The Invisible Burden: Unboxing the Unseen Caregiver Sacrifice and Hidden Loneliness
Loneliness is a feeling we have all had at some point in our lives. Whether it is brief or long-lasting, it differs from person to person and situation to situation. We are not only talking about the physical loneliness one can feel when no one else is around: we are discussing the internal battle. The struggle when you feel like no one hears you or understands, or when no one is paying attention to your needs. The loneliness you feel when your cup is empty and it never fills. If not addressed, that loneliness can take control, leaving you with a multitude of negative feelings or conditions: depression, anxiety, etc. Having the proper support is mandatory to keeping the loneliness at bay.
To be clear, I am not here to downplay any person or their experience with loneliness, but instead to highlight how prevalent this feeling is in the community of people with disabilities. This community faces challenges in their own homes and in society that many people don't understand. The battle in the home, where the individual is repeatedly having to push to handle the simplest of tasks, all the way to the belittlement society has for them when they step foot into a store or decide to go to dinner. It extends beyond the individual, affecting their families and caregivers as well.
The Caregiver's Role and the Unseen Demands
According to Johns Hopkins, a caregiver is the individual behind the scenes who ensures people with disabilities have what they need to be successful and are taken care of. This role can be either professional or personal, or both. Professional caregivers, such as doctors or members of a medical team, help determine the best options for a person's care. Family caregivers are the individuals who oversee the day-to-day care, ensuring everything runs smoothly and advocating for the individual. The family caregiver's sacrifice is optional, not required of them, but due to the love they have for the people in their life with a disability, they choose to sacrifice their time to make sure the other is cared for. It's often a thankless and demanding job, but love motivates them to keep going.
There is an added responsibility, as well as the need for emotional, physical, and mental strength, that one might not expect to come with caregiving. It is not simple. The responsibilities include:
scheduling
transportation to numerous appointments
administering medications
practicing basic life skills
continuing with therapies outside of the appointments.
The list is truly endless. And caregivers do all of this while trying to take care of themselves and any other people in the home. They do all of this while trying to find a way to make ends meet, working various jobs that work around their chaotic schedule. The typical 9-5 does not usually suit this lifestyle without external support from family and friends.
How could someone choose this? Why would they do this if it is just more work, more stress, and pain? That answer varies from caregiver to caregiver, but as a caregiver and mother myself, I can tell you that the choice came naturally to me. The love one has for the individual who needs you is unmatched in questioning whether taking care of them is an option. It never even occurred to me that I had a choice. It came instinctively; this is the situation; this is how we give them a chance of success, so this is what we do. No questions asked, and none were needed. Love is how family caregivers come to be: simply through love and a desire to do what is best for the person they care for. It unknowingly becomes a sacrifice of oneself. But in this sacrifice, there is also resilience, strength, and hope.
The Unconscious Sacrifice: Depletion, Misunderstandings, and the Emotional Toll
It happens over time: the sacrifice of oneself, unnoticed, as one focuses on the tasks ahead. Slowly, the caregiver starts to feel depleted and begins to question whether this is all life is going to be. The loneliness creeps in as they begin to realize they haven't seen any friends for months due to the heavy schedule load, lack of help, and inability to find anyone else they trust to care for their loved one. That is the key; we have to trust the help.
State programs often have lengthy waitlists or a poor reputation among trusted individuals. The horror stories that take place make the caregiver question the genuine helpfulness of such programs. Some families choose not to pursue state programs due to the waitlists, as there are more people needing services than the state can accommodate. Not all services are untrustworthy, I must add; however, the validity of the programs raises concerns among caregivers about whether they should seek help or attempt to do it on their own.
The practicalities of caregiving can be overwhelming, but we cannot forget the emotional challenges faced, such as loneliness. Caregivers are often overwhelmed with all the day-to-day tasks; they may not realize that their friends and family are on the back burner. Forgetting to call them and check in on them, forgetting birthdays, important dates, etc. It happens by accident the majority of the time. When they finally realize how long it's been since they last spoke to their friends or family, they choose to make the call, risking a hostile response. Their friend or family member expresses their hurt feelings and complains, instead of trying to understand the caregiver's situation as to why they didn't call. Lack of empathy is where true loneliness takes hold. The people who are supposed to be your support net, due to a lack of understanding or inability to recognize, turn away.
And so, the caregiver is left feeling alone; only those living in the home, who are also experiencing burnout and strain, are left to confide in. Sometimes it is enough, but not always. Those in the home understand, at the very least, that this is a lifelong commitment. They know that life will never be as they once dreamed it would be. They accept and adjust to new dreams, sometimes slipping away to the old dreams, wishing that it were possible. The caregiver and the family receive the permanent change, but still revel in moments of what was. These feelings need to be validated and acknowledged, not suppressed or shunned. It is, in some ways, a form of grief, a loss of one's self, as they must evolve and develop their new sense of self and learn who they are all over again.
The caregiver is selfless in their actions, always caring for others, yet we must pause to ask, who takes care of the caregiver? Who checks in to ensure they are prioritizing their well-being, receiving the necessary medical check-ups, and getting some time to decompress? There is a level of responsibility the giver must take on themselves to attempt this, but all too often, outside support is needed to make it happen. If they are limited in this, well, when does it happen? The answer is that it gets swept under the rug, forgotten until it is too late. The caregiver, unintentionally used with no one to fall back on for help, is left alone in a demanding world. The only solution is change.
Fostering Change: How We Can Support Caregivers
How does one implement this change? Where can we begin, and how can we show our support? All valid questions. Everyone's journey is unique, and support takes different forms for each person. There are several things we, as a community of people, can do to help the caregiver feel seen, heard, and not alone, mainly by focusing on the needs we all share.
Listen - The Power of Being Heard: The first step is almost too simple. We all want to feel heard, to know that we have someone to turn to. Yet, so many don't have this. We, as people, must do better not only at listening but also at truly hearing what the other person has to say. Caregivers may sometimes feel guilty that they are a burden to others due to their own heavy load. They may be reluctant to open up, fearing they will overwhelm the other person or scare them away. Make a change for them by initiating that call or stopping by to listen. Listen to understand who they are and where they are coming from. You can ask open-ended questions, ask ahead of time if they want solutions or need to vent, and offer to help in some way if you feel called to do so. The friends and family that choose to judge and be condescending instead of trying to figure out how to help, this step is especially for you. The relationship with the caregiver is already there. Don't ruin it by focusing only on surface matters.
Act - Moving Beyond Empty Promises: "Well, if you need anything, let me know". One of the most used yet unfulfilled phrases. It is in my top 10 phrases that hold no meaning to me. It is the phrase that we use when we don't know what to do to help and want an easy out. Deep down, we know that the individual we just said this to is unlikely to reach back out; we know they won't call us for help, but it makes us feel better because we can now say, "Oh, we offered to help." Instead of saying this phrase, act on it. Show up with dinner if you know the caregiver is having a stressful day. If you are uncomfortable helping the individual with disabilities, show up and let the caregiver take a hot bath or nap. They are still present in the home if needed, to help ease the pressure off of you, but it gives them a sense of relief where they can unwind and decompress for a few minutes. Show up, clean their kitchen, fold their laundry, or offer to run errands for them to take a few things off the to-do list. The takeaway is action; words mean little without action to back them up.
Become the Community - Building a Network of Support: The caregiver, thinking of others so often before themself, does not want to add any stressors to someone else, believing they could be just that. Here is where we say to the giver, "You are not a burden, we welcome you as you are", and accept them into the community. Communities are here to build one another up and help one another. As a community, they will have the support they are lacking. You can assist them in finding the appropriate care they need, whether it be respite care, new therapies, or simply finding a new grocery store. As the caregiver's new community, you can help support them where the state is lacking, due to waitlists and other issues with validity. The caregiver often lacks a social life, so organizing social outings around their chaotic schedule would truly make them feel seen. Just as you are part of the caregiver community, they are now yours as well, and what they can bring to the table is surprising. The view of a caregiver is enlightening, having experienced life in ways most do not. The caregiver adds value in any community when given the opportunity.
Loneliness is a battle no one should ever face, but it sneaks into everyone's life at some point. Having support to fall back on in these times is necessary to defeating the dangerous feeling. Not one group of people should ever feel so alone, should ever feel like there is no one to turn to. Are we doing enough to ensure that everyone has at least one person, or are we too self-absorbed to realize that even those who may seem okay are really not? I challenge you to ask yourself the following questions:
Do you know a caregiver?
When was the last time you spoke to them?
When was the last time you listened to them?
When was the last time you did something for someone else without asking or hesitation?
Do you know someone who needs a community?
Based on your answers, you may find yourself busy over the next few days. Your answers should encourage you to reach out first, to show up first, and enlighten you to take a step to let the caregiver know that they are NOT alone and you will be there for them. In return, you will find an unplanned friendship, one that models the strength they possess and expresses how they accomplish all they do.
