Caregiving: Getting Organized and Mobilizing Help
Keys to successful caregiving include organization, listening, flexibility, attention to detail and the ability to ask for help. In this article, we will explore how these skills can help you manage your caregiving responsibilities and tasks, while delegating responsibilities successfully to those who want to help. Using these skills will help make your caregiving experience a positive one for both yourself and your loved one.
If you are a planner, many of these skills may come naturally. Perhaps you work on planning your vacations a year in a advance, researching all your destinations, using apps on your smart phone to map out activities and sight-seeing opportunities. The same skills that help you plan your family's action-packed, memorable vacations, will aid you immensely in being a caregiver. If you aren't a planner, this is the time to build skills in organization.
Go back to your loved one's care team and ask questions about the specific care needs s/he may require based on their diagnosis and treatment. These needs vary greatly based on the severity and length of their illness and treatments. You can also ask the care team to make referrals for skilled nursing care or home therapy services to assist in the physical (medical) caregiving needs your loved one may have.
Do not forget to ask your care team about the emotional and mental health impact of the diagnosis. It is important for the caregiver to be prepared to cope with the emotional rollercoaster of an illness like cancer. Social workers can provide excellent guidance to caregivers, helping them to manage their loved one's emotional needs. Social workers can also provide supportive counseling to you and your loved one and help you manage (as a team!) any conflicts or issues that may arise during this challenging and life altering time.
Create a caregiver organizer kit. Keep all information about appointments, prescriptions, insurance information, bills, medical providers and treatments in one place, such as a binder, which can travel with you to appointments. The American Cancer Society offers a free "Personal Health Manager" to keep all information organized and together in one place. You should also include a notebook in your "kit" to jot down questions you have before, during and after appointments.
This binder can be very helpful if different people will be taking the patient to appointments, giving them instant access to all the patient's information. In addition, the oncology team appreciates a prepared caregiver at appointments; it assures all questions are answered and they can ask someone who spends a lot of time with the patient for their take on how things are going.
Use a calendar to organize all appointment dates. Many physician practices can print calendars with appointments for you. This can be especially helpful if you are seeing multiple care providers. Don't forget to mark your own "blackout" dates when you have other tasks to attend to (like your own doctor or dentist appointments). If you know ahead of time days you are not available, you also know when you may need tap into your support network for additional help. Sometimes it is helpful to record appointments (another great feature of the smart phone) to be able to listen to them later. Be sure to ask the care team if they are comfortable with you recording the interaction so that you can listen to it again and make sure you understand all the information that is provided in the appointment.
Communication & Flexibility
Don't forget to engage your loved one in conversations about their caregiving needs. Remember that they are also losing aspects of their independence. This can be very troubling for individuals who have never had to rely on others for assistance. It is always a challenge to accept the need for assistance and then to ask for it. This is true for both the patient and the caregiver. Communicating about needs with each other is a key component to a successful caregiving relationship.
Accept that things in this caregiving relationship will be beyond your control. Appointments will be changed or cancelled. Treatment plans will be altered. Side effects may impact your loved ones quality of life. Flexibility in coping with these changes is of utmost importance. Work with the care team to be as proactive in preparing for these "hiccups" as you can be.
Call On Your Team
You cannot and should not do this on your own. This is where your caregiving team comes into play. Likely many people have already said to you, "what can I do to help?". Instead of saying, "nothing, I'm fine," keep a list (in your caregiver kit) of tasks with which you need assistance. For example, "mom needs a ride to radiation on these dates," or "I have a dinner date on Monday, could you come prepare dinner for dad?" This way you are prepared with a specific list and know exactly what you need to fill in gaps and maintain your own life and needs.
You can also use websites like Lots a Helping Hands, which provides online tools to help you manage caregiving needs. Another great online tool is Sign Up Genius, which enables you to build a customized sign up for anything you may need- from meals to housecleaning to a respite care schedule. Several websites (MyLifeline, Navigating Cancer) allow you to build a page that provides updates on the patient's condition to friends and family, as well as creating a needs calendar and other helpful tools. Most people who are anxious to help you will appreciate being given a specific task to complete and will feel their own satisfaction in being able to help.
Remember the adage, "it takes a village?" Successful caregiving requires a group of people to support the primary caregiver. Use your networks, neighbors, church groups, friends and family to help you flourish as a caregiver. This village will also help your loved one cope with their own illness and treatment and feel the love of a caring community.