#BCSM Archives - The Practical Caregiver Guides

Problem: A 75-year-old friend has experienced a serious health decline. The elderly woman is battling breast cancer. Reader contacts nationally acclaimed advice columnist, worried that the friend has dementia.

Symptoms: The patient forgets to eat, which leads her to lose consciousness in public. She has been hospitalized for malnutrition and dehydration. She is forgetful and repetitive in her conversations and written communications. She appears to be increasingly frail and unkempt.

Patient’s support system: Never married and without children, she has one sibling, who is aware of her decline and wants her to move to a “retirement community”. Other possible support comes from the reader and associates at the company that formerly employed the elderly woman. They want to suggest that she hires home care help while she considers a “retirement home”.

Advice columnist’s view: Talk to the friend (who is having communication issues and may not comprehend). Do some research through the local office on aging and present the patient with options that will allow her to remain at home (assuming the dementia diagnosis is accurate). Try to visit frequently. Do things with the elderly friend. And if things are dire, contact the sibling (presumably to intercede).

On the surface, it all sounds like a good working plan, except for one thing. The 75-year-old woman is battling breast cancer.

In the past year, I’ve lost two family members to cancer. I’ve also been there for two cancer surgeries for another relative. And, sadly, I had a beloved relative who had advanced breast cancer that was never diagnosed, despite multiple visits to her physician and complaints. When that breast cancer spread to her bones, every bit of her body ached and she suffered enormously. She could have been helped by proper cancer care, but because she was elderly, she was treated for age-related issues. That is a lesson I will never forget, because the people who loved her were unable to help her. When the aches and pains an elderly person experiences are chalked up to arthritis, dementia, or any other age-related issue, that patient will not receive the appropriate treatment. There will be no palliative care for the pain, no treatment for bone mets, and no help with issues such as nutrition and hydration.

So, what did I do when I read the advice from the nationally recognized advice columnist? I contacted her, pointing out the very real possibility that the problems the elderly woman was experiencing were actually the result of the breast cancer. It might have invaded her brain. That’s not an unusual thing with breast cancer, is it?

There is also the very real possibility that the decline in mental function was the result of powerful chemotherapy drugs and/or other treatments. Many breast cancer patients are familiar with the annoying and debilitating effects of “chemo brain.”

Anyone familiar with cancer patients and the challenges they experience knows that the malnutrition and dehydration issues raised by the reader can be symptomatic of the breast cancer. That’s why many cancer centers have nutritionists that work with families to assist in providing nutrition to the patient that is tolerable under the circumstances.

And let us not fail to consider that this 75-year-old breast cancer patient could be depressed with her circumstances. Having breast cancer can bring the strongest of us to our knees. I have a number of friends who are breast cancer survivors, married and single. They have shared their insights in ways that are now permanently etched on my mind and in my heart. Having breast cancer can be a very lonely, isolating experience. Good support is critical in surviving the brutalities of the disease.

The response to me from this nationally acclaimed advice columnist was less than stellar. She was offended. She took umbrage at my response to her advice. She tossed in a tiny little, “could be the cancer”, which was apparently meant to make her appear to be flexible on the subject. But she stuck to her guns that her advice was appropriate. It wasn’t. Why?

By sloughing off the 75-year-old woman off as being elderly, she had actually provided harmful, not helpful, advice (which raises the question of liability should the 75-year-old breast cancer patient be involuntarily hospitalized for dementia if the cancer is causing the problems). She allowed the “dementia” label to stand. She didn’t correct the reader or open the possibility of some simple ways to help the cancer patient.

What would be MY advice? First and foremost, if a woman is battling breast cancer, recognize that’s a medical diagnosis. That means somewhere, at sometime, an oncologist has treated the disease. We also know the patient has been treated for malnutrition and dehydration in a hospital. Is she still being treated or did treatment end? A scan could reveal a brain tumor pressing on the part of the brain that involves executive decision-making, for example. That’s not a matter of guessing that the patient has dementia. That’s a medical opinion backed up by scientific testing. Has that been done?

Hospitals and medical centers who treat cancer patients normally have cancer navigators, patient advocates, social workers, and a myriad of other support services that can assist a 75-year-old woman who lives alone, but has people to care about her. There is no need to go to the local office on aging for advice on anything.

But there’s a glitch, a very big one. HIPAA laws prevent unauthorized people from getting information on a patient’s situation, and rightly so. Obviously, the reader and her associates can’t call the medical center to find out how they can help. The 75-year-old breast cancer patient’s sibling might be able to do so, however. Normally, if someone is that debilitated by illness, a relative is essential in helping to navigate medical treatments, insurances, and other related issues. What is his involvement? Does he have power of attorney? Does she have an independent conservator? Who is helping this woman get through her treatments (or is she struggling on her own)? That’s the “go to” person. Every cancer patient needs one.

Thus, the best starting point would be finding out who is the “go to” person for the elderly friend. Who accompanies this woman to her treatments? Or has she been struggling with this issue by herself? Has she stopped treatments because she’s been too debilitated to get herself there? Is she terrified she’s dying and in denial? The reader and fellow co-workers could offer to drive her to and from treatments, couldn’t they? They could volunteer to stay with her during her treatments. They could be there when the side effects sideline her. They could find some positive ways to improve the quality of life for the patient that address her real needs, not her assumed needs. But they need to know who the “go to” person is and coordinate.

The minute anyone reads that a person with a cancer diagnosis has experienced a decline, it automatically becomes a medical issue. Whether it’s the cancer, the complications, or the stress of the disease, it’s critical to properly assess the patient’s condition, setting, support system, and services. No 75-year-old woman should be assumed to have dementia based on the observations of well-meaning, but untrained lay people.

The greatest danger that this 75-year-old woman faces is that she will be placed in a skilled nursing facility by her sibling because it is assumed her mind is failing due to dementia. If the real problem is that her breast cancer has metastasized, she could suffer through what remains of her life. She could be medicated with drugs used to treat dementia and not treated with drugs that would provide comfort at the end of life.

But the one point I would make here is that we don’t know what kind of relationship this 75-year-old breast cancer patient has with her cancer team. For all we know, they have done all the tests, diagnosed the disease accurately, and treated the patient humanely. If that is the case, perhaps what this patient really needs is the love and support of family and friends. Maybe she doesn’t know how to ask for it. Maybe she doesn’t know she can get it. So often, communication is a critical tool for a cancer patient, whether it’s talking to the oncologist or explaining problems outside the hospital setting. That nationally acclaimed advice columnist should have suggested that the reader and her associates find out more about how to help a woman dealing with breast cancer. There are plenty of good resources for that, ranging from The American Cancer Society to #BCSM, better known as Breast Cancer Social Media, formed by the late (and wonderful) Jody Schoeger and her social media partners, Alicia Staley (a great cancer advocate better known as Awesome Cancer Survivor) and Dr. Deanna Attai, a well-respected surgeon on the UCLA Breast Care Team.

I mentioned Jody Shoeger because I had the pleasure of interacting with her at a cancer blogger conference out in Arizona several years ago. She was the epitome of a wise and caring counselor for breast cancer patients, often reaching out to those who felt marginalized, isolated, and alone. She taught me about making assumptions one day, by correcting me — not all breast cancer patients have adequate support. I will never forget one post from her. She let a breast cancer patient anonymously share her painful personal story of being shunned by her husband once she was diagnosed. I have never been able to let go of that tale. It follows me wherever I go. It makes me determined to speak for those who don’t have the strength or the confidence to ask for help. I owe it to Jody now to share this with you. If you know a woman who is battling breast cancer, don’t throw your money into all things pink. Reach out and help in real ways. Learn what life is like for breast cancer patients and find out what you can do to help improve quality of life for a woman who is struggling. That’s what a real friend does.

In my continuing effort to provide resources and support to cancer families, I would like to introduce you to Jody Schoeger. Her blog, Women with Cancer, has some wonderful insight into how cancer affects women and their lives. It’s not just about living with cancer. It’s about living life out loud with cancer.

What would you find if you met Jody in person? I was recently lucky enough to have that pleasure. We actually first talked on a little putting green in Arizona. My first impression of her was of a real Texas dynamo in a tiny package. Fit, funny, and even feisty when it comes to cancer, Jody’s warm personality comes shining through every step of the way. Her ready laugh and her obvious delight when making a decent putt put her in the category of social powerhouse. But it’s her work with cancer survivors that best defines her.

When I approached her about doing an interview for my cancer blog, I had enough good sense to ask her to be straight with me. I wanted to provide the information that she felt was most important for cancer families. The great thing about Jody is that if you throw her the ball, she’s more than capable of making a winning shot. I thought I would focus on ways to help men understand the issues in having a wife or girlfriend with cancer. Jody wisely pointed out that not every woman has a man to hold her hand every step of the way:

“There are a few things to consider. Not all women with breast cancer are married or in a committed relationship; so the questions need to better reflect the audience. There’s a large percentage of single parents and and/or divorced single women who also are navigating cancer.”

That answer is one of the reasons I felt comfortable posing questions to Jody. She speaks from the heart and the head. She’s always looking for new ways to reach out to women with cancer.

If you were to go to Jody’s blog, you’d find she covers related topics ranging from a very poignant letter from a breast cancer patient grappling with the effects of her treatment on her marriage to the latest news on the National Comprehensive Cancer Network Survivorship Guidelines to the effects of chemo brain on the mind and ways to improve cognition. She also has a great list of other cancer blogs that will increase your ability to find information and inspiration about cancer. Resources are so critical when you’re feeling overwhelmed about cancer.

Jody’s professional background is impressive. If anyone is capable of creating an online cancer community to support, empower, and motivate women with cancer, it’s she. With more than 25 years of experience in public relations and communications in health care, science and education, she brings a lot to the table. Diagnosed with a locally advanced breast cancer in l998, she pushed herself to survive and thrive, and now she offers women sage advice and information. I could list all of her impressive credentials, but the truth is that what she says stands on its own.

One thing I do want to mention, however, is that Jody is one of the founders of #BCSM, breast cancer social media. The virtual meetings take place on Twitter every Monday evening at 8 pm CDT.

bcsmcommunity.org.

(Alicia Staley and Dr. Deanna J. Attai are the other two brains behind this social media chat fest. I also met Alicia, a three-time cancer survivor, and I’m hoping to interview her at a later date.)

Sara: If you were to address the caretaker of a newly diagnosed woman, what are the most important things would you want him or her to know about breast cancer and its treatment?

Jody: From the point of diagnosis, both the caretaker and patient are in new territory and changing roles. There’s no doubt that cancer stresses a relationship. So first, process the shock and your own feelings as honestly as you can. Then it’s important to determine your strengths as a caretaker. Think about how you can best support the woman you love. Be honest with yourself and with her. As she has a treatment plan, and medical appointments begin to fill your calendar, think about your own plan to take care of yourself. Breast cancer treatment can go on for up to a year or longer. Your own efforts to maintain “islands of free time,” for exercise, a round of golf or other enjoyable activities are incredibly important. Many of us go into Super Hero mode when a loved one is diagnosed. That’s all right for a short period of time but not workable for the long term.

Sara: As someone who was a caregiver for a lung cancer patient, I can attest to that as being great advice. I think we really do have to face our own feelings as honestly as possible and to process them, so they make sense. A number of caregivers charge forward into the role without really understanding how complex it really is. If you don’t know what you can give, you can’t really find other members of the caregiver team to fill in the blanks. And you’re also right on the mark about Super Hero mode. This is a marathon, not a sprint, and we have to be prepared to go the distance.

What steps would you advise newly-diagnosed women to take to help them prepare for what lies ahead?

Jody: The first thing is how essential it is to learn about cancer, what the recommended course of treatment is and the range of side effects that might be anticipated. There are many different forms of breast cancer. Most don’t realize how complicated breast cancer is and that treatment may involve only surgery, or surgery plus chemotherapy, radiation and/or hormone therapy in various combinations. It’s a lot to take in at one time. But you don’t want to look back either, and realize that you could have made a better decision about treatment. You have time to think, learn, and talk with other survivors. There’s only a small subset of breast cancers immediate action is necessary.

The next thing to do is organize for illness, as I call it. I immediately got a large binder to hold information and medical reports. Then a friend created an email list to keep coworkers informed. Others find starting a blog is helpful. The key is that you reorder your priorities so that taking care of your cancer is at the top of the list.

Sara: One thing I learned from speaking to breast cancer patients is that treatment really is complicated when compared with other types of cancer. It all depends on what type of breast cancer a woman has. Some are more aggressive than others. And this is a disease that often is affected by hormones. It’s also a very intimate kind of cancer, which can change our perceptions of ourselves as women and sexual beings. Your point about rushing into treatment without understanding the big picture is well-made. If women aren’t at immediate risk, it makes sense to delve into all the information and weigh it before choosing the right course of action.

I’ve heard a lot of women say that “men just aren’t there” for them during cancer treatment, or fall short in terms of offering the right kind of support. Are there ways for women to close the gap on what husbands and boyfriends can’t do for them? Would a “cancer mentor” or “cancer buddy” make a difference?

Jody: This question is problematic in a sense. It’s not realistic to expect any partner to meet all of our needs even when we are well. Women learn from and lean on their friends all the time. This is the same in cancer. Finding other survivors is key. They can make good suggestions and provide reassurance that your family can’t. There’s nothing like walking along with someone who has literally worn the same shoes. Today with interactive platforms like Facebook and Twitter it’s easy to connect with other breast cancer survivors.

Sara: That’s true. With all of the complex realities of cancer, it really does help to speak to other women who have “been there, done that, and got the cancer tee shirt”. I’ve had other cancer survivors tell me that their families just “didn’t get it” when it came to the right support. Being able to reach out to experienced cancer survivors is very helpful. I’ve found that very few people who have gone through treatment are unwilling to share insights and offer solid advice. It really can demystify the process.

Women are so often the caregivers in the family, yet during cancer treatment they need their own nurturing. Are there strategies to help them get their own needs met and lose the guilt over what they can’t do for other people?

Jody: This is often the hardest for a woman if there are still children at home. At the same time, I’ve seen many families navigate this successfully. The shared characteristics were a sense of teamwork and excellent communication. So there aren’t any strategies per se, but a shared realization that getting through treatment is something that is tough and can be managed. It’s important for everyone involved to maintain a sense of daily life and order. And the funny thing about cancer treatment is that you aren’t sick all the time. There are good days and bad days. Once you learn how to best care for the low points following a chemo treatment many things fall in place. It’s also important to distinguish doing from being. You certainly can still love and be with your loved ones, that doesn’t change. But if a woman’s sense of self is tied up in everything she “does” for others then family will need to reorder its expectations. All of this is about facing change.

Sara: Maintaining a sense of daily life and order is all about imposing structure in the face of the chaos of cancer. Sometimes people surrender to the impact of the disease and that begins to drive the day. By taking charge of home life and making it as normal as possible, families are able to remind themselves of what is still “normal”, so cancer isn’t in charge.

I also like your point that you can learn to navigate through the low points of chemo. It helps to recognize the patterns of side effects and when they will pop up, so that you can make the most of the days when you are likely to feel good.

You make a valid argument that the whole family may have to “reorder” its expectations of a woman with cancer. We women sometimes take on the “doer” role and find it hard to surrender that because we get so caught up in “the rules” about who and what we should be. That can be a trap for many women, but it also sounds like families can get past that by letting go of those expectations and working to help a woman get through cancer treatment. What’s the most important thing cancer taught you about life and love?

Jody: Cancer reorders your priorities. There’s no doubt about this. Nothing gets your attention faster than a potentially life-threatening condition. What I’ve seen is that the majority of women discover how strong they truly are. Early on, a lovely woman passed this on to me, “If you didn’t know how much you were loved before, just hang on. You’re about to find out.”

Those words have never left me. What a gift.

Sara: Truer words were never spoken, Jody. When cancer strikes a family member, it’s a chance to realize what matters most in life. We can let go of the petty nonsense and focus on using what we have to make a difference in this world. It’s hard to squander our lives when we know how precious time is, love is. Thank you so much for allowing me the opportunity to pose these questions. I hope women take heart from your words of wisdom and seek the support they need.

Jody Schoger’s Women with Cancer Blog
BCSM — Breast Cancer and Social Media Twitter Community Site