Published: Oct 1, 2010 1:12 pm
This article is the second in a three-part series about caring for a loved one with multiple myeloma. The first article provides an introduction to caring for a cancer patient as well as resources for caregivers. The second article provides practical tips for caregivers, and the third article will explain the tolls of being a caregiver.
When Lori Puente’s husband Dave was diagnosed with multiple myeloma in 2008, she decided that she would need to take time off from work and her activities in order to give Dave the best care possible. “It was a full-time job with a lot of down time,” she told the Beacon in a phone interview. “Dave would be up at 2 a.m. hungry, and then asleep from 10 a.m. until noon. Whatever his schedule was, my schedule was. It required major adjustments and flexibility.”
For many caregivers, taking time off from work is not feasible. Balancing work and other responsibilities with caregiving is no easy task, so the Beacon has provided practical tips to help busy caregivers manage their time, communicate with health care and health insurance professionals, and prepare for emergency situations.
Making Yourself A Priority
In order to fully perform your responsibilities as a caregiver, you must keep your body and mind healthy. While it may seem that the only option is to devote all your time and energy to combating myeloma, you must focus on yourself as well so that your loved one can continue to rely on you.
Balancing doctor appointments, treatment regimens, and household responsibilities on top of a full-time job may be overwhelming. Caregivers often take time off from work to focus on the patient’s needs. Dianna Allred was able to take nine and a half months off from work to care for her husband, Mark.
While taking time off from work may allow you to spend more time with your loved one, without a job, the illness may completely engulf all aspects of your life. It is important that you monitor your own health by visiting your doctor for routine check-ups and watching for stress-related symptoms.
Symptoms of stress include headaches, back or chest pain, high blood pressure or heart disease, upset stomach, difficulty sleeping, anxiety, depression, irritability, lack of focus, over- or under-eating, or increased smoking or drinking. These stress-related symptoms can make it difficult to concentrate and can make your body susceptible to viruses such as the common cold.
Other ways to stay healthy include eating a balanced diet; exercising for at least 30 minutes a day, four times a week; and striving to sleep eight hours a night. Nan Manzo tries to walk outside to stay healthy, so that she can take care of her husband Dom.
Taking breaks to walk outside, watching a few minutes of television, reading, or indulging in a hobby are useful ways to increase energy and concentration. Little breaks will help you clear your mind and refocus your energy on caring for your loved one. “I took up knitting, which I hadn’t done in years,” said Lori.
With its positive mental and physical aspects, yoga may be a valuable activity to adopt. It is said to improve balance and coordination, reduce stress, and improve concentration. Students of yoga are encouraged to be completely conscious of and love themselves in order to make challenging decisions and to help others. More information about yoga for caregivers can be found at the following sites: Empowering Caregivers and Yoga For Caregivers.
Delegating The Responsibility
Although many caregivers take on caregiving as their full time job, it does not need to be a job for just one person. If another family member or friend offers their assistance, accept it. Sometimes friends and family members may want to help, but may not offer because they are unsure of how to ask and how they can contribute. Have a one-on-one conversation with anyone you think may want to help to let them know what they could do; having a list of specific tasks is particularly helpful.
Delegate responsibility. For instance, as the primary caregiver, you can schedule and attend doctor appointments, research the disease and treatment options, and remind your loved one when to take their medications; Arrange for an assistant caregiver who takes care of the grocery shopping, laundry, house cleaning, lawn care, and other chores around the home.
When you allow and encourage others to help, everyone benefits. Most importantly, the practical and emotional support of others can help you feel less overwhelmed.
Another way to share the responsibility of caregiving is to hire help. At-home nurses or respite helpers can offer the valuable extra set of hands necessary for you to balance the many responsibilities in your life. However, finding a reliable person who gets along with you and your loved one can be difficult. Fortunately, there are many agencies that specialize in locating at-home nurses and aides. “If you’re not happy with the person, ask for someone else,” advised Dianna.
Find out how your loved one feels about receiving care from a hired aide, and ask friends or members of a local support group for references.
Communicating With Health Care Professionals
From diagnosis to treatment and follow-up, hospital visits become a routine part of life for people living with multiple myeloma. Interacting with hospital personnel can be intimidating, confusing, and exhausting. At times, myeloma patients may be too distracted by worry or fear to take control of the situation. Your role as caregiver includes advocating on behalf of the patient by coming to appointments, asking questions, and speaking up for them.
“One of the most important things a caregiver needs to realize is that they need to empower the patient as much as the patient wants to be empowered,” said Lori. During Dave’s treatment, Lori handled everything: filling prescriptions, contacting insurance companies, talking with health care providers, and more. She verified her actions with Dave at each step to ensure he was comfortable with her decisions.
To guarantee the best medical care, you should keep doctors and nurses informed and up to date on your loved one’s condition. Come prepared with lists of the patient’s allergies, recent side effects, and current medications, including dosages. If you are visiting a hospital or doctor for the first time, bring copies of your loved one’s medical history, including previous test records and results to help facilitate the administrative process. Feel free to ask the staff at your regular hospital for copies if you do not have these records.
If you have specific questions for the oncologist, write them down and prioritize them. Nan has found this strategy to be very useful when she goes to doctor appointments with her husband. “I go in with a list and take notes” she said.
If the doctor says something confusing or unclear, make sure to ask for clarification. One way to make sure you understand everything correctly is to state what you think the doctor said in your own words and see if he or she has anything to add. You can also ask for permission to use a recording device.
When the doctor finishes speaking, let him or her know that you have questions and begin with your most important concern. If the doctor does not have time to answer all of your questions, you can ask other medical staff. Nurses can be a great source of information and support, since they are usually responsible for implementing the doctor’s treatment plan.
If you are unsatisfied with a physician’s medical advice, say so. The patient-doctor relationship works best as a partnership; both the patient and the caregiver’s inputs are valuable. Be courteous, yet persistent, to successfully communicate with medical personnel on behalf of your loved one.
The same principles hold true when engaging with insurance providers. Prepare for the conversation by having the patient’s birth date and insurance policy number ready. If the question is about a specific bill, have ready the name and address of the organization that sent it, the total amount, and the diagnosis code listed on the bill. Writing down the questions you would like to ask ensures that you will not forget about any important inquiries.
When the conversation begins, be sure to take down the name and telephone extension of the person with whom you are speaking in case you need to call again. Present your question or case clearly and briefly, and tell the representative what you need and expect. Taking notes as they respond may be helpful. Dealing with health insurance providers is often complicated and time-consuming, so be patient, considerate, and assertive.
Multiple myeloma can cause a number of serious health complications such as kidney failure, bone fractures, reduced blood cell counts, and an increased susceptibility to infections. As a result, caregivers should be prepared to deal with emergency situations that require them to act quickly and confidently.
Dianna experienced such a situation after Mark’s second stem cell transplant. “I left [home], and I had only been gone for an hour. When I left he was fine,” she described. “When I got back, he was burning up with a fever. That’s how quickly it can come on.”
The first step is recognizing an emergency. For cancer patients, something as simple as a fever can warrant a trip to the emergency room. Dianna knew the warning signs of a serious problem, thanks to a booklet and a short educational class provided by her clinic. Ask your health care team if they offer any informational publications and classes.
The more information you can bring with you to the emergency room, the better. Be prepared with the same documents you would carry along to a normal doctor appointment: your loved one’s medical history and records and a list of their allergies and medications. Also include the contact information for your primary oncologist and treatment center. These documents contain sensitive information, so keep them in a private, yet accessible, location, such as a lockable drawer.
Another written document to consider bringing is a durable power of attorney. This gives you or whoever is designated the legal authority to make decisions on behalf of the patient in the event that the patient is no longer able to do so. A durable power of attorney form can be obtained at the hospital, from an attorney, or at a state attorney general’s office. Copies of the completed document should be provided to hospital personnel. If you or your loved one is unsure whether this is essential, speak to your doctor or lawyer. It is best to discuss and prepare for every situation beforehand in the event that a crisis occurs.
If you believe your loved one requires immediate medical attention, call 911. Upon arriving at the hospital, find out who the attending physician will be and collect his or her contact information. Make sure you understand what the doctors and nurses are proposing before making a decision. You can use some of the strategies presented above for talking with health care professionals, such as repeating what the doctor or nurse said in your own words.
Your loved one will probably be assigned a hospital social worker or case manager. When possible, sit down with this person and plan for your loved one’s discharge from the hospital. Be proactive about getting information from the physicians, nurses, and other personnel involved in your case.
Another thing to remember is that all situations are best dealt with calmly, and it is important to always keep the interests of your loved one in mind. Emphasizing the need for good communication between caregivers and patients, Lori said, “Everything I do with [Dave’s care], I have to keep in mind who he is.”