I am a person who has caregiver’s in my life. I’m extremely grateful for the support I have in my life. They understand that it is nearly impossible for me to carry the weight of the effects of my trauma alone, and they bring beautiful empathy and compassion.
Lately, I’ve been pondering the question, what do caregiver’s want and need when living with, caring for, or loving a person with a physical, emotional, mental, or chronic illness? This group is often left out of the care plan. They are our unsung heroes. The friends, family and support team who, without them, we would flounder.
When I was struck with PTSD my whole world turned upside down. As with any illness, it doesn’t just affect me, my illness affects my whole family. My symptoms can be challenging for my family, friends and support team. They have taken the time to learn about trauma and PTSD and are right there to help me live the most “normal” life I can lead right now. No one, ever, makes me feel that I’m a burden. Feeling like a burden is my own personal demon that I fight on a daily basis.
But what do caregivers need when living with, loving, befriending or working with a person who has a chronic, physical or mental illness?
My husband loves it when I go out of town for a few days. He has respite. People ask why don’t we travel together? Well, really, he needs a break. When I’m gone his worries are less. He deserves all the pizza, binge-watching sci-fi, just hanging out, no worry days he can get. It’s what he needs so he can recharge. He doesn’t ask me to go out of town, but when a situation arises and he feels comfortable with my traveling companion, he encourages me to go. When I’m gone, we stay in contact every day, and he’s thrilled when I come back home, but he needs that respite.
He also belongs to an online support group for caregivers of someone with PTSD. At first, I will admit, I was fearful that he was talking to other caregivers. I soon realized that it was my own immense guilt I was feeling and transferring to him. I felt like, I drove my husband, who had no interest at all in computers or anything to do with social media into needing support from strangers online. I quickly got over that, because he needs support. He needs to be speaking to people who get the day-to-day challenges of living with someone with PTSD.
When I ask my family, friends, support system what can I do? What do you need? The answer is always the same, and I think appropriate. They say, “you don’t need to do anything but keep healing. You’re doing great, you are doing exactly what you need to be doing.” I believe that’s the best answer to give someone living with an illness. Our job is to cope with, heal, and live a contented life within our deficits. We have to trust our caregivers will get the support they need so they can have the same kind of happiness in life.
So, my question is: If you are (or were) a caregiver, family member, part of a support system, or a friend of someone with a physical, mental, emotional or chronic illness, What do you need?
Thank you for reading my memoir, Untangled, A Story of Resilience, Courage, and Triumph