A Terminal Illness Primer for Caregivers: Lessons From My Brother’s End-of-Life Journey is now available on Amazon in paperback and Kindle versions. 100% of the proceeds from the sale of this e-book will be donated to the Charles A. Oliverio Fund at Huntsman Cancer Foundation in Salt Lake City, Utah to further research in treatment for glioblastoma multiforme, the kind of brain cancer that took my brother’s life. The e-book has includes additional information than the series below. A PDF version is also available for purchase on this website here.
Click here for the Kindle version ($5.99)
Click here for the paperback version ($8.99)
Go into the garden
Go under the ivy
Go under the leaves with me
Go right to the rose
Go right to the white rose
I’ll be waiting for you
– Kate Bush, from Under the Ivy
STARTING AT THE BEGINNING: WHY I’M WRITING THIS
When my brother told me – via text message – that he’d been given six months to live after being diagnosed with brain cancer, I reacted by asking – via text message – if he was joking. I remember staring at his message, wondering how to respond. Needless to say, my reply was sorely lacking. My brother, at age 49, couldn’t die! It couldn’t be anything but a joke, right? I’d been conditioned by years of bad movies, books and overwrought television shows to regard the six-months-to-live diagnosis as a pathetic plot tool, a gimmick writers use to eliminate a character who needs to be written out of a storyline.
I was totally unprepared for how to react, process and function with a timer ticking off the last moments of my sibling’s life. I had never known life without him. Furthermore, death had never come close to me. Illness and death were something that happened in other people’s families. Death should be more orderly, more logical – if it must happen, it should happen peacefully and only after a long and fulfilling life and in the order into which we came into the world: first in, first out. Unfortunately, death observes its own rules. We must prepare for death because death will not wait patiently for us to be ready for it.
There was a brief period following my brother’s diagnosis when it seemed we all retreated – or more accurately, we all tried to return to the comfort of an illness-free past. Because my family is scattered to the four corners, with all four siblings living in different states, it was easy to slip back into old routines. This denial did nothing to slow the progression of my brother’s disease, of course, and it became apparent (thanks to the urgings of a concerned friend) that action needed to be taken. I hadn’t been totally idle during those surreal weeks. I had spent them researching (as did the other members of my family) glioblastoma multiforme, an extremely malignant and fast-moving type of brain cancer. It felt like a hopeless situation.
Despite what I was reading, I was determined that my brother would beat the odds. My brother was young, healthy and he loved his life. When Kel and I left home to help him, I had no clear plan, no idea of next steps and I was scared out of my mind to face my brother. I only had the vaguest idea of a plan, based solely on a book I had read written by a brain cancer survivor*. So, I went to Utah with the idea, if he’d let me, that I’d get my brother to follow a treatment path similar to the one described in the book. It was like finding myself on stage in front of a full house during amateur night at The Improv. Dressed only in my underwear.
I didn’t immediately assume the large role I was to play in his journey – he wouldn’t hear of it – and it felt initially as if I was just an observer of his fate. Eventually my family and I became more than bystanders and avid internet researchers. We became his advocates and caregivers and we were a formidable team. I realize how lucky we were to have each other’s support – to have our own strengths and talents to lend.
We were by no means perfect, but our aim was to provide love, care and guidance, and I think we succeeded. What follows is a description of our “on the job training,” what my family and I learned as we first tried to save my brother and then as we tried to make his last days as safe, comforting and loving as possible. The standout thing that I learned is that it is better to plan and be prepared. It is unpleasant to spend any moment out of our busy days planning for the end (of ourselves or of friends or loved ones) – but doing so makes the process easier on everyone, reduces stress, frees time for what is important (being with your loved one) and cushions a very hard blow.
*Ben Williams, author of Surviving “Terminal” Cancer: Clinical Trials, Drug Cocktails and Other Treatments Your Oncologist Won’t Tell You About
I am not a nurse, nor a physician, nor a therapist – and I didn’t sleep at a Holiday Inn Express last night. In other words, I’m not an expert. I’m writing strictly from my personal experience and from what I learned along the way of a two-year journey from diagnosis to death. It is offered as a guide and resource. Please read with care and always do your own research – it certainly is not exhaustive. Each person’s situation is different and calls for different methods and solutions. If you find any glaring errors or typos, please let me know and also feel free to add your own thoughts or experiences in the comment section below.
Some of this information may not be relevant to those living outside of the United States.
Finally, apologies to those closely involved in this experience for any errors caused by my faulty memory. Those were swift-moving and stressful times and I’m sure that I’ve forgotten some things and misremembered others.
AFTER THE DIAGNOSIS: TENTATIVE FIRST STEPS
Just put your feet down, child,
The water is only waist high.
I’ll let go of you gently,
Then you can swim to me.
– Kate Bush, The Fog
There are a few things about death we can control; our emotions are not among them, though we can control our story and how we share it with others. Death is not a choice, but much of what happens around end-of-life care is about options. We can receive countless expensive treatments for a terminal illness because we want to fight to live. But we also have the choice of surrender.
– Joe Primo, The Business of Grief
These were the three words I wrote on the white board in my brother’s office the morning after Kel and I arrived, like a reluctant and ill-equipped cavalry, in Utah. Surgery was crossed out because we believed – mistakenly as it turned out – it was not an option. Radiation and chemotherapy were simply stalling tactics to buy time. At any rate, Charles had asked what his options were and writing them down helped him to understand. This was a conversation I had been dreading and one I’d rehearsed in my head the night before. It felt like the most important conversation I was ever going to have and I wasn’t at all sure I could get it right. Thankfully, I found my brother in a receptive mood. At dinner the evening before, he had been nearly incoherent. The tumor growing in his head caused intermittent confusion, language and speaking malfunctions and messed with his vision. It was one of the most frightening evenings of my life. My brother was sitting there next to me – anyway, he looked just like my brother – yet it was someone else entirely. I can only guess at the terror he was feeling as his mind faltered.
Even though we believed brain surgery was not an option, I had assumed that he wouldn’t consider it even if it had been. He was terribly afraid of it, afraid to wake up as “a vegetable;” afraid of losing his ability to ski, to ride his dirt bike. So we talked about the remaining two options. The conversation was clumsy – I’m much better at these kinds of topics when they stay in my head and don’t have to come out of my mouth. But talking with him was not nearly as hard as I’d imagined it would be. Over and over again we discussed the two items: radiation and chemo. What did they entail? How would they make him feel? Would they help? I also talked to him about what I’d read in Surviving “Terminal” Cancer, that it was a long shot, but survival was possible. He seemed open to trying the ideas, distilled from Ben William’s book, that I’d outlined on a spreadsheet. I talked about the small things we could do to help like meditation and moderate exercise; eating better and taking the herbal supplements and tea my sister had sent him. Unprompted he told me that he’d made his peace with dying – that 50 years of life seemed okay with him. It sounded to me like something he thought he as supposed to say.
In the days that followed, we did small things around his house, ate meals together, acted as if Kel and I were on an extended social visit. But in the few hours away from him we were trying to figure out what to do. Because his headaches were getting worse, I called his regular physician to make an appointment and was put off by a week – a week my brother probably didn’t have. Then I remembered a show I’d seen years ago on The Food Network that featured the restaurant at a clinic, Huntsman Cancer Institute, in Salt Lake City. It was a showcase of a place perched high on the foothills and had a restaurant that served “healthy” food with a view that couldn’t be beat. My dad recalled that he’d been given a name of a radiologist there from the diagnosing hospital – so I called their neuro-oncology department and through their caring scheduler was able to arrange an appointment for the next day. I told Charles we had a lunch date.
This is all a very long way of saying that post-diagnosis it’s easy to get lost in the weeds, simply because of the unfamiliarity with the grim realities of a terminal diagnosis. There are the powerful emotions with which to deal but also the many questions about treatment paths and choosing a clinic; not to mention end-of-life concerns, i.e., getting one’s “affairs in order.” Eventually – almost accidentally – we got to a place where Charles received real help. Because the rapid growth of the tumor threatened his life, the choice of whether or not to have surgery was essentially taken out of his hands and the tumor was removed about two weeks after Kel and I arrived in Utah. He went on to undergo radiation and chemotherapy. As a result, his life was extended by over a year.
Here’s the thing: we are all terminal cases. Some of us thrive into our 80s and beyond – until the body’s systems begin to fail and shut down, like lights going out one by one. Some experience a betrayal of their own body; its natural defenses can’t fight off the enemy invaders and they succumb too soon. But knowing that we are all at some point in the future going to die doesn’t prepare us for the reality of our own mortality – or dull the gouge of the words, “there’s nothing left we can do.”
I can’t really see any next step post-diagnosis other than taking time to process this information. Even if one is expecting to get bad news, it’s no doubt been tempered with a huge dose of hope and denial. Living with it, probing gently around the edges of imminent mortality is a necessary step. Caregivers are an important part of this process: a shoulder to cry on, a sounding board – – but caregivers also function in more proactive ways. What I mean is, depending on the type of patient, a caregiver may be called on not only to be an emotional anchor, but to interface with the medical community, to perform research, to monitor drug intake, and also to assist with a Living Will and Will, to help locate relatives or friends or to discuss last wishes (more on all of this in upcoming sections).
As I mentioned in the Introduction, early on I decided to ignore the statistics I’d read so I dug into whatever I could find out about my brother’s type of cancer – I didn’t care how crazy it seemed – I wanted to know. I could toss out the questionable stuff and distill the rest down to something useful. This research served three purposes:
- it provided me with knowledge about the disease and what Charles was up against, and,
- it gave me something to do that not only was helpful to him but kept my mind off of the fact that very few people survive two years beyond diagnosis; and,
- with information I could ask questions and converse knowledgably with my brother’s medical team.
The time after a diagnosis is all about making decisions. But you can only make good decisions when you have reliable information. It’s an excellent and prudent idea to get a second opinion. Mistakes are made, scans are misread, scary-seeming symptoms can point to any number of health problems, some of them easily treatable. Initially, my brother was told that he had a hole in his heart; then that he might have suffered a stroke – or possibly that he had Multiple Sclerosis. The definitive diagnosis happened at a clinic 1,800 miles away from his home. A second opinion revealed that surgery was an option and that there was reason to hope.
This is also the time to identify clinics around the nation to locate the ones that either specialize in the specific illness/cancer or that are conducting interesting clinical trials (more on that later). If possible, don’t limit yourself to one geographical area. Research is going on all of the time on every form of cancer. Don’t be afraid to make phone calls or write emails asking for assistance or information. Most cancer clinics have good libraries or information centers staffed with volunteers who are very willing to help you get your hands on what you need. The resources are there – you just have to do a little digging.
Most importantly, talk with your loved one and ask them what they want to do and listen without judgment. Every patient will approach their diagnosis differently and though we wish we could, we cannot climb into their minds to experience what they are feeling; all we have are their words. Discuss the available options and find out how they feel to determine what they are willing to undergo. More on this topic coming up.
AFTER THE DIAGNOSIS: INTERFACING WITH THE MEDICAL COMMUNITY
Now the patient himself was staring at me, and all I could think about were the moments he would miss: holding his wife as they both drifted off to sleep, laughing with his kids at the first snowfall, raising a glass of champagne to toast his retirement, the birth of his first grandchild, a holiday dinner surrounded by family and friends. Right then, in this moment, I could not tell him the unvarnished truth – that he was likely going to die.
– Amanda Redig, from The Measure of Time
During a long, late afternoon telephone conversation with the physician’s assistant on my brother’s medical team – when it had become clear treatment options had run dry and that his disease was progressing – I asked the question I’d wanted to ask him from the beginning: how do you go to work each day knowing that most of your patients won’t be alive in two years? He actually finished the question for me. Maybe he has been asked that question many times. Maybe he asked himself that question each morning before he headed to work. His answer was that it was hard and that he didn’t think he could do what he was doing for long. The stress was taking its toll. The presence of death in his life was heavy and real.
Three things about this conversation:
- the patient’s medical team is composed of feeling and caring human beings. You can make a connection with them and be empathetic to them just as you desire them to be empathetic with the plight of your loved one; and
- those working with cancer patients carry a heavy burden. Imagine going to work each day knowing that despite your best efforts, intents, and expensive education, your best will never be enough. You will never be able to save all of the people who come to you for help. How that must weigh on one; and
- being able to talk freely and openly with a member of the team is invaluable. I didn’t always agree with what one or more members of the team thought, but I trusted them and knew that they had Charles’ best interests at heart. In addition, I always felt that I could call or email at any time. My sister and I would arrive at appointments with long lists of questions that members of the team answered patiently and thoroughly. In short, we were on the same team.
Take great care when selecting a clinic – and especially when choosing a team of doctors, nurses and other professionals for the journey ahead. It is essential to have a good rapport and to have faith in them. It is absolutely essential that the patient like and respect his/her team. My brother summed up people very quickly, sometimes in seconds. If he didn’t respond to someone, their words feel on deaf ears.
Get to know the supporting staff – learn their names and make sure they know yours. Be polite and respectful. These simple things will be paid back in dividends. Remember that they are caring for tens of patients – each with needs both medical and emotional. The more emotionally invested the team is, the better care your loved one will receive. On the other hand, make sure that they earn your respect and understand that when it comes to your loved one, you are going to go Mama Bear on them if need be.
I’ve thought many times during the many jobs I’ve held over my lifetime that I was glad that my “bad” days didn’t have life-or-death consequences. If I screwed up there were problems and I felt badly – but imagine being a pilot or a nurse or a doctor – with hundreds of lives in your hands. A careless mistake made on a bad day can result in some very dire consequences. As a caregiver, you’re an extra set of eyes and ears. Confirm appointments, check that prescriptions are correct, ask questions if there’s even the slightest confusion, make a phone call if your loved one isn’t feeling or acting right. If you feel as if you’re beginning to gather dust in the waiting room, get noticed. I didn’t tolerate being made to wait too long because I knew my brother was likely to get up and walk out – something he had a history of doing.
On the very first appointment at Huntsman, a routine was established. I represented and spoke for Charles. Because he felt so sick and at times was unable to remember the early symptoms or articulate what was happening to him, it was often necessary for me to speak for him. I know this was difficult for him in the beginning. He had a rock solid independent streak running through him, but over time, he counted on me to be his voice. I asked a lot of questions – sometimes for my benefit and sometimes so that the doctor could clarify something specifically for Charles. Because I was preoccupied with supplying information and asking questions, I wasn’t always able to write down what the doctors were saying – and this is where a third person was invaluable. Kel became the note-taker. When under a lot of stress, our memory isn’t so good and things we think we will remember, we probably won’t. Writing things down is vital. This became more important as Charles’ situation became more complicated. Even though Kel took notes, I carried a small notebook with me at all times. I jotted down names, appointment dates, medication, dosages – anything I thought I might need later. Over the ensuing months, I referred to my notes over and over again. Kel also offered a different perspective and asked questions about things I might not have considered. If you can, bring a family member or trusted friend along with you to every appointment. There’s the medical team and there is your team.
There are other aspects, of course, when dealing with the medical side of a terminal patient’s care. There is the paperwork. The drudgery. The forms, the appointment-making, the prescriptions. This is where a caregiver can really help. Sometimes these tasks are just too much for a person struggling with a dire diagnosis. If they’ll let you, take that burden off of them so that they can focus on treatment. Charles was at first reluctant to let me handle those things, but I explained to him that he had one job and that job was to get better. I could handle the little stuff. Something else to keep in mind: there were several cases where I needed access to Charles’ medical records – and I needed his permission to do this. A straightforward form was completed, signed and filed with the clinic. There was also a form that allowed the doctors and their staff to discuss Charles’ medical condition with me. Both of these tasks was fairly easily done and were essential for me as caregiver and helpful for Charles. Check the clinic’s policy on medical records and if possible, get yourself included as a person who can access this vital information.
Like it or not, a serious medical condition means that your loved one – and you – will be forming relationships with a large medical team. That doesn’t mean you have to get all chummy, but for the benefit of your loved one, take the time to learn names, ask questions and become a familiar face. It is no fun to be sick, no fun to have to visit a clinic weekly, sometimes daily – but forming positive connections can make a huge difference in the experience and in the level of care and attention.
NON-TRADITIONAL THERAPIES AND CLINICAL TRIALS
Nutritional factors, for example, may account for up to 70 percent of avoidable cancer mortality in this country, according to one eye-opening report in a 1992 issue of Oncology. With a statistic like this one, it is time to look at herbs, diet, nutrition, and natural healing modalities as normal and life-affirming, not as “alternative” choices.
– from Herbal Medicine, Healing & Cancer, by Donald R. Yance, Jr., CN, MH, AHG
Before I delve into non-traditional therapies, here are short definitions for two “traditional” methods for treating cancer.
What is chemotherapy?
Dictionary.com defines it this way: the treatment of disease by means of chemicals that have a specific toxic effect upon the disease-producing microorganisms or that selectively destroy cancerous tissue. I have my doubts about the “selectively destroy” part, but this gives you an idea of what chemotherapy is and does.
What is radiation therapy?
I looked to Wikipedia for this one and they defined radiation as: the medical use of ionizing radiation, generally as part of cancer treatment to control or kill malignant cells.
Until my brother became ill, I never gave too much thought about what kind of treatment I would pursue if I were diagnosed with cancer or other life-threatening disease. This is one of the hardest decisions to face a cancer patient: do I adhere to my oncologist’s suggestions and follow the “traditional” path of (possibly) surgery, radiation, and chemotherapy? Do I seek healing in less accepted forms of treatment? Do I pursue any treatment at all?
My brother’s experience left me with mixed feelings about the “traditional” route. Certainly it has its success stories. Without a doubt it can be a brutal and debilitating route as well. However, the more that I learn about the complexity and power of the human body and learn about the sustaining and healing properties found in fruits, vegetables, greens and herbs, the more curious becomes the idea of Western medicine – or perhaps, how curious it is that choosing to prevent health problems or to heal one’s self through natural, plant-based eating and herbal supplements is thought of as “non-traditional” in this country.
This idea is articulated and expanded upon in Herbal Medicine, Healing & Cancer, by Donald R. Yance, Jr., CN, MH, AHG, a book my sister recommended to me in the days after my brother was diagnosed. I bought it immediately and skimmed through it, but I couldn’t make the time to read it from cover to cover. I wish that I had, though in retrospect, my brother was not open to “non-traditional” treatment and had put his faith firmly in what is considered The Gold Standard of care for his particular disease. This is understandable, really. From the moment of birth we are nurtured on the idea that science can perfect on Mother Nature by extracting certain elements, recreating, enhancing, synthesizing. We expect doctors to be miracle workers and often their word is perceived to be law. I have feet in both camps; after all, I never contracted polio, I missed the measles, mumps, and chicken pox, and the strep throat I suffered from disappeared very quickly thanks to antibiotics. When faced with a life-threatening illness, it can be a very lonely and frightening thing to contemplate heading into the wilderness of less accepted or even shunned therapies. There is a kind of comfort in following Western treatment methods.
However, the idea of using toxic (more specifically, cytotoxic) drugs to wipe out good cells along with the bad is, to me at least, just as frightening. Why not give the body the ammunition it needs to fight off the cancer, the infection, the virus – rather than further degrading the body’s health and strength? Better yet, why not live and eat in such as way as to prevent cancer from getting a toehold?
Pursuing non-traditional treatment methods can be threatening to health care professionals as well. To my brother’s neuro-oncologist’s credit, he was open to the ideas I suggested and offered his opinions – pointing out supplements that might interfere with the efficacy of the suggested chemotherapy. My brother ended up following a few suggestions – taking daily curcumin, vitamin D and fish oil supplements – but otherwise followed the accepted standard for care.
Something my brother was more open to was a radical-sounding device that was still in the clinical trial phase at the time he was diagnosed. He was not eligible for the device during the clinical trial, but coincidentally, the device was approved by the FDA not long after his surgery. Somehow my sister was able to convince the manufacturers of this device – an extremely expensive “helmet” designed to inhibit the division of cancer cells – to give it to my brother for free. To do this, we added another doctor to our team, this one in San Diego, since Huntsman had not yet added the use of the device to their brain cancer treatment options.
This device appealed to my brother on several levels. He was an engineer and was the kind of person who enjoyed taking something apart just to understand how it works (he thankfully did not take apart this particular device) – and of course it appealed because it was not another drug that might create additional painful side effects.
The drawback of this “helmet” became immediately clear, however. To use it, he had to shave his head completely bald. Okay, not the worst thing one has to do in the pursuit of a cure – but add to this that he essentially would be carrying around a suitcase across his shoulder all day and sleeping with the helmet in place (and humming) – for a total of 21-23 hours per day. Cumbersome batteries had to be charged and the bandages that kept the electrodes in place on his head were hot and frankly, made him feel like a freak. As an active person, this “side effect” became more than he could endure. After only a month or so, he returned the device.
I’m old enough to remember the excitement about and early promise of a new cancer drug called interferon. (Wikipedia, again: Interferons are proteins made and released by host cells in response to the presence of pathogens such as viruses, bacteria, parasites or tumor cells. They allow for communication between cells to trigger the protective defenses of the immune system that eradicate pathogens or tumors.) It even graced the cover of Time Magazine on March 31, 1980 with the headline, Interferon: The IF Drug for Cancer.
The long-awaited cancer cure had been found! Suddenly cancer patients were high-tailing it to Mexico to get this miracle drug that had not received FDA approval and people were chowing down on apricots. The promise of interferon faded, like that of most miracle drugs. Cancer patients watched both their lives and life-savings drain away. The problem wasn’t interferon. The problem was in isolating this powerful protein from the many other phytochemicals that kick it into cancer-eradicating mode.
An interesting supplement that I researched and kept in my figurative “back pocket” was something called sodium dicholoracetate or DCA. An inexpensive and allegedly miraculous cancer cure available in Canada, I seriously considered having Charles try it as a last resort. Depending on what you read, it was either the most effective and least expensive answer (and one that could not be patented by big pharm – therefore it’s curative properties were not being researched/pursued here in the U.S.) to curing cancer or as useless as a sugar pill.
Charles’s doctor tempered my initial enthusiasm over DCA and when I read that this was (allegedly) so effective a cure for glioblastoma that the speed at which the DCA destroyed cancerous cells could sometimes kill the patient, I abandoned the idea. Talk about the cure being deadlier than the disease!
Food As A Non-traditional Therapy
It should come as no surprise to anyone following my blog that I believe that the food that we put into our bodies has the power to heal or to harm. Numerous studies have demonstrated a link between consuming animal products and high rates of cancer (as well as many other diseases). The science behind this link is too complicated to go into here – and anyway, my intellect is not up to the task! I’ll leave that duty to the experts. Suffice to say that what I read in The China Study was enough to convince me to forsake animal products for good.
I believe that if my brother had shifted to a nutrient-dense, plant-based diet his body would have better tolerated the radiation and chemotherapy and the powerful phytochemicals he consumed would have helped his body kill off the cancer cells. I recommend reading Dr. Joel Fuhrman’s book, Super Immunity for more on how the phytochemicals found in plants benefit our bodies. He discusses treating cancer through diet (as does Herbal Medicine, Healing & Cancer). The primary reason I am vegan is to avoid getting the C-word. I would have loved to have had Charles drinking a green smoothie every morning, eating a big salad at lunch and downing a few shots of wheatgrass each day, but he would have sooner broken off a piece of his kitchen counter and eaten it than change his diet.
Charles was very happy to allow me to guide his treatment, but had definite boundaries about what he would do and what he would not do. Changing his dietary habits was a “not do” and since he was the boss, I respected this limitation (I didn’t say I didn’t nag him now and again!). There is nothing to be gained by trying to force someone who is under the stress of treatment to give up the foods that provide comfort. Exploring a more comprehensive course of homeopathic treatments was a “not do” as well. I tried, unsuccessfully, to convince him that his opponent was so formidable that he couldn’t afford not to try every available, viable option.
Of course there are many ways to supplement both traditional and non-traditional therapies out there, such as mediation, yoga, exercise, spending time with animals and seeking spiritual guidance and it’s worth expanding a bit on meditation and yoga as they can be extremely beneficial to the cancer patient. The mind is an incredibly powerful healing tool and I believe visualization works. I asked Charles to visualize his own body destroying the cancer cells. He was okay with this and to my astonishment, even went as far as taking a few yoga classes once he felt well enough. An extremely useful book that explores the power of the mind in healing is called, Love, Medicine & Miracles, by Dr. Bernie Siegel.
As my brother was not a religious person, faith-based healing was not a consideration for him, but it is for many. I am sure that much strength can be had for people who belief in a benevolent, involved, and caring God. The book mentioned above is powerful in this respect and I recommend it to people of faith who are experiencing health challenges.
My point about non-traditional therapies is this: there are interesting and promising options out there. There are alternatives to the standard offering of radiation followed by chemotherapy. Create the treatment plan that feels right for you – whether it is 100% Western, 100% homeopathic, or a combination of the two. Don’t limit yourself to the United States – see what other countries are doing. Some very interesting cancer studies are coming out of India, Israel and Europe. As always, though, be aware that quacks and charlatans abound. Use common sense, do your research and discuss everything with the oncologist.
My suggested approach to Charles was one of a mix of traditional and non-traditional therapies in order to come at the disease from a variety of angles. Additionally, I felt that a nutrient-dense diet would keep his body strong and as healthy as possible under the onslaught of radiation (which can actually help spread cancer cells) and chemotherapy by mitigating the harsh effects of these treatments.
One of my criticisms of the otherwise excellent treatment offered by Huntsman is the lack of a supplemental and coordinated approach to nutrition for the cancer patient. In my opinion, a dietician/nutritionist/herbalist should be a part of the patient’s medical team from the very beginning. An analysis of the patient’s diet would reveal areas where he or she could make improvements and suggest changes that would help in the healing process. For some patients (like my brother) who are reluctant to make significant dietary changes or perhaps do not believe in or do not know of the negative health effects associated with consuming animal products, processed fats, and processed foods, the voice of a health authority might prove to be very helpful.
Ann Wigmore Natural Health Institute
Natura Health Products
Clinical trials are strictly controlled tests of drugs or medical devices and happen in several phases over several years. The Food & Drug Administration determines whether or not the tested drug or medical device is approved for use within the United States. (Devices have less stringent approval requirements than do drugs.) Cancer hospitals and clinics generally have several clinical trials going on at all times and make participation an option for patients. Being a patient does not necessarily mean that one is eligible to take part in a clinical trial as each trial has its own set of requirements. Patients are not restricted to their clinic but may pursue trials outside of their clinic or even their state, dependent upon eligibility. The patient’s oncologist will suggest clinical trials to patients where appropriate.
While there are benefits to taking part in clinical trials (free drugs, for instance), view them with caution and consider how desperate the situation is. In Charles’s case, we took the risk initially on a clinical trial where he may or may not have been getting the chemo being tested. Turns out he was not getting the (additional) chemo drug and his tumor returned post-surgery with a vengeance. If your loved one is asked to take part in a clinical trial, make sure you understand whether or not the patient would be getting the treatment and weigh the risks/benefits.
Another angle to participating in a clinical trial is that though the trial participant may not benefit, the result may end up saving or prolonging the lives of other patients afflicted with the same disease. I’m not sure this altruistic approach appealed to my brother, but it certainly is one way to view it.
An important role of the caregiver is to bring information to the patient. It is then up to him/her to decide whether or not to act on those suggestions. It was okay if my brother didn’t want to try something – it was his life, his illness. He could be quite vocal about his choices, but sometimes, as my sister noted, my brother decided by not deciding. One needs to be attuned to the patient.
Below are just a few resources to locate clinical trials for all types of cancer.
My belief is that the cure to cancer comes from within our own bodies when we provide them with nutrient-dense, whole, plant-based foods. A diet rich in phytochemicals and poor in animal products, along with clean water, unpolluted air, and limited exposure to other environmental toxins would wipe out this killer. One can dream.
The Internet is an invaluable tool for the caregiver and for the patient. Digging through the vast quantity of information available on the Internet on any disease can be daunting and also fraught with danger. There are all kinds of people willing to take advantage of people who are desperate for answers, desperate for a cure. I’m not even sure that the adage trust but verify, applies here. Don’t trust and verify might be more fitting. Trust your instincts. If something sounds too good to be true, it is too good to be true. Con-men abound, especially in the field of cancer treatment.
And, as I stated at the beginning of this primer, I have no medical training. I am writing from my experience and from what I have read. There is no substitute for doing your own due diligence and for consulting with qualified medical professionals.
Virtual Trials (specifically for brain tumors)
National Cancer Institute Clinical Trial Database
American Cancer Society Clinical Trials Matching Service
OTHER ROLES OF THE CAREGIVER AND A DISCUSSION OF ESTATE DOCUMENTS
Caring for a dying loved one is a powerful way to express love, devotion, and reverence. Allowing a spouse or grown child to care for one becomes a final gift from the person dying. The physical acts of caring can help family members in their own grief. – from Ira Byock, MD, from Dying Well
Other Roles of the Caregiver
Elizabeth Kubler-Ross introduced the idea of 5 Stages of Grief into the terminal illness lexicon and wrote extensively about these stages in her book. On Death and Dying. Not everyone buys into her theory, but they make sense to me and I can certainly imagine myself experiencing one or all of the following stages should I receive a terminal illness diagnosis:
I can’t say that I recognized all of these stages in my brother’s journey, but I can imagine that denial must be the most common feeling, especially for a formerly healthy person who had never suffered any kind of debilitating illness prior to a prognosis of death. My brother’s form of denial was to learn very little about the disease and to leave the research, the details, and the treatment suggestions to his caregivers – but not before he let us know that our intrusion into his life was rather unwelcome. A denial of the seriousness of his illness or a desire to protect his privacy, perhaps. Looking back, I can see that he probably viewed me as a kind of Trojan Horse – appearing as I always had on the outside, his little sister, but on the inside sat a complete stranger who was preparing to invade his life and home. Early on I’m sure that it didn’t matter to him that my intentions were good.
After time, patience, and proving to him that my goal was only to be of help to him, he accepted my advice and help and gradually allowed me to carry more and more of the weight of his care. I’ve written above how a caregiver can help during the diagnosis and treatment stages of a terminal illness, but what does caregiving mean beyond these terms?
As mentioned in an earlier section, the caregiver often becomes the voice of the patient and can find herself being the primary contact between the patient and the medical team. But beyond that and depending on how much your loved one feels comfortable sharing, the caregiver can become the liaison with the health insurer and pharmaceutical companies, too. Though it may seem that post-diagnosis there is nothing left except medical appointments, outside of the health care realm remain the duties of a normal life: paying bills, keeping the lawn mowed, cooking, shopping, cleaning, laundry, pet care, and so many more small tasks that make up a day.
Should these tasks fall to the caregiver, it calls for being a positive, vocal, and resolute advocate. For me, it meant being much more aggressive than I would normally be for myself. Something about assuming the care of my brother brought out my protective side. I wanted to make sure that what I was doing for him was what he would do for himself if he could.
One of the things I did (by sheer chance) very early on was to make a connection with a person at my brother’s health insurer. I really lucked out and formed a relationship with a caring and thoughtful human being – someone who saw beyond the statistics and numbers and demonstrated that she cared about my brother as a person who was in a time of deep need. I also spoke with real live human beings at various pharmaceutical companies when it was clear that the chemotherapies my brother needed as part of his treatment were prohibitively costly. Their “patient assistant” programs proved to be key in his care. On the home front, I spoke with bank representatives and customer service at various organizations and institutions letting them know who I was and what I was doing.
This all sounds daunting – and it is – especially when one thinks about all of their own personal responsibilities that won’t wait for a more convenient time, but the key to caregiving is sharing the load. For our family, it meant dividing responsibilities among our members, with each of us contributing from our strong points. This created a rather formidable and (with lapses here and there) efficient team.
You’ll be exhausted a lot of the time (in a later section I will discuss ways to help yourself) and stressed and terribly sad, of course. But what you will find is that you are able to do what needs to be done – and more – and you’ll find reserves of patience and strength you didn’t know existed. The love you have for your friend or family member will grow and deepen as you help them make their final transition. It truly is a privilege and a gift to be the caregiver of a loved one.
So what about still other items that might fall onto the caregiver’s plate? Depending on the kind of relationship one has with the patient, this can mean some pretty difficult and intimate but necessary conversations, involving questions like:
- Have they planned for their passing?
- Do they have an attorney or a tax accountant?
- Do they have a power of attorney appointed?
- Have they written and notarized a will?
- Do they wish to be cremated or buried?
- What kind of (if any) memorial service would they like to honor their life and passing?
- Have they indicated that they would like to donate their organs?
- Does someone trusted have access to passwords and know where bank, savings, and retirement accounts are held? If so, who?
- Does someone trusted have access to safe deposit boxes or home safe? If so, who?
- Do they have a list somewhere of computer, file, and site passwords and if so, where can this list be found?
- Have they compiled a list of friends and acquaintances who should be notified upon passing?
- If they have a pet, have they arranged for its care?
There is that big part of us that doesn’t want to acknowledge that our own lives or those of loved ones are nearing an end, but believe me, having these kinds of conversations offers a kind of relief for the patient – knowing that his wishes are understood and that he has help – and for the caregiver who will not be completely in the dark when it comes time to assume post-mortem responsibilities.
A Discussion of Estate Documents
It may seem odd to include a discussion of estate documents at this point in the primer, but the preparation and execution of estate documents can fall under the duties of one or more caregivers so it felt right to include here. This is not an exhaustive list by any means, but a quick overview of the more common documents associated with a person’s estate.
Even under healthy and ideal situations, it is not enjoyable to think about writing wills and planning for our own ends. It is much worse, however, to wait until we are too sick to want to deal with the complexities and hard mental work that accompanies these kinds of decisions. Energy is better focused on enjoying whatever time is left, spending time with friends and loved ones, and taking steps to feel as good as possible. If your loved one has already taken care of these matters – woohoo! In that case, you want to find out, as bulleted above, to whom they’ve entrusted the management of their estate upon their passing. If not, gently encourage your loved one to work with a lawyer to at least prepare a simple document stating their final wishes.
Power of Attorney and Durable Power of Attorney Q & A
A written document in which one person (the Principal) appoints another person to act as an agent on his or her behalf, thus conferring authority on the agent to perform certain acts or functions on behalf of the principal. – from Legal Dictionary.
Why is it important to have a legal Power of Attorney or Durable Power of Attorney?
This is essential if one is to assist the patient with “every day” needs such as writing and depositing checks, paying bills, and communicating with financial institutions. Completing one of these documents (or learning where the patient keeps the original and to whom he or she has assigned this power) should be at the top of a caregiver’s To Do list.
What’s the difference between a Power of Attorney and a Durable Power of Attorney?
I found out the hard way about the difference between a Power of Attorney (POA) and a Durable Power of Attorney. In a nutshell, a simple POA gives the person named specific powers – writing checks, perhaps, or being able to make bank transactions on behalf of the patient. The scope of a POA is determined by the language within – which is determined by the Principal (the person writing the POA).
A Durable POA grants specific powers beyond the point at which the Principal can speak and function for himself – but has not yet died. It was explained to me like this: my brother’s POA gave me the same powers as if I were him until the moment that he was no longer able to speak and act for himself. When he became incapacitated, I became incapacitated as well. A Durable POA persists beyond the point at which a person is incapacitated, but ends at the moment of the person’s death. There are two types of Durable POA – seek legal advice to determine which is best for your particular situation.
The difference between a POA and a Durable POA is subtle, but it’s critical to have the correct type of document to address the Principal’s needs.
Probate Court and The Last Will & Testament
Probate: The court process by which a Will is proved valid or invalid. The legal process wherein the estate of a decedent is administered. – from Legal Dictionary
Once a person has acquired a certain number of assets, it is wise for that person to draw up a document stating how they would like their property distributed upon the event of their passing. This can be simple and straightforward or incredibly complicated – depending on the number of assets/net worth and the wishes of an individual.
The first thing we think of, of course, is a Last Will & Testament, and maybe we have visions of a grieving family piling into an attorney’s office and learning what their deceased loved one has left them. The will itself, as I noted above, does not have to be complicated, but what happens after a person dies and the will goes “into effect,” is truly complicated. An estate lawyer (either hired by the patient or by a family member or caregiver – preferably long prior to the death of the patient), files the will with the Court and the will enters into a period called Probate (see above for definition). During this period, a person or persons may come forward to object to or call into question the validity of the will. A judge reviews the document and determines whether or not it is legal and valid. This can take several weeks.
Keep in mind that during this Probate period (prior to the judge issuing his order) the estate is frozen – meaning that bank accounts are not accessible until the Court determines that the Personal Representative or Executor (the person named in the will who “executes” the wishes dictated in the will) and the will itself are valid.
If the judge deems all to be in order, a decision is filed which produces what is called Letters Testamentary. This document legitimizes the Personal Representative (Executor) of the Estate and bestows upon them the authority to carry out the wishes of the deceased. This is important because this document will be needed by the Personal Representative to show to financial and other institutions proving that the Personal Representative can legally represent the deceased. Following the issuance of the Letters Testamentary, there is a period of several months when the estate is in a holding pattern while potential creditors are given an opportunity to make claims against the estate. After this period of time, an accounting must be made to the Court of how the estate has been managed and beneficiaries can begin to receive those items left to them by the deceased. The process in my brother’s case took over six months and I expect his estate to remain open for several more years.
With Letters Testamentary in hand (and often a Death Certificate as well), the Personal Representative should then transfer all financial accounts into “estate accounts.” This is one of the first steps in the beginning of the bequest process and is necessary in order for the Personal Representative to begin to carry out the duties of the estate.
Besides the lengthy and complicated process called Probate, a Last Will and Testament means that everything itemized within the deceased’s will is public information and is shared among each and every one of the beneficiaries named in the will. Not only that, the estate accounting documents submitted to the Court are also a matter of record to the beneficiaries. I don’t know about you, but I feel like my assets are my business and nobody else’s.
A trust that may be terminated by the grantor or that is set up to terminate automatically at a specific date. Revocable trusts are often used to turn daily decisions regarding certain assets over to someone else. They are also used to reduce probate fees, to reduce delays in distributing assets, and to keep assets from becoming a matter of public record. – from Legal Dictionary
A Last Will and Testament is not the only option, thankfully. There is a document called a Revocable Trust. In a nutshell, this means that the patient sets up a trust in his name that protects the items listed in it from going through the Probate process and keeps the information contained within the trust a private matter between the people or organizations named in the trust. Not only that, because the document is not subject to Probate, bank accounts are not frozen, bills can be paid, financial transactions can be performed, and beneficiaries can receive their bequests immediately. A Revocable Trust assures that control of the estate remains in the hands of the Trustee and not Probate court.
Pour Over Will
To cover anything that may be inadvertently omitted from the revocable trust, you’ll want to think about having a “pour over will.” A pour over will is a document that accompanies a trust and it essentially “protects” any property that may have been left out of the trust when it was written. Be aware, however, that whatever ends up in the pour over will is subject to probate – which means it will be bogged down in the court system for months and will incur legal fees.
Just as I am not trained in medical matters, I have no legal background whatsoever, other than having an ex-husband who was a lawyer. The Probate process varies from state to state, so make sure the estate documents are prepared in accordance with the laws of the state in which your loved one resides. Before making a decision about your own assets or if working with a terminally ill patient, be sure to consult with an estate attorney about your options and what is best for the situation.
WHEN HOPE MEETS REALITY: MAKING TOUGH DECISIONS & RECOGNIZING SHIFTING DYNAMICS
“I learnt very early that it was fatal to tell him that any tree was impossible for him to get up. ‘Impossible’ was a word that acted as a challenge to him.”
– Avie Mallory on her brother, George Mallory
There comes a point in the terminal illness journey when it must be acknowledged – by the medical team, by the patient, and by you, the caregiver – that treatment options have run dry. I recognized this in my brother’s case during his second to last MRI when it was clear that the cancer had spread; milky-white tendrils reached deep into the back of his brain. Surgery wasn’t an option this time.
I don’t think my brother saw what I did, or understood that the doctor’s words meant that there was really nothing more to be done. I’m grateful for that. The days following that MRI were really good – which sounds strange – but he was positive, motivated, and sweet. Maybe he sensed that he didn’t have much time. We talked about a lot of things, things he had avoided talking about earlier on in his illness. When we hugged goodbye the night before I returned home to Oklahoma (briefly, as it turned out), it was warm and solid and heavy with unspoken words. I missed him as soon as the door closed behind him.
By the time of that MRI, Charles had endured various chemotherapy drugs, each harsher and more damaging than the last, with the final one completely sapping his strength and wreaking havoc on his body chemistry. It was time for him to give his body some peace and for him to live out the time he had left in as much comfort as we could possibly provide. He didn’t need futile, exhausting visits to the clinic.
Calling off Treatment
Obviously most patients make this decision for themselves; they’re tired, in pain, and just want to let go. Some patients continue to look for a cure until their final breath. In my brother’s case, the decision was left primarily to me and my sister. It’s something we talked about a lot right from the beginning of his illness, and we always agreed that when Charles told us he’d had enough, we would call off the hunt. The thing is, he never actually did say he’d had enough. He didn’t have to because his body told us. As I wrote above, the final round of chemo wiped him out so badly that he had to be taken off of all treatment for several weeks. This allowed the cancer to run rampant and his physical and mental conditions rapidly deteriorated. His ravaged body had had enough.
Ideally, the patient would be clear about whether or not they wish to continue treatment even after a cure seems hopeless. The best case scenario is for you and your loved one to talk about what they want. That doesn’t mean their feelings or decision won’t change (maybe even many times), but understanding their wishes will facilitate – when the time comes – moving into the next phase of their illness.
Home or the Hospital?
An inevitable outcome for those suffering from debilitating terminal illness is that at some point they are unable to care for themselves and in fact, it becomes unsafe for them to be alone in their homes. This is a very difficult time for the patient. After all, they are bidding farewell to their independence and beginning their final journey. It is almost as sad and challenging for caregivers. No one wants to witness their formerly proud and independent spouse, sibling, or friend lose a vital part of their personality.
We made our decision for Charles based on what we felt he would want (and what we ourselves would want); and so we chose to care for him at his home. Choosing this route means that the person will be in the comfort of a familiar place, surrounded by loving family and friends, and belongings that remind them of their personal history. It also means a lot of work for the caregivers, but it is worth every second.
Caring for my brother was a huge privilege and honor. I’d give just about anything to undo the last two hard years and have him back, but since that isn’t possible, I wouldn’t trade a second of the time I spent with him during his illness. Knowing that he trusted and loved me enough to let me be with him during the saddest and most challenging time of his life means the world to me. Your loved one will most likely resist this transition (at first) with every fiber of their being. Understand how they feel – but don’t let them shut you out. Make them understand what a blessing it is to be with them.
Something I didn’t anticipate (among many things…) was a shift in the relationship I had with my brother. Over time and as he let me, I assumed more and more responsibility for his care and for him. By the end I felt I was living two lives, with mine gently simmering on the back burner. At the time it was just the way that it had to be, but looking back it was quite a seismic shift. My brother was always The Older Brother. The one who did everything long before his siblings did. He was the brother who rescued me from the other kids teasing me on the bus; the bored teenager who drove me to concerts or the mall before I learned how to drive; the sage college graduate giving me advice during my freshman year. I looked up to him, admired him, wanted to please and impress him. I wasn’t supposed to be helping lift him out of bed or spoon food into his mouth.
The good thing in my case was, there was very little awkwardness about it, very little resentment on his part. That was more a testament to our relationship than it was to his personality; he could be incredibly prickly in certain situations. In other words, he was okay with me helping him. This may not always be the case. Some people find it harder to need (and ask for) help. Be available. Go at their pace. Remember that it is easier to lash out at someone familiar and trusted.
Knowledge is Strength
Our family has never been good at expressing ourselves and so one of the hardest parts of dealing with Charles was knowing how to talk to him – sensing how much information was too much. I think this is one area where I failed him. I felt that throughout his illness, my hope supported his hope. If he saw me lose faith, I feared it would plunge him into despair or worse – cause him to take his own life. So I presented a strong front even when I knew the odds were so hugely stacked against him. I used my hope and determination as a shield to protect him from a reality I thought he could not handle. I was wrong about this. Every person has the right to as much or as little knowledge as they wish. I believe now that if I had been able to tell Charles what was happening to him and to give him time to process this information, that knowledge would have given him strength to face what was coming.
We fear what we don’t know and don’t understand. It saddens me to think that my protective instinct may have actually left him feeling fearful and alone. So my advice is, if your loved one wants to talk about what is happening, wants to discuss death and what it might feel like: listen.
In a later section, I’ll discuss choosing a hospice team and other ways to care for your loved one and to plan for the end.
COMFORT FOR YOUR LOVED ONE; COMFORT FOR YOU
I’m here. I love you. I don’t care if you need to stay up crying all night long, I will stay with you. There’s nothing you can ever do to lose my love. I will protect you until you die, and after your death I will still protect you. – Elizabeth Gilbert, from Eat, Pray, Love.
I’ve written quite a lot about the role of the caregiver as it relates to the patient – but caregivers also need comfort, care, support, space for themselves, and time to take care of errands and tasks. How are you going to keep your morale and strength up over the next few weeks or months? It is all too easy to neglect ourselves as we attend to the needs of our friend or family member. It may be the one area in which we caregivers routinely fail. We put all of our energy into helping and supporting and we forget about our own needs. It’s a juggling act and each one of us handles it in our own ways, but below are some suggestions for small ways to make life just a little easier during a very stressful and difficult time.
Assemble Your Team
Most likely you will have a strong ally or two – maybe other family members or perhaps close friends. Without this support team it would be extremely difficult to maintain a high level of care – or to find time for your own needs. It’s vital to have people with whom you can work together as a team.
For my family and me, we took the divide and conquer approach and so were able to (mostly) cover all of the bases. I was the idea person and the one who related best with Charles; my sister read and digested complex medical documents that often ended up directing my brother’s care. I called her The Hammer. When an impasse needed to be cleared, she got the job done, and I was grateful for her ability. My parents were astounding. They handled a lot of the little daily things that needed managing – laundry, grocery, running errands, etc. They spelled my sister and me when we needed to be elsewhere. Mostly, however, their absolute love and devotion to my brother was beautiful and touching to witness. He had no doubt of their love for him. There may be no more important thing we can give to a terminally ill patient. Beyond that, all of us made sure Charles was comfortable, fed, clothed, and clean. Figure out what your strengths are and what your team members’ strengths are and go from there.
Unfortunately, despite our “team coverage,” we all neglected ourselves. Meals got skipped, sleep was interrupted, workouts went by the wayside. We never paused to take the time to not think about what was happening. Although we “spelled” each other, more often than not it just meant that the person “on break” was running an errand related to caregiving.
Let’s begin with ways that you can comfort your loved one.
It’s the Little Things
While it’s easy to feel that there is no way to bring comfort or relief to your loved one as they struggle with powerful emotions and physical pain, small comforts can provide big relief.
Tastes change from the effects of various medications. Someone who once loved sugary treats may not be able to stomach the thought of chocolate or even fruit; a former salt-lover suddenly craves ice cream. Be attuned to what your loved one is craving. Here are some things to keep on hand:
- Soft and juicy fruits such as bananas, oranges, grapefruit, and berries. Cut into very small pieces to make handling, chewing, and swallowing easier. Remember that you may be feeding your loved one – go at their pace and make sure they chew and swallow.
- Puddings, yogurt, and fruit purees. There are many different varieties now of fruit purees – not just applesauce. Don’t feel weird about trying baby foods, either, because you can find savory purees. If your loved one likes pudding or yogurt, again, there are many varieties from which to choose so it’s a good idea to have a few kinds on hand. These foods are easy to swallow and don’t challenge sore throats.
- Water and juices. Always have some water on hand. You will notice that as the end nears, your loved one’s need for liquids and solid food will greatly diminish, but side effects of some medications can cause thirst – and it’s important to keep the kidneys and digestive system functioning for as long as possible.
- Whatever they crave. It feels very satisfying to be able to give the patient something that they crave – and it doesn’t happen often. Maybe it’s a few sips of warm soup or a bowl of noodles. You can’t anticipate everything, of course, but be prepared to find them what they want.
- In general, no dry stuff. As the body begins to shut down, it becomes more difficult for the patient to chew and swallow things like bread, toast, cookies, and crackers. Make sure you stay with your loved one when they are eating anything dry.
- Avoid hard-to-digest foods and provide gentle laxatives. Anything that ties up the digestive system should be discouraged – meat, for instance (I say this not from a plant-based point of view), or dairy products. Obviously if the patient really wants a hamburger or steak, you should honor their wish, but keep in mind that their system is not functioning to peak performance and a heavy meal may cause problems later. Also, be prepared to provide products like Benefiber or Miralax (which dissolve quickly into water and juices) to help move things along through the digestive system.
The hospice doctor and nurses will guide serious pain management (more on that later), but there are little things one can do to give relief to those suffering from chronic pain.
- Gentle massage or touch. Patients not only suffer from aches and soreness, sometimes they feel itchy as well. If they are comfortable with it, offer a gentle massage or lightly lay your hands on tender spots. Remember that very often the patient hurts all over and even light touches can cause discomfort. Check with your hospice to find out if they offer massage therapy.
- Icy/Hot patches or menthol lotions. Having used these myself on my own various aches and pains, I can attest to their efficacy. Something about the sensation of cool and warm numbs and distracts aching muscles.
- Cool compresses. This conjures up images of the end of The Wizard of Oz when Auntie Em applies a cold compress to Dorothy’s forehead, but there is real relief in something soft and cool. Apply wherever the patient is feeling hot and uncomfortable.
- Music (or television). Charles was a huge music lover with an extensive library of CDs, cassettes, and albums. We set up his smartphone to play in his room, thinking he’d really respond. Turns out, he didn’t! For whatever reason, it irritated him, so we left things quiet. But that doesn’t mean your loved one won’t feel comforted by familiar tunes or television shows.
A Furry Friend
When Charles was still mobile and just at the beginning of the end stages, my sister and I looked into fostering a dog. He’d been a dog owner and lover and we felt that having a pet in his home would bring a kind of comfort that we just couldn’t provide. There were several options available to us, but things moved too quickly for us to follow through on the idea. For more information, start by contacting the clinic where your loved one receives care – their resource center can put you in touch with someone who can bring an animal to the patient’s home – or call animal shelters and rescue agencies directly. They are always looking for loving foster homes and are often willing to work with terminal patients and their families.
Clean & Fresh
One of the big challenges is helping your loved one feel clean. Most of us shower every day and brush our teeth after meals. We take these simple acts for granted, but as a patient weakens, it becomes very difficult to get in and out of a tub or even to wash one’s face or brush one’s teeth.
Hospice will provide an aide to visit regularly to help your loved one with bathing, but in between times, you can help with warm washcloths and cool wipes. If it’s not too painful, you can also help them brush their teeth (hospice can provide special, soft swabs) or brush their hair. Be gentle!
Read & Listen
If your loved one enjoys reading, offer to read aloud from their favorite books or from newspapers or magazines. At some point, patients disengage from the active world around them, but as long as your loved one seems interested, help them keep their minds active.
If your loved one wants to talk – listen. You don’t have to have anything profound or wise to say in response, just let them share what they need to. Is there a heavier topic than death? I can’t think of one. Some people at the end stages want to talk about it and some don’t. Let them set the tone.
A Little Help from Friends
Not everyone is a social creature, but if your loved one has a large network of friends (near and far) find out if they’d enjoy visitors or talking on the phone. This can provide great distraction and some patients enjoy remembering times past and desire the opportunity to share their feelings and say goodbye.
It’s fairly typical that as the dying process progresses, the patient will withdraw into themselves and lose interest in the people and things around them. Don’t force anything – let their words and actions guide yours.
Small Comforts for You
I don’t know about you, but I can’t sleep well unless I have my own pillow. If you’ll be spending nights with your loved one, consider packing your pillow or favorite blanket.
I also have a favorite pair of jammies and a super-soft robe. Just thinking about them makes me feel calmer.
Tea Stands for Comfort
For pure comfort, there is nothing like brewing up my favorite kind of tea and having a quiet moment or two to myself to enjoy it. If coffee is your thing, bring some beans, your favorite mug, and a coffeemaker. Keep in mind some patients have a heightened sense of smell – make sure you get their okay before brewing.
While I did not carry a copy of War and Peace with me as I cared for my brother, it was helpful to have fluffy stuff – cooking magazines, gossipy rags, and a crossword puzzle book got me through many long hours. Sometimes all my tired brain could manage were colorful photos.
Eats & Drinks
It’s very important to stay properly hydrated and nourished during these caregiving times – but being a stickler about it isn’t going to bring relief to you or your loved ones. If you need to indulge now and again, do it. Here are some ideas on what to have for yourself:
- Go green. Each morning during the time I spent with Charles I prepared a big container of green smoothie to have with me during the day. Often meals got skipped, but I always had a smoothie in the refrigerator to tide me over.
- Go nuts. Packable, portable, and excellent for providing energy and keeping hunger at bay. Make your own GORP (“good old raisins and peanuts”) with your favorite dried fruits and nuts – no one would protest too much if you added chocolate chips.
- Power water. I also mixed up a batch of chia and lemon/lime water. Not only did it give me energy, it helped me stay hydrated.
- PB&J it. Nothing is easier to prepare than a peanut butter and jelly sandwich. Make a few up in the morning and tuck into your backpack or purse. Of course, you could make any kind of sandwich you like, but these travel well and provide good protein and carbs.
It’s a great idea to have a kind of “bug out bag” ready to go packed with a change of clothes, a toothbrush, reading material, pens, paper, snacks, and anything else that will help you through long hours. Anything that gives you some comfort is what you want to have on hand. It really is the little things that gets one through tough times.
Support System for You
Line up a few good friends with whom you can talk any time. Don’t be too proud to lean on someone. You’ll be gratified to know how much they want to reach out to you and to do something to help.
The clinic where your loved one is being treated probably has a support group or two, and if not, their resource center or library should be able to direct you to groups in your area. Check local churches and community centers. Don’t discount virtual support. Early on I signed up to a chat room dedicated to the subject of brain cancer. Whenever I reached out to that community, a hand and voice reached back to me. Also, browse Facebook; through it I found a wonderful organization called Voices Against Brain Cancer.
ENGAGING HOSPICE AND SELECTING A FUNERAL HOME
Hospice is the main setting in which care of the dying has evolved into a natural, patient-centered approach. This special way of care is based on two principles: that dying people should be able to choose how they spend the time they have left, and that their remaining time should be as peaceful and comfortable as possible.
– Final Gifts, Maggie Callanan and Patricia Kelley
What is hospice?
Hospice (as it applies to the United States) is a service provided to patients who are considered terminal – and generally expected to die within 6 months. (Hospice care can go on for longer than this period, but the patient’s status must be considered terminal to continue to receive hospice care.) It is administered through Medicare and is available to persons of any age. Hospice does not provide treatment or curative care – rather their care centers around end-of-life and palliative (or pain-relieving) care. While patients can continue to receive treatment for their illness and remain in hospice, generally once a person enters hospice, medication is limited to lessening pain, anxiety, and discomfort.
Who pays for hospice care?
Hospice care is paid by Medicare as long as it’s part of your insurance plan. If hospice care is not covered by your insurer, but you have Medicaid, hospice care will be covered. After you’ve decided which hospice organizations to vet – I started with a list of about ten – contact your insurer to verify that they will cover those particular organizations in which you are interested. (Disclaimer: I have no idea how the “Affordable Care Act” will affect hospice coverage.)
What services are provided by hospice?
Each and every hospice in the U.S. offers the following team services (mandated by law): the care of a nurse, a medical social worker, a non-denominational chaplain, a doctor, and volunteers. The doctor is more or less the team lead and will be the least engaged of the group. His responsibility is to respond to medical questions and to prescribe medications. He and the nurse will work closely with the patient’s former primary physician and medical team.
The nurse and aide may become part of your family and depending on the patient’s situation, you may see them quite a lot. The primary nurse (and nurses on call for after hours) will be the ones responding directly to the family’s and patient’s needs – administering medications, monitoring vital signs, evaluating pain, and ensuring that your loved one has the necessary medical equipment and supplies. The aide will come every few days to take care of the patient’s bathing and grooming needs. They can also assist with feeding, light exercise, and even some housekeeping, if needed.
The medical social worker is provided to address the needs of the family (as well as the patient) – be it with counseling, grief management, stress or help with filling out forms and paperwork. The chaplain is provided to family members and patients who seek spiritual guidance and comfort. Volunteers are available to provide companionship, as short-term relief for family members when they need to leave for errands, light housekeeping, and grocery shopping.
Hospice also cares for caregivers. It’s called “respite care,” and gives the caregivers time to rest, if needed. In these cases, hospice will provide care for the patient at a facility – giving the caregivers a break. Respite care comes in increments of 5 days per benefit period. Some hospices have their own care facilities, but usually they use long-term care centers. Be sure to check out this important detail when talking with hospice organizations and visit the care facilities before deciding on a hospice. You want your loved one to be in a clean, peaceful, and comfortable environment.
A misconception that I had was that a hospice nurse would be with Charles 24/7. This was not the case. Hospice does not provide 24-hour in-person care. Generally a nurse will visit several times a week and check in regularly via phone. An aide will come every few days to assist with bathing or other needs. If you’ve decided on additional services such as massage or physical therapy, those visits will be scheduled at the patient’s convenience. However, someone from hospice is always available when you need it. You will have two phone numbers: one for day-time assistance and one for evening assistance. You will always be able to speak with a nurse should questions or problems come up. A nurse will come to the patient whenever needed. A doctor is also always on call to prescribe medications or give advice.
Finally, you’ll want to keep in mind that there are some things that are not included under hospice insurance coverage – this includes things like hospital beds, adult diapers, bed pans. You will be billed separately for these items. Should you decide on additional (for instance, overnight) nursing care from a private organization to help you fill in gaps of care, this cost will come out-of-pocket.
Although all hospices operate with set guidelines; quality can vary greatly. Research each organization well. Call and ask questions (a sample list is below) and meet with the aide and nurse who will be caring for your loved one. A “fit” is essential as you probably will be working closely with these two people. If your instincts tell you to look elsewhere, do it! In Charles’s case, my sister and I responded emotionally to a particular hospice, but selected another one because the nurse had experience dealing with brain tumor patients, who can experience dementia-like symptoms (lashing out, confusion, aggressive behavior). We felt that kind of knowledge was more important than the warm fuzzies we felt from the other group. We were very pleased with our decision: the nurse’s experience was invaluable and she treated my brother with tenderness and immediately understood that dignity was vital to him. As you can see, hospice care covers quite a lot of bases and I feel is an absolutely essential part of the dying process.
Some Questions for Hospice:
- How do you establish a relationship/trust with a patient?
- Do you have your own care facility or do you use the facility of another organization?
- Do you have experience dealing with a patient suffering from ___________.
- Please describe your approach to pain management.
- How do you deal with a patient who is anxious/depressed/combative?
- How are side effects from medication managed?
- What special services do you provide such as massage, music therapy, etc.?
- Can you recommend an organization that offers care for times between hospice visits?
A note about pain management & organization
For many terminally ill patients, pain medication becomes essential. This is where hospice is really important. Hospice doctors/nurses can prescribe pain medications that an oncologist or GP cannot. (When one moves from treatment to hospice care – one basically switches doctors and the hospice doctor becomes the “primary” physician.) We were often told that there is no reason for a patient to be in or feel pain, that the nurses can manage almost any amount of pain suffered by the patient. They call it “staying ahead of the pain.” Charles was extremely stubborn about taking any kind of drugs so we let him guide us (he would push our hands away when we tried to administer morphine) – but the important thing is that the tools are there if and when they are needed. Sometimes just this knowledge can ease a patient’s (and a caregiver’s) dread of being in pain and discomfort – which I think is probably the thing we fear most about death.
The hospice nurse will prepare you for administering pain medication by describing the medications, telling you what they are for, and giving you a schedule to follow that includes dosages. You’ll want to keep very diligent and clear written records. In the fog of caregiving, you won’t be able to remember what you gave and when.
Another tip we got from our hospice nurse was to keep a daily log of things like: when Charles ate or drank, what and in what quantity; when he used the restroom; how his mood seemed or how his pain was; who visited and how long they stayed. It may seem like just another thing to try to do when time is tight, but writing these things down can give the nurse (and you) important clues about the status of your loved one. For instance, if the patient hasn’t had anything to eat in several days, this may be a sign that they are in the end stages.
When to engage hospice
The short answer to, “when should we bring in hospice?” is: the earlier the better. I strongly urge you to engage hospice long before it is needed. Don’t wait until the last minute – you won’t have the time to properly vet several organizations. Even if hospice isn’t actively involved right away, it’s vital to have them ready to go when the time comes.
Without the caring, professional and knowledgeable nurses and aides from hospice, we would have not been able to give Charles the level of care he needed. It took four of us family members to move Charles (which needed to happen every 3 hours to avoid bed sores) – and we know we probably hurt him – but it took only one aide to gently and quickly move him. Thanks to the aide’s instructions, we learned how to move him with minimal discomfort.
Not only did hospice help us with medications, bathing and equipment, they were able to decipher what was happening to Charles and to alert us to important signs. I will forever be grateful to John, the gentle aide who came every few days to bathe and shave Charles. One afternoon I sat next to Charles as John did his work. John kept up a steady and comforting banter the whole time. I didn’t realize until after he’d left that he was telling me (and maybe Charles, too) that my brother was going to die that night. Because of him, my family was with Charles during the last moments of his life. We were able to tell him we loved him one final time.
Last Thoughts On Care
As Charles got weaker and more dependent, his needs grew. First he needed help getting in and out of clothes; then help in the bathroom and assistance with eating; finally, he was unable to stand or walk. This means a couple of things like:
- his food preferences changed. Dry, savory and chewy things were out and soft, sweet things were in.
- he became incontinent and needed a supply of adult diapers and wipes;
- his teeth needed brushing.
- he needed a hospital bed.
- he needed to be bathed
- he required scheduled pain management.
It’s easy to get behind the proverbial eight ball, but with a good hospice team and some advance planning and preparation, the dying process can be made less stressful and more comfortable for your loved one.
Selecting a Funeral Home
During a time made up of surreal moments, perhaps the most so were the visits to funeral homes. The soothing music, soft lighting, the hushed voices, the boxes of tissue everywhere – and the literal menu of services that the funeral staff hands you as you describe your situation.
There are many options one can choose when deciding what happens to their remains post-mortem, ranging from a full-on extravaganza including fancy, decorated coffins built to last centuries down to simple cardboard boxes. Disturbing to think about, isn’t it, in such a clinical manner? And yet, that’s what gets one through the experience of planning for the death of a loved one and the preparation of a body, funeral services, and interment or cremation.
Of course, there are a few things to decide before this step. Does your loved one want to be buried or cremated? Will an autopsy be required? Does your family wish to hold a “home funeral?” or plan an elaborate celebration of your loved one’s life?
If possible, talk with your loved one and your family about their wishes and what feels right. My brother wished to be cremated and his ashes scattered in a site in the desert that he loved. This meant that the funeral home provided very little assistance, but their role, obviously, was very important. Briefly, once the patient has passed (and within a certain number of hours – check your state laws), you must contact the funeral home; they will come to gently and respectfully take away the body.
A Few Facts About Funeral Homes
When you engage a funeral home, they will not only go over what services they provide, but they will guide you about state laws, fees, and requirements. They will handle the necessary paperwork for you – including having a notice published in the newspaper, if you wish.
Expect to receive a death certificate within a week to 10 days. It’s a good idea to purchase several copies as some financial institutions require the actual document rather than a copy when managing the deceased assets.
My father and I met with a few funeral homes several weeks before my brother died. It felt like a kind of betrayal – making macabre plans while he was still breathing. But we knew that when the time came, we would be ready. We were lucky – the company we chose wasn’t smarmy or pushy. Their dignity and professionalism really helped on a terrible, terrible day.
On a completely different note, don’t dismiss the idea of having what is called a home funeral. It can be an emotionally draining event, but also can be fulfilling and the act of washing, dressing, and saying last, private goodbyes are true gestures of love for the deceased. It is my belief that no one can care for family like family. Again, state laws vary, but it is legal to hold a funeral at home – and in some states it is even legal to bury your loved one on private property. A powerful documentary film about this topic is, A Family Undertaking.
When the End Is Close
I’m an obsessive planner and a preparer. I have a need to work out every possible scenario in my head. If I know – then I’m not so afraid. If I know – then I can try to control. Obviously truly preparing for and being ready for death is outside the bounds of even the most dedicated control freak, but it is possible to cushion the blow. One way to do that is to understand the process.
Why do we perpetuate the mystery of death when it only deepens our dread and denial? Why do we delay our relationship with death until we are forced, by old age or a terminal diagnosis, to manage the unfamiliar terrain and emotionally and physically arduous task of caregiving? We need to observe, to ask, and to discuss, so that we can be at least a little prepared to help those in our lives who need our care – and create awareness of our own mortality.
Several of the books I have recommended above discuss in detail the stages of death and the signs to look for as your loved one enters “active dying.” Briefly, they are:
- Diminished appetite (generally speaking, after about three days of not eating, the body is ready to shut down).
- Diminished or absence of desire to drink water.
- Bodily functions of digestion and waste elimination slow and then stop.
- The patient withdraws and appears to be elsewhere or deep in thought.
- The patient sleeps most of the day.
- The patient may seem to react and respond to an unseen presence – sometimes even talking to that presence.
- The patient may say things that seem/sound incoherent or strange. Don’t mistake this for a side effect of medication – often their words are powerful indications of imminent death.
- Breathing becomes irregular – sometimes coming quickly followed by long periods of time (5-30 seconds) between breaths. Sometimes a rattling is heard as congestion builds in the back of the throat or in lungs.
- The skin can become blotchy.
It was very helpful for me to research the end stages of death to try as much as possible to be comfortable with the deep shadow of fear that it casts and to not be caught totally unawares. If I know – then I’m not so afraid.
The most important thing one can do is to just be with their loved one. I spent a lot of time holding my brother’s hand and telling him that I loved him. Did he hear and understand me? I don’t know; it just felt good and right to say. But too often my time was taken up with dealing with doctors or the estate lawyer, juggling visits from his friends, grabbing food at the grocery store, doing laundry, etc. Thankfully, there were four of us there so there was always someone with Charles. I wish that I had been able to just chatter with him, remind him of good memories and talk to him about what was happening to his mind and body, but I couldn’t do any of that without breaking down. I do know that he felt my presence and he could have no doubt that I loved him. Maybe that’s enough – just our warm and loving presence to let them know that we will hold their hand on their final journey for as long as we are able.
Each person has different needs, so you must gauge what is best and what is needed. Just cherish the remaining time. If they can still talk, listen. When they can’t, let them feel and hear you. It is hard and you will be challenged like no other time in your life, but the remaining time really is precious and sacred. Hold those moments for as long as you can.
You may worry that you don’t have the “right stuff” to handle such an emotionally and physically draining time. I promise you, you are strong enough to be the caregiver for a family member or friend. Why? Because it is your obligation and duty. It is love demonstrated in the most intimate and personal way. Our familial relationships call us, demand from us the most that we have to give. It is the price of the bond and it is worth every figurative cent.
I’ve distilled down a few key points for you to remember on your own caregiving journey:
- You will discover reserves of physical and emotional strength and patience you didn’t know you had. What can you do when hungry and sleep-deprived? Everything you need to. You will be amazed at how the mind and body can function when they absolutely must.
- You will make mistakes and it won’t matter. I know that in many small ways I failed my brother – causing him pain when moving him; not brushing his teeth often enough; struggling to get socks over his feet – small things like that. But I know that he understood and forgave me. How? Because of the bright smile that would greet me when I went into his room and the way he laced his fingers through mine when I sat next to him. He knew we were all doing the best that we could and that we were doing it out of love.
- You will love and respect your loved one more with each day that passes. Because of the intimacy shared between patient and caregiver, one develops a closeness alien from any experienced during healthier, happier times. This is the time that love is put to the test and when trust becomes absolute. Knowing that my brother put his faith in my love and trust for him humbles me. May I have the strength to surrender in such a way when my time comes.
- Their courage in the face of death will serve as a model for your own passing. I am in awe of the courage my brother displayed during his two-year ordeal. I never once saw him cry; he rarely complained. Even as his body failed and betrayed him, he remained stoic and determined. Will I display such strength when my own time comes? I don’t know, of course, but I do know that I will carry his example with me.
- You will face your own immortality. I can’t say you will reconcile yourself to it – but it would be impossible not to think about one’s own eventual passing and how it might unfold. How do you want to be cared for? What are your final wishes? Are your own affairs in order? If you do nothing else, please organize your own affairs by writing a will, or better yet, creating a Revocable Trust so that you do not burden your family with the senseless time-, money- and energy-sucking bureaucracy of the probate process.
- You will neither forget nor regret the experience. To say that being a caregiver to and witnessing the passing of my brother was profound is to fail to adequately describe the effect on me of the experience. As I’ve written several times within this primer, I do not regret for a moment the time and effort spent with my brother during his illness. Truly, it was his gift to me and I am grateful for the powerful lessens learned.
- You will never “get over” the loss. I reject the notion of closure. It sounds to me like a made-up word to make death easier when in reality, death and loss are never easy. I suppose the idea gives us some comfort; that someday the huge hole left in our hearts by the death of a loved one will grow smaller and be less painful. For me, the idea of feeling less pain at the loss of my brother only makes the distance between us greater. I cherish the pain. I hurt because I love him.
Being completely unfamiliar with the feelings associated with the passing of a loved one, I had the idea that I would be made immobile, useless, buried under the weight of my grief at the loss of my sibling. But in the weeks and months following Charles’s death, there was so much to be done, so many duties that required me to be engaged and focused and active. My grief ran just under the surface and bubbled up at unexpected moments. I’ve learned that tears come at any time and that grief ebbs and flows.
We all grieve differently. A person who appears calm, stoic, and strong on the outside is very probably shattered on the inside. Those of us who seem to cry at the slightest provocation have a steely interior that holds us together. There is no right or wrong way to mourn.
Talking about my brother – even when I had to do it through tears – helped me come to grips with his death, to blunt the sharp edge of loss, and to keep him alive in my heart. Writing about and sharing my memories of him has been a way to relieve my grief. Friends and family who have listened to me talk about Charles have taken up and carried some of the weight of my sadness.
Disclaimer: I want to remind you one last time that I am neither doctor, nurse, nor lawyer. The information included in these pages is meant as guide and encouragement for you to begin to face the uncomfortable eventuality of the passing of a loved one – and of yourself. I encourage you to do your own research and find the way that is best for you and your situation.
Information changes. Laws change. Be sure to double-check any information and resources that I’ve included here.
You’re Are the Best
A big, warm, heartfelt thank you to all of you who have taken the time to read and comment on this labor of love. I get the warm fuzzies just thinking about the love and support I’ve received from you.
And my gratitude and appreciation to friends and family who have read and re-read the primer manuscript rooting out misspellings and typos, and for making excellent and constructive suggestions that have resulted in a more powerful final product.
Coming Soon to a Kindle Near You
Within the next month or two, A Terminal Illness Primer for Caregivers will be available as an e-book on Kindle (and perhaps with other self-publisher vendors). If you’ve read my primer here – please, please, please take a few minutes to leave a positive review on Amazon. Your review will help spread the word about the primer. And if you’d like to add the primer to your e-book library – read on – because you’ll be doing more than just buying a book. You’ll be making a donation.
For a Good Cause
100% of the proceeds from the sale of this primer will be donated to the Charles A. Oliverio Fund at Huntsman Cancer Foundation to benefit research into glioblastoma multiforme, a rare but extremely malignant form of brain cancer. A cure needs to be found for this swift killer: there is only a 2% survival past three years. Obviously, the more books I sell, the more money goes to research. Please help me spread the word.