Readers were invited to ask Julia Bucher, a registered nurse and an author of a caregiving book, about handling a family member’s new illness, specifically cancer. Dr. Bucher is an associate professor of nursing at York College of Pennsylvania, in York, Pa., where she has taught community health nursing, research and health policy since 2006. She also works as an advanced practice nurse at one of York College’s nurse-managed centers. Her research focus is problem solving and coaching the family caregivers of people with cancer. For eight years she was a regional planner for the American Cancer Society. She received her Ph.D. in community systems planning and development from Penn State University in 1992. She is an author, with Peter Houts, of “American Cancer Society Complete Guide to Family Caregiving” (American Cancer Society, 2011). Here are her responses to readers’ questions.
Before answering specific questions, I would like to extend my sympathy to the many people who wrote in about their loved ones’ illnesses. Every question tells a moving story. It is never easy to deal with cancer. There are so many choices and so many issues — medical, financial, emotional, as well as confounding logistical puzzles that take a toll on a family and can seem overwhelming. But in my practice and research I have found that caregivers can cope better than they first imagine, by breaking down problems into solvable parts, and investigating how and where to find help. Because home care options are so varied and so dependent on location, I strongly suggest consulting with a social worker or a home care or oncology nurse.
Q. We just got the news that my 84-year-old mother has Stage IV lung cancer. I’m devastated. She lives in New York and I live in California. I’ve extended my stay in New York. She has stroke-related dementia, but she is still alert and interacts. I’m wondering about the potential impact of the cancer on her dementia, and vice-versa. We are waiting to find out if her cancer is treatable with a special pill. I have so many questions, but the most important ones are how to make sure she suffers as little as possible. — Dahlia Blair, San Francisco
A. The health care staff will also want to minimize any suffering by your mother, and here you can be a crucial advocate. Your observations about her comfort will be welcomed by them because you provide insight and information about any pain she has when moving, turning in bed or getting up. If your mother cannot express her comfort you may be the one to observe her motions, facial expressions, hand grips or clenched fists in ways that the staff do not. You can help the staff members piece together your mother’s comfort levels and help them determine if the nursing care and the surroundings are having the desired results. Speak up if you think her comfort can be better and her suffering less.
Hospice care (given by an outside hospice agency staff who visit the nursing home to assist nursing home staff with end of life care and symptoms) is available in most skilled nursing facilities, and hospice staff members have special experience in maintaining her physical comfort. Should the cancer “pill” work, your mother may even be able to return home, and home health care staff or hospice staff also will make minimizing suffering a priority.
While you are a key advocate, you should not be alone in managing this situation. If you return to California perhaps you can orient a local friend to be an advocate while you are away. Make two lists with options for how to address these issues, depending on her progress or lack of response to this treatment. The National Association of Professional Geriatric Care Managers at www.caremanager.org has social workers who can help you address being a long-distance caregiver. Social workers can also serve as advocates for patients, especially for those with dementia.
When Home Care Makes Sense
Q. My Mom is almost 81 and was diagnosed 16 months ago with metastatic (stage 4b) uterine papillary serous carcinoma. She’s done fantastic and continues to be with us but this won’t last. I am her eldest daughter and her primary caregiver. I have a full-time job (and they have been wonderfully understanding of my situation) and live about an hour from Mom. I have successfully managed/coordinated all of her medical care, thank God. I am having a very difficult time, emotionally, dealing with this. My Mother is going to die and I hate the idea of this. This is taking a toll on me, emotionally and I’m sure physically. I speak to my Mom every day, sometimes several times a day. I want to be there to emotionally support her and, each time I dial the number and she answers, I know it’s a gift. One day I won’t be able to hear her voice and it breaks my heart. I don’t know how I’m going to get through the death and dying part of all of this. I want to be there for Mom but the idea of her in pain and suffering (even with hospice, there still will be suffering — emotional suffering, too — is killing me. How do I get through this? I can’t physically do what it will take to be her 24/7 caregiver at home when she’s on hospice. I’m a very small person and not physically strong. How do I get through the loss of my Mom? I suspect one doesn’t. The loss is too great. You just get used to the idea that she isn’t there any more. Thank you for listening. — Debbie, N.J.
Q. How should caregivers weigh the desires and needs of the ailing cancer patient versus the desires and needs of other family members, especially children? What if the patient wants to spend his/her final days at home, but for the children’s sake it’s better for the patient to go to hospice? —NYCMom, New York, N.Y.
Q. How much can one ask of children of an afflicted partner in terms of helping in caring for a cancer patient if the going gets tough. Though 24/7 is beyond most normal limits for help, what can one ask of the family if they do not volunteer and avoid contact so as to minimize involvement? —sliebers, Cherry Hill, N.J.
Q. My mom was diagnosed with Stage IV leiomyosarcoma last summer. Three surgical procedures later, she is still fighting. Her requirements for significant caregiving come in waves. She is fine and living autonomously for a while and then has a procedure that requires my 24/7 care for weeks. The ups and downs have been stressful and I find myself angry and frustrated whenever I am called upon to drop everything to go help. She lives five hours away and has no interest in moving closer. We did not have a great relationship prior to this and that complicates my role. I feel I have PTSD from these experiences because each of them appears to get progressively horrible. She will not follow instructions to improve and seems to want to stay sick to have me stay with her. I have hired in-home caregivers to augment my presence. Sometimes she fires them before their term has ended. I know we have a long road ahead and I have to find a way to handle it. Can you offer some suggestions on how to handle this better? — Bretseker, Nevada
Q. Dear Professor, I think you left out the relationships of extended family in your article about cancer patients. You know, the favorite unmarried aunts/uncles, folks who may (if lucky) have a niece or nephew who cares a little bit, but not enough to be relied on to help when things get close to the end. I am one of those “aunts,” a baby boomer (65 years old) who is single — never married and no children and a cancer survivor so far (ovarian). My three sisters are all married with families and live far away. I am making it on my own regarding treatment. I get some telephone support, but get more day-to-day support from friends and colleagues though I suspect that will gradually disappear the longer I am out on disability. I think there may be other single folks who could be in this situation. — LCT
P.S. I was a caregiver for my mother ever since I finished grad school back in the 1970s when all this kind of advice and home care products didn’t exist. I wondered back then who would do the same for me when my time came, especially as I saw how other married siblings can head for the hills when this kind of care is needed. I saw the truth in the saying “one mother can raise many children, but many children cannot care for one mother.” My mother lived with me 14 years and in the early ‘80s developed breast cancer. She passed in ’85. I’ve seen other families break down over who will be the caregiver, but not seen much on how to prevent that from happening. Maybe a Dr. Phil show to come?
A. Although the family situations vary, DebbieNJ, NYCMom, sliebers, Bretseker and LCT (who e-mailed me) have several common concerns about their role and ability to provide 24-hour care at home as a family member becomes frail. Is home care a wise choice when a caregiver is alone, or not appreciated? What about when it disrupts the lives of others at home and when others we think should help us are refusing to do so? These caregivers anticipate many stresses and wonder about making the right decisions to meet future caregiving demands.
To help evaluate whether home care remains a reasonable choice, learn about the options for services that provide help at home with a patient’s everyday activities, like bathing, doing the laundry, eating, getting food and transportation to medical providers. This will also help you devise a plan for a time when home care is no longer feasible. Keep in mind that a combination of options can be tried. For example, should one go to a nursing home, it is possible to go home on weekends if a family member or friend can stay and help with basic needs. Factors to think about at home involve safety, preventing falls, the stress of getting up to cook food, taking medicines, or taking care of everyday basic needs as well as managing the symptoms of cancer or the side effects of treatment. Many of these activities can be overseen or assumed by staff in the home or in a nursing home. Decisions to stay home or live somewhere else are more about the extent of needs and abilities of caregivers to meet these requirements or to involve others for hands-on help.
Debbie, NYCMom, sliebers, Bretseker, and LCT can also explore other places where round-the-clock attention is given. Rresidential 24-hour skilled care, assisted living or personal care are all different levels of services billed to insurance, depending on what people can do for themselves versus what they need help doing. “Free-standing” (not at home) hospice care also is available. An online search for “hospice” in your county or region should yield contact numbers for 24-hour hospice care facilities to help with the last weeks of life. Because services and costs vary from place to place, keep careful lists as you call each facility.
Local social workers can help cut through the confusion by reviewing the options with the families, including the person with cancer. Social workers are available at home health care agencies and in hospitals; often you will have to take the initiative and request a meeting. (Keep in mind possible conflicts of interest like a hospital social worker recommending the hospital’s services.) The National Association of Professional Geriatric Care Managers at www.caremanager.org lists local professionals to help with transitions and decisions. Besides helping sort through out-of-home care options, social workers can provide information about how to get more help at home so care is not so overwhelming, as well as how to help children cope. As for enlisting unwilling family members, I’m afraid that in my experience this has the potential to cause more rather than less stress for the primary caregiver.
Simply having one or more plans in place may ease the worry and uncertainty about future responsibilities. Remember, though, that if you do make a big change in living situations for the patient, a change can be undone if it is not working. Evaluate the results after several weeks or so. Understandably, some caregivers are worn out by this point and just give up, rather than think about whether a different place or solution, like adding helpers at home, might be better. Hats off to all of you for learning more and thinking about ways to make these transitions easier on yourselves or your families.
Preparing for Grief
Q. For caretakers of folks with end-stage cancer, is there a way to prepare for the end? I thought that being my mother’s primary caretaker between her diagnosis and death was hard to bear; then my mother died. The grief was tectonic. As caretakers, we’re so focused on helping our ailing loved one that we may lose ourselves. When our loved one dies, we move into the hardest part of our lives utterly spent physically and emotionally. Is there anything caregivers can do to, for lack of a better word, mitigate this? — PW, Chicago
A. PW, and Debbie in her multipronged question above, ask a question many of us face: how can we prepare ourselves to cope with the enormous loss and grief ahead? The question can cause anxiety on top of the other decisions and daily care we give. If we apply a problem-solving approach, perhaps we could step backand better understand our fears. What did others we know do to cope with grief when it hit? If we list what are specific fears are, we can create a plan to talk with a professional counselor or trusted friend about our worries involving future grief. For example, are these anxieties affecting our sleep or appetite? What helps us focus less on worrying about the future? Perhaps seeing our own health care provider is in order for assistance with our own basic needs. Support groups for caregivers are available including online. You can be matched with other caregivers on the American Cancer Society Cancer Survivors Network or through I Can Cope workshops. Telling others what we worry about can help ease the emotions swirling inside us. We can evaluate whether our anxieties are manageable. Hearing or reading about what worked for others helps us create a plan. Grief-support groups and counseling also are available.
Q. I can’t imagine life without my husband. I will be lost without him. We are both in our 40s. I am likely to use as much family medical leave as possible just to have time with him. I don’t know if this is prudent as I’m the sole breadwinner, and the insurance is linked to my work. How can I return to work confident that he will be O.K. at home? We don’t know if it will be a year or 20. Very rare tumor on brainstem. Medical profession just doesn’t know. Not sure how to prepare for the unknown. We don’t know how or when this will progress. Hard to feel like we have any control. Should we be trying to find clinical trials on our own? I haven’t found any. And not sure how to evaluate them. I don’t want him to be a data point. — Lisa, Cambridge, MA.
A. To understand the options, LisaCambridge, MA may want to visit her Human Resources Department at work for information on job security and use the employee-assistance program for initial counseling. Going to her supervisor for guidance and agreed upon “rules,” like how many times can she call home in one day, also may help her return to work. Developing a communication plan with her husband is essential. This way problem-solving will become the work of a team. Another one of Lisa’s uncertainties is about entering a clinical trial researching treatment or approaches to ease the end of life. Getting information on trials is best done by consulting medical professionals and “consumer” advocacy Web sites. Clinicaltrials.gov and the American Cancer Society are good places to start.
Changing the Dynamic
Q. While being supportive of an old friend, I have experienced my own life-changing situations. There’s no discussing it, no listening, no empathy, no time, not even a “How are you?” No! There’s only the friend’s concerns, problems and procedures. The attention-grabbing needs are so intense, so all-consuming and so problematic that I am slowly pulling away. Am I being selfish? Unquestionably. How to find a place between us where there’s room for me in this equation? Is that even possible? — Nanna, Denmark
A. NannaDenmark identified the problem as one-way communication. There are several options. End the relationship. End it and tell the truth about why. Work together to discuss the problem; bring in others to help solve the problem; or do not make any change in communication. Combining solutions may be one way to get out of a rut and bring new life to an important friendship.
A Mother’s Rights
Q. [A paraphrase] A reader writes that her adult daughter was given a diagnosis of Large B cell Mediastinal (12 centimeters) Lymphoma a year ago and is getting chemo treatments. Despite surgery, the tumor has spread to the lungs. The mother feels frustrated because her son-in-law is directing the treatment and she has no authority to get information from her daughter’s doctors. Do I have any legal options, she asks.
A. This situation is very complex. I can hear your worry for your daughter and her family. You can consult with the hospital “ombudsman” or patient advocate, who can help you learn about your rights as a mother. Health care providers follow strict guidelines about making medical decisions and sharing medical information. Your daughter ideally is the one to make decisions about her care and the goals of this care. I do wish you the best as you seek help within the medical systems that she uses and that she is included in your steps if at all possible.
Question 1: Why can’t oncologists and other specialists whose patients are elderly or infirm offer appointment times on evenings or weekends? Caregivers are usually employed full time, and are forced to miss multiple days of work or risk losing their jobs to simply take their loved one to the doctor. We exhausted all of our sick days and vacation days taking dad to his appointments, and had none left for our own needs and after that ordeal we definitely needed them. Question 2: End-stage cancer patients are often bedridden and/or suffering from intractable pain. I know that when I’ve had to take Dad to the doctor (for a simple hormone shot or checkup), the pain he experienced from having to get in and out of the car was excruciating. Is it too much to ask that doctors actually consider reviving the traditional house call for their sickest patients? Question 3: Why can’t the medical profession coordinate care so that the patient and caregiver are not required to make multiple trips on multiple days to see multiple specialists? I’ve had to take Dad to his urologist, oncologist, radiation oncologist and gastroenterologist appointments on four separate days, when all four physicians had their offices in the same building! Being able to see all in the same day would have been so much better. — J. Wray, California
A. J. Wray details the obstacles that people with cancer and their families sometimes face. Until services are broadened to weekends, evenings and compressed into one day, what can he do to overcome these burdens? Do not hesitate to be upfront and ask about options for appointments. Some hospitals, outpatient clinics and offices offer the services of a “‘nurse navigator” who answers questions for the whole family and track patients when they are in hospitals, home, or at the medical offices to give guidance, information and support. Getting their help scheduling more convenient appointments would be valuable. Social workers may also be able to provide new information and options for transportation and scheduling appointments. This way JWray may not have to take so much time off of work and transport days are easier on his Dad. Many cities now have mobile labs that can be scheduled to do blood work at home as well as mobile X-ray units. Home health nurses also can do blood work and help the family schedule medical exams on the same day. These nurses also can substitute for doctors’ house calls by assessing people with cancer at home and sending the findings to the doctors. With health care systems talking about being more “patient-centered,” it can’t hurt to ask about the possibility of doctors making house calls. No matter what local options exist, it is still up to us to be the advocates and make special requests. Cancer transportation programs can take on some of the driving and assist Dad in and out of vans or cars and into wheelchairs. Family members may be able to call the doctor’s office and take part in conversations via speaker phones. More providers are using e-mail to answer questions.
Older Cancer Patients
Q. What do older cancer patients consider their biggest challenges? And what do they consider the most helpful approaches by caregivers? — Anne Mackin, Boston
Q. My experience is that doctors don’t use matter-of-fact terms like “terminal” anymore and go to ridiculous lengths to prolong life at almost any cost, even for quite elderly people who will suffer far more from treatment than they would if they chose a natural death. Somehow it got to be verboten to choose palliative care. My 85-year-old father (still clearly grieving the loss of my mother) was herded into surgery, aggressive chemotherapy and then radiation to treat oral cancer, effectively destroying the last year of his life. He wasted away, unable to eat or swallow without pain, along with all the other side effects of chemo/rad. No one ever gave him the choice of not “fighting.” It was a crying shame. Literally. — Betsy J. Miller, Seattle
A. Older cancer patients experience many of the same challenges as younger ones but they may have different perceptions about time left to live and how much they want to undertake to extend their time. A common theme is that they want honest, clear communications about treatment options and what the goals are. All patients want to make informed choices by consulting with their oncologists and other medical providers. Betsy tells a story where we wonder how many treatment options were discussed with her father and how much participation was her father allowed? Who listened to his needs and concerns or even hers? These questions are particularly important as we struggle with a new cancer diagnosis.
Q. My nephew’s wife’s brain cancer was diagnosed in November 2011. She is still alive but in a debilitated condition. It has taken a toll on my nephew. I call him and see them regularly. I listen to his rants about his children, who he thinks do not do enough for their mother or mock him for seeking care. I have gotten into arguments with him due to the sheer length of conversations we’ve had, once about religion. How should I be more careful in interacting with him? And how should I converse with his wife, my niece-in-law, who is aware of what is happening and I am sure, feeling very guilty and saddened about the burden she has become? Thank you. — Edgardo M. Oreta, Manila, Philippines
A. I admire your caring tone, Edgardo. Your presence is supportive as are your offers to help and listen. This family is very stressed and sharing time with you can ease that. Ask what you might do to distract your nephew and niece-in-law, like a ride in a car. Do they have a favorite pastime or food? Perhaps sitting quietly with your niece-in-law while your nephew leaves the house for a short time would be a help. You could discuss with them what they’d like to do or how you can help and they could pick one or two things. Being there faithfully with them and avoiding arguments is a gift you give them.
Making Friends Along the Way
Q. There’s a fine line between loving and catering to the person facing life-threatening illness. As I supported my husband through three years of cancer treatment, I found my caregiving needed to be flexible enough to cross this line many times. Grief started the minute we got the diagnosis of its incurability. My interests and needs as well as my role of “wife” were pushed to the side by the tasks and duties required of the 24/7 caregiver. Together, we tried every medical option, and extended his life by three years. Was it worth it? Yes. Though I needed more time to recover from both caregiver exhaustion and spousal grief, I have peace and few regrets. Caregiving is a sacrificial act of love. It’s often unheralded. So much of caregiving is medical and logistical nitty gritty. Most, if not all, of the focus is on the sick person. The emotional, physical and career fallout for the caregiver needs to be addressed. I took the initiative to start an informal caregivers’ group for the caregivers I met at my husband’s cancer support group. We meet monthly for lunch at nice restaurants. Now, 10 years later, we’re down to a core group of four. Three of us are now widows, and have been for some time. I don’t know what I would have done without these new friends. We have cheered one another on, first merely to survive day to day, and then to build new lives as single women. — Gowiththeflow, Stamford, Conn.
A. Thank you for this note. You are honest about the stress of family caregiving. Yet you also remind us that others will be there to offer help and support. This message is important to share.