5 Reminders For When Caregiving Gets Really, Really Hard

There were many parts of the role of caregiving that I handled with ease – research, nutrition, scheduling, tracking white counts, learning healing arts like massage and Reiki to help him. I was great at the "doing" of caregiving. Where I struggled was with managing the emotions...the fear, the hope, the rollercoaster ups and downs as treatments started to work and then failed, the anger at our situation.

One of the most difficult things to deal with, aside from fear, was the guilt I felt the few times that, in a state of total physical and emotional exhaustion, I wished for life before the diagnosis or for a break from caregiving. It is normal and natural to have these feelings but they can be a heavy burden to carry. Find someone you trust to address them so you don't create even more stress for yourself. This can be your healthcare provider, a coach, a therapist, a social worker, or someone close to you if it isn't comfortable for you to share these feelings directly with your loved one.

​Fear was the feeling that was most difficult for me. I was fearful about the many ways cancer could impact us. Some of the fears were things we talked through together. However, Gary and I only ever had one conversation where I spoke out loud that I was afraid Gary was going to die and leave me alone. And that moment was such a beautiful one between us. Looking back I wonder how many more of those moments I missed by burying my emotions or having them come out in expressions of impatience--sometimes even anger, directed not at him but at our situation.

Now, the imaginary world of "what if I had" is not, to me, a healthy place to live. Instead, ask "what now": what can I do differently now that I am aware that holding back feelings comes at a cost? What would it be like to fully honor and embrace all the feelings that come with the role of caregiving?

These are difficult questions to answer, so naturally I made a list for coaching yourself and your loved one on how to have a discussion about the tolls of treatment for both of you.

Tambre's Tips for Conscious Communication:

1.Be Strategic

Reflect on why you are choosing to have this conversation at this time. Give some thought to the outcome you are hoping to arrive at. It could be you need to work with your loved one to find some resources for you. It could be that you want them to acknowledge know your stress is about the situation and not about them.

2. Be Mindful

Choose a time, if possible, when you and your loved one won’t be interrupted and can focus on each other.

3. Be Authentic

If you are afraid you might "mess it up" and you’re not used to talking about your feelings (or your feelings about this situation), let your loved one know that it is challenging. Ask permission to not be perfect as you figure out how to communicate to them about your fears, anger, or sadness. Being willing to make mistakes as you learn to communicate more fully and authentically.

4. Be Honest

This is about your feelings right now, not them, even if it feels like it is about them. Use "I", not "you," in your statements ("I feel," "I need," "I am…"). Let them know you do not expect them to come up with a solution or be the solution. You are just giving them some insight into the emotional experience you are having and where you are struggling.

5. Be Receptive and Respectful

Share what's going on for you and also be ready to listen to how your loved one receives the insights. A dialogue involves two people sharing back and forth. Ask them questions like, 'What does it feel like to hear about my challenges?' or 'What is similar or different from what you’re experiencing?'

For me, this switch in consciousness let me see a full spectrum of emotions that you, too, might experience: the love that caregiving expresses, the fear we have for the wellbeing of our loved one and our relationship, the anger we have at the entire situation, the loneliness that can come at times when it seems other family members or friends have distanced themselves or disappeared completely, the sadness and grief over the bits and pieces of ourselves and our loved one that are lost to cancer. Suddenly you might feel gratitude for the moments you still have to share and have a clarity for priorities and values that are often gained from being more conscious that there are no guarantees in life. You might be able to enjoy sharing meaningful time together with your loved one.

If you, as a caregiver, knew how to create this kind of communication with your loved one, how do see it being helpful for both of you? What would be different?

Answer Tambre’s question in the comments below!

Image courtesy of Jake Thacker.