Guest Post By Danielle Leach
What do you do for your seriously ill loved one when you still have time with them, but not sure how much time before they die?
So many people offered to help but I was at a loss when my son Mason was dying of cancer in 2007. Luckily, before Mason died, I had good friends that did many things for us that resulted in lifetime memories for our family before he passed away. Even though I had worked as an advocate for cancer research and support for many years, it was hard to organize and formulate ideas amidst the treatments, doctor visits and care my son was receiving. Offers of help were great, but I really needed action items to accomplish and work on with their help.
As a patient advocate, my experience working in cancer and my current position as Director of Partnerships at Inspire, I have read, heard and discussed many ideas, thoughts and feelings about this topic. This topic crosses all boundaries of disease and is a constant theme among discussions on Inspire’s online patient support communities.
A friend whose mother was dying of cancer talked with me recently about the frustration of what she could do to make the remaining months with her mother special and to give her and her family opportunities to talk and share moments together. They wanted to “do something.” I suggested the following:
- Buy the patient a journal in which she can share thoughts and advice.
- Have younger relatives think of 10 questions to ask her—how she met her husband, what things were like when she was a kid, anything about her life, her favorite childhood memories. Videotape them interviewing her if she will let them, or record her voice answering the questions.
- Have younger relatives create “coupons” for things they want to do for the patient—anything from an extra hug, to helping her clean up, going out for coffee.
- Make music discs for her to listen to in the car, or while undergoing chemotherapy.
- Have family members write on slips of paper why they love her. Put the slips of paper in a decorated box for her.
- Have the patient pick out all favorite photos and make a disc for everyone to share.
- Give the patient a box of notecards and ask her to write little notes to everyone—it could be about anything she wants—serious or funny. It can help pass the time during chemo or other medical treatment. It also can give patients a channel to say something she couldn’t say in person.
- Have younger relatives find jokes to send her in the mail or e-mail once a week.
- Plant a tree or perennial garden as a family, and involve the patient if possible in the planting. My son Mason’s flowers always make me smile.
One member of an Inspire patient support community, a 47-year-old woman who had been caring for her mother, noted, “People tend to pass along the big events and happenings. The little things that happened one Sunday in May can be the most heartwarming.”
We often do not give ourselves and the person who is sick the opportunity to do these types of activities. These projects do not have to be somber or a signal of “giving up the fight.” It can be a moment of reflection for a family facing tough times, to honor their family and its strengths, and to create a history to share. These activities are avenues toward patient engagement and empowerment.
We have a book of stories about Mason, many photos, videos, his blog, his website, and my online journal, where there is a living record of the amazing life we shared both before and after his diagnosis. I am grateful we have all those moments documented for his brother and our family and friends to treasure.
There are projects you can do when someone you love is sick. Brainstorm with your family, look online at support communities for ideas, ask the patient for her thoughts, and take action. Those small moments and projects you create will empower you and engage your family in whatever life may bring.
About the author
Danielle Leach is Director of Partnerships at Inspire, and is founder of the Mason Leach Superstar Fund, in memory of her son, Mason, who died of pediatric medulloblastoma in 2007. Danielle also serves on several boards and committees related to children’s issues and health in the community.