Life after a pulmonary hypertension (PH) diagnosis has been described as the “new normal,” a change that requires a host of additional considerations for day-to-day life, travel, financial needs, treatment and work. Patients who live without a caregiver can face additional challenges. Caregivers can help people with PH cope emotionally, logistically and financially. Without a caregiver, the daily activities like laundry, food preparation and cleaning still need to be attended to. While these challenges may seem overwhelming, many patients find themselves successfully managing life without a caregiver or even becoming a caregiver for others. PHA asked some of these PH patients to share their advice for how to survive and thrive without a caregiver, and here’s what they said:
I manage by…
- “Sharing through social media. Sometimes reading about others helps us feel less isolated. I also teach a course called ‘Living a Healthy Life with a Chronic Illness.’” — Rita
- “Taking it one day at a time.” — Cathy
- “Trying to keep up with housework a little each night, instead of letting it pile up, and keeping easy dinners in the freezer for late-at-work or ‘PH’ days.” — Brit
- “Focusing on what I can do instead of all the things I can’t do.” — Kathy
My advice to others…
- “I felt prepared for an emergency, but I wasn’t. I was unable to communicate with my medical team; my fever was so high that my words came out jumbled. This is why I strongly recommend PHA’s Empowered Patient Online Toolkit. It’s documentation I can carry with me at all times.” — Doug
- “If you have PH, do not sit around and feel sorry for yourself. Do as much as you can.” — Sharon
- “Make sure you take care of bigger tasks when family members are around. Have somebody for emergency backup who would know how to administer medications.” — Kristi
- “Be willing to ask for assistance when you need it, and have a handful of people you can call for help with specific tasks, whether it be emotional or physical help. It is hard doing this on your own, so make sure you have a good support network, even though they may not be physically with you.” — Brit
- “Explain your condition as clearly as possible to others. Make a list of things you need help with to let your friends and relatives know. Wear a smile, no matter how difficult. When I’m going around on a scooter with my big oxygen tank, I can either let it make me feel like everyone is staring at me and that I’m odd, or I can ignore it, smile and be happy with people.” — Kathy
Many patients spoke to the power of PHA for connecting them with other patients and resources. As Rita shares, “I started a local support group at our PH clinic. I would encourage others to join your local support groups and attend as many sessions as possible.”
Navigating the PH journey without a caregiver means being proactive. Educating yourself about PH and PH resources can take some of the fear away from doing it all yourself.
