5 Things to Understand About Caregiving

Caregiving can be a daunting and lonely experience, and when you’re young, it can feel particularly scary. According to medical reports, cited by the Harvard Gazette, there is a dramatic increase in the number of people under age 50 being diagnosed with cancer. And with this frightening trend, it seems reasonable to assume that caregiving duties and responsibilities are starting for many at a younger age.

As I share in my book, in 2007, I was 33 and found myself taking care of my (now late) husband after he was diagnosed with advanced adrenal cancer. I felt extremely lonely. While my friends were planning baby showers, I was navigating a complex medical system. Certainly, no one should have to go through any type of cancer experience, and the reality was that my social circle couldn’t relate to my situational stress. I recall one well-meaning friend pressed me, asking to meet for coffee. Little did she understand that my husband was at risk of falling, and the doctor just told me not to leave him alone. When I tried to explain why I couldn’t break away, a lump of fear filled my throat.

Fear became my baseline, and it is often that of all caregivers. However, young caregivers can face some unique challenges. Here are five things to understand about them:

1. Asking questions is OK. Even though you may consider the caregiver young, they may not be able to know and remember everything. Under stress, it isn’t uncommon for them to feel like their brain is hijacked. They may have difficulty processing information, so they may ask the same questions over and over.

Although the diagnosis won’t change, the way you relate to them matters. Being gentle with your words and framing your thoughts as suggestions can be less stressful. If they perceive your thoughts as something "to do," it can create more stress.

Since confusion can create more anxiety, encourage them to get accurate information, even when they don’t like the answers. This can eliminate the guesswork. Gently remind them not to be afraid to ask the medical staff questions. If they're open to it you can help them write the questions down in advance and ask them to record the response with their phone. A recorded response can be particularly helpful so they can replay it for themselves as well as the patient.

Just remember: No question is dumb, especially those that keep them up in the middle of the night. Even asking, “Are there other options?” can ease one's mind to know that they're not ruling anything out.

Remind them that there’s no need to feel incompetent, apologize for asking anything, or feel that they're taking up time. Tell them that their loved one deserves to have all questions answered. If they’re worried about appearing “dumb,” just remember, chances are the medical staff has heard it all. And it is better to feel insecure for a few minutes and get the right answer than to beat yourself up later for not asking it.

2. Seeking emotional support is often beneficial. Since their peers may find it difficult to relate to their stress, you may sense the caregiver has disconnected from them. It is bittersweet to know that you aren’t alone. Telling them that your feelings are not only valid but “normal” can be comforting. They may also get support from people they don't know. This doesn't mean your support isn't essential; just know they may be getting support from others as well.

During my husband’s medical crisis, some of the most valuable advice came from “outsiders,” meaning the people weren’t part of my social circle or family. A stranger in the hospital saw me holding back tears, and she said, “It is OK to let it all out. You need to cry.” I never got her name, but her words resonated with me because up until that point, I tried to keep up a brave face.

Another time, a stranger in the oncology room saw the pain on my face as I pushed my husband’s wheelchair. While he was in the radiation room, the stranger offered a few words about the typical wait time. Although this information may seem insignificant, it helped ease my stress as the “15-minute" appointment turned into well over an hour.

3. Reaching out for assistance is OK. While you or others may assume the caregiver can handle it all because they are not of retirement age, caregiving is not for the faint of heart. In fact, many younger caregivers are balancing work duties along with childcare stressors. Asking if you can help with their children is often essential. You or they can explain to the children that you are a “helper.” This shows children of all ages that it is OK to seek assistance.

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As with parenting or other situations, it isn’t usual to “compare notes” with others. Sometimes, we look not only for guidance but also confirmation that we’re doing the right things. However, when it came to my caregiving situation, I wasn’t able to garner this type of support from my peers. While one must be careful to suss out inaccurate information, hearing from others about how they handle things can provide insight.

Finding an online or in-person group specific to one’s illness can lend useful information about clinical trials and second opinions. Let them know it can be helpful to hear from others about how they managed the caregiver's emotional pain. In a group, one can ask questions without having to explain the entire "situation” because there’s already an established understanding. In these groups one may learn about resources available that they didn’t know existed.

A traumatic thing has happened to this caregiver, so they may need to seek out their own mental health support. Many clinicians are doing virtual or phone calls.

4. Accepting help can be a saving grace. While the caregiver may want to appear “pulled together,” deep down, they know their fears are significant. Gently remind them that when someone offers to help, it is not a sign of weakness to accept it. For example, if your coworkers suggest starting a GoFundMe page, and you know the caregiver is sensitive about how others may perceive seeking financial help, you can simply say it is tough to anticipate all of the medical expenses and any additional costs. In other words, any help can be useful. When there is a problem, people often want to feel like they are helping in some way, and contributing to a fund can be a win-win for all people involved.

5. Listen to their story without judgment. In this age of being hyper-connected, with multiple social media channels, others may feel entitled to know every detail concerning a loved one’s health. Sharing and resharing details can be emotionally exhausting. It can also use precious time and energy. As you know, the patient's health status can change in a minute. Remember, it is OK if they choose not to respond because sometimes responding can lead to more stress. Also, it is OK to ask if you have a designated person who does updates and requests to be added to their communication list.

Anaïs Nin says, “Stories do not end,” and even in one's heartsickness, their story doesn’t end there. It is hard to imagine that they'll ever get through this, but I’ve realized that one's story as a caregiver is just as important as the one of the patient. Having someone to share your story with and who can listen without judgment can be healing. If they have no one to share it with, encourage them to write it down. The words we speak matter.

No two caregiving experiences are the same and sometimes it is necessary to live in the needs of the day simply. Give them grace. Caregivers may do something odd in that moment because so often they feel like they are in an emotional freefall.

When I started to look for the small things—the heated blanket for my husband or the stranger who paid for my coffee—it helped me to feel less alone. While you can't fix their problems, doing something small for caregivers may often be what they need to make them feel less alone.