I Wish Someone Had Told Me

When my mom told me she had a rare form of cancer, I remember feeling a bolt of shock and fear go through my body. I didn’t realize that both of our lives had changed forever. I had worked in the healthcare industry for many years but it didn’t prepare me for the experience of being a caregiver. Early on, I made so many mistakes. I wish someone had told me what to expect.

Like me, many families and loved ones of chronically ill or terminal patients are completely blind-sided by the difficulties and the joys of caregiving. The most important thing I wish I had known is that caregiving is a marathon, not a sprint. Like most caregivers, I sprang into action, willing to do anything and everything to help my mom recover. I’m embarrassed to admit how much I believed that my mom’s well-being depended on me being some kind of crazy Energizer Bunny Super Hero.

When someone asks me about my experience taking care of my mom I often share a few things that I think are helpful to know.

1. Pace yourself. Even if the person you love is facing a terminal diagnosis, it’s possible that you may be caring for them for weeks or months. Going without sleep, skipping meals, and side-lining your personal health and personal business is likely to create more problems than it solves. Plan to get plenty of sleep, take time to eat well, get exercise and try to schedule days off.

2. Stay in the present. When you’re a caregiver, each day has its own drama. Physicians and nurses often suggest that you deal with the symptoms and the challenges in the present. I found that worrying about what might happen the following day or the following week only added stress to an already stressful environment. What my mom really needed was for me to be present for her with the symptoms and the pain happening in that specific moment.

3. Accept help from others. I often made the mistake of thinking that my mom needed me to do everything for her. I was naturally anxious about leaving her, even in the hospital, because I didn’t want to miss spending time with her. I soon realized that I was both physically and mentally exhausted. It was important for me to split the responsibilities with other family members and professional caregivers.

I also learned to let the professionals do what they are trained to do. I didn’t need to try to lift my mom out of bed or figure out how to help with her pain when there were professionals available to help. My mother had excellent insurance so I also learned to avail myself of the support offered by both the insurance companies and hospitals, such as support groups, patient navigators and home healthcare. Using these resources reduced my personal stress and allowed me to keep going over a long period of time. I also learned that if I was willing to ask them, healthcare professionals had a wealth of knowledge on how to cope with a wide range of challenges.

4. Be brave. One of the few benefits of a terminal diagnosis is that it gives patients the opportunity to take care of unfinished business and to say goodbye to loved ones. Often caregivers have a difficult time facing this reality, that someone they love is going to die. Being honest about death when it is imminent can be both practical and in certain ways joyful. It takes a great deal of bravery to accept this and be available both emotionally and practically for the patient.

As a part of my professional research, I have spoken with cancer patients about their experiences. One of the common themes is that they are afraid to talk to people they love about dying because they don’t want to scare or worry them. This results in a feeling of isolation and anxiety. When death is imminent, denial can cause a breach in your communication with your loved one when they need you most. Having the bravery to allow them to talk about death and make plans can be liberating for everyone. My mom told us that she was ready to die and then told us who she wanted to say goodbye to. She also took the time to organize her estate so that it was easy for us to move through the experience of grief without struggling with administrative challenges.

Many patients and their families resist going into hospice care because it means they are “giving up.” This comes largely from our societal resistance to death. Though this is a very personal decision, I can’t understate how helpful connecting with people who understand and experience death as a normal part of life can be. Most patients and caregivers report that they received the best support and found the hospice to be a much better situation than the hospital.

Eventually, I realized that my mom had to make her own journey through the odyssey of being a cancer patient. I was powerless to change the outcome. She didn’t need a superhero, she needed an ordinary daughter. My real job was to find a way to be there to help her on her journey. My responsibility was to make sure that what I did genuinely helped her with her illness. I had to take care of myself so that I had the strength to help my mom while she bore the burden of her illness. For me, it turned out I was spending the last precious days with her before she died. I’m so grateful for those final days and all the help my mom received. It was a time that was miraculous and full of love. I just wish someone had told me not to demand so much from myself.