By Carol Zernial
WellMed Charitable Foundation Executive Director
Caregivers sometimes have to make tough decisions – literally decisions of life and death. It doesn’t matter if we knew this moment was coming. It doesn’t lessen the intensity of the decision if the person is very old or in poor health. The question will be asked: What do you want to do now? But that’s not really the question, is it?
When we are making decisions about surgery, ventilators, feeding tubes, Do Not Resuscitate (DNR) orders, or even a decision to go for the full code – to try everything humanly possible – it’s not really a question of what we want to do. The real question is what does the person wants to do who is facing delicate surgery, life-prolonging interventions, or even death.
Hopefully, we have had the opportunity to have these discussions with the person for whom we are caring. Knowing clearly what the person would want if they can’t communicate for themselves is a lifesaver for us. Any discomfort we may have in starting the conversation about death with a loved one – of any age really – will become a great source of strength and comfort in a dark hour when we know what they would say.
It’s important to repeat this conversation as our loved one gets older, gets sicker, is in greater pain or, in the most likely outcome, is deteriorating. A person might make a different choice if the pain becomes too great or the effort to stay alive doesn’t equal the quality of life.
The question is not what we want. The question is do we know what our loved one would want at this time and in this situation. We have to step back from ourselves and be their voice – no matter how difficult and no matter how much we might want to disagree.
We might have to stand up for a decision we know our loved one would want against the loud voices of other family members. We might have to summon all of our strength to say, “Please just make them comfortable” knowing that comfortable means allowing our loved one to slip away.
The matriarch of our family, my 97-year-old great-aunt, recently passed away. In addition to her many other interests, she had formed a death and dying “club” where she and her older friends talked about what they wanted at the end of life. We all knew exactly what she wanted even when she could no longer say the words. When her time came, her friends and family came to her apartment in a steady stream for three days – holding her hand, brushing her forehead, whispering words of love and friendship. It was an amazing ritual.
We are not all going to be so “lucky” as my aunt, but she created this possibility. Embracing difficult conversations about life and death, and respecting these final wishes mean that we can all live life, up to the last moment, on our own terms.
WellMed Charitable Foundation Executive Director Carol Zernial is a noted gerontologist, radio show host, and emeritus Chair of the National Council on Aging. The non-profit WellMed Charitable Foundation focuses on complimentary programs impacting seniors and family caregivers, including weekly telephone learning sessions, evidence-based classes on stress reduction and more. Find out more at www.CaregiverSOS.org or toll-free at 1-866-390-6491.