By Hilary Sanfey
Over the last few years I helped care for a very dear friend, a retired surgeon, who developed a progressive neurological illness shortly after turning sixty. It was challenging, not least because of the emotional investment and physical toll, but because I had to learn a whole new skill set. So many times as a surgeon in practice I had ordered meds (lots of meds- after all I was a transplant surgeon!). Some were taken with food, some on an empty stomach, some an hour after eating, some crushable, some not … Breathing treatments, physical therapy etc. without thinking of the time it takes to coordinate this regimen with the activities of daily living, not to mention how exhausting it was for the poor patient! Now I truly appreciate the little time I did spend observing the nursing staff at the bedside.
What advice do I have to offer about caring for a loved one?
- Build a Support Network: You may feel that you do not want to burden others, but in fact most people are willing to help if asked; they just need help in knowing what to do. Families, friends and caregiver support groups provide a network of people who can help.
- Seek Help: If it fits your budget, hiring paid help can free up your time, so you can spend it in a more meaningful way. Often, in the rush of errands and medication schedules, quality time gets pushed to the bottom of the to-do list. Make a priority list of caring responsibilities, then take on the most important ones yourself, and try to find someone else (paid or unpaid) to help out with the less important ones.
- Plan Meaningful Activities: For someone who is housebound a trip to Church or to Starbucks is a treat that relieves the daily routine. Have a list ready for road trips; wheel chair, walker, toiletries, meds, special dietary needs etc. so that these outings can have some spontaneity.
- Communicate: The first step in being able to communicate effectively is finding a way to understand and express emotions. Being a care partner can stir many, often conflicting feelings in both sides, such as guilt or frustration as well as pride. Talk to a counselor, or as I did to a trusted friend. An outlet of this kind can ease communication with a loved one, making it less charged and more meaningful. Furthermore, remember that communication may change when someone lives with a chronic illness. Because of the disease itself, people may respond more slowly than they used to, and gesture less often. It is important to really look at the individual when speaking and try to ask yes / no questions that can be answered by blinking, a hand squeeze or a thumbs up!
- Adapt to New Nutritional Needs: Learn about proper nutrition and be creative with making shakes, soups etc. If hand – mouth coordination is difficult then look online for utensils that are easier to use. I found a wonderful plate on amazon that keeps food warm for about 35 mins after a quick zap in the microwave and also a variety of mugs that are easier to hold and reduce spills.
- Mind New Safety Risks: Take care to minimize the risk of falls by removing rugs, obstacles and ensuring that essentials are close to hand, such as phone, glasses etc. Be aware that sundowning may occur at night and if your loved one is alone in the bedroom, a baby monitor is a good way to alert caregivers of movement or distress. Also there are various services that provide pendants or wristbands with a button that allow the individual to call for help. We used Lifeline and the cost for 24 hour availability was about $30 per month. Installing a baby monitor with video provided a way to monitor activity and provide security when I could not be in the room.
The future will always be uncertain and how you pace yourself will clearly depend on the situation and the prognosis. I truly benefitted from the support of the Home Hospice staff who were there for me as well as for the patient in the final few weeks. Many times, the hospice staff arrived on our doorstep late at night to deliver meds or other necessities so that we would not have to go without overnight.
Finally, the world did not come to an end because I was not in my office and missed a couple of deadlines or had to ask a colleague to assume an assignment; neither did my house fall to the ground because of the one inch of dust that covered every surface.
As you struggle to find balance ask yourself, when he/she is no longer around which will I regret most: missed work opportunities or the time I could not be at their side? Do not underestimate the sense of peace that comes with supporting a loved one in the final days of their life, facilitating their last requests and allowing them to die in peace. It sustained me in the dark days that followed.
Dr. Sanfey served as President of the AWS national organization and the AWS Governor to the American College of Surgeons. Dr. Sanfey’s interest in the issues facing women surgeons has extended to research efforts, and she has authored multiple peer-reviewed publications addressing the training needs of male and female surgeons, gender differences, part-time training, perceptions of work-life balance, and mentorship. Having trained in an era and environment that did not have women surgeons, Dr. Sanfey chose to become an AWS member and work to ensure that young women today could achieve their personal and professional goals without the sacrifices that were necessary thirty years ago. Currently, is the Vice-Chair for Educational Affairs and is a Professor of Surgery at Southern Illinois University.
If you have questions about being a caregiver, you may email Dr. Sanfey at firstname.lastname@example.org.
Our blog is a forum for our members to speak, and as such, statements made here represent the opinions of the author, and are not necessarily the opinion of the Association of Women Surgeons.