The only parent-child conversation more excruciating than the birds and the bees is the death talk.
In a fantasy world, our parents would record their end-of-life wishes in a legal document and set aside a good chunk of change for funding. They would include a list of pre-approved retirement communities, or they’d retrofit their home to age in place and set aside money for caregivers if necessary. If Mom wants her casket lined in hot pink velvet with sequins, so be it, as long as it’s on her dime.
But aging is a messy and convoluted affair that people don’t like to plan for or discuss. Most Americans prefer to keep their heads in the sand about the matter and then fall apart when the inevitable happens. End-of-life experts estimate that just 20 to 30 percent of Americans have advance directives.
What I’ve come to learn after the death of my parents is that preparing for a loved one’s departure from this world is the final, great act of love you can show that person.
Death isn’t just for old people. Accidents and unexpected illness can strike at any age, triggering a series of important medical decisions. That’s why I suggest discussing such matters as early as possible.
As a lifelong worrywart, imagining worst-case scenarios came natural to me, yet I took few concrete actions ahead of time to ease the stress of a family health care crisis. I regret that now, as the lack of planning caused my mother and my father to suffer needlessly at the end of their lives.
My parents demonstrated remarkable steadfastness in their denial of death. Dad would not discuss the subject at all. Mom’s reaction to my feeble attempt to have the end-of-life talk was a common one: “We’re not dead yet!”
My father’s Alzheimer’s made me realize how important timing is for end-of-life discussions. Alzheimer’s chips away at the mind, so by the time the family realizes there’s a problem, the person may not be of sound mind to make health or financial decisions. My father never got around to completing his advance directives or a will, and that meant my overly optimistic mother was in charge of his medical care and I had to spend the year after my father’s death in paperwork purgatory, in order to gain access to Dad’s assets that my mom rightfully deserved.
There’s much discussion nowadays about having a “good death,” which for many people means dying at home in as little pain as possible. These goals sound reasonable but can be difficult to achieve. My mother died at home, but over the last several months of her life, her pain was poorly managed by her doctor and home health services until she was finally admitted to home hospice care. In retrospect, I would have pushed for home hospice sooner. Be prepared to be a patient advocate for someone who chooses to die at home just like you would do for someone in a medical facility.
Death is scary because it is the greatest of the unknowns, and planning helps us feel a bit more in control of the situation. Don’t bombard your parents at the next family dinner with 20 questions, but do initiate a discussion. Let them know that if they are unwilling or hesitant to discuss such matters you and/or your siblings will be required to make decisions for them, and it may end up not being what they want.
In addition to all of the basic questions about medical care, housing, finances, and funeral arrangements, make sure to document online logins, passwords, PINs and other data required to access important accounts. These are some additional questions that came up while caring for my parents.
- Are you willing to move to a nursing home if caring for you becomes difficult at home?
- Do you want a ventilator to keep you alive if there’s little chance for recovery from a catastrophic medical event?
- Do you understand what “do not resuscitate” orders mean?
- If you have dementia and forget how to swallow, do you want a feeding tube?
- Will you accept palliative care if treatments fail?
- Do you want supplemental oxygen while in hospice care?
- What financial resources are available to pay for end-of-life care?
- Who will have financial and medical power of attorney?
End-of-life planning is as much for the family’s peace of mind as for the dying person. To be able to refer to a document of your loved one’s wishes will make your life so much easier as a caregiver. You won’t have to make life-or-death medical decisions at the spur of the moment and while in great emotional distress.
There may come a time when you have to divert from your loved one’s wishes. I don’t believe my father wanted to spend his last year in the dementia wing of an assisted living center. But he was becoming increasingly more difficult for my mother to manage at home. He hit her in the jaw while she was getting him ready for bed. He wandered away and the police had to search for him. After he required surgery for a kidney stone, he could no longer walk and was sent to a rehab facility. Alzheimer’s patients make lousy rehab candidates, and so the facility could not release him back home, as my parents lived in an upstairs condo unit. Do your best to honor your loved one’s wishes, but always with the safety and well-being of all parties involved in mind.
Even if your loved ones take proper legal steps to document their end-of-life wishes, you will have to stay on top of medical staff to make sure those wishes are recorded and followed. A 2007 Critical Care study found that only 25 percent of physicians knew that their patients had advance directives on file.
After my mother finally agreed to my dad’s DNR order, the directive failed to transfer from the hospital to the skilled nursing facility. My father collapsed in the shower and an EMT cracked my father’s ribs while performing CPR on his frail body until the doctor got a hold of my mom and she authorized the insanity to stop. Even though I was not present to witness the final chaotic moments of my father’s life, they haunt me.
Make this year the year to have that dreaded talk. When the time comes to put those wishes into action, you will be glad you did.
Image courtesy of shho/Freeimages
Joy Johnston is an Atlanta-based digital journalist who began The Memories Project blog in 2012 after her father died of Alzheimer’s. Her essays have appeared in best-selling anthologies, including Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias.