As a primary care doctor who has a strong passion over the past thirty years for quality end-of-life care, I have worked with many patients and their caregivers during one of the hardest times in their life. In fact, there were more than 53 million family caregivers providing unpaid care in the US in 2020 according to the National Alliance for Caregiving (NAC) and AARP. That is why as part of November’s National Family Caregivers Month I am excited to talk with Jeanne Elliott Enright, the daughter of a former patient, to help us gain a better understanding of the caregiver role.
How did you become a caregiver?
Jeanne: I am the daughter of a wonderful mom, known to her friends as Betty Elliott. My mom had heart disease, and in her last year, she was hospitalized numerous times. She was caught in what I refer to as the “old age healthcare spiral.” As soon as she had any symptoms an ambulance was called, and she was taken to the hospital and admitted for a couple days. After 2-3 days of no sleep and a battery of tests, she would be sent home, weaker and a little more confused, and a couple weeks later, the cycle would repeat itself.
One day, I was on an early train to work, and I made the decision to stay home with my mom and work with her to gain control of her healthcare plan. I knew that she deserved the best solution available, and as her daughter, I wanted to make sure she had it.
How did you find me?
Jeanne: I sought help from our Parish Nurse, who gave me your name. A few days later, we had our first appointment in the comfort of my mom’s living room. At the time, my mom was still sleeping most of the day and virtually unable to communicate. I remember you sitting on her sofa with your laptop, and you took the time to review her entire medical history online, coordinated with her doctors and markedly reduced her medications. Within 48 hours of your visit, my mom was alert, talking, laughing and smiling. Although her physical ailments were still very real, my mom – the venerable Betty Elliott - was back!
I would recommend for any caregiver who has concerns about their loved one’s healthcare to seek help and recommendations from others, including family, friends, spiritual centers and the community. There are numerous resources now available for caregivers, and everyone should feel empowered to use them.
Did having an end-of-life plan for your mom make your role as a caregiver easier?
Jeanne: At your second visit, we talked together about a treatment plan for my mom. The key word here is “together”. You listened to my mom and respected what she did and did not want. She did not want the fear of being shuttled back to the hospital. Knowing this, I was able to make important decisions about her care. For example, when she got pneumonia, we decided to treat her at home, rather than the hospital. Under your home-based care, she recovered in the comfort of her home. Having a plan and knowing my mom’s healthcare wishes helped me avoid the agony and guilt that is often associated with these types of decisions.
How do you recommend caregivers start an end-of-life conversation?
Jeanne: I was lucky that my family is very open about what their healthcare wishes are and what they would want in certain situations. If that is not your situation, here are some other options to start the conversation:
○ Talk about a story you have heard, whether it happened to a friend or someone else, and ask your loved one what they would want in that situation.
○ If faith is important to them, consider having their pastor or minister help facilitate the conversation.
○ Ask a family doctor or trusted healthcare professional to assist you in having the conversation. (Check out the blog post, “How to Plan for a Quality End-of-Life,” for more information.)
What advice would you give to people who are caregivers today or may be in the future?
Jeanne:
○ First, I would say, it is hard, but also very rewarding. You get back almost everything you put into it.
○ Remember that your loved one is still the same person inside even though their body is failing.
○ Try to plan your time together to make it special. For example:
○ Have their friends over for lunch.
○ Buy some scratch off lottery tickets and discuss how you would spend the money if you won.
○ Watch family movies together.
○ Make time for yourself, even if it is just to cry.
○ I lived less than a mile from my mom and would walk to her house and back every day. I used this time to be by myself, and more often than not I spent it crying.
○ Don’t feel guilty about stepping away. It is important for you to take care of yourself so that you can continue to take care of your loved one.
○ Don’t be afraid to ask for help.
○ Make a list of people who have offered to help and reach out to them.
○ Look for local and state community resources for caregivers. (Go to villagemedical.findhelp.com/ and type in your ZIP code for local resources.)
Any final thoughts?
Jeanne: You know, the funny thing about “end-of-life” is that there is no warning signal – no alarm, no phone call or email - that informs us “you are now entering the ‘end of life stage’”. It creeps up when we are busy juggling life. It may sound odd, but in many ways, my mom’s end of life really defined her life. Within the confines of her sunny living room, we were able to just “be” together. She visited with her sister, brother and countless relatives and friends. And because of the end-of-life care she received, we are all at peace, and I am able to tell you my story today, not with tears, but with gratitude.
In my career, I have seen many cases like Jeanne and her mom’s and have seen how having an advance directive can play a crucial part in helping make sure your healthcare wishes are respected and in giving peace of mind to your caregiver. I often say end-of-life is sorrowful, but it does not need to be a crisis. With family gathering over the next few months, please take a moment to create or update your plans and have conversations with your family. It is important that these conversations be “early, longitudinal, and evolve.”