One of the most important parts of a patient's care team is their caregiver. A caregiver can be an emotional supporter, an advocate, and a physical caretaker. Often the role of caregiver is taken on by a member of the patient's family. Understanding what being a caregiver entails, and learning strategies to manage the long-term stress that often accompanies the role of a caregiver are two of the most important things a caregiver can do to set themselves up for success in their new role.
Fight or Flight?
Your sympathetic nervous system is the part of your body that controls the fight or flight response. In the case of a cancer diagnosis, you are being presented with a new and life changing situation. To protect you, your brain sends out a distress signal activating your sympathetic nervous system. Extra adrenaline is produced and sent throughout your body to enable you to escape the perceived threat to your body's “normal” state.
In situations with quick resolution (like a jump scare at a haunted house, or realizing the shadow in the corner is just a hat on a chair), once the threat is identified and deemed no longer a threat, your parasympathetic nervous system is activated and helps your body return to its normal resting state. Think of the parasympathetic nervous system like a parachute deployed to help slow you down and land safely.
However, in situations where there is no quick resolution, like an unsettling diagnosis, your body may stay in this state of unease for an extended period of time. This consistent state of defense can be exhausting and draining. The most effective way to avoid this exhaustion from the sympathetic nervous system is to learn how to activate the parasympathetic nervous system.
Activate The Parachute
Research has shown that there are a couple of things we can do to try to activate the parasympathetic nervous system:
- Name and acknowledge the threat. Sometimes when the sympathetic nervous system is activated by words, and not a physical situation, our brains can have a hard time figuring out what the actual threat is. Without being able to identify the threat, it can’t tell when it’s okay to calm down again. Try sitting in front of a mirror or talking to another person and say the threat and some form of comforting phrase out loud. This could sound something like, “My loved one was diagnosed with MDS. I’m scared, but I'm okay. I am safe”. Say whatever feels authentic and can help your brain deploy that parachute.
- Ground yourself. A result of the sympathetic nervous system activating is a series of physical reactions: heart rate increase, shallow breathing, extra adrenaline (feeling jittery and unable to sit still and rest). These reactions can be alarming and unsettling. Sit and think about these reactions. Evolutionarily, these reactions helped our ancestors escape immediate physical threats, but aren’t as needed in modern days. Try to think through it. This could look like: “My heart is racing, and I can’t breathe normally. This is just my body trying to protect me. But I am safe right now.” It may feel silly, but repeating this either in your mind or out loud can trigger the parasympathetic nervous system and allow you to feel your defenses go down and enter back into your normal resting state.
You may feel your sympathetic nervous system activate in any number of situations and any level of frequency. Recognize when it’s happening and take measures to help your brain activate its parachute. Simply understanding where the feelings and reactions are coming from has been shown to reduce the severity of the reactions and help us to train our parasympathetic nervous system to activate faster. Taking an active role in engaging your parasympathetic nervous system can do wonders for keeping up your energy and emotional stamina in the marathon that is navigating cancer.
Getting a cancer diagnosis is not easy. It’s difficult for the person receiving the diagnosis and for those who love and care about them. As a caregiver, it may come naturally to want to be attentive and aware of the emotional toll the diagnosis takes on your loved one. They may need someone to talk through their emotions with them, time alone to process or someone to reassure them that they won’t be going through this experience alone. Listen and pay attention to what your loved one expresses they need, both verbally and non-verbally, and do your best to provide that for them.
But, it may not come naturally or easy to some. Remember, you are new to this too. It may take time to get comfortable with being an emotional support for someone dealing with the complex and intense feelings that often follow a cancer diagnosis, and that is okay. You are both learning together and the effort you put into helping will make a difference. Give yourself and your loved one time to figure out how to best communicate with each other and how to support one another.
For caregivers who are working or taking care of small children, it can be difficult to figure out how to split your time and you may feel a pull to minimize the toll that being a caregiver is taking on you. It can be hard to admit that you may need help accomplishing tasks you could complete on your own before you took on the extra role of being a caregiver. Consider these types of tasks when people offer to help and want to support you and your loved one. It may feel odd to ask someone to help with something like the dishes or vacuuming, but letting others step in and do something as small as household chores can alleviate some of the stress you feel trying to do it all, and those you allow to help will be grateful for an opportunity to do something for you.
An important part of your role as a caregiver may be attending doctors appointments with your loved one and helping to advocate for them. Doctors appointments can be overwhelming with lots of information and complicated terminology. One way you can help is asking for clarification for any terms, treatment plans, or medications you don’t understand as clearly as you’d like. Think about explaining the treatment or medication to someone not familiar with MDS when you get home. If you can’t explain it to someone else, that's a good sign you should ask for further clarification.
Sometimes, doctors use terminology that may be confusing. As experts in their field, they sometimes forget how steep the learning curve is in trying to understand the complexities of cancer and the medical field due to a diagnosis. Don’t be embarrassed or afraid to ask for clarification, they want you to understand too.
As your loved one begins treatments for their MDS, their physical capabilities will likely change and they’ll require more help from you. This can be embarrassing and/or frustrating for your loved one as they feel their independence slipping away. It may take a while for them to adjust to needing and asking for help. Be there and be supportive during this tough transition.
Loss of independence can conjure up strong feelings. Remember that sometimes their negative emotions and struggles will manifest in frustration towards you. Cancer isn’t a person they can be upset at and you may be their safe place to direct their anger at times. Realize it’s not you in the moment and then communicate with them at a later, low emotion time, to try to figure out a different outlet for their frustration. This transition is hard on both of you, and it’s okay to acknowledge that and work out a way to navigate it with them in a healthier way.
Take Care of Yourself
Take a deep breath. Being a caregiver is a big responsibility and a big show of love for the person you are caring for. It is not an easy job. You are stepping into a role that has little to no training and is often in a field you are not familiar with. Give yourself grace as you learn on the job.
It is important to do regular check-ins with yourself to make sure you are keeping your battery charged and able to help your loved one. You can’t give anything when your own battery is depleted. Ask yourself, on a scale from 1 to 10 how do I feel:
Follow up with, what are things I can do this week to increase by 1 in each of the above categories. Make increasing those numbers a priority. Keeping yourself healthy and feeling well in a holistic sense is crucial to being able to bring your best self to caring for your loved one.
Remember that your best effort is enough. As you learn and have experiences with your loved one during their journey with cancer you will grow in your abilities to support them. It's like starting any other job. At first, it feels overwhelming and like there is no way you will pick up on everything you need to know and everything you need to do. But you will, and your efforts will be an invaluable show of love and support to your loved one. You’ve got this.
about the author
Mary joined HealthTree in 2022. She works as the AML/MDS Community & Education Manager. She is passionate about giving power to patients through knowledge and health education. If she can help one patient feel more confident participating in discussions with their healthcare team and making treatment decisions, she will feel like she has succeeded. When she isn't advocating for MDS patients, she loves being an aunt, attending concerts, and experimenting with new recipes in the kitchen.