Helina Ofori (left) of New York City leads the Westchester County PHA support group with her mother Pat Ofori (right).
By Helina Ofori
I have been a caregiver to my mother, Pat Ofori, for more than 10 years. I help my mom with meal planning and cooking. Although she is a bit intimidated by her Instant Pot, we have made chili and beef stew.
I also take my mother to medical appointments. If my mom has to be admitted to the hospital, I carry her medication list and can educate health care providers about her medical condition. I advocate for her, talk about her condition and medications, pack overnight bags and escort her.
I help her with showering, using a shower chair because she also is an amputee. I assist with housekeeping and financial matters. We do some retail therapy at nearby malls and eat dinner in one of the restaurants in the community. We enjoy watching TV together and conversing on various subjects.
My mom’s health is challenging for both of us. She acknowledges the severity of her PH but wants to make the most of her time. She does as much as she can in a day, but also recognizes that the next day she will be exhausted.
Taking time for self-care
As a caregiver, I want to spend as much time with my mom as possible. I am fortunate to have a supportive family, so I can have personal days away from caregiving. My mom is extremely grateful that we were able to do a family portrait, which is hanging on the wall of her home.
In my free time, I enjoy weekend getaways to Atlantic City, movies, getting my family together for holidays, going out with my boyfriend, finding out about new resources and painting.
Being a caregiver and a support group leader allows me to comfort other caregivers, share resources, direct attendees to reliable information on the PHA website and encourage them to become members of PHA.
Rewards of caregiving
The most important part of volunteering for me is assisting my mother in something she loves to do and helping PH community members. My mother inspires me with all that she does on a daily basis and living with PH.
The support group helps me, too. I get to meet new people who are sometimes unsure about how to provide support as a caregiver. It also gives me the opportunity to share firsthand knowledge of how to care for a loved one with PH.
I encourage other PH caregivers to ask every day how your loved one is feeling. This way, you know how to plan the day.
My other advice is to plan the week and make a schedule of medical appointments, telephone calls and other to-do items. Have a conversation every day, and find something to laugh about or smile.
Are you a caregivers for someone with PH? Join us at a PHA support group meeting. Then, check out our caregiver resources.