Caregiving often involves loss and perhaps some unexpected changes. For me, it was my husband’s stroke that left him paralyzed from the neck down. Starting with that moment, fear became something that we both had to address.  

Other emotions were also woven into the situation, such as hope, love, and anger, but fear was there too and could be one of the most challenging feelings to address. Fear can paralyze you. When my husband first became ill, I was scared he wouldn’t get better. Although he improved in some ways at times, his paralysis never retreated, and over time his condition deteriorated. I experienced what medical professionals call “anticipatory grief” which is a form of grieving that happens before someone dies and is a natural response to caring for someone with a long-term or incurable illness. 

But during those years, it would have been unhealthy to let fear overtake our lives. We both had to learn to let fear go and deal with where we were in the moment. We had to learn to live our lives despite this scary situation we found ourselves in. 

Not all caregivers are in such a suddenly, desperate situation like the one resulting from my husband’s stroke. Sometimes the fears creep up on you. For example, a parent may gradually develop dementia, slowly losing memories and personality traits, while both the parent and child deal with the fears that accompany those losses. Regardless of the caregiving scenario, fear has a way of worming its way into the room at times. 

How can we as caregivers handle the fears inherent in a progressive disease or sudden illness without succumbing to them? Here are some ideas that worked for me. 

1) Accept the Fear
It is scary to watch someone you love struggle, and voicing your fears can help you face them. Simply stating a fear aloud can often reduce its power. It’s okay to share your worries with your loved one or other family members. Sometimes it also may be easier to talk to friends who aren’t as close to the situation. A journal, a therapist, or a support group can also provide additional ways to express your feelings. Support groups can often be particularly powerful, because you will have the chance to hear others’ fears and not feel so alone with your experiences.  

2) Live in the Now
Although it took me a long time to learn to do this, letting go of my wishes for the future and releasing my desire for a return to the past were key to improving the present. It was daunting to make this leap, but I couldn’t bring back those special times my husband and I shared before his stroke. I also couldn’t make our future stroke-free, but I could accept our present reality and try to bring joy into it. Accepting our present and truly inhabiting it brought both my husband and I more happiness. It was actually a bit of a frightening leap to let go of our desire for a different reality, but that leap opened the way for joy.  

3) Pat Yourself on the Back
As a caregiver, sometimes life can be confusing with so many choices to make and no clear path to guide you. When making medical or caregiving choices, it’s hard to know what the right thing to do is, and the uncertainty can be frightening. However, by caring for someone you love in whatever way ends up working for you and your family, you are doing an amazing thing. You may not always feel like you are doing something amazing, but you are, so really take the time to notice this. No matter how emotionally taxing your caregiving journey may be, your loved one is lucky that you care. Remember that.  And whatever challenging emotions wash through you as a caregiver, also remember all of those feelings are okay. Caregiving can be scary at times, and that’s perfectly normal.