SOCIAL VOICES

Aortic Stenosis: 5 Tips for Care Partners

When I was first diagnosed with severe aortic stenosis, or a heart valve failure, and my cardiologist told me I needed aortic valve replacement, I felt overwhelmed by the news. What I wanted most in that moment was to be back home, feeling the safety and comfort of a hug from the person closest to me. Throughout the journey from diagnosis to treatment, Darryl was my rock.

If you were to ask him about his role as my care partner, he would downplay his contributions – but I can’t imagine going through it without his support. Darryl remained steadfast as he accompanied me to appointments, tests, and procedures; took careful notes so I could be present with my doctors; and maintained a notebook with a running list of questions for my healthcare team. He stayed positive and reminded me how much better I would feel with my new heart valve, lifting my spirits when I would get stuck in my own anxiety and fear.

Since my transcatheter aortic valve replacement (TAVR) in 2014, I’ve met many other people with aortic stenosis, as well as their care partners. I’ve reflected with them about their experiences, as they told me about the tools they wish they had during the process. Here’s what I’ve learned about how to be there for your loved one while also managing your own mental health.

It’s important for care partners to communicate openly with their loved ones. You are human, you have feelings, and you have limits. For your own health and the health of your relationship, check in with one another about how you’re feeling. It’s okay to express that you are feeling anxiety or stress, and to ask your loved one to share how they’re feeling. It’s not healthy for either of you to pretend that everything is normal if it doesn’t feel that way. It’s also okay to take time for yourself to rest, do something fun, and fill up your “tank” so you can give from your own abundance rather than giving your last drop. Encourage your loved one to do the same!

It’s crucial to be a team with your loved one, letting them know that you’re in this together, standing with them. If your loved one needs to make some lifestyle changes, jump in and make those healthy changes, too, knowing that improved health will benefit everyone. When it comes to medical decisions, empower and support your loved one. Make every effort to advocate for them based on their values and priorities, even if what they want is different from what you would choose. If their choice brings up anxiety for you, speak with a trusted friend, advisor, or professional counselor.

Care partners have expressed to me that sometimes they felt overwhelmed by all the new information after diagnosis. One care partner friend shared that establishing an aortic stenosis-focused notebook was very helpful. She and her husband wrote down questions for the doctor in the notebook and brought it to every appointment. She made sure to ask each question and take notes as the doctor answered. They also used the notebook to track and celebrate every milestone!

Many people benefit from cardiac rehab after their valve is replaced, whether they’ve undergone open-heart surgery or TAVR. In cardiac rehab, your loved one will be guided through an exercise routine under the supervision of a medical professional, who will also teach them how to improve heart health and reduce stress. A friend expressed that her husband’s participation in cardiac rehab wasn’t only helpful to him; it was also a comfort to her and lowered her anxiety about his ability to return to his physically demanding job after his procedure. She felt confident knowing he was being assisted and monitored as he regained his strength. Because he went through cardiac rehab, her own worries were kept in check.

There are so many resources out there, from support groups to your healthcare team. It’s important for care partners to support and encourage each other, to understand that their feelings and experiences matter, and to find a safe place to connect. Many care partners have told me how helpful it was to join care partner support groups and meet other people walking the same path. What’s unique about a care partner support group is that it provides an emotionally safe, private space that’s separate from patient support groups. In these spaces, care partners can express their fears, anxieties, and needs with others who understand, without concern about burdening patients. Care partners can share what they’ve learned, and offer support and encouragement to others. When you go through this journey together, it is so much easier.

The app My Valve My Voice offers a private care partner community, and there may be other similar groups in your area. Talking with other care partners and hearing their stories can make all the difference and mean so much.

Care partners can find other support groups and tools tailored to their needs by reaching out to organizations like the National Alliance for Caregiving, Caregiver Action Network, Family Caregiver Alliance, Patient Advocate Foundation, and Heart Valve Voice US.

As you support your loved one with aortic stenosis, it’s crucial to find support for yourself, too. It’s important for care partners, as well as patients, to know they are not alone!