I met a woman last week, Jim's wife, who described herself as a "failed caregiver." Her husband died 7 years ago after fighting a terminal lymphoma diagnosis for 9 years. When I asked her why she feels she failed, she said, "Because he died and I lost the love of my life and my best friend."
Jim's wife had some background in immunology and pathology, and she had been an all-but-dissertation Ph.D. researcher scientist. She doubted the original diagnosis because of his symptoms and fought to prove that he was receiving the wrong treatment, but the medical records weren't complete and she couldn't access the original pathology reports. In hindsight, she feels she was right, but can't prove it, so she remains angry, and it has seeped into disappointment at herself.
Research with the caregivers for the book suggests that there is no such thing as a failed caregiver unless that person has been unengaged, uncaring, or simply not present. Jim's wife was highly engaged, to the point of putting her professional life on the back burner, and she was a fierce "pit bull" advocate on his behalf. But she couldn't "fix" him, and neither could his medical team. That was an unfortunate reality.
Hopefully she'll find a way to redeploy her skills and talents into an activity that both capitalizes on her expertise and leverages her passion to improve cancer research. Only then will she feel she's making the kind of difference that she only wishes she could have made for him. It won't bring Jim back, but it will help save other lives and bring back some sense of pride for what she was able to accomplish on his behalf.
Pain relief is critical to preserving the quality of life for the person fighting cancer. It is also a medical specialty of its own, so don't assume that your oncologist is necessarily up to speed about pain control or will automatically take pain issues seriously.
Dee, about whom I spoke on October 3, 2012, was diagnosed with stage 4 lung cancer, with an aggressive mucinous adenocarcinoma, a cancer that doesn't have a surgically operable tumor but rather affects the fluids and lining of the lungs. She's been in constant pain that's been only marginally controllable. In fact, her husband says her steady-state pain level hasn't been below a 5 or 6 on the standard 10-point scale for months.
Recently she was hospitalized at a major cancer center for a lung embolism. While there for treatment for that crisis, they asked to see a pain specialist. He prescribed strong and frequent doses of three different pain relievers. Apparently there are multiple channels for pain, and it would take multiple drugs in large doses to control them all, but none of her physicians had yet gone that far in trying to make her more comfortable. The change in her meds has now brought her steady-state pain level down to a 3 on the 10-point scale, a huge reduction.
The Moral? Don't wait to ask to see a pain specialist. This and other forms of palliative care are critical ingredients to ensuring the quality of every patient's life. The earlier you ask about it, the better for your loved one.
I introduced you to Sally in Denial, Chapter 2, on October 21, 2012. She's been caring for her father-in-law who had terminal cancer and a family in complete denial. Well, he died just before Christmas. The family remained in denial throughout his final weeks, to the point where they didn't call hospice until a few days before his death and even then they refused to initiate palliative care (for relief of pain and anxiety). They even revived him several days earlier when he was in the process of dying. They wouldn't give him the morphine that had been provided to make him more comfortable, and their denial was so strong that Sally had to sneak it to him when she was alone and overseeing his care.
Now he's gone, and pain-free, but Sally feels the hole in her life more than anyone. She insists that the dying process should have been about him and making him more comfortable, and not about those who couldn't face being left behind. She's firm and strong in her convictions and only wishes she could have done more to enhance his comfort in his final days.
Instituting palliative care very early in treatment can keep the person with cancer more comfortable and relieve anxiety, even when the prognosis is positive. When it's clear that the course of the disease is irreversible, calling hospice earlier, rather than later, can help the family overcome its denial and prepare for their loved one's death in ways that reduce the burden on the person who is dying and make healing easier afterward for those left behind.
My interactions with interviewees and friends who are dealing with relapses or surprising new metastases suggests that caregiving is rarely any easier the second time around. In fact, the stresses may be even more severe, especially for those who have a history of losing family members and close friends to cancer.
Their commentaries suggest that they are even more likely to resort to motoring through, on automatic pilot. Even if they practice the "one normal pre-cancer activity a day" philosophy, it may not be enough to manage their stress and prevent a cascade of physical symptoms, especially after treatment is completed. As Carl's wife said, "Now he is once again 'safe' - at least for a time. So I can be the sick one. And I am finding it a relief. . . ."
The total physical crash (complete with aches, pains, fevers, headaches, insomnia, and infections) is one likely post-caregiving scenario. Another (more attractive) outcome could be seeking an outlet by talking with your social worker, therapist, or primary care physician about more dramatic stress relievers, whether activities or medications. Even if your best stress reliever is meditation, or talking with your best friend, do something additional the second time around. The question isn't whether you'll get through the caregiving experience--the question is whether you'll get through the consequences of repeat caregiving. Just ask Mike's wife: she's been his primary caregiver for incurable multiple melanoma for over 20 years and has seen him through three bone marrow transplants. Some days going to the gym is her stresss reliever, and on other days it's just folding laundry. But her commitment to keep something normal every day is paying off, for him and for her.
You can learn a lot from friends who are working through a terminal cancer diagnosis and doing their best to cope with it. Each of us knows at least one person who is in that situation. Some of them remain muted, while others celebrate every day they have and wring every ounce of vigor out of it.
My friend Robbi is one of those folks. I met her one day at Hope Lodge, and we bonded instantly. She's sperhaps the most vibrant person I know.
She's had a couple of professional incarnations, one as a modern dancer and her current one as an attorney. Her persona is bright, energetic, and hopeful, even in the face of a combination of metastasized stage 4 breast cancer and simultaneous multiple myeloma. Despite bouncing back and forth between bouts of rigorous treatment away from home and short periods of normalcy when she can return to her busy life, she's always "up." She's always optimistic. She always finds ways to make others laugh. And she never dwells on the pain and nausea from her latest new (often experimental) treatment, or on her questionable prognosis. Her mission is to bring light into others' lives, and she does that every day. Her goal is to be able to live with her cancer, to co-exist with her enemy and make it a friend, since she knows she may never beat it and has to manage her own expectations.
I've learned a lot from Robbi. Her vigorous pursuit of life is something to emulate, and her spirit is an inspiration to all of us who are fighting on her behalf. To know her is to love her.
This is an article that was picked up in numerous publications and websites
nationwide. It may be useful to people concerned to learn how the election
will affect the future of ObamaCare and their access to appropriate cancer
During their lives, one in two men and one in three women will hear the dreaded words, “You have cancer.” No matter their political persuasion, the 2012 election means that cancer patients and caregivers will benefit from full Affordable Care Act (ACA) implementation. Every American will soon have access to:
Implementation mechanics are still being developed by both states and insurance carriers, so much remains to be defined and communicated over the months ahead. Yet caregivers for cancer and other serious diseases can now focus on less on coverage and more on supporting patients day-to-day during treatment and maintaining hope for a disease-free future.
Two uncertainties remain that are important to cancer families as Congress confronts the need to agree on “fiscal cliff” deficit reductions. Mandated budget cuts that are scheduled to take effect January 1 if Congress doesn’t reach prior agreements would jeopardize Federal (National Institutes of Health) funding for cancer research, clinical trials, and breast and cervical cancer screening programs for low-income, uninsured, and under-insured women. In addition, action is still needed on adequate reimbursements to office-based physicians who administer treatments covered by Medicare Part B.
In spite of these two uncertainties, a sigh of relief is timely and appropriate for cancer-affected families. Their focus can now be on managing their loved ones’ treatment processes, supporting them in their day-to-day living, and maintaining their hope for a cancer-free future. These focal points are the core of what effective cancer caregiving is all about.
This is an article that has been picked up in the press but may be helpful to you as the
holidays approach. Thanks to Kathleen Bond, 20-year caregiver, for her inputs.
Having cancer or caring for a cancer patient in the family is hard, but cancer during traditionally happy holidays is even harder. It’s a time when each family enjoys traditional shared activities usually characterized by good food, drink, and company. Yet how can you carry out these traditions when you’re in the throes of cancer treatment or even dealing with the aftermath?
The most important message from cancer caregivers who have worked through these challenges is to seek normalcy, no matter what the patient’s prognosis. It may sound counter-intuitive, but it’s profound. It all stems from the issue of control.
Throughout the cancer care process, both caregivers and patients experience a fundamental loss of control. On some days, it may feel as though there is nothing left of the “good old days.” They describe their quest for normalcy ― for moments of P.C. (Pre-Cancer) life― and their feelings that every aspect of their lives has been turned upside down. They’re less available than usual, and even when available, they may be feeling depressed, anxious, or pre-occupied. Perhaps worst of all, their friends and relatives often don’t know what to say, or do, to help.
The combination of these factors can make the holidays feel like a particularly sad and lonely time, and it might bring the temptation to mourn what’s been lost. But cancer caregivers recommend that you do just the opposite ―that you try to maintain a few of your past traditions, social connections, and day-to-day activities in the interests of being able to celebrate what you still have.
So . . . exactly what does this mean? Pursuing normalcy means doing four things:
Keep It Festive
As tempting as it might be, don’t ignore the holiday. Instead, find a way to put a smile on your and your patient’s faces. There are several things to try:
Keep It Simple
Caregivers are often so tired and stressed when the holidays come that even the idea of all of the traditional holiday activities and “fixings” can feel overwhelming. This is an important time to focus on simplicity; don’t even think about buying or doing too much. Only do the part of the holiday that matters the most for you and your patient. That means:
Keep It Social
Remember that the real meaning of the holiday is togetherness, whether that means gathering together family members or getting together with friends. Family and friends bring normalcy.
There are two reasons for you to let others help. First, the patient needs friends, now more than ever and especially during the holiday season that represents togetherness. Too many people are afraid of cancer ― it’s not necessarily that they think they can catch it from the patient, but they don’t know how to talk to either of you, so they may shy away. Encouraging friends to stay close reminds you of normalcy.
Second, no caregiver knows how long the cancer caregiving experience will last. It can last for a few weeks or for over 20 years. You may well need friends and their help a lot later in your caregiving, especially when you get caregiver fatigue.
So make sure you reach out to friends and family. If invitations to you both dwindle, invite others to your house. Sometimes friends don’t want to intrude on your privacy, so they stop inviting you out. Make it clear to them that you’re determined to maintain your social connections, even if the visits are shorter or closer to home.
Keep It Positive
Cancer disrupts your whole life, and sometimes it’s hard to remember the good things, the things you still have. For Carl, that meant learning how to swim even after one leg had been amputated, because he loved swimming almost as much as he loved his wife. For Mike S’s wife, it was making sure that the family still got together for each holiday and that they continued to build strong traditions, even though he was fighting terminal pancreatic cancer. For Artie’s daughter-in-law and grandchildren, it was about continuing to leave cookies and milk for Santa Claus. These things helped families to get past focusing on what they'd lost and to create new memories centered on celebrating and savoring what they still had.
Finally, if you’re dealing with the aftermath, following a patient’s death, and you’re wrestling with how you’ll get through the holidays, be willing to change family rituals. Consider focusing the holidays around family and friends in a new setting. David’s family had had a ritual about Christmas, and after he died, his parents stopped doing Christmas on the east coast and started doing it in California with their daughter. Another caregiver scheduled a family trip over the holidays, so that the patient and his or her loved ones could be together in a stimulating and new environment that would give them lots to see, do, and talk about other than cancer.
Many cancer patients live long and happy lives, well after their initial diagnoses. Holiday periods nourish their spirits and remind them how much they have to live for. Family caregivers can help lengthen their lives simply by reminding them of normalcy and reducing anxiety. They can do that by celebrating holidays with zest that keeps things festive, simple, social, and positive.
Chapter Thirteen of the book ("The Aftermath") offers some moving and inspiring stories of dreams, visions, and almost supernatural events that caregivers experienced after a loved one's death. Some of those stories were included in the book, but others just need to be told in full in the words of the caregiver directly.
Patrick's wife shared an intimate story of his premature death, and I wanted to share it in the hopes that it will bring comfort to another reader:
Patrick was characteristically busy that fateful week in September: water-skiing with the family on Sunday, piloting a small plane to Houston on Tuesday for a meeting, and sitting on the bleachers with me to watch our son’s soccer game in addition to spending regular hours at his busy Nephrology practice. After a brief round of golf on Thursday evening, Patrick complained of a headache and, uncharacteristically, made an appointment to be checked by his internist the following day. That’s when the brain tumor was discovered.
I was the only one in the MRI room with Patrick later that afternoon when his heart and breathing stopped. A physician myself, I did what doctors do: I called a Code Blue and began CPR. Then I stood watching as a team of doctors, nurses, respiratory therapists, and other emergency personnel quickly converged and began working to restore Patrick’s heartbeat and breathing.
Amid the noisy, frantic activity, I became aware of Patrick standing above his body. I felt and saw an intense light radiating from behind him. I sensed Patrick’s intense desire to leave and his profound sadness at abandoning his family. I spoke without realizing what I said, “We’ll always love you . . . We know you love us. Go to the Light . . . We will be alright. Everything will be alright.”
I felt Patrick’s gratitude, joy, and love as he melded into the Light. So I knew the moment when he “died” . . . our last shared secret. The doctors succeeded in restoring Patrick’s heartbeat and transferred his body to the ICU where he remained for the next 24 hours before we took him off life support.
Connecting with Patrick as he left this earthly life was a gift that gave me strength and courage during the saddest days. Today I smile when telling Patrick’s story.
When I met Linda yesterday, she was glowing. You would never have known that she had been diagnosed in 2007 with Stage IV metastatic breast cancer. Back then, the tumors had been multiplying and the prognosis looked bleak.
Then in 2010, her oncologist put her on a clinical trial that changed her life. After 9 months of rigorous chemo, during which she suffered hair loss and many side effects, she's been cancer free for over a year.
Words she and her husband never thought they'd hear: Cancer free!
Her experience reminds us all how important cancer research is, especially the basic research that is often conceived by young researchers who are most inclined to push the limits of traditional thinking. The Federal Government is the largest funder of cancer research, and the American Cancer Society supports early career researchers whose ideas offer breakthrough promise but who don't yet have the track record to win Federal grants. Today there are so many deserving proposals that only about 10% get funded.
So if you want to make something important happen, get engaged with advocating for cancer research funding. The progress is breathtaking, especially for Linda and patients like her whose lives are saved, but the potential impact for our families, and friends, and generations to come is critically important. We may never discover a single "silver bullet" for all cancers, but every dollar of research support gives me hope that we'll discover a cabinet full of targeted therapies that will save more lives, extend others' lives with a reasonable quality of life, and prevent more suffering.
I spoke with a primary caregiver last night, a young woman we'll call Sally, who is caring for a member of her husband's family. She confirmed that caregiving is lonely, but she added that it's even more lonely when other family members close to the patient are denying that he or she is very sick, or can't / won't eat, or has wounds that won't heal, or is dying.
She described how hard it has been for other family members to pop in from the periphery to keep asking why the patient isn't bouncing back faster. This "seagull" approach to caregiving (dropping in and then flying away, to where it's safe) intensifies the day-to-day caregiver's stress, especially when he or she is experiencing the patient's decline first-hand. Up close and personal caregiving may make it impossible to slip into denial and even more difficult to handle denial from others.
Most patients who are dying want to help their loved ones to cope. They want family members and friends to know when they reach acceptance of the "end game" so they'll support the patient's decision to stop treatment and will be more resilient afterwards. The caregiver's load in caring for a dying patient is physically and emotionally trying enough, without other family members and friends adding to that load by denying reality.
Every caregiver has the right and the obligation to open up channels of communication, to find out where other family members are in their understanding of the patient's medical and psychological situation, and at least to invite them to enter a discussion of the patient's realistic condition. You can't make other family members accept the information, but at least you can offer to have the discussion.
Caregivers' resilience is a gift to the patient and the other family members. Their resilience is strengthened when they and the patient have a broad and realistic support network.
What do you think? Have you experienced family denial? How did you handle it?
Dee experienced a diagnostic challenge similar to several described in the book. She knew something was wrong. She'd started to feel some pain below her rib cage and a little back discomfort. It only hurt when she coughed, sneezed, or breathed hard. At first she thought maybe she'd just lifted something wrong or pulled a muscle.
At about the same time she started to complain of a spot on the top of her head that hurt a lot, especially if she touched it. The spot was so small that she thought maybe she'd been bitten by a tick and that it would go away on its own.
About a week into the side pain, she saw her primary care physician, who scheduled an ultrasound of her abdomen within a few days. The radiologist who read it suggested that she probably had kidney stones. She saw a urologist, who did a cystoscopy and CT scans of the abdomen both with and without contrast. The conclusion was that she did not have kidney stones. There was, however, a small nodule on the bottom of her left lung that hadn't been seen before. The urologist said there was probably nothing to worry about but that they should do a chest scan, just to be sure.
A couple of weeks later, the chest scan showed just the one lung nodule, and it looked a little smaller. Concerned and confused by now, Dee sought out an oncologist, who said it was too early for him to be involved and that the chances of it being cancer were very slim. He suggested waiting two months and doing a comparative scan to track any changes. Meanwhile, almost as an aside, Dee mentioned the painful spot on her scalp. Her oncologist suggested her seeing a dermatologist, who decided to perform a biopsy.
The dermatologist's pathology report called the spot a dermal infiltrate of mucinous carcinoma. Further analysis by more sophisticated pathologists over the next 10 days or so identified it as a metastasis of lung cancer. The cancer was not only in the lung nodule and on her scalp, but had also dispersed in tiny spots around the diaphragm and in the lining of her lung. While the amount of cancer was small, its dispersion was wide-ranging. The result was an alarming diagnosis of stage 4 lung cancer: Not a "come back in two months" message, but a "this could be terminal" message.
After all of this, Dee and her husband were feeling some urgency to get treatment started so no more precious time would be wasted. The easy solution was to go with the original oncologist who already knew the case; he and the thoracic surgery team recommended a surgical procedure to extract cells from the cancerous lung nodule for genetic analysis before beginning chemotherapy. But Dee and her husband decided that the situation was sufficiently threatening to warrant getting a second and even a third opinion.
The second physician, a thoracic specialist, taught them a lot, including that the surgical procedure to sample the lung tissue wasn't required since she had a lesion on her scalp. Yet there was something missing in the chemistry of the potential relationship. Dee suggested cancelling the third visit (scheduled for the next day), but in the end they agreed that they had nothing to lose from the third visit. "When you have three doors in front of you," Dee's husband explained, "you need to open them all to know which one has the prize behind it." In the end, they chose the third thoracic specialist and his team who will use the scalp biopsy tissue to do the genetic tests that will determine the course of chemo treatments.
The additional consults not only led to a change in the hospital and medical team, but have given them peace of mind during a period that was a protracted and stressful barrage of information, doctors' visits, and uncertainty. They're now confident in the course of treatment that will follow, and they're as prepared as they can be for whatever will come. Most importantly, they've found a medical team that is giving them both confidence and comfort as they face the unknown together.
Dee and her husband have drawn several lessons, the most important of which were:
Information can be an important tool, but it can also be scary. Caregivers said they needed to have an explicit conversation up front, to learn how much and what kind of information the patient needed and whether it was similar to or different from what the caregiver needed. Sounds easy, right? But perhaps this is harder to do farther down the road, when the prognosis is becoming more questionable.
Anita, the patient, thinks all is well. She thinks that her treatments are working and that she'll come out the other side. Anita's husband has information suggesting that the situation is far more dire than Anita realizes. He doesn't know what to do, and he's struggling with holding that burden to himself.
Anita's husband might want to consider starting a conversation about information and other planning issues, as a hypothetical. Something like, "We've been swimming in information all along. Sometimes it's helpful and sometimes it's not helpful, or even concerning. What kinds of information are proving most useful to you? What kinds of information would you hope to get as we move forward?"
Once he's had this conversation, it might then become easier to ask, "How comfortable are you with the dialogue we've had with the medical team so far? What's worked well and not so well? How direct would you want your doctor to be if the situation were to become more serious? How direct would you want me to be? What difference would more or less information make for you and for us?"
It's certainly easier to have this conversation sooner rather than later, but posing it in hypothetical terms, as a future planning issue, could open up the needed communication channels.
Brad's cancer fight ended successfully several months ago, but his wife has been struggling. Brad is a local contractor, so he felt they couldn't be open about the fact that he was fighting cancer. She felt alone, raising their young children and soldiering on, as he tried to act as though their life was normal, despite his treatments. The emotional stress got so bad that they nearly stopped talking to each other at all.
Brad's wife started to see a social worker because the pressure of not talking was getting to be too much. She had been to several appointments but couldn't overcome her emotional turmoil to verbalize her concerns. Then, after reading in Things I Wish I'd Known about other caregivers' discussing their wide-ranging emotions during their own experiences, she realized that her emotions were predictable and fairly common among caregivers. She made a list of all the emotions she was feeling, and she discussed them with her social worker. A short time later, she was able to engage him in a conversation about their respective experiences and emotional reactions to them. Brad's wife says they're now reconnecting with the love and companionship that had united them in the first place.
Brad and his wife's willingness to acknowledge how it felt on both sides of their shared journey was the key to resolving a potentially permanent rift in their relationship. Their relationship is now getting back where they want it, and they're both feeling better as a result of just a little candid and open conversation.
Karen has been fighting metastasized breast cancer for nearly 15 years. She is married, with teen-aged children, so you would think she wouldn't be lonely. But her suffering from cancer is aggravated by the suffering and anxiety that's resulting from her caregivers' state of denial. She shared her plight with candor and only a few tears:
I’m dying from the inside out, and it’s lonely. I’m in pain all the time, and I can’t do many of the things I used to be able to do. I’m trying to prepare my family for what’s to come at the same time that I fight to prolong my life. But my husband and kids are in denial. A long time ago, when friends asked how they could help, my husband said we 'we’re fine,' so they all backed away. Now that I find food shopping, and cooking meals, and so on, to be a real challenge, there's no one to help. I feel all alone. It hurts.
If only a conversation could take place in which each family member could talk about how it feels, each of them would be able to clear the air and provide Karen what she really needs: open communication, direct support, and the knowledge that their love for her is leading them to engage with her and to help in the greatest challenge of her life. After she dies, it will be too late for a do-over.