7 Things Everyone Should Know About Caregiving

Source: Kristin Meekhof

The true definition of the word “caregiver” can be found in its root meaning, which can be defined as “being anxious or solicitous; grieve; feel concern or interest.” It is no wonder that taking care of a loved one can feel like a confluence of these tough emotions. Although I had a graduate degree in social work, absolutely nothing prepared me for taking care of my (now late) husband after he was diagnosed with advanced cancer. In my book, A Widow’s Guide to Healing, I share that sometimes I felt like I was holding my breath for countless minutes with no end in sight, and other times, I was beyond grateful we could be together during his last days.

Caregiving is one of the few means by which we fall helplessly into our loved one’s pain, becoming their voice, swallowing their fears, soothing their sorrows, and shaping their future.

Here are seven things to know and understand about caregiving:

As caregivers, we know that the distance between the life our loved ones once lived and the one they’re living now is often so vast that only fragmented memories can bridge the gap.

1. Realize there are a million little losses happening all around you.

There are multiple losses, such as the loss of the ability to walk without assistance, the loss of the ability to dress oneself, or the loss of confidence that your loved one will be able to remember what they promised two hours later. These “losses” may seem typical to a health care professional, yet to a caregiver, they are significant and difficult to witness. These losses I refer to as “micro-losses,” and they include lacking the ability to recall the name of their favorite movie or the name of their first grandchild. To a health team, micro-losses may seem unremarkable given the medical diagnosis; however, to a patient and caregiver, these losses are significant and grief-worthy.

2. No two caregiving experiences are the same.

There are similarities among the experiences of caregivers, but each story is unique. And you may feel emotionally isolated if you are comparing your situation to that of another caregiver you know.

3. Caregiving is expensive.

An AARP study found that caregivers spend more than $7,200 on out-of-pocket costs for their loved ones, and this doesn’t include unpaid time off from work or adjusting work schedules to accommodate medical appointments.

4. You’re likely giving emotional labor.

While you may not associate the empathy you’re offering as a laborious task, it can physically and mentally drain any caregiver. In addition, depending on your situation you may also be experiencing trauma. And both the brain and body tend to process a traumatic event differently than a happy, joyful experience. Your body may feel tense, or you might find it difficult to recall a simple fact, like a date of birth. And being a witness to a sudden change in your loved one’s condition can be traumatic.

5. Know that advocacy is key.

As the primary caregiver for my (now late) husband in 2007 and for my (now late) mother during the pandemic, I know many of the things (services, tangible items, changes in medication) my loved ones received were the result of my advocacy on their behalf. Sometimes advocacy comes by way of asking questions. Write them down in advance if needed. You’re simply wanting to know if there are other options for your loved one and if they are receiving all the help that is available. There were times I worried about the opinions of what others on the health care team thought of me, and then I reminded myself that my loved one’s comfort outweighed any of my insecurities.

6. Understanding and using the proper language is key.

Since I’m not a medical professional, the learning curve was steep. However, once I mastered it, things really turned around. I was able to say things like, “Because my husband is a fall risk, he needs....” Stating it this way not only got quick results, but I noticed eyes and ears were suddenly placed on my words. When my mother needed a ramp to leave her home, and there was hesitation from a medical provider, I said, “If there’s a fire, I can’t get her down the front stairs in her wheelchair.” The ramp was approved within hours. Referencing the changes you see in your loved one’s pain or mobility can also help.

7. Caregiving secrets are not uncommon.

As a caregiver it isn’t unusual to be asked to conceal something a patient tells you. It may be a request for more pain medication or a regret about an affair. Dr. Dale G. Larson, author of The Helper’s Journey: Empathy, Compassion, and the Challenge of Caring, writes about the impact of caregiving and keeping end-of-life secrets. He says it can lead to burnout and negative health effects.

Dr. Larson also says there’s a deep reward for being a caregiver. In this book he writes, “No matter what else you do for the suffering person, it will indeed be ‘twice blessed’ if your actions are grounded in compassionate understanding and experiencing of the other and his or her communication.”