Caregivers Need To Know How Important They Are

Nicole Creech leads the Pulmonary Hypertension Association’s Lexington, Kentucky, Support Group with Evelyn Mitchell. They work together to bring awareness, education, fellowship (and sometimes entertainment) to the group. Creech a member of the PHA Board of Trustees, was diagnosed with pulmonary hypertension due to sickle cell anemia in 2008. In 2023, she had a temporary role reversal: She served as a caregiver when her bestie and fellow board member Diane Ramirez underwent transplant.

As patients with PH, we never want to burden our loved ones with the many needs this chronic illness demands of us. Sometimes, we have no choice because we all experience varying degrees of illness.

Nicole Creech

From my very first year as a support group leader, I’ve planned a caregiver’s meeting every February. I’ve always known how important this position is to the patient.

I’ve seen many a caregiver through the years handling medication lists, mixing medication, taking notes, writing out questions for doctor visits, making sure the oxygen is stocked for short trips, and overseeing nighttime needs.

Caregivers are attentive and involved, sometimes doing more for the patient than the patient themselves. If not careful, a learned helplessness with the patient can evolve, and a caregiver can experience severe burnout.

That’s why I’m inspired to hold an annual meeting to address these issues as well acknowledge caregivers (including our health care professionals). We see you, we need you and we thank you.

I want to highlight PHA’s caregiver resources and preach a little. We need our caregivers to know how important they are: They accompany our members to every support group meeting, so one meeting out of the year should be for them. They should get all the attention, focus and gifts, especially during February, the month of love. They need to feel it.

I’ve always admired the attentive husbands/wives and the doting parents to pediatric patients. I bring Teddy, my 5-year-old Morkie (a University of Kentucky fan), to the meetings. He loves everyone and brings a smile to the faces of our members. Our support group has always had the support of health care professionals from the Gill Heart Institute, and we include them for providing and managing our health care needs.

As patients with PH, we never want to burden our loved ones with the many needs this chronic illness demands of us. Sometimes, we have no choice because we all experience varying degrees of illness.

I believe we all think we’ll be taking care of each other — and in many ways we do. There just happen to be other elements to caregiving that often times the patient doesn’t think about.

That includes the guilt that may come for caregivers with children or spouses who realize the patient may not be able to live the life they once dreamed of. Or the mental anguish and grief that comes with hospitalizations or losing a loved one to PH.

It also includes the day-to-day grind of making sure their loved one has everything they need just to get through the day. It can be a lot. My take away for caregiver appreciation is that caregivers need care too.