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.