When I met with Carol Riddle, she was crocheting blankets on her sunporch. It was a good spot to view the intermittent lake effect snow that was mercilessly still coming down, even in spring. For the past five years, Carol has been a part of a small group from Southlawn United Methodist Church that makes 30 to 40 blankets every few months to gift to St. Margaret’s House and Hannah’s House. “They take them with our blessings,” she explained. “We have everything prayed for before it goes out of the church.” And she’s been a blessing through her crafting to many more as well. She shared that she was a part of making teddy bears and dolls for the police to take to families in crisis. Prayer shawls have been shipped to Hungary. Carol still contributes to the community in this way. But if you spend just a few moments more with her, you will quickly find her true life’s passion: her family.
Her son and daughter-in-law live just a few blocks away. This is a great comfort to her as her disease progresses. Carol has lived years with Idiopathic Pulmonary Fibrosis (IPF). IPF causes scar tissue to grow in the lungs affecting the flow of oxygen. This results in difficulty breathing as well as loss of oxygen in the bloodstream keeping the body from working as it should. The average life expectancy with IPF is three to five years. Carol was diagnosed about seven years ago. Knowing that she wouldn’t be able to travel much anymore, a couple years after her diagnosis, she and her husband built the beautiful sunroom off the back of their home. “It was the best thing we ever did,” she shared. “My husband and I live in this room.”
It is this preplanning that Carol and her family have done so well. Knowing that she had to be her own best advocate, she began the research for more support and help. With very few area physicians who know much about the disease, Carol realized that she would have to become the expert herself. She eventually came upon Inspire.com. Inspire.com is an online community that allows members to share their struggles and successes living with a multitude of different diagnosis. It is often those who are living with the same diagnosis who we learn from most. “What you learn is the practical aspects of living with a disease,” she explained. “Like, what do you do when you have a coughing spell so bad you feel like you can’t take a breath? I’ve learned more from that blog than even my own pulmonologist.”
It is this kind of intentionality that has made Carol’s quality of life so achievable. She seems to have a good grasp of reality, accepts it and makes decisions towards the best life she can create. She shared that not every new treatment has been welcomed by her. A couple of years ago a new medicine for IPF came out. She did her research and the side effects were horrendous. She told her pulmonologist she didn’t want to try it. Her decision was met with confusion. “I had decided that I wanted quality of life over quantity of life,” she said, now knowing that the medicine didn’t prove to be all that they had hoped it would be.
Quality of life is what Carol observed when both her parents received services with Center for Hospice Care. Her father died 10 years ago, but her mother died just this past fall. She was able to live in the same neighborhood as her mother. Carol’s son and daughter-in-law moved in the house to help care for his grandmother. In August she planned her own 95th birthday party. She was also able to plan out her end-of-life care. “And it was wonderful,” Carol added.
When the decision came to receive services from Center for Hospice Care, Carol’s experience with her parents assured her that we would do a great job. However, she didn’t completely feel she was ready for all the care and services we offer. Carol still takes care of her personal care needs as well as getting out of the home, which requires a great deal of effort. She didn’t want to give that up. But when her pulmonologist suggested hospice care to get through the winter months, she gave it a good consideration. “My pulmonologist said that the very last thing I would want is to go to MedPoint or the hospital with the flu going around,” she said. “With IPF, the flu would probably be fatal.” So Carol started hospice care.
She stayed healthy this past winter. When she did have to get some tests for a few health issues, she didn’t have to go into a clinic or the hospital. CHC nurses were able to bring the tests to the home and divert the typical avenues. This simple option may have saved her life this winter. The doctor originally said that she could go on hiatus from hospice care in the spring, once the flu is basically over. “But now I’m not so sure,” Carol shared. “I’ve met my nurses. We have my medications straightened out. I’ve come into the rhythm of it now.” All of this has given her the ability to focus on the things that matter most to her: family.
“Quality of life means I can still enjoy my family,” she explained. And “Mrs. Claus” was able to spend her Christmas holidays surrounded by family and directing them on how to decorate the tree. Carol has been planning her annual family get together. “The last three years now,” she continued. “We find a local cottage within a 100 mile radius. We find a nice big house to rent and the kids come and go for the entire week.” Her face spread with joy as she recalled the wonderful memories they had already collected. She pulled up pictures on her phone to show me where they are going this summer.
“As much as I talk about having everything handled,” Carol paused. “There are days I feel very sad. Sad that I won’t see my grandchildren grow up.” She showed me the family picture on the wall, a Christmas gift from her entire crew. “I want people to know, that as far as I’m concerned, the greatest thing that I’ve done is have a good marriage and raise a good family. That’s my priority.” With such strong ties with her family, she was a bit concerned when she shared her decision to start hospice care. She had surprisingly little negative feedback. They were supportive of her choice.
Carol has been spending her time building her legacy. “I know that my family is going to be okay without me,” she said. “I’ve worked very hard to get to that point. I’ve stressed to them how important family is. They need to keep having family get-togethers. Rent a cottage. Keep the traditions going.” Even though Carol has dealt with a difficult illness for years, she feels that the gift in all the trials is being able to plan things the way she would have them. Not everyone gets that chance, and she knows it. She orders pizza and invites the grandkids over to play cards. And she has the summer to look forward to.
Carol scrolled through the pictures on her phone for the one she wanted to show me. Then she stopped and handed the phone to me. It was a picture of a serene summer porch, breezy floral prints on the chairs and views towards a lapping lake. A perfectly cushy chair sat in one corner, absolutely suited for views of family running all around as well as supplies for her crocheted crafts. “When you picture me this summer,” she looked at me, a smile spread full across her face. “Picture me here.”
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