One of the most important parts of a patient's care team is their caregiver. Taking on the role of a caregiver is a big commitment and is most often a member of the patient's family. A caregiver is an emotional supporter, an advocate, and a physical caretaker. In this article, we are going to talk about the role caregivers play in their patients' care team and how to manage the stress that can often accompany the role of a long term caregiver.
Before jumping into the role of a caregiver, it may be helpful to understand what is going on in your body when you hear the diagnosis for your loved one. Hearing the diagnosis will often trigger a physiological reaction of your (and likely your loved ones) sympathetic nervous system. This is the part of your body that controls the fight or flight response. When presented with some kind of life changing, or potentially dangerous situation, your brain sends out a distress signal activating your sympathetic nervous system which sends extra epinephrine (also referred to as adrenaline) throughout your body to enable you to escape the perceived threat to your body's “normal” resting 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.
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.
Research has shown that there are a couple of easy things we can do to try to activate the parasympathetic nervous system:
1. 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 the body 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. This is scary, but right now I am okay and I am safe”. Say whatever feels authentic and helps your brain deploy that parachute.
2. 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, I can feel the adrenaline, and I can’t breathe normally. This is just my body trying to protect me. But I am safe right now and I can calm down” 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 a patient, 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.
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 when interacting with others. 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.
If you find yourself leaving appointments and realizing you forgot half of the questions you wanted to ask or concerns you and your loved one wanted to bring up, consider keeping a notebook close by between appointments to write down anything you want to bring up at your next visit so nothing is forgotten and pushed out to the next time you see your doctor or a member of your care team. This can serve as a way to remember what you wanted to ask and also give you a space to write down answers as the doctor explains things to you and your loved one.
As your loved one begins treatments and taking medications to treat 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 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.
Allow others to help. It is not a show of weakness to acknowledge that you have a lot on your plate and need help sometimes.
Holding onto the emotions of you and your loved one can be too much at times. Find a trusted person (friend, family member, support group, therapist) you can talk to when you need an outlet to process your feelings and thoughts.
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 as the HealthTree for MDS Commnity Manager in 2022. She is passionate about giving power to patients through knowledge and health education. In her spare time, Mary loves attending concerts, spoiling her nieces and nephews, and experimenting in the kitchen.