A Caregiver's Story

The following life story is that of Judith Stein, whose husband was diagnosed with pancreatic cancer in 1996. Surviving for over 10 years is not typical for patients with this type of cancer. (The 5-year survival rate for patients with pancreatic cancer in the United States is 4%.) Judith's remarks reflect her own opinions and experience as a caregiver and are not intended to endorse the use of any particular treatment or product.

Judith Stein's Story
My name is Judith Stein, and I would like to tell you about an aspect of cancer that is seldom addressed. This aspect involves husbands, wives, mothers, fathers, children, extended family, and friends of the cancer patient. These are the people who take care of all of the daily, practical aspects of cancer. Their responsibilities, if they are all lucky, can continue for a long time.

When cancer touches one person, it touches all of those around that person.

When cancer touches one person, it touches all of those around that person. It does not discriminate against anyone, based on gender or age. It is not unlike a journey to a foreign land, filled with both hope and fear. I would like to help you though this journey by sharing some of the experiences that I have encountered and some of the things I have done and continue to do. I hope this will make your journey at least a little less frightening.

The Beginning of Our Journey
In October of 1996, my husband started to experience severe back pain, nausea, and loss of weight and appetite, along with other symptoms. He, of course, had excuses for all of these maladies. It was business pressures, the flu, or he just needed to lose weight, and look at what a great job he was doing! I kept urging him to go to the doctor, but he simply ignored me. Finally, the symptoms became so debilitating and my insistence so constant that he had no other choice but to go to the doctor. After several tests, the doctor ordered a CT scan.

As with many journeys, it is sometimes necessary to learn a new language. The information obtained by the CT scan led our doctor to refer us to an oncologist, who told us that in all probability, my husband had pancreatic cancer. The doctor went on to tell us that we would only know with certainty after my husband had had surgery.

This was the next step in our journey. We had never known anyone while they had cancer and we didn't even know where the pancreas was located. We had no medical background, didn't know what the words he was saying meant, and even if we had known, we were so overwhelmed that we only heard every fourth word. My brain went numb. There must be a mistake — surely he was speaking about someone else.

Luckily, we had the presence of mind to bring a tape recorder with us, so that we could listen to exactly what the doctor had said in the comfort of our own home after the initial shock had worn off, or at least lessened. The shock never completely wears off and your life, in addition to the patient's, is never again the same. We continued to record our conversations with the doctor through many of the early visits. Later, we jotted down questions in between visits and got the answers during our ongoing appointments with the doctor.

Following surgery the surgeon came out much sooner then I had expected and asked to speak to me. He sympathetically told me that my husband had stage IV pancreatic cancer, with metastasis to the spleen and kidney. There was nothing more that he could do. There he was, speaking that foreign language, stage IV — the most advanced — metastasis — it had spread. Not what I wanted to hear.

My Role as a Caregiver
After a few days, it was time to return home and make plans for our different life, as well as my new role. While I have had many occupations in my life, I now had a new one. This came with a title and proved to be a job for which I had no background, no education, and therefore no previous qualifications. My new title, I learned from others, was and is "caregiver." The hours would be 24/7, and the job would be taking care of my husband. No one asked if I wanted the job, and all of the medical professionals I met simply addressed me as, "Oh, you're the caregiver." Take your husband here, give him this medicine, make sure he shows up for this test and that, bring him to chemo and all the other procedures that were still alien to me and in that foreign language. There I was, once again without a translator.

As I said before, and if you remember nothing else from this story, please remember there is no right or wrong way to perform this job. Well-meaning family and friends may tell you otherwise, but as the saying goes, they can't judge you until they walk a mile in your shoes. While you want to do whatever you can for your loved one, you can't forget about yourself. If you want to help in the fight against cancer, you must be aware of your strengths and honor your weaknesses. You will have more strength than you ever thought possible, and any weakness just shows that you're human.

My New Responsibilities
Suddenly many of the responsibilities of our everyday life surrounding running our home and business fell to me. Additionally, my new caregiver job meant taking my husband to different doctors' appointments for the many different procedures, picking up numerous prescriptions, helping him to maintain a positive attitude as well as maintaining my own, along with all of the other basic activities involved in caring for someone with a catastrophic illness.

Now it was time for me to get even more proactive. Enough of feeling sorry for myself and having people look at me with pity. I wasn't sure what to do, but I knew I had to do something. The first thing I did was to download everything that I could find about pancreatic cancer from the Internet. Learn the language and what you are dealing with. If you are not computer-literate, or if you don't have access to one, this can be another job for the people who are supporting you. Ask them to get this information for you.

Our Wonderful Support Network
Although I had lots of responsibility as a caregiver, I also had help from a lot of people. If it takes a village to raise a child, it definitely takes one to help someone with cancer. I needed help, but didn't want to be a burden to our friends and family. We have lost some friends along the way, and after all, there are some people who just can't handle dealing with cancer, but the genuine love and caring of those people who did stay in our life was incredible.

I believe cancer needs to be brought out into the light of day.

I think many people isolate themselves in this situation and buy into the old beliefs that "cancer" is a dirty word. They sometimes think that they should be ashamed of having the disease or not burden others with their plight. I believe cancer needs to be brought out into the light of day. If you say the word out loud instead of in hushed voices, it may make it just a little less terrifying. There really are lots of people who want to help, and if you choose them carefully, they can be an incredible source of support to you as the caregiver, as well as to the patient. There are also professional therapists who can help you work through your fears and emotions. Don't overlook this valuable resource.

Here are a few of the thoughtful things that our friends did for us. One day, our doorbell rang, and a friend of ours brought a wheelbarrow of firewood. This same friend and his wife sent us a week's worth of pre-prepared meals. What a luxury — a whole week without having to think about what to make to eat. Other friends sent us tapes and books or helped to do research when I couldn't bear to look at any more information. They were there to talk to, to give me encouragement and support. You never realize how lucky you are to have these people in your life until you have to deal with a crisis. So when people ask you, "What can I do?" tell them. Ask them to go to the grocery store, pick up a prescription, cook a meal, or anything else you need. They really do want to help, but they don't always know how unless you tell them what you need.

A good support group can be a great help with the emotional and practical aspects of the cancer journey. There is almost nothing that you can come up with that hasn't been dealt with before by someone. There really is lots of help out there for you as the caregiver, and in turn, you will have the opportunity to help others get through this.

Caring for the Caregiver — You!
Be kind to yourself. Never forget that this is very important in the struggle against the disease. It's not just the patient who has cancer. In the words of the ultimate caregiver, Mother Teresa: "I know God will not give me anything I can't handle. I just wish He didn't trust me so much."

Reproduced with permission, ©2001, The Wellness Emporium