We have all been there--one minute you're fine, and the next, you’re not. In my case, my disruption came in the form of a serious medical issue that interrupted my life completely. In this week’s posting, I want to talk about the experience that has changed me. I will also share some of the tips and resources that helped during some of my darkest times dealing with brain cancer.
Today, there are professionals such as nurse case managers and professional patient advocates with whom you can contract with privately to help you and your family navigate the complex health care system. These professionals can be a godsend for the family and the patient during a difficult and confusing time.
My husband was able to take off from work and visit with me daily, sometimes twice a day at the hospital. This was a blessing. Due to the type of chemotherapy, I was admitted to the hospital every two weeks, usually for 5 to 7 days at a time. His presence and assistance carried me through a very challenging time. He was a help to me when the nurses were busy and I needed a cup of ice or a soda. Since he was the only relative in the area, I depended on him for everything.
In order to ensure a similar type of support system, it is important to plan. Families that have other members in the same area need to make a visitation schedule to make the most of the patient’s time and to provide support to the primary caregiver. If possible, find out when the medical team visits so that someone can be there to assist in receiving updates and asking questions that clarify the course of care. Have a list of questions ready so you are prepared for the team. Another way to handle questions or problems that needs to be addressed is to ask the nurse to set up a family conference so issues can be resolved. This is a common practice in most hospitals today, so don’t be afraid to ask.