Caring for Aging Parents Is Challenging with My PH Limitations

Jen Cueva avatar

by Jen Cueva |

Share this article:

Share article via email

In life, we often try to control things by trying to predict the future. But no matter how hard we try, we are not in control. There is only one person in charge: God.

Living with a rare disease like pulmonary hypertension (PH), I relinquish that control more often than not.

I was on the phone most of the week helping my Moma make some critical decisions. My stepfather was in the hospital with congestive heart failure (CHF) and several coexisting illnesses, despite our efforts to keep him home for weeks because of the COVID-19 pandemic.

Moma and I cried together over the phone as she struggled to make decisions. The first was to take him to the hospital after home health couldn’t offer any relief. Do y’all know how taxing this was for me? I couldn’t be there because of the distance.

Because of PH, road trips are hazardous for my body. Plus, we must all take additional precautions due to the COVID-19 threat. No matter how much I wanted to be with them, it was an unsafe idea.

While my stepdad was in CHF with inadequate relief, the doctors mentioned palliative care or hospice. As a rough and rugged cowboy type, my stepdad has always hated hospitals and doctors’ offices. My heart breaks to see him far from that rugged cowboy today. He is unstable and frail. I recognized this when I visited last year, and again at my daughter’s wedding recently. The most challenging part for me is knowing that he is suffering and that my Moma is exhausted.

Moma and I talked on the phone several times a day. I spoke with the nurses and his medical team. Because I wanted Moma comfortable with her decision and with the medical services, I called a second hospice company.

Working in hospice nursing before my PH diagnosis, I know how devastating this situation is on families and loved ones. I never imagined I would be planning any of this with my parents over the phone. As humans, we need physical touch. Knowing how much my Moma was hurting and that I couldn’t be there to hug her broke me.

Because of my nursing background, my parents tend to come to me with medical issues. I believe it is the least I can do to help them. They created, loved, and sheltered me throughout my life. It is only natural that I should accept the responsibility of helping to care for my aging parents. This does not mean it is easy.

Sadly, in living with a life-threatening disease like PH, I am limited. Despite this, my parents continue to age. This is a natural process of life. Living in another state makes this even more challenging.

I must remind myself to take care of me, too. Too often, guilt sets in and I become frustrated. Phone calls and texts to check on my parents often is the best plan. When I do this, I remind them how much I love them, and that my heart is there with them.

This, too, I must give to God.

Do you struggle with caring for aging parents from a distance? Or do you live near them but PH prevents you from caring for them as you’d like? Please share in the comments below.


Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


Ruby Midkiff avatar

Ruby Midkiff

Jen, I cared for my parents before PH. We moved to Brookhaven MS to live in their town. We lost Mama within a year. I was having symptoms of PH, but without a diagnosis until after Daddy died. I can’t imagine caring for them with PH. I had a lot of help. Your case is even more complicated because of the coronavirus. Just had a video conference with my PH Dr. and he told me to stay quarantined. It’s just too dangerous for us to travel, even more for you because your health is more complicated than mine. If you don’t care for yourself, you won’t even be able to help them make decisions over the phone. I know it’s hard. Praying for you and your parents. 🙏🏻🙏🏻🙏🏻💜💜💜


Leave a comment

Fill in the required fields to post. Your email address will not be published.

A Conversation With Rare Disease Advocates