Helpful advice for the journey ahead…
With Valentine’s Day around the corner, florists are blowing up the airwaves, hawking red roses and chocolate assortments. I have always been jaded about the big V, so lord help my string of boyfriends. Yes, I like flowers (lilies, preferably) and chocolate (dark, 80% please) but Valentine’s Day just plain irks me. I want friends and family showering each other with year-long displays of love and care. So while this week may or may not be the most appropriate time to rant about the intersection of relationships, chronic illness and caregiving, I am doing it anyway. Brace yourself.
Let’s start with this fun fact: Relationships are hard.
Our relationships usually start off with our parents or guardians, followed by the neighborhood children, kids at school and our first loves. As we mature, develop adult relationships and run our own lives, we still depend on our friends and partners to meet our various needs. To this end, we create an inner circle of trust, believing that this select group of people will stand by us, through thick and thin. Sometimes they actually do. Too often, however, when the going gets tough, the inner circle gets going. Away.
When a loved one becomes ill, life changes radically. When my mother had a few months left to live, for example, nothing else mattered. My mother had my undivided attention, around the clock. This change in our relationship did not leave a whole lot of room for my then-boyfriend, and my inattention to him quickly became an issue. I was too tired to be intimate; too tired to cook, clean, smile or play; and otherwise too tired to maintain any sense of normalcy, any sense of what we had prior to my mother’s diagnosis. I wanted my boyfriend to understand my situation, be empathetic, step up and take over the responsibilities that I could no longer manage — like grocery shopping, walking the dog and doing our laundry. After all, we had been living together. We had made a deal to support one another.
It didn’t happen.
The same held true for some of my closest friends: We were in our early twenties, and none of them had a care in the world, other than getting laid, drinking beer and squeaking by in college. My life-and-death problems simply were too much for them to handle; and so, as time slipped away, so did many of these friends.
The more I speak with other caregivers and care recipients, the more I find that my situation was not unique. When someone is diagnosed with a chronic illness, the dynamic of all relationships change at best and become minefields at worst:
• The care recipient, suddenly dependent, may feel guilty for having to depend on others physically and financially. She may end up lashing out at those who are closest to her and doing the most for her.
• The care recipient’s friends and family members may feel jealous of the care recipient — irritated by the uneven distribution of time, attention, and resources — and they may take out their feelings on the care recipient.
• The caregiver, suddenly revolving her life around the care recipient, in turn may resent friends and family members who are not pulling their weight or otherwise demonstrating compassion and understanding. She may become short-tempered with anyone not stepping to the plate.
• In the case of role reversal — such as a child caregiving for a parent — the caregiver and care recipient may lock horns in an ongoing power struggle, leading to explosive tension in the relationship.
• Friends and family of the caregiver and care recipient may feel overwhelmed by the daily drama of chronic illness and may feel resentful toward the caregiver/care recipient, for having changed dramatically, for being a party-pooper or for being inadequately available. Frustrated and feeling in over their heads, they may take off.
Rick Foster, a copier technician and part-time comedian in California, had first-hand experience with several of these examples. After Milla Gauzner — his girlfriend of nearly a decade — was diagnosed with metastatic breast cancer, she required Foster’s devotional care for several years. Having been an active woman prior to her diagnosis, Gauzner became very demanding toward the end of her life. “She was trying to maintain a sense of independence,” Foster recalls. “She sensed she was losing control.”
With the help of only one other individual, a college friend of Gauzner, Foster quickly found himself balancing a full day’s workload with the all-encompassing task of caring for his love. “I felt pretty abandoned,” says Foster. “People didn’t understand how to give something as little as cutting my lawn. They didn’t get how giving so little can be so big. ”
Paula Kamen — author of All In My Head, former blogger for The New York Times, and chronic daily headache sufferer for the past 20 years also had first-hand experience with chronic illness changing everything: “I was 24 years old when I began having chronic, daily migraines,” Kamen recalls. “It made dating difficult. I never knew how I was going to feel; I didn’t want to cancel too many times; and I never knew when I was going to tell my date about my condition.”
Now happily married, Kamen advises that healthy relationships are all about balance: “I am mostly self-sufficient these days,” she elaborates, “however, my husband knows I have a tendency to not feel well in the morning, so he takes care of the kids in the morning. At night, when he is exhausted from work, I do most of the caring for the kids.”
While I wanted to make my outside-the-care-group relationships work during the time of my mother’s illness, I simply did not know how. In addition, as much as my mother and I adored each other, our relationship was fraught with explosive power struggles. Looking back, reflecting on both the relationships that fell apart and those that got stronger, I have this advice for anyone affected directly or indirectly by chronic illness:
• To the caregiver: You have taken on a selfless, yet challenging role. Do your best to ask for help when needed, and seek professional support where necessary — through in-home care, counseling, and so on. Also keep in mind that there may be individuals in your life who want to support you; they just may not know how. Speak up and ask for what you need — whether getting your house cleaned, receiving a hug or having someone listen to your woes. You may be surprised at what you find: Someone may do it!
• To the care recipient: Nobody wants to feel ill, isolated or overly dependent, so know that you are not alone. On the days that you are not feeling well, accept the help that others are offering, and know that, in general, those who are offering help want to help. On the days when you are feeling up to it, a simple gesture of recognition toward your caregiver (a “thank you” or “I appreciate you”) can go a long way in maintaining a happy, healthy relationship with her.
• To friends and family of the caregiver and care recipient: If you want to help, but don’t know how, ask. Keep in mind that the smallest gestures — like sitting by the bed of an ill friend and chatting like “the old times” — can absolutely transform someone’s day. A reminder of what life was like before the illness, for both the caregiver and care recipient, is a breath of fresh air.
• To the community of the caregiver and care recipient: As in the case of friends and family, ask what you can do to help. Offering up a walk in the park, dropping off a chocolate milkshake or picking up some items at the market will make a difference in the life of the caregiver or care recipient. Sometimes, the gesture alone is enough. Even if the caregiver or care recipient turns down your offer, chances are that you will have warmed her heart and brightened her day.
Love is not simply about candy hearts, fancy dinners and risqué lingerie; rather, it is about truly being there for someone. So this Valentine’s Day, I invite you to stop a moment and reflect on the people in your in your inner and outer circles. Ask yourself: Is there someone who needs my help? Then go out there and give it.
e live at an exciting crossroads in the world of health care. Ancient medical systems like Ayurveda and traditional chinese medicine are as accessible as modern medical treatments like pharmaceuticals and surgery. One excels at systemic issues, the other excels at acute issues. While the choice is something to celebrate, it can also be overwhelming: We can end up confused about when to choose what and how to sift through the possibilities.
To help you navigate through the maze of integrative medicine treatment options, both for your loved one and for yourself (hey, what caregiver couldn’t use a massage?), I have interviewed leaders in the field and will be writing a series of blog posts on topic. To kick off the series, here is my interview with Andrew Weil, M.D., founder and director of the Arizona Center for Integrative Medicine at the College of Medicine at the University of Arizona.
Tory Zellick: What are the benefits of taking an integrative approach to medicine?
Andrew Weil: I define integrative medicine as healing-oriented medicine that takes into account the whole person (body, mind, and spirit) and that includes all aspects of diet and lifestyle. Integrative medicine emphasizes the therapeutic relationship between patient and healthcare practitioner and makes use of all appropriate therapies — both conventional and alternative. While open to new paradigms, the field is inquiry-driven and based in good science.
Following healthy diet and lifestyle practices enhances overall balance and supports the body’s innate healing capacity, thereby helping to optimize physical, emotional, and spiritual health and to prevent disease. I consider many complementary and alternative medicine (CAM) therapies to be core components of integrative medicine. I respect and honor the traditions behind these practices and believe they can offer therapeutic benefit in a variety of clinical settings.
Integrative medicine — with its emphasis on diet and lifestyle, disease prevention and health promotion — is the only practical way to transform our healthcare system and bring lower-cost, health-enhancing treatments into the mainstream, for the benefit of all.
TZ: If someone is only familiar with conventional medicine options, what is your general guidance for getting to know the world of CAM?
AW: Speak with your doctor about the CAM therapies you are considering or already using and ask for his or her opinion. A healing relationship between patient and health care practitioner is based in open, non-judgmental communication. If your doctor voices concern, ask for an explanation. There are clinical situations where a particular CAM therapy should not be used or could prove dangerous. If you suspect your doctor may not know about a specific CAM therapy that interests you, bring information about the method or agent to your appointment, so that your doctor can evaluate it with you. If your doctor simply is not open to lifestyle and CAM interventions, it may be time to find a new doctor.
Look for a knowledgeable primary care physician with whom you can partner to make good health care decisions about which diet, lifestyle changes [and] conventional and CAM therapies might be indicated, safe and most effective for you. Ask around for an experienced conventional medical provider who exemplifies good health in appearance, diet and lifestyle. The doctor should respect your value system, honor the complex nature of health and healing, and focus not only on symptom relief but also resolving the root cause of symptoms and illness. Ideally, work with a doctor who has personal experience with CAM therapies as well as relationships with the licensed CAM providers in your community.
The demand for physicians who practice integrative medicine, or who are at least open to its goals, is still far greater than the supply, but things are improving. I recommend looking for a practitioner in your region who has completed training at the Arizona Center for Integrative Medicine (AzCIM), which I direct.
TZ: What are some especially safe CAM therapies, with the lowest possible risk, that are useful in responding to most health conditions?
AW: Many conventional health care providers consider nutrition to be a complementary therapy, which speaks to the sad state of medicine in this country. Good nutrition is one of the most important factors shaping health, and it is important to learn how specific foods affect inflammation in the body — as part of an overall strategy for reducing the risk for chronic illness.
I believe that the cornerstone of a healthy lifestyle is a nutritious and satisfying anti-inflammatory diet that emphasizes a wide range of brightly-colored fresh fruits and vegetables; whole grains and other slow-digesting carbohydrates; fatty cold-water fish, for their anti-inflammatory omega-3 fats; vegetable sources of protein including beans, lentils, and fermented whole soy products; seeds, nuts and spices; and the appropriate use of vitamins and supplements. Beverages of choice should be pure water and good green tea. In addition, it is important to lessen exposure to foods that promote inflammation by reducing the intake of highly-processed, manufactured foods and rapidly-digesting carbohydrates; avoiding fast food and products containing partially-hydrogenated oils or vegetable shortening; and minimizing the use of polyunsaturated oils such as sunflower, safflower, soy, and corn.
Specific CAM interventions offer the potential for general health benefits — such as mind/body therapies, including meditation and guided imagery, massage therapy, clinical hypnosis, chiropractic and osteopathic manipulation, and acupuncture. These treatments can be considered safe and effective for the prevention and treatment of disease, when used appropriately and delivered by experts in the respective fields.
TZ: How can someone know when it is time to use a conventional therapy and when it is time to use a CAM therapy?
AW: Symptoms that are unusually severe, persistent, or out of the range of your normal experience warrant immediate medical attention by a conventional medical doctor. A dose of common sense helps, too: Do not rely on CAM therapies for a health condition that conventional medicine can manage well.
Physical trauma is a good example of a clinical circumstance where conventional medical care is unquestionably indicated. If I were involved in a serious automobile accident, I would hope that paramedics would be called. I would want to be transported directly to an emergency care facility, in a modern hospital, not to the office of a massage therapist or acupuncturist. That said, once out of danger, I might use the massage and acupuncture resources to help speed up the natural healing process.
There are a few other clinical situations where a conventional medical approach is definitely warranted: Acute surgical and medical emergencies such as a ruptured appendix or heart attack, treatment of bacterial infections, and the diagnosis of complex medical problems. Conventional medicine, however, is generally less effective in the treatment and cure of viral infections, chronic degenerative diseases, chronic pain and most forms of allergic or autoimmune disease. These types of clinical scenarios often respond well to carefully-chosen CAM modalities.
Explore diet and lifestyle changes or CAM therapies individually, allowing enough time — usually six to eight weeks — to experience benefit and judge results, before moving on. If symptoms worsen or fail to subside, schedule an appointment with your conventional doctor, for evaluation.
TZ: How open do you find that today’s conventional doctors are towards CAM therapies?
AW: Conventional medical doctors are even more fed up than patients with the drug-only approach to preventing and treating illness. Today’s health care providers are hungry for the opportunity to better help patients access their innate healing capacities, even if the environment in which they work does not readily support the approach — for example, if insurance company refuses to reimburse alternative treatment.
In recent years, there has been an exponential rise in the number of conventional medical practitioners exposed to integrative medicine, and through our educational programs, AzCIM has played a prominent role in shifting the perspectives of conventional doctors. AzCIM is working toward the day where integrative medicine will be a standard part of the medical school and residency curriculum, so that no future doctor will leave medical training without a working concept of health, an in-depth understanding of the importance of healthy dietary and lifestyle measures, and an appreciation for the therapeutic potential inherent in healing traditions from around the world.
AzCIM also has sponsored national integrative medicine conferences for practicing health professionals, and these conferences have been consistently well-attended. In addition, AzCIM offers a variety of popular educational courses for the public, on the topic of integrative approaches to health. The success of AzCIM has catalyzed or influenced the creation of similar programs across the country.
As far as the lay public’s recognition of integrative medicine, some people may not have recognized the term, even five years ago. But the dissemination of integrative health care information among health care providers, combined with an explosion in media coverage and a growing number of credible websites devoted to integrative health care, has resulted in widespread awareness of integrative medicine and its potential to help heal not only individuals, but also and our entire health care system.
TZ: What are some of the simplest and/or most helpful CAM-based stress management tools that caregivers can utilize, to improve their sense of wellness?
AW: Everyone needs to practice effective means of stress management to optimize health and wellbeing, and nowhere is this advice more applicable than for caregivers. I teach a variety of techniques, including meditation, regular exercise, and laughter, but my favorite method for managing stress is the 4-7-8 (or “Relaxing Breath”) exercise. Here is how you do it:
Sit or lie in a comfortable position and place the tip of your tongue just behind your upper teeth, throughout the exercise:
Exhale completely through your mouth, making a gentle “whoosh” sound.
Close your mouth and inhale quietly through your nose to a count of four.
Hold your breath for a count of seven.
Exhale completely through your mouth (“whoosh”) to a count of eight.
Inhale and repeat the cycle three more times, for a total of four breaths.
My heartfelt thanks to Dr. Weil for sharing his time and expertise! I hope this information helps guide you and your loved along the journey through the world of integrative medicine. Stay tuned for the next post in this series — an interview with New York Times best-selling author Joseph Mercola, MD.
On Jan. 23, 2009, I watched my mother take her final breath. After six-and-a-half years of suffering, my mother no longer was in pain, and her body no longer was betraying her. That moment was one of the most peaceful in my life. Only the period that followed was full of inner turmoil.
When you become a caregiver, the role becomes part of your identity. It is like becoming a mother: You suddenly are responsible for a life other than your own — ensuring compliance with medication regimens, scheduling and attending doctor appointments, preparing meals, and so on. So what do you do when your Mama role comes to an end?
The end of my caregiving journey was the beginning of a new journey — one of grieving, healing, and trying to find what my “new normal” would be. What would my life be like without an adrenaline rush whenever the phone rang after 6:00 p.m.? What would it be like without Mom — no mother to call when I need “Mom,” and no mother needing me? Would I be okay without being needed?
This identity crisis was quickly followed by “what-ifs” and “should-haves”: What if I had done a better job at fill-in-the-blank? What if we had chosen a different treatment option? I should have let her have that grilled cheese sandwich! I should have taken her to that movie! I should have been a better kid when I was five years old! The truth is, I did the best job I knew how, giving my mother 110 percent of my effort, time, and attention. I simply was torturing myself with 20/20 hindsight.
This Jan. 23, it will be four years since Mom passed away. Not a day goes by without my thinking about her. With each passing day, however, the ability to cope gets a little bit easier. The void in my heart fills with memories of life and love, not loss; the pit in my stomach aches less; and my outlook on the future improves. My experience most certainly has defined me. I did not, however let it destroy me. Instead, I chose to draw from it as a way of bringing comfort and guidance to those who are now in some stage of the journey I began a decade ago. It is to these individuals, as well as to my younger self, that I have this to say about losing your loved one:
1. Take time away.
Four weeks after Mom passed away, my dad, brother and I purchased one-way tickets to Bangkok, Thailand, with the intention of relaxing, reflecting, working through our pain as a team, and returning home with a sense of excitement about life. I look back now and understand just how important that down-time was for our family. Mom had been sick for the better part of a decade, and as a result, we had been in fight-or-flight mode the entire time, giving our parasympathetic nervous systems little or no rest. I know that not everyone can leave work, pack up their lives for an undisclosed amount of time, and take off to a tropical destination. Even a weekend or week away will do your mind and body some good. So whatever you are able to pull off, be sure to give yourself the opportunity to retreat and check out.
2. Allow yourself the grieving and processing time.
Any wound, physical or emotional, requires time to heal. Everyone grieves differently, but as a general rule, you will have good days and not-so-good days. Give yourself permission to cry when you feel like crying; excuse yourself from situations that trigger you; and simply do not answer the phone, if you are not up for yet another heart-to-heart with yet another concerned individual. This time is yours.
3. Do not make any drastic decisions.
Here is the best piece of advice I received, from a friend who had lost her mother when she was my age: “Give yourself two years. Something changed for me at that time. My brain fog cleared, the hurt subsided, and I felt better about making changes.” While the two-year mark turned out to be spot-on for me, it may not be the transformation landmark for everyone. Regardless, take the time to do some healing before deciding to send all your loved one’s possessions to a thrift store or sell your home and move to a tropical island (as I wanted to do).
4. Life goes on.
Following my mother’s death, I was convinced that there was absolutely, positively no way that life could go on. In my opinion, the world tilted on its axis that Jan. 23, 2009. But as much I felt that the world had come to a screeching halt for all of humanity, life in fact continued on normally for everyone but my family. And so it will be with you. Behold the “thirty day” rule: The first 30 days after a loss or catastrophe, the phone may ring, the mail box may be full of cards, and the refrigerator may be stocked full of tuna casserole from your hundred closest friends and neighbors. Very quickly though, life will move on for those not directly involved. At that time, begin seeking help from those who bring you comfort on a regular basis — be it a sibling, best friend, or extended family member. If your confidante happens to be the loved one who died, be sure to find a support group or therapist who can help you transition.
5. Have compassion for yourself.
It is important to always remember that you became a caregiver because you care. You stepped up, took charge, and gave the situation your all. The outcome may not have been the outcome you had hoped for, bargained for, or wished for on a shooting star, but it is your new reality. Cut yourself some slack; do not muddle over the shoulda-coulda-wouldas. Be kind to yourself; forgive yourself for anything you feel you could have done better; and know the person you cared for was loved and respected throughout the process.
In loving memory of Cindy Zellick.
I recently posted an article, “Top 10 Facts You Need to Know about Clinical Trials.” Now, let’s explore the top questions you need to ask clinical trial leaders — including the principle investigator and the medical team — so as to effectively evaluate and support your loved one through a specific clinical trial that your loved one is considering.**
1. What do you know about this drug or procedure?
Be sure to find out how many animals and/or people have been tested to date; what the results were; what phase of testing the clinical trial is in; and the safety profile of the drug or procedure — including possible adverse reactions. Ask about a website where you can find out more information about the history of this clinical trial.
2. What are some possible benefits and risks?
Find out exactly how the treatment might improve your loved one’s condition in the best-case scenario, and identify the risks involved — everything from adverse to fatal reactions. Ask about how the treatment may affect your loved one’s quality of life, and find out what symptoms to look out for and whom to call in case of side effects: What changes should you note and report immediately?
3. What are the protocol requirements?
Find out how many appointments will be required weekly, monthly and overall; how long the appointments will be; where the appointments will be held; what procedures, tests or scans will be involved; what specific challenges these may pose for your loved one; how many medications will be required; how frequently the medications will need to be administered; and what data will need to be tracked and how often. Ask if there are other protocol requirements you should know about.
4. What is the structure of the protocol?
Ask the study coordinator how many individuals are participating in a given trial and what the guidelines are for that trial. Find out if there will be a placebo group and who, or what, will the results be compared to. Determine what exactly the investigators are looking for in the trial, and therefore, at what point the treatment will be terminated. For example, are the investigators looking for halting the progression of disease or for catalyzing the remission of disease? If the disease continues to metastasize or progress, will the patient therefore be eliminated from the study?
5. Who is responsible for the study?
Ask about the credentials of the primary investigator and medical team, and find out how many studies they have conducted in this field and regarding this particular health condition.
6. Who pays for what?
Find out which expenses are covered by the clinical trial, which may be covered by your health insurance company (be sure to verify with your insurance representative) and which will be out-of-pocket.
7. Will we have access to the treatment?
See if this clinical trial offers a compassionate drug use program. If it does, your loved one will have access to the treatment before it is available in the market, assuming s/he has responded well to the treatment during the trial.
8. Are there possible contraindications?
Make sure the principle investigator and medical team are familiar with all the therapies your loved one is using. If they are not, see if they will speak with your loved one’s healthcare providers, to evaluate whether there are possible contraindications. Make sure you know if certain treatments must be stopped before participation in the trial.
9. What is the ultimate goal of this study?
Find out how the information from the study will be used, and ask about the next steps after the clinical trial.
10. What are some other options?
In case this clinical trial does not seem to be a good match, ask the trial leaders what other options might be available to your loved one.
As you consult with your loved one and weigh the pros and cons of participating in the trial, do include your own needs as a factor to consider — specifically, the feasibility of the extra caregiving duties required by the clinical trial. Do also share your honest thinking about the various risks and benefits of the trial. Keep in mind, however, that the decision is ultimately your loved one’s to make; after all, it is her or his own life at stake, and therefore, choice to make.
**Special thanks to:
John Schall, CEO Caregiver Action Network
Ken Getz, founder and board chair of the Center for Information and Study on Clinical Research Participation (CISCRP)
Craig Lipset, Head of Clinical Innovation at Pfizer Worldwide Research & Development
Dr. Sean Mackey, MD, PhD, Chief of the Division of Pain Management at Stanford University
Rebecca McCue, division research manager of the Stanford Systems Neuroscience & Pain Laboratory (SNAPL)
Medical institutions, federal agencies, pharmaceutical corporations and patient advocacy organizations conduct thousands of clinical trials annually, and according to John Schall, CEO of the Caregiver Action Network, family caregivers are the backbone of the clinical trial experience. “Caregivers predominantly act as care managers,” he explains. Among other roles, “they make sure appointments are kept, and they manage medications and medication regimens — both compliance and adherence.” Learning about the world of clinical trials, however, is akin to learning to speak a new language, and it can be overwhelming to both caregiver and care recipient — especially in the middle of a health crisis. So here is a simple breakdown of the top 10 facts you need to know about clinical trials:
1. What are Clinical Trials?
Clinical trials are a combination of interventional studies and observational studies conducted on volunteer patients. Interventional studies research how drugs, procedures, devices or lifestyle modifications affect a select group of patients with a common health condition. Observational studies research trends among select patients, through comparing released medical data and healthcare records or through monitoring a group with a common health condition. For example, investigators may observe a select group of women to learn about the effects of different lifestyles on adrenal health. Although observational study participants are not assigned an intervention as part of the study, they may continue with whatever interventions are part of their routine care, such as pharmaceutical prescriptions.
2. Why Conduct Clinical Trials?
The purpose of clinical trials is to develop and bring to the market new and effective treatments for disease.
3. How Common Are Clinical Trials?
In 2006 alone, there were about 15,000 drugs in the research and development (R&D) pipeline (1) and about 2.5 million clinical trial volunteers.(2)
4. Who are the Players in a Clinical Trial?
Key players are the trial sponsor, who pays for the study; the principle investigator, who oversees the research; medical staff including doctors, nurses and social workers, who work directly with patients and collect data; the caregivers, who oversee patient compliance with clinical trial protocol; and the patients, who are the subject of study. “Patients and caregivers are the heart and soul of this research,” says Craig Lipset, Head of Clinical Innovation at Pfizer Worldwide Research & Development. “No new medical advances would be made without them.”
5. Why Might My Loved One Choose to Participate in a Clinical Trial?
According to Ken Getz, founder and board chair of the Center for Information and Study on Clinical Research Participation (CISCRP), there are numerous reasons to participate in a clinical trial — from access to new and alternative treatments, to personalized and expert medical attention, to free medicines and procedures, to the desire to leave a legacy by helping the advancement of medicine. “Participants may know in their heart of hearts that [a specific treatment] will not cure the progression of their disease,” Getz elaborates on the latter reason, “but if they participate, they may be able to help future patients.”
6. Where Do I Find Out about Clinical Trials for My Loved One’s Health Condition?
First, contact a patient advocacy organization that is ailment-specific to the condition affecting your loved one, and ask about clinical trial options. For example, if your loved one has Alzheimer’s, contact the Alzheimer’s Association. A simple internet search using the formula of “[disease name]” + “association” should pull up some of the top national advocacy groups. Second, visit the National Institutes of Health website on clinical trials, to find a list of upcoming research studies looking for volunteers. Third, contact CISCRP for information about, plus the added bonus of support throughout, upcoming clinical trials.
7. Does Participating in a Clinical Trial Mean Stopping Other Medical Therapies?
In some cases, there may be contraindications between therapies already being used and the therapies that will be used in a clinical trial. It is imperative to let the clinical trial medical team know exactly what therapies a loved one is receiving, whether prescribed or over the counter. These therapies may include drugs, supplements, bodywork, dietary modifications and so on. The medical team, in some cases in combination with the care recipient’s own doctor or holistic health provider, will determine which therapies can be continued and which may need to be stopped before participating in the clinical trial.
8. How Risky Are Clinical Trials?
According to Lipset, observational studies — such as the sharing of medical files — typically pose no added risk, and the risk of interventional studies depends on numerous factors. For example, if two known drugs are being compared to see which is more effective in the treatment of a particular illness, the risk is low. It is important to note that even if a medication is FDA approved, an individual may suffer adverse side effects. If an unknown drug is being tested, however, the risk depends on how far along that drug is in the R&D phase: The more it has been tested, the less risky it is. Even tried-and-true drugs or procedures may be risky, adds Rebecca McCue, division research manager of the Stanford Systems Neuroscience & Pain Laboratory (SNAPL), such as in the case where an FDA-approved drug is used to treat an illness other than that for which it was approved.
While holistic intervention such as cognitive behavioral therapy poses negligible risk, other alternative medicine therapies may pose some risk. “A number of alternative therapies don’t go through approval with the FDA,” explains Sean Mackey, MD, PhD, Chief of the Division of Pain Management at Stanford University. For example, he says, nutritional supplements are unregulated by the FDA and therefore “have not been through the close scrutiny that pharmaceuticals go through. The vast majority are not dangerous agents, but we simply don’t know their long-term safety and efficacy…We haven’t studied a lot of these over-the-counter supplements in large-scale trials, because there are not drug companies interested in doing that.”
To determine the exact risks associated with a particular clinical trial, experts agree, it is important to speak directly with the principle investigator and medical team of the trial your loved one is considering.
9. What steps are involved in evaluating the safety and efficacy of drugs used in clinical trials?
Pharmaceutical trials begin with years of pre-clinical research in laboratories, followed by testing on animals and concluding with several phases of testing on people. Before moving from one stage of research to another, the clinical trial team must submit an Investigational New Drug application (IND) — through which both the Food and Drug Administration (FDA) and independent ethics committees review results, prior to authorizing the continuation of the study. When a study begins working with people, it starts off with a small group in Phase I and steadily increases the number of people involved, until Phase IV — where the research team begins exploring additional indications for that drug. After completing Phase IV, the clinical trial team submits a New Drug Application (NDA) for approval to go on the market. Of the 5,000-10,000 drugs that annually enter R&D, only 250 make it to pre-clinical trial testing; only five make it to clinical trial testing; and only one makes it to FDA approval.(3)
10. How involved should I be in my loved one’s decision to participate in a clinical trial?
To ensure the safety and quality of life for your loved one, get actively involved in evaluating the pros and cons of participating in a clinical trial. For starters, your loved one “may struggle to understand and weigh the risks and benefits” of participating in a trial, says Lipset, so by gathering and sifting through all the relevant information ahead of time, you can explain exactly what is involved. In addition, agree Lipset and Schall, you can help your loved one recognize and evaluate the impact not only of the risks and benefits of the treatment itself, but also of the protocol demands of the trial — including travel requirements, financial commitment, time constraints and additional caregiving duties. Be sure to discuss issues that affect not only your loved one, but also yourself, advises Schall, since you will be a central player on the clinical trial team.
Stay tuned formy next article, “Top 10 Questions to Ask When Considering a Clinical Trial.”
1. IMS Lifecycle, R&D Focus
2. Center for Information & Study on Clinical Research Participation and National Institute for Health, 2007
3. PhRMA and Tufts Center for the Study of Drug Development
Sometimes, to be a good caregiver, we have to put our own needs and opinions aside, so as to support our loved one in making their own choice about their own life. Take the example of my mom deciding to participate in a clinical trial: Three years into her battle with breast cancer, the cancer metastasized to her bones. Initially my mom tried chemotherapy, but it significantly compromised her quality of life; so she decided instead to go with alternative medicine.
I was all for that decision.
My mom subsequently outlived her predicted “death date” by one and a half years. In addition, she was doing quite well and feeling relatively pain-free. In my opinion, if it ain’t broke, don’t fix it. When a new chemotherapy option was offered as part of a clinical trial, however, my mom jumped at the chance to participate. Somehow, she felt convinced that this chemotherapy option was her one chance, her final shot, of maybe making it out of cancer alive. If she did not survive the trial, she reasoned, perhaps someone else a decade later would survive, in part because of her participation in the trial.
While I disagreed with my mom’s decision, it was hers to make. Everyone in the family had voiced their respective opinions, and at the end of the day, it was my mom’s life. So as my mom’s caregiver, I ultimately supported the participation in the trial, albeit reluctantly. The thing is, we knew very little about the trial and even less about how to assess what we did know about it; so we were poorly informed about it and unprepared for the impact it would have on our lives.
On the day that my mom was to be evaluated for participation in the trial, I drove us three hours into the city, to the clinical trial facility. Unsure of what questions to ask, and feeling overwhelmed, I simply watched as a nurse practitioner, research oncologist and trial facilitator flipped through years of medical records and asked my mom questions. After a final examination, the team decided that my mom could participate in the trial, and they advised us of the protocols:
1. My mom would have an exam once every three weeks, at the clinical trial facility.
2. One hour before each exam, my mom would have blood drawn in the laboratory near that facility.
3. Every six weeks, my mom would have a nuclear bone scan and CAT scan — one requiring a radioactive tracer injection and the other requiring fasting and drinking an orange-colored contrast liquid.
4. My mom would take the trial medication daily, along with another medication that had been FDA-approved. Aside from these two medications, my mom would not be able to take anything else — over-the-counter, herbal or prescribed — without the prior consent of the medical team.
Looking back, I can see the warning signs of how demanding this trial would be on my mom, not to mention on myself; but at the time, the protocol seemed simple enough. What I did not take into consideration, or have the foresight to ask, was the following:
1. What days and times were appointments available, and how long would each appointment take?
2. Would my mom be able to handle the six-hour, round-trip commutes in the car, considering that she had cancer in her spine?
3. Who would pay for the tests every six weeks, and where would they be located?
As it turned out, exam appointments were only on Tuesdays, in the middle of the work week — leaving me, and me alone, to drive my mom. While these appointments theoretically took just half an hour each, it was only if the lab had the blood work done in time for the scheduled appointment and if the trial clinic team was on time. In reality, the appointments took up to several hours. In addition, if we scheduled late-morning appointments, we could leave the city in time to avoid rush-hour traffic on the way home, but it meant driving out to the city shortly after dawn. If the appointments ran behind, we had to stay in the city until the evening and arrive home late at night, to avoid sitting in traffic.
These trips created a pressure-cooker environment for my mom and me, adding stress to an already-strained relationship with its underlying power struggle: She was the mother, and I was the daughter; but for the sake of her wellbeing, the roles were often reversed. In this case, I was responsible for making sure my mom woke up, did her morning rituals, ate breakfast, and got in the car in time to make it to the clinical trial appointments. My mom’s short-term memory was nil, and she often acted like a child — wanting to stop at a café for tea or get a grilled cheese sandwich along the way, when doing so would compromise our ability to get to our destination on schedule.
That said, my mom always held her head high and never complained about the commute. For me, however, every third Tuesday was torture. For starters, nobody wants to spend six hours on the road, except maybe a truck driver. In addition, I was essentially taxiing a porcelain doll, which left me riddled with anxiety about a potential fender-bender in the city. I was, after all, from a small town with two lanes of traffic total, not five in each direction. Then there were all the what-ifs: What if we arrived late to the appointment and could not get in? What if the test results did not make it to the clinical trial office in time for the appointment – making our drive for naught? What if test results found something I did not want to know, like evidence that the disease was spreading?
Fortunately, our insurance covered the cost of the bone and CAT scans, and my mom was able to get them done locally. Each test, however, was at a different facility. In addition, for whatever reason, my mom always wanted to do both tests on the same day — which meant fasting all evening, waking up, drinking orange contrast liquid for the CAT scan, driving to hospital and receiving the radioactive tracer, driving to the imaging center and getting the CAT scan, then driving back to hospital for the bone scan. When all was said and done, it was time to eat, but by then, my mom was exhausted and wanted nothing to do with food.
After almost a year on the new chemotherapy, the clinical trial team decided it was not working for my mom in the way they had anticipated. The team advised my mom to stop the chemo immediately, then reconvene with the research oncologist in two months, to discuss other treatment options. Sadly, my mom passed away before the consult date. Still, she never regretted participating in the trial, knowing that others like her could benefit in the future.
By supporting other caregivers through the process of looking after their loved ones, I strive to continue in my mom’s footsteps — honoring and continuing her quest to help out. For this reason, I created The Medical Day Planner – hoping to ease the journey of those in the caregiving role today. Also for this reason, I have been busy interviewing pharmaceutical corporations, university research facilities, clinical trial associations and caregiving organizations, so as to guide caregivers on how to optimize the clinical trial experience for all parties involved. Stay tuned for upcoming articles on this topic — including how to find clinical trials for various illnesses, what questions to ask clinical trial facilitators, how to do a cost-benefit analysis of a given trial, how to organize information related to a trial and how to support a loved one through the process of a trial.
Meanwhile, Mom, wherever you are, I hope that you are proud of me.
We have all heard the alarming statistics regarding healthcare and caregiving; according to AARP, there are 66 million informal caregivers in the United States alone. Fifty-one percent (51%) of family caregivers are between the ages of eighteen and forty-nine (18-49) and the economic value of these “informal caregivers” service is approximately $450 billion! One in eight Americans currently have been diagnosed with Alzheimer’s, leaving fifteen million unpaid family members to care for their aging and ailing family and friends. Are you getting a clear picture? This is a large demographic of people who are being thrown into a role of caregiving with no formal training and possibly at a moment’s notice.
When I “met” Melody of eCaring via email, I was excited to learn all I could about the product she had contacted me about. Between writing The Medical Day Planner and creating an iPhone app (available in the App Store under “The Medical Day Planner”) to help caregivers track everything from contacts, medications, tests & scans, procedures, appointments to hospitalizations, it is clear that I am a huge advocate of organization, tracking and more organization. Any time I find a tool to help caregivers stay organized, up-to-speed and educated about the patient’s care/progression, I am more than happy to share.
The beautiful thing about eCaring is that it was created by caregivers for caregivers. Call me biased, but I have always had a hard time taking advice from individuals who have no experience; this is in regards to anything in life. Let’s be honest, no matter how raspy a thirteen-year-old’s voice may be, they will never be able to fully sing the Blues with their limited life experience. Having a program for caregiving designed and beta tested by caregivers has truly helped create an all-inclusive guide/program. eCaring, The Heart of Better Care Management, has honestly thought of everything!
The greatest concern for a primary caregiver (or care manager) is knowing what is going on with the patient while the primary caregiver is not present and someone else is in the caregiving role. Imagine you are the primary live-in caregiver for your father who has late stage prostate cancer. Like many Americans, you still need to work part-time away from your father’s home to generate enough income to pay the bills. Your job allows you to work in the office half of the day, and work from home in the afternoon. While you are away at the office Monday through Wednesday, your sister cares for your Dad, Thursday morning your Aunt Lisa cares for your dad and on Friday morning the neighbor lady checks on him. You now have three other individuals who are helping you care for your dad; all of who need to be on the same page as far as what information is important to track and report back to you. (Getting complicated yet?) It is the “reporting back” that can get tricky, and I have always said “caregiving does not need to be a lesson in memorization.” If all the caregivers for a single individual had one book/guide/program to document in, the “reporting back” would be easy, organized and accurate.
eCaring is an online program that takes the thinking out of what needs to be documented and tracked. Each day is broken into forty-eight, half-hour sections. Each section can be color coded to show if the patient is either sleeping (blue), awake (green) or outside (teal). You also have the option to click on a half-hour section and document other daily activities including:
• personal care
• mental state
• special problems
• vital signs
Each of the above sections is then again broken into several picture coded options that once “clicked” are automatically moved into the time section selected. Under “Personal Care,” there are picture icons for bath, dentures, wash hair, etc. “Eating” options include meal, snack, refused meal, refused beverage, etc. Are you following me? An example would be:
At 8am, Dad is awake, has used the toilet, brushed his teeth and gotten into the shower. As the caregiver, I would code the 8am section green for “awake”, click the “Toilet” picture under the Toileting section, click the “Brush Teeth” and “Shower” picture under the Personal Care section.
As the day continues, if all the caregivers involved continue to keep eCaring up-to-date, any new caregiver who comes into the picture will know at a glance exactly what has occurred with the patient that day, week, and month. The program is intuitive, easy to use and certainly worth checking out if you are finding yourself in a caregiving role. In fact, the program is so in depth and offers so much more than I described here, do yourself a favor and go to www.eCaring.com for more information.
10 years…What The #$%&?
I remember the Chico High Class of 2002’s last assembly- we had to decide whether we wanted a ten-year or five-year reunion. We all sat in the gymnasium, huddled on the bleachers, released from regular class to discuss when we would get to see each other again. We were excited and scared for what lay ahead of us; tiny fish in a very large sea. We all had big dreams of college, moving out of our parent’s house for the first time, making new friends, making money and…well…partying! Although it seemed an eternity away, we decided ten years would be best.
This Saturday was my ten-year high school reunion. Holy moly, did time fly! Unreal, really. Mind boggling. I remember my parents saying on several occasions to “hold on to these years, they go fast,” or “I would take my high school years back, any day.” I get it; if this is how fast life flies, I better start paying attention.
I often write about The Book of Life; my imaginary, unrealistic guide I followed (or tried to follow) through life, until the day my life forever changed. Once Mom was diagnosed with breast cancer, I threw the Book of Life out the window…at ninety miles an hour. I “quit” college to experience an adventure of a lifetime in Hawaii, and gave up my adventure to come home and care for Mom in her final days. All decisions I stand behind, however, not decisions I thought were acceptable in my The Book of Life. My “book” forgot to mention that I would bury a childhood best friend, two grandfathers and my mother before I was old enough to sign on the dotted line for a rental car.
I also was not prepared to be presenting and doing a book signing for a book I wrote, at a bookstore where I bought textbooks before I “quit” college, the week of my ten-year reunion! Life is silly- and just like Forrest Gump said, “Life is like a box of chocolates, you never know what you are going to get.” I know we have all made fun of, or giggled at this line, but it is a classic (and so unbelievably true).
When a client asked me about how I felt, knowing that my “big reunion” was coming up, I honestly replied with “slightly disappointed.” “Why?” this client replied. Because I am still ME. When I hear my voice in my head, it’s me. When I refuse to do laundry until there is no more clean underwear, it’s me. When I giggle until tears are streaming down my face and my stomach hurts, it’s still me. I one-hundred percent believed I would be a different person by now…but I’m still me. Go figure?
My group of girlfriends from high school and I all agreed to ditch the reunion for a reunion of our own. It was only fitting- for being all 4.0-3.8 GPA students, we certainly didn’t attend much school, or school functions. We were antisocial to say the least. I mean, we were social, just not with others our age. We had a tendency to have friends at the college (sorry Dad). The boys were much cuter at the college level, and they had cars…that actually fired up when you turned the key. What can I say?
I was excited to reunite with these girls. We have had several “reunions” in the last few years, but I was still a bit nervous to catch up and see what everyone else was up to. My old Book of Life has a tendency to rear its ugly head at inappropriate times, making me feel like maybe “I could have done something better,” “I’m not married, or even engaged, let alone kids…am I failing?”
Some of us are married, some of us have kids. Some have college degrees, some have solid careers. Some are self-employed, while others are rocking at being awesome mommies. Some of us have buried a parent, and all of us have buried a friend or family member. Unfortunately, we are a war generation, and some of us did not make it home.
All in all, the reunion was a much needed reminder that we are all on our own path, and doing just fine. Although I am nowhere close to where I thought I would be at twenty-eight, this weekend was verification that I have taken my lemons and made a pretty decent lemonade.
Being from a small university town, I fee I have always had an advantage. I am surrounded by individuals from all walks of life, including very successful entrepreneurs, advocates and of course, authors! Our very own blogshpere friend Jan Hasak resides just miles from my front door and has been known to share a cup-of-joe or two with yours truly.
Just a few weeks ago, I walked into our local cancer center hoping to donate a copy of The Medical Day Planner to the center that had certainly made the difference for Mom. That day I met an amazing woman by the name of Teresa (Terry) Matthews. She has a wonderful story and an incredibly large heart. After her battle with cancer, she decided to also write a book with the intention of helping others. Below is a brief back story to her book, which I highly recommend you pick up.
When I was diagnosed with ovarian cancer in 1984, there was essentially no information to support a cancer patient with non-clinical concerns. The only books available were technical, filled with (terrifying!) statistics and medical jargon. I craved usable tips and practical advice and I was desperate to “talk” to another woman who had walked the journey. Most of all, I felt very much alone as I coped with the challenge of my life.
As my treatment progressed, friends were diagnosed with cancer and I was passionate about passing on the little tips and coping skills that allowed me to remain sane and reframe my experience. I offered to meet with them, one-on-one, to give them hope (people DO survive, and you can, too!) and to share with them the little things that made my life easier as I went through the rigors of treatment. I began to write down the advice by category – chemotherapy, dealing with fear, social issues. Eventually, I realized I had a book! I wanted to reach beyond my local community, and Cancer: The Adventure of Your Life! is the fruit of that effort.
The book is ideal for a newly diagnosed person, since it addresses the overwhelmed feelings that accompany the diagnosis and guides the patient and family through the initial problem-solving questions of where to seek treatment, who to ask for help, and how to deal with family and work issues. It makes a great gift from loving friends who don’t know what to do! It also suggests ways friends can help and offers caregiver tips. The large print and simple language make it user-friendly. The hope-filled tone make it a guide for the heart.
I have to admit that I have been excited about and dreading this “thank you” post for quite some time. It’s like accepting a Grammy…no joke! I have so many people to thank for making The Medical Day Planner possible, and I will feel absolutely terrible if I leave anyone out. So here I go:
A big thanks to Robb Wolf and Nicki Violetti for introducing me (and selling me) to Erich Krauss, of Victory Belt Publishing. Who knew that brainstorming business ventures over delicious espresso would lead to this? Your constant support and backing means more than you know. I couldn’t have asked for a better surrogate family.
To Robert Strazzarino; the man with sixty-mile-an-hour fingers on the key board. Honestly, I’m not sure this project would have ever taken off without you! I remember sitting in your office, completely unsure as to how to make a prototype. Within four minutes you had ninty-gillion online printing companies up on your computer screen, ready to make my dream of The Medical Day Planner come true. Thank you!
To Chris Friedland; the only guy I know who you can invite to lunch, will give you the best (and most honest) advice, and then refuse to let you pay for lunch. I value your opinion, and thank you for giving me the confidence to pursue this project. I owe you some salmon sashimi!
To Mieken McNally; for not only being a fabulous friend and support system, but for knocking the attorney section of this book out of the park. Let’s be honest, without Mieken’s ability to turn something very complicated into something everyone can understand, none of us would be able to make it through the attorney portion of the book without falling asleep.
To Kelly Milton; for taking my vision for a cover and a brand and making it a reality in the first shot, when the “professionals” at the publishing house missed it by a mile. You are an amazing graphic artist and a life saver.
To Karina Bangay and Sara Scott; two women who stepped up and took over my business without a second’s hesitation after my mom’s passing, allowing me to travel, grieve and cleanse. It was during that travel time that The Medical Day Planner was conceived. I will forever be in debt for your kindness and selflessness.
To Patty Principi, Marlena McCrea, Deanna Leah and Gail Cafferata; my proof readers! Thank you for spending countless hours reading over the drafts of The Medical Day Planner and adding your own personal expertise. Without you and your input, this book would have been a cancer-guide, not an ailment-neutral guide. Because of your time and dedication, this book will help so many people.
To Erich Krauss of Victory Belt Publishing; thank you for taking a chance on a project that was out of your comfort zone and understanding the possible impact this book will have on so many caregivers and patients.
To my friends and clients; your listening ears and constant support have helped me maintain a consistent forward progression. Without even knowing it, you have lifted my spirits in moments of sheer desperation and angst – you know who you are.
To my Aunties; my mom continues to live through us, our relationship and, well… our fabulous girl time! You have done all you can to fill a void that is nearly impossible to fill. I feel your love every day and can’t thank you enough for our time away from the boys and our forever-bond.
To Maile; my “super-tinks, wide-mouth bass pittt-buuullll.” I realize many people might find it completely ridiculous and absurd to thank a dog, but this dog has been through more tough times with me than many of my friends. She snuggles with me when I can’t get out of bed, licks my tears when I can’t put a smile on my face and is still oh-so happy to see me when I come home after eighteen hours of work. She was the first “person” to console me after I received the call in Maui that my mom was sick again. She made the journey across the Pacific and uprooted her happy beach life in Hawaii to become a California dog. Her unconditional love has allowed me to never feel alone, even when I wasn’t capable of communicating my need for comfort and consoling.
And to my men;
Oh, Dad! It is obvious to so many that none of this would have ever come to fruition without you. The constant “how is the book?” “do you need anything to finish to book?” and “what can I do to help?” kept me on track. You have kept me grounded, motivated and confident my entire life. I am quite possibly the luckiest daughter in the entire world.
Nick, my not-so-little, little brother; my ego booster and non-editing proof reader. According to you, everything I write is perfect, just the way it is! We have certainly had our moments, as most siblings have, but I couldn’t have asked for a better travel buddy, friend and roommate. You are the only other person on this planet who feels the same pain and sense of loss as I, and for that, we will forever hold a special bond.
Ryan; a man who has been willing to be a quiet support in the background of complete chaos for years and years and years. Your willingness to put your needs and wants aside and take “second place” to my mom, and then myself for all of these years is something I will never be able to repay. For a guy who is nearly impossible to wake once he is asleep, I find it amazing that you can sense the first drop of one of my tears hitting my pillow, and be fully prepared to deal with the waterworks that are about to flow. I know I wouldn’t have been capable of dealing with me over the past few years, so I thank you for being strong enough to not give up on me.
And last, but certainly not least, to my mom (MaaaM!) I have lived my life constantly trying to make you proud. I was fortunate to be born your child and honored to be able to care for you until the end. I am the woman I am today because you instilled strength, determination and a no bull-shit attitude into me at a very young age. (And let’s be honest, it’s probably a good thing I am half Dad’s genetic make-up.) Thank you for being as strong as you were through your entire illness. You will forever be my role model; because of you, I know anything is possible. I love you, Mom, and miss you every single day.