Being A Mesothelioma Caregiver
Caregiving is an important job that can make a difference in your loved one’s fight against mesothelioma. Learning how to balance your life with the needs of your loved one is the key to doing your best as a caregiver.
With all the treatments, tests, and uncertainty, mesothelioma is a difficult diagnosis for anyone, including caregivers. It can be taxing to be a caregiver, the primary source of support for your loved one during their time of need. Learn how to take care of yourself while you manage the health of your loved one.
Responsibilities of a Caregiver
A caregiver is a person who looks after a loved one and provides them with support in a time of need. Caregivers are most often spouses, but may also be a partner, family member, or even a close friend.
An estimated 44 million adult Americans are unpaid caregivers.
You may feel overwhelmed by the thought of being your loved one’s main caregiver, especially if you don’t have a healthcare background or any caregiving experience. Fortunately, neither is needed. Think of yourself as part of a team including doctor and nurses, every member of which is working to take care of your loved one.
As a caregiver, your responsibilities will likely include:
- Helping feed, bathe, and dress your loved one.
- Making sure he or she eats and gets rest.
- Cooking and preparing food.
- Keeping track of and giving medication.
- Driving your loved one to and from appointments.
- Handling insurance issues.
- Talking to doctors and other medical professionals about the patient’s treatment and progress.
- Help your loved one live as normal a life as possible.
The requirements of caregiving go beyond a set of actions or tasks. Caregiving involves significant emotional requirements, some of which include:
- Listening to your loved one and understanding what he or she needs.
- Dealing with uncomfortable feelings, both yours and the your loved one’s. These might include anger, sadness, frustration, and confusion.
- Balancing your needs with those of your loved one.
- Coping with personal stress, anxiety, and depression.
Preparing to Give Care
Questions to Ask Yourself
You should assess your current situation before you begin your role as a caregiver for your loved one. This will help you determine if you can act as the primary caregiver or if you’ll need to share the responsibilities with family, friends, or paid help. Answering the following questions will help you measure your level of preparedness.
What are my physical capabilities?
Caring for your loved one may mean helping him or her out of bed and in and out of the car. If you’re struggling with your own health problems or are not physically strong enough to help lift, support, or move another adult, you may want to reconsider being a primary caregiver.
Can I commit enough time and effort to caregiving?
If you’re overworked or experiencing a lot of stress, caregiving may not be right for you. Make sure your personal schedule allows for the time it takes to care for your loved one. Even if you can’t dedicate enough time to be a primary caregiver, every little bit of time helps. Helping out here and there is perfectly acceptable and your loved one will appreciate it just as much.
Who can I lean on for support?
Caregivers need support as well and often perform their duties better when they have it. If you need help during the process, turn to your family and friends for support. Neighbors, fellow church members, and people you meet in support groups can lend a helping hand when you need it the most.
Planning for Caregiving
Meet with Your Loved One’s Doctor
Your loved one’s doctor should give you all the information you need to provide the best care throughout the treatment process. When you meet with the doctor, be sure to ask specific questions about the recovery process and what you can do to make it easier for your loved one.
Your loved one will most likely collect numerous medical and legal documents throughout the treatment process. Managing this paperwork may become your responsibility as a caregiver. Keeping these documents organized will make it easier to deal with medical and legal professionals as time goes on.
Discuss Power of Attorney and End-of-life-issues
Your loved one may also grant you power of attorney privileges, which allow you to make decisions regarding their finances, property, or even treatment on their behalf.
You may also need to talk to your loved one about end-of-life issues; for example, whether he or she would want to be taken off life support.
It’s important to have these conversations early on. Power-of-attorney requires written authorization and legal assistance can be helpful.
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Best Practices for Caregiving
Taking care of yourself while you take care of your loved one is important. Good caregivers know how to balance their emotional and physical health with their caregiving duties.
Many studies show that caregivers are especially susceptible to depression, anxiety, and stress. Some may even experience a decline in physical health. According to a 2012 AARP study, 17 percent of caregivers reported experiencing a downturn in their own health as a result of their caregiving duties.
You can avoid feeling physically and emotionally affected by your duties by acknowledging what you’re feeling, both good and bad. Whether it’s anxiety, anger, guilt, or grief, let yourself experience it without getting wrapped up in what you “should” or “shouldn’t” be feeling.
Remember to lean on your family, friends and loved ones for support, and don’t forget to ask them for help when you need it.
Best practices for caregivers include:
- Asking others for help
- Letting your loved one be as independent as possible
- Doing nice things for yourself
- Listening and communicating with your loved one
Resources for Caregivers
You’re not alone in your desire to care for your loved one. Countless others have also made the decision to set aside their own personal time to help their loved ones when they need it the most. As a caregiver, you have several resources that you can turn to and people who understand what you’re going through. For support options beyond friends and family, consider contacting support groups and foundations.
Mesothelioma Support Groups
Ask your doctor about local in-person mesothelioma support groups. Because mesothelioma is rare, your options might be limited. If you’re interested in in-person support, attending a general cancer support group might be an alternative.
You also have numerous online support options for connecting with others affected by mesothelioma:
An email support group run by the Association of Cancer Online Resources with discussions about new research, clinical trials, and current treatment practices. Subscribe to the listserv at listserv.acor.org.
A supportive community of people of mesothelioma patients and their loved ones. Website: www.dailystrength.org/c/Mesothelioma/support-group
Many groups maintain Facebook pages for mesothelioma patients and their loved ones. For example, the Meso Foundation, a nonprofit organization that funds mesothelioma research, runs several Facebook support groups.
- Mesothelioma Survivors and Caregivers
- Mesothelioma Caregiver Conversations
- Mesothelioma Loss Support
Head over to their Facebook page to access these support groups.
International Mesothelioma Interest Group (IMIG)
IMIG is an independent group of scientists focused on understanding, curing, and preventing mesothelioma. The team provides help for patients and their caregivers, and can be found online at www.imig.org.