When your spouse or another close family member is diagnosed with mesothelioma, you take on a new role: cancer caregiver. While caregiving for someone with a serious form of cancer like mesothelioma can seem overwhelming, it can also be a rewarding way to stay close to your loved one and to be of service during his time of need.
Because of changes in the way medical care is given to cancer patients, mesothelioma patients often spend more time at home and less in the hospital. Your role as cancer caregiver is crucial. You may find yourself giving medication, changing dressings, and performing other tasks that you have never done before.
The new demands on you can be an opportunity for growth and also a drain on your energy. With preparation and support, however, you can take care of yourself while also being a supportive cancer caregiver.
Plan for Your Role as a Cancer Caregiver
It’s important to plan ahead, so you have the resources you need in place before you hit a crisis. Even if the mesothelioma patient in your life is doing well and managing most things on his own, your cancer caregiver plan will serve you well as his needs increase.
Talk with the mesothelioma patient in your life about his care plan. Ask about his needs for mental health support as well as physical. Find out what activities he likes to do and incorporate those into the plan to the extent that his energy allows.
Review your loved one’s legal documents with him. Find out if he has an up-to-date will and whether he has a power of attorney or other legal documents. If necessary, make an appointment with his lawyer, so he can put his legal affairs in order.
Make a plan for how you will handle the finances. If your loved one paid the bills, you might need to take that over. Make sure that you have all the account information. Write down the passwords you’ll need for his computer and any online accounts that you might need to access.
Make sure you understand your loved one’s insurance coverage. If insurance for your job provides coverage for your spouse, consider how you will continue coverage if you have to leave your position because of your role as cancer caregiver.
Make a list of all doctors and their contact information. Make another list of medications, including dosages and when they need to be administered. Update the medication list as your loved one’s needs change over the course of the disease. If you receive other care instructions from a doctor or hospital, add that to the vital medical paperwork that you keep handy.
Assemble a Cancer Caregiver Team
The most important thing to know about being a cancer caregiver is that you can’t do it alone. It’s not realistic to expect that you can be on call as a nurse, cook, chauffeur, and more, 24/7, without a break.
You are not a failure. No one can do that much. It’s normal to need help. You can manage the team, but you need a team.
Your next step is to pull together your cancer caregiver support network. Find out which friends and family members are willing and able to provide support. Make a list of all the tasks that others can do to help out.
Once you’ve assembled your initial cancer caregiver team, you might want to have a meeting to firm up the care plan. Make sure that everyone has copies of contact information for the doctors and current medication information.
Find out what times and what roles work for your family and friends. One person might be able to come over every Thursday afternoon and give you a break for two hours. Another might cook dinner on Tuesdays or drive your loved one to chemotherapy appointments. Anything someone else can do for you so that you can take a break or get some rest will help: mowing the lawn, walking the dog, taking the cat to the vet, or a thousand other small tasks around the house.
Make a list of who can do what, when. Share contact information among your support group.
You can extend and manage your network by using an online care calendar like Lotsa Helping Hands or Caring Bridge. You might even set up a shared Google calendar for your family to keep track of when people will come over to help.
If setting up a care calendar seems like an overwhelming task to you, don’t worry – you can ask one of the members of your support network to put that together for you and maintain it.
Caring for Your Own Needs
Once you become a cancer caregiver, it’s easy to forget that you have needs too. You may feel guilty for taking time away when your family member is so ill. But your self care is not optional. You must take care of yourself, so you can stay healthy enough to be there for your loved one.
Make a list of things that you like to do. Make sure you take time off every week to take a walk, get a haircut, have coffee with friends. It is easy to become isolated when someone is very ill at home, but your social support network is more important than ever during this time.
It’s not uncommon for cancer caregivers to experience sadness and even depression. If you find that you have a hard time getting out of bed in the morning or feel angry most of the time, seek help. If you find yourself drinking or taking too much pain medication just to get you through the day, reach out to someone. Being a cancer caregiver is hard. It’s okay to get support from a therapist or counselor.
It can be hard to take time off when you’re a cancer caregiver, but it’s vitally important. Caregivers who work without a break sometimes get sick themselves. If that happens, you won’t be able to provide care anymore.
Ask the doctor about respite care. Respite provides a temporary break for cancer caregivers. You might be able to have a respite caregiver come to your home for a few hours or a few days. Or you might place the mesothelioma patient in a nursing home for a short stay, so you can take a break. Hospice often provides respite care; insurance plans, including Medicare and Medicaid, will also sometimes pay for this care.
As the cancer caregiver, you are at the center of the mesothelioma care plan. You will gather all the information, make sure the bills get paid and the appointments are kept. You will provide comfort, companionship, and care. Make sure that support for you is part of your cancer caregiver plan as well.