You Are The Primary Caregiver

When my husband received the phone call at 7:30 pm that night from our doctor, we were both in shock. It felt like a nightmare because it was so unreal. As the caregiver, you need to spring into action before the actual words really get a chance to sink in.

The first decision you will need to make is who to tell. This may seem insignificant but it is not. Telling the right people can help you. Cancer affects the entire family, not just the member with the cancer. And this is a time when you will need the support of everyone in your family.

Who To Tell

Family and friends cannot help you if they don't know what's happening. In my husband's case, he told his staff and his office. I told both of our families—his was far away in England, while mine was mostly close by and able to lend direct help right away. They were amazingly helpful with doctors' appointments, picking up prescriptions, picking up meals and helping with research. Family and friends can help you in many ways. Let them.

Telling Your Parents

We told both sets of parents very soon after receiving the diagnosis. We told my parents immediately since they lived close and were in a position to help us. Because my husband's parents lived in England and would need some idea as to when they should come to see us, we told them several days later when we had found a great doctor to help us. Again, telling people allows them to help and support you—something you will most certainly need.

Telling Your Children

Our son was nineteen and away at college at the time of my husband's diagnosis. This made the where and when of telling him more difficult. If we didn't tell him in the right environment, we knew the first thing he would do was Google the illness. We both understood that he would be frightened and might, in turn, do something stupid or dangerous. We also didn't want to wait too long to tell him. We were afraid he might inadvertently find out from someone else. All of this weighed heavily upon us. We decided to tell his university what was happening and to work with them to arrive at the best plan of action, which included speaking to our son on the phone when he was in the company of his advisor and a psychologist. After the call with us, he remained with the psychologist and advisor so any questions or concerns he might have could be answered. We picked him up several days later.

I'm not a psychologist. But I am a parent who believes that no matter what the age of your child, it's best to be honest. Not giving them information or lying can be damaging in the age of the computer. It doesn't take much for your child to Google pancreatic cancer. It's much better for you to answer their questions than for them to get information online. Be careful to answer only the questions they ask. Like you, they may be overwhelmed and need to take in just a little at a time. I'm also an advocate of therapy. Find someone experienced in helping children cope with serious illness. If you cannot do this because of all of the other issues you have, ask for help. The younger the child, the more important this will be.

Caring For Your Loved One

A cancer diagnosis adds to the list of hats you wear. In addition to spouse, parent, professional, and any other roles you play in your life, you take on the new role of primary caregiver. Just remember, between the appointments and research, to also be the same person the patient has loved and known.

As the Primary Caregiver, you've got two main functions:

Assistant

In this role, you will need to thoroughly understand the diagnosis and then find a doctor for treatment. You will want to attend as many doctors' appointments as possible to provide support to your partner and begin the task of managing information and care. Make sure you have in your possession copies of all of the lab and radiology work that was done to make the initial diagnosis as well as copies of the film and the pathology reports. These will most likely need to be faxed to the doctors or cancer centers you are considering. Keep a notebook and write down all of the names of the doctors and hospitals you have contacted along with the name of the person to whom you spoke and the date(s) of your conversation(s). I found it helpful to record everything in a spiral bound notebook. That way, it was less likely that I would lose important information.

Advocate

You will need to make sure you help voice your loved one's needs and sometimes go to bat for them to obtain the doctors you want, the appointments you need, and the care you expect. Among the main issues you will face are pain management, nutrition issues, and depression. In these cases, you will probably be working with specialists whom you'll want to coordinate with the patient's main medical team. Pain management is a complex arena, and you'll want to understand all the options. Nutrition is a fundamental component of treating the pancreatic cancer patient, especially if surgery is a consideration. And lastly, depression and sleep problems are conditions you'll need to watch for throughout care. You may want to speak to a mental health professional and also consider support groups for the patient, yourself, and the family and friends aiding you during this difficult time.