The role of caregiver is one that is often overlooked. Carers may be called upon to become the solid force upon which their loved-ones can rely – making tough decisions, working hard, and carrying a heavy emotional burden often without support. In this guest post blogger Cameron Von St. James shares his experiences, and offers some tips for fellow carers.
In 2005, I became a father, a role that I was excited and proud to take on. However, I never expected to become a caregiver for my wife just a few months later. On November 21, 2005, I turned into a caregiver when we found out that my beloved wife, Heather, had cancer. Specifically, she was diagnosed with malignant pleural mesothelioma. This shocking diagnosis came when our daughter, Lily, was only three months old.
I do not know if anyone can truly be prepared for news like this. I certainly was not prepared to hear this news, and I was not prepared for the role of caregiver. One of the first things that I had to do was make life changing decisions about my wife’s medical care. The doctor gave us three options for treatment locations, and then waited for Heather to express interest in any of them. However, she was far too shocked and terrified at that point to be making any major decisions. Her eyes pleaded for help, and I knew I needed to be there for her. I told the doctor that we would seek treatment with a renowned mesothelioma specialist in Boston. I knew that if Heather had any chance of beating this disease, she’d need the best care possible.
Over the next few months, it seemed like everything descended into chaos. Heather had to leave her job, and I scaled back to part time in order to be able to care for her and Lily. In addition to working, I provided my wife and daughter with the care they needed, scheduled appointments and made travel arrangements, made sure Lily was cared for while Heather and I went to Boston – the list was endless. I quickly became overwhelmed with the responsibility, and more than once I broke down crying on the kitchen floor when my family wasn’t around. Luckily, I found out that we did not have to walk this path alone.
Heather and I were blessed to be surrounded by supportive friends, family and even strangers during our journey. It goes against my nature, but I had to learn to rely on these people for help. When I accepted the help of others, it relieved some of my heavy burden.
When people hear about our experience, they often ask me if I have any advice for other caregivers. The main thing that I tell them is that it is OK to ask for help. There is simply no way that you can do everything on your own, so do not put that burden on yourself.
I am so thankful to report that Heather is now cancer-free. Our journey through mesothelioma surgery, radiation and chemotherapy was not an easy one, but we are stronger for it. If you are caring for someone with cancer, stay strong. It is fine to have bad days once in a while, this is inevitable and even necessary, but remember that no matter what, you must never give up hope.
Cameron’s Top Tips for Carers:
- If anyone offers you help, take it. It’s one less thing for you to deal with, big or little, and it should remind you that you are loved and surrounded by people who care enough about you to help. It helps lower the stress levels too.
- Take time out for yourself. I like to remind caregivers to take time out for themselves. You’ll fell better and be able to offer better care if you do; and remember, you are human. Caregiving can be stressful, allow yourself to make mistakes or to have an off day. Spend time with friends and socialize. Keep up your hobbies – try to keep as normal as schedule as possible. Sometimes caregivers feel guilty when they take time for themselves. If you find yourself feeling guilty remind yourself that taking time for yourself today can actually help you be a better caregiver tomorrow.
- Take care of yourself. Put your health first. Make sure you are getting plenty of rest and eating properly. I found that in the short run I could substitute food for sleep. I’d eat more when I was getting less sleep. I could only do this for a few days at a time. Know your body and your limits. Some people tolerate sleep loss and stress better than others. Try to exercise daily. Even a quick walk around the block can be refreshing and help reduce stress.
- Don’t be afraid to ask for help. Ask family and friends to help when needed. Mobilize your support system and engage with the people around you. Many individuals say they would help if only they knew how. Be specific with your needs and the ways in which they can help.
- Educate yourself. Learn about the cancer and treatment options. Learn about possible side effects and ways to reduce them. Don’t be afraid to take a notebook into doctor’s appointments and ask questions. There are also excellent online resources available. You might consider joining a support group to learn more and meet other caregivers.
- Use tools to organize and manage your time. You can reduce your stress by keeping all appointments and important information neat and organized. Use a notepad or computer to help. Keep important information such as insurance forms, medical papers and medication lists easily accessible.
- Prioritize. You may find yourself with a never-ending list of things that need to get done, or paid, or otherwise, that occupies your time. Prioritize, start with tasks that have to be done sooner or are of the greatest importance and work from there. Ignore all the unimportant stuff, and again remember to call on family and friends to help with your list.
You can check out Cameron’s blog at: http://www.mesothelioma.com/blog/authors/cameron/