By Christine McLaren and Funmi Adewale
Published: Oct 6, 2010 4:01 pm
This article is the third 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 explains the tolls of being a caregiver.
When Nan Manzo’s husband Dom was diagnosed with multiple myeloma in 2008, their family doctor shared some advice about how to deal with the ups and downs of dealing with cancer. “Ants will show up at this picnic. Just brush them off, and keep focused.”
“I can’t begin to tell you how many times we laughed about the ants,” said Nan. “They certainly did show up – repeatedly!”
Many people find that humor can help ease the stress and worry associated with a cancer diagnosis, but caring for someone with multiple myeloma can certainly take an emotional and physical toll.
As your loved one battles cancer, you may experience a range of emotions such as anger, worry, fear, guilt, resentment, and grief. Under the constant stress of supporting your loved one, it is not uncommon to find yourself mentally and physically exhausted.
However, understanding the stress and emotions you are experiencing can help you cope with them.
When Lori and Dave Puente found out that Dave had multiple myeloma in 2008, Lori quit her job to be his caregiver. She handled his treatment, the payment of medical bills, and communication with insurance providers. “It took a big hit on our finances even though we had insurance,” Lori said.
Chronic illnesses, such as multiple myeloma, can have a significant impact on a family’s finances. People with myeloma may be unable to work as consistently as they had before, and caregivers may leave their jobs to devote their time to caring for their loved one. At the same time, their bills grow due to hospital and treatment expenses. In many cases, it is the caregiver’s job to handle the payment of bills, insurance coverage, and resources that will ease the financial burden.
A study presented at the American Society of Hematology’s 2009 meeting evaluated the financial burden of different myeloma treatment options on patients and their caregivers. Out-of-pocket expenses were calculated to be at least $3,000 annually.
Luckily, aid is available in the forms of health insurance, pharmaceutical reimbursement programs, and other services. Consult with your insurance provider to determine what they cover. If your loved one receives coverage from Medicare, you can receive free one-on-one assistance and advice from the State Health Insurance Assistance Program or from the Medicare Rights Center.
Beyond health insurance, a number of pharmaceutical companies offer reimbursement programs. These include Celgene, the manufacturer of Revlimid (lenalidomide) and thalidomide (Thalomid), and Millennium, the manufacturer of Velcade (bortezomib). For a list of pharmaceutical reimbursement programs, visit the Beacon’s Drug Reimbursement Information links. A number of nonprofit organizations also offer reimbursement. For a list of nonprofit financial assistance programs, visit the Multiple Myeloma Research Foundation website.
Many chemotherapy agents and steroids are no longer patented, and generic versions are available at a fraction of a cost of the branded version. Ask a doctor if a less expensive generic option is available.
Participating in a clinical trial may be another way to reduce the financial burden of treatment and a way to be involved in the process of bettering myeloma treatment for the future. Ask your doctor or visit the Beacon’s list of Clinical Trials links.
Certain non-treatment expenses, such as home care assistance and medical supplies, may also be covered by Medicare or other insurance companies. Be sure to check with your insurance provider.
Mental Health Effects
Watching someone struggle with myeloma can be a very emotional and difficult time for a caregiver. Caregivers usually experience high levels of stress, and according to the Family Caregiver Alliance, between 40 to 70 percent of caregivers have symptoms of depression. These symptoms include changes in eating and sleeping habits, fatigue, loss of interest in people or activities, and ongoing physical symptoms that do not respond to treatment.
While it is natural to feel sad and anxious, if you think your symptoms are more severe, you should consult a doctor. It is important to treat depression properly so you are in the best condition possible to help your loved one.
Although Nan did not suffer from depression, she knew the devastating effects her sadness could have on Dom: “I tried to keep my chin up in his presence, but there were many times that I would cry. I tried to never let him see that. I always tried to remain completely positive.”
In addition to suffering from symptoms of depression, feelings of grief (the process of reacting to loss) are also normal. As a caregiver, you have been involved in all aspects of life with myeloma, so your grief may come and go with each loss and success. You may grieve more as the disease progresses.
Another type of grief – anticipatory grief – may also occur as the disease progresses. This is experienced when caregivers await and anticipate future grief. Grieving is a natural coping mechanism, but do not forget that there is still time to enjoy with your loved one.
Grief will vary from person to person. Bereavement (a state of sadness, grief, and mourning after the loss of someone you care about) may include physical as well as emotional pain. Each person will experience this pain for a different length of time. Some mourn for an extended period of time, others work through the grief process as their loved one’s health declines, and although others mourn, they may also feel a sense of relief that their loved one is no longer suffering.
Some people deal with grief by connecting with family and friends, by reaching out to other caregivers who have dealt with loss, or simply by working through things on their own.
Regardless of your coping strategy, help is available. Ask for advice from your doctor, family, friends, and a support group.
Coping With Lost Responsibility
Of course, the hope is that your loved one will respond favorably to treatment for their myeloma and ultimately be able to resume life as it was before their cancer diagnosis.
If your loved one responds to treatment and as their condition improves, he or she may want to have a more active role in their health care and retake control of some tasks that they passed to you soon after their diagnosis and during their treatment.
Despite being happy about your loved one’s improved condition, it can be difficult coping with the loss of responsibility as your loved one becomes less dependent on you.
Dave and Lori were lucky enough to learn that Dave responded well to multiple myeloma treatment and is in complete remission. As Dave regained strength, he started making his own decisions about his medicine and treatments, things Lori normally had done as his caregiver.
After Dave expressed his desire to take over, Lori found herself feeling lost and not needed. Over the course of a few months, Lori adapted to a new routine by reconnecting with childhood friends in California, visiting her children on the East coast, and thinking about working again. “Now I’m feeling a little bit more ready to go out and look for a job,” she said. “I feel really good now, but it took awhile. It took me months.”
At the same time, your loved one may experience feelings of abandonment if the switch from caregiver to companion is abrupt. Lori advised letting your loved one make their own decisions while continuing to offer support. “Make sure they don’t feel abandoned,” she said.
With Dave back at work, Lori makes sure that she is always available to help Dave when he asks. “It’s a delicate balance,” she said.
But Dave and Lori are thankful for Dave’s remission and that they can now move forward with their lives. “Since he’s being so closely monitored, we can put [myeloma] out of our minds and live our lives,” said Lori. “If it comes back, [the doctors] will tell us, and we’ll deal with it. If it’s not there, we’re not going to sit around worrying about it.”
For more information about caring for someone with multiple myeloma, please see Part 1 and Part 2 of this series.