Unique Position as a Caregiver

As a caregiver, you have likely been through some very emotional and difficult times with your loved one in heart failure. When things become stable with the patient, we often embrace the "safe normal" we have created for ourselves. I have become very protective of my serenity because it took me a long time to achieve peace within myself and our household.

My daughter was born in heart failure and we have had ups and downs for 25 years. She currently needs less support from me as she transitions into her adult life. Things are progressing well for her and she is stable. Every cold, virus, and med change, however, has the potential to still create anxiety for me but I’m able to control my emotions and give her the care and support she needs.

Coping during the COVID-19 pandemic

In times like now with COVID-19 in our life, it is so easy to begin the catastrophic thinking that I was plagued with at the onset of her illness. As the news of COVID-19 came into our world, I began to feel my entire mindset and protective mechanisms I created for myself fall apart from one newscast and headline after another.

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It was NOT subtle or gradual. It came crashing down on me instantly. I felt that uncontrollable sick feeling that can takes everything from me. I’m not going to sugarcoat this. It’s unexplainable if you haven’t experienced it. I knew I was going down and I knew that post-traumatic stress disorder (PTSD) was knocking at my door. I know what it looks like, feels like, and why it was happening but I could not control it. I stumbled to my shower where no one could hear me, fell apart, and pleaded with God in sobs to not take my daughter now after all we had been through.

The unique position of caregiving

As a caregiver, we are in a unique position. The illness is not physically ours but it is happening to us as well as the person we love and care for. If it’s a child, parent, sibling, or significant other the effects of the illness play out in our bodies and souls as well.

My daughter was born with cardiomyopathy and that is something that happened to her personally. She has to live with that on a daily basis. As a mother/caregiver, I have a child that was born with cardiomyopathy and that happened to me. It’s ok to grieve this and your loss. As she grew and matured, she began to see what this illness has cost me as well as herself. Today, we function like a well-oiled machine – a team that shares the hits as well as the amazing gifts and blessings we have received.

Adjustments I have made

I’m slowly adjusting to the changes we need to make in our life to keep my daughter safe during the COVID-19 pandemic. It’s time for me to pick myself up and use the tools I have learned to protect my sanity and be able to support her in this difficult time.

I have set guidelines for myself to follow which include limiting my time on social media and news on COVID-19, face-timing with friends and not talking about COVID-19, reaching out to healthcare professionals for my PTSD, calling on my faith, exercise, and meditation. It’s necessary to stay informed, but it is not necessary to submerge ourselves in everything COVID and take on this virus personally as if we have control of the outcome.

Loss of control is a big one for me and unfortunately, I do not have any control over COVID. I can put all the things in place that are recommended and learn the guidelines that will protect us and our community. I'm working to let go of the fear and live the life we were given in a positive and healthy manner.

Making the choice daily to pick myself up and doing the things I need to do to stay healthy. Yes, we slip and cry in the shower and react crazy trying to protect our loved one and ourselves from the unthinkable, but their needs to limits on my crazy or I lose me and I have worked too hard on this journey to give up now. Please take care of your mental health so you can be present and there for yourself and your loved ones for your personal journey.

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