As a caregiver to an anal cancer thriver, it is important to remember that your own personal state of mind and wellbeing impacts heavily on the quality of care you are able to give. Taking care of yourself is just as important as taking care of your loved one. This is especially true during treatment and recovery periods when your thriver may become increasingly dependent on you.
Depending on what your loved one needs, you may be required to provide everything from emotional support to assistance with medical care and finances. The responsibilities of being a caregiver are complex and can feel overwhelming at times. One minute you may feel loved and fulfilled through your work, and the next you may be frustrated, angry and scared. These are all perfectly normal reactions and you should not feel guilt or shame for experiencing any of them. You are a caregiver but you are also part of a relationship and like all relationships this one will require patience, understanding and acceptance.
Keep careful records of your loved one’s medication, doctors' appointments and side effects. When accompanying your loved one to doctors’ appointments, have a list of questions prepared and be sure to take detailed notes on the answers and any other information received. This will help make healthcare appointments more efficient and beneficial.
Remember that you are part of a team
You are not the only one in this fight! Every caregiver is part of a larger team of family, medical professionals and other volunteers. Each member of this team will bring different skills to your loved one’s care in order to achieve the same, shared goal. Allow yourself to lean on other members of your team for support, and remember to let them lean on you too when they may need it. The team includes the thriver him or herself. Ensure that the thriver plays a central role in all decisions and discussions as much as is possible, in order to allow them a sense of control over their healthcare.
Make a list of tasks
Make sure to write down all things that need to be done for your loved one. This will help you stay organized as well as allow you to spread out tasks to other members of the caretaking team, such as family and volunteers.
Do your homework
Find out as much as you can about your loved one’s cancer, stage, treatment, side effects etc. This will allow you to ask the most effective questions of the medical team and help you be an advocate for the thriver and their needs.
This means thinking through as many possible scenarios as you can and creating a plan for emergencies. Create schedules for every member of the team, listing who is available for what tasks, and when. Make sure that every member of the team has time to be away without feeling guilty or concerned, including yourself. These plans and schedules will help you feel more secure and operate more efficiently in times of uncertainty.
Try to stay positive
This may be easier said than done but maintaining a positive attitude is for the benefit of both you and your loved one. You may not have control over everything that happens but you can certainly control your outlook and how you react. Be sure to make use of support resources around you to help you cope and maintain a positive outlook.
Knowing your own strengths and limitations as a caregiver will only help your loved one, as well as yourself. Set boundaries for what you are, and are not, able to help with, in order to recognize when you should turn elsewhere for assistance. Setting boundaries can also help your loved one as it avoids over-dependence on you and allows them to exercise some independence. The best caregivers recognize when they need a break, in order to refresh themselves and continue to provide the best care possible when they return.
Keeping the lines of communication open and doing everything you can to obtain accurate information can make a huge difference in the quality of your loved one’s care. Remember to accept the limitations of an individual who is going through treatment. They may not necessarily be able to notice and thank you for all the things you do for them. Also, be aware that tasks may change as the person’s condition changes, and so remaining flexible and open is key. Be sure to include your loved one in fun and meaningful activities too, where they are able. It is important for them to stay connected to the world outside of their illness and you too will reap the benefits their of their enjoyment.
"BE PROUD OF WHAT YOU ARE DOING"
Watch our co-founder, Justine Almada's ode to caregivers:
We are proud to offer the community our one of a kind Peer to Peer Support Program. The Peer to Peer Support Program is a free service provided by the Anal Cancer Foundation that matches anal cancer thrivers (our word for survivors) and caregivers with thriver volunteers and caregiver volunteers.