Navigating the PH Journey Without a Caregiver
Patients who live without a caregiver can face additional challenges. Caregivers help PH patients cope emotionally, logistically and financially, and without a caregiver, the activities of daily living like laundry and food preparation still need to be attended to. While the challenges may seem overwhelming, many patients find themselves successfully managing life without a caregiver or even becoming a caregiver for others. We asked such PH patients to share their advice for how to survive and thrive without a cargiver, and here’s what they said:
I manage by…
- “Sharing through Facebook. 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.” Matty agrees, saying, “PH and scleroderma support groups have met 95 percent of my needs emotionally; I also turn to PHA for educational videos and to the Caring Voice Coalition [for financial information].”
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. To ease the stress of being your own caregiver, the Family Caregiver Alliance has provided questions to ask your doctor:
- What services will help me care for myself?
- Where can I find counseling and support groups?
- What agencies are available to help me with transportation or meals?
- What public benefits am I eligible for, such as In-Home Supportive Services or Veterans Affairs Services?
Being patient and allowing time for reflection can help you gain perspective on your needs and how to articulate them, and connect with those who understand. By reaching out to people who’ve been there, you’ll find support, information and hope for the future.
This article first appeared in the Winter 2014 edition of Pathlight.