Tina Masters-Odum recently lost her husband after being his caregiver for over 12 years. Today, she honors his legacy by sharing her best caregiver and survivorship tips.
We start with what you need to know at the beginning of this process. It can be easy to experience information overload. But talk to a nurse navigator or equivalent to find out things such as what are the sleeping arrangements for the caregiver? What other accommodations will the hospital have for food, a shower, and more? What about small things, like lockers and ice? How will the patient's room be cleaned? Will they use bleach, which can often exacerbate nausea?
Understand that there are protocols you will need to follow. If powerful antibiotics cause diarrhea, Infectious Disease has to come and check for a Clostridioides difficile (C. Diff infection). What about steroids?
Tina talks about learning the schedules for different doctors' rounds, and using a white board in the room to make sure questions are answered across different shifts.
In addition to many practical tips, Tina talks about soft skills - bringing humor to tough situations. Whether it was naming an IV pole and giving it a costume for different holidays, or dressing up in Halloween costumes to bring candy to doctors and nurses. The staff are people too, and it's to your benefit to make your room a fun place to be.
Tina also gives some great tips for the time after transplant, when it's time to go home. There's the initial period of being extremely careful with visitors. And also, repeat hospital visits are very likely. And there's often a negotiation that happens between the patient and caregiver. The phrase "The Doctor says..." can be quite useful.
The caregiver's mental health is vital. Tina talks about a counselor she saw, and also arranging for respite care, so she could have some time for herself. Keep in mind, every patient is different. Her military aviator husband didn't want a "Church Lady" to come sit with him, but there was a handyman who he got along well with. Maybe something needed to be taken care of around the house? Tina calls this "Dude Care."
Tina is working on a book, called "Hunters Battle: Caregiver Tips and Trips." She hopes to have it out later in 2023.
Resources
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
The Leukemia & Lymphoma Society, www.lls.org
Sanofi: https://www.sanofi.com/