all situation. How a disease changes a body depends on the organs affected, and if you don't understand that progression, you may find yourself and your loved one frustrated by the unexpected difficulties you face.
It's always important for a caregiver to understand the disease that a loved one is facing. The more you educate yourself, the greater your opportunities to help your loved one. Brain tumors can make life very difficult for both patients and caregivers, especially if the tumors interfere with physical and neurological function. Sometimes the cognitive impairment of a brain tumor patient can lead to greater isolation for his or her caregiver. When patients are using steroids to cope with symptoms, the problems can increase, resulting in mood and personality changes, insomnia, atrophying of leg muscles, and even an increase in appetite. This can create a greater burden on the caregivers of brain cancer patients.
The more you understand about how the cancer will affect your loved one, the better able you will be to handle the responsibilities of being the caregiver. Perhaps the most important thing for you to understand is that you really do need a great deal of support during this family crisis. The greater your resources for coping with the specific needs of a brain cancer patient, the better your ability to handle the increased burden of caregiving duties. Not all patients will have the same needs, but if you have a general understanding of the likely changes for a brain cancer patient, you will be better able to prepare yourself for these changes as they occur. Sometimes the caregiver is more aware than the patient, and this can add to the stress and distress levels you may experience.
Caregiving can exhaust your physical, mental, and emotional reserves over time. The greater the physical, mental, and emotional needs of your loved one, the less time you have for yourself. You can lose yourself in caregiving in ways that make it difficult for you to maintain yourself and your overall health, because you are constantly providing care for your loved one. If you understand that caregiving is likely to change over time, as the brain tumor changes your loved one, you can build the kind of support you need to get through the experience.
Sometimes the hardest thing for caregivers to understand is that there will come a time when, no matter how great a caregiver you are, you will need the help of family, friends, and even health care providers to do the job. The responsibilities become more than one person can handle because of how the disease affects your loved one. Accepting this reality through educating yourself about the disease and its likely progression allows you to put in place the support you are going to need before you need it. Respite care is important for every family caregiver, regardless of the disease your loved one is facing, but when the disease creates an intense need for care, it is even more critical that you get out on a regular basis and take time for you. Sometimes you almost have to force yourself to do it, because you might feel you are letting your loved one down by leaving him or her with another person for a little while. Understanding the benefits of respite care can help you recognize that you need to recharge your batteries in ways that enable you to return to your duties.
If your loved one has a brain tumor, you owe it to yourself to find out as much as you can about the disease and ways to cope. Here is one resource that may help you to do that:
http://www.braincancer.org/
Why do caregivers need to know there are different care needs for cancer patients? Caregiving is never a one-size-fits-all situation. How a disease changes a body depends on the organs affected, and if you don't understand that progression, you may find yourself and your loved one frustrated by the unexpected difficulties you face.
It's always important for a caregiver to understand the disease that a loved one is facing. The more you educate yourself, the greater your opportunities to help your loved one. Brain tumors can make life very difficult for both patients and caregivers, especially if the tumors interfere with physical and neurological function. Sometimes the cognitive impairment of a brain tumor patient can lead to greater isolation for his or her caregiver. When patients are using steroids to cope with symptoms, the problems can increase, resulting in mood and personality changes, insomnia, atrophying of leg muscles, and even an increase in appetite. This can create a greater burden on the caregivers of brain cancer patients.
The more you understand about how the cancer will affect your loved one, the better able you will be to handle the responsibilities of being the caregiver. Perhaps the most important thing for you to understand is that you really do need a great deal of support during this family crisis. The greater your resources for coping with the specific needs of a brain cancer patient, the better your ability to handle the increased burden of caregiving duties. Not all patients will have the same needs, but if you have a general understanding of the likely changes for a brain cancer patient, you will be better able to prepare yourself for these changes as they occur. Sometimes the caregiver is more aware than the patient, and this can add to the stress and distress levels you may experience.
Caregiving can exhaust your physical, mental, and emotional reserves over time. The greater the physical, mental, and emotional needs of your loved one, the less time you have for yourself. You can lose yourself in caregiving in ways that make it difficult for you to maintain yourself and your overall health, because you are constantly providing care for your loved one. If you understand that caregiving is likely to change over time, as the brain tumor changes your loved one, you can build the kind of support you need to get through the experience.
Sometimes the hardest thing for caregivers to understand is that there will come a time when, no matter how great a caregiver you are, you will need the help of family, friends, and even health care providers to do the job. The responsibilities become more than one person can handle because of how the disease affects your loved one. Accepting this reality through educating yourself about the disease and its likely progression allows you to put in place the support you are going to need before you need it. Respite care is important for every family caregiver, regardless of the disease your loved one is facing, but when the disease creates an intense need for care, it is even more critical that you get out on a regular basis and take time for you. Sometimes you almost have to force yourself to do it, because you might feel you are letting your loved one down by leaving him or her with another person for a little while. Understanding the benefits of respite care can help you recognize that you need to recharge your batteries in ways that enable you to return to your duties.
If your loved one has a brain tumor, you owe it to yourself to find out as much as you can about the disease and ways to cope. Here is one resource that may help you to do that:
http://www.braincancer.org/
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