Dear Dr. Camardi,
Some years ago, we took our parents to your office for an evaluation. After a long process that we realized was necessary in both my parents’ cases, you very kindly offered to discuss advance directives and living wills. Well, as you may have tried to forget, my father was fine with all that but Mom went off the rails because she refused to talk about anything having to do with dying. A while later, we came back, and she was in a better mind-set so we got all the paperwork done. Your last words haunt us to this day: “Make sure you make copies and give them to your lawyer.”
Fast forward a few years, when we moved to Kansas to be with our daughter and her family. During this time, our dad died and, from a practical sense, the inevitable went rather smoothly because of the work we had done with you. However, Mom did not take his passing well, and during her grieving, she tore everything up — the living will, her advance directives and her estate will, plus the copies, because it brought “bad luck”!
At that point, we realized she was showing signs of dementia, and we had her evaluated by her doctor, who found her to have mild to moderate dementia.
Now, we have nothing in writing and no guidance on how to proceed when the Good Lord calls our mother. What do we do?
— Salina, Kansas
First things first: In the event that Mom becomes ill or is injured and there is no planning in place, medical decisions tend to be directed to the spouse. If the responsibility is refused or if the person is not capable (such as in your case, where the spouse is deceased), then decisions generally go to the oldest child.
No matter how you decide to proceed, please put all legal documents in a safe and secure location.
Contact an elder care attorney to handle the necessary legal issues. Then, ask your current physician for a geriatric evaluation consultation for your mom with a board-certified geriatrician and a referral to a social worker to assist in navigating the medical system.
Although your mother’s actions may seem shocking to you, I have run into such behavior with surprising frequency over the years. As far as I’m concerned, anyone older than 55 should have advance directives in place so that if they are rendered unconscious or otherwise incapacitated, those who remain can fulfill the patient’s wishes in a dignified manner.
When it comes to the prospect of dementia, advance directives are critical because the disease is progressive. A healthy 55-year-old may not show any signs of dementia, but by the age of 65, the process could slowly begin. Think ahead to plan ahead.
As planning begins, the issue of competence will need to be defined. Let me be clear: A diagnosis of Alzheimer’s disease does not necessarily indicate incompetence. Many people have difficulty with this concept, but a patient still has the right to make a “poor” choice, even if family members don’t agree with it. A patient’s competency should be evaluated after a series of poor choices (usually involving finances) or an especially grave or serious choice that puts a patient or others at risk (for example, leaving food to burn on a stove).
An evaluation will assess the patient’s factual understanding of concepts; sound decision-making and cogent expression of choices; appreciation of what a choice’s result could be; and reasoning of the decision’s pros and cons. Medical professionals make the final determination, and the results are reported to the court.
If a patient passes the evaluation, he or she is determined to have the mental capacity to make choices on his or her own. If the patient fails to demonstrate competency, your attorney can petition the court for a competency hearing, after which a trustee may be appointed to oversee Mom’s affairs. Although the process can be cumbersome, it’s doable — and trust me, you are not the first ones to face it.
There are, however, better ways to explore advance directives before reaching this point. A worksheet titled “Alzheimer’s Disease and Dementia Mental Health Advance Directive” (available online) spells out many “little things” that loom large when someone must assume responsibility for them — issues such as pet care and adoption, who gets what in a will and why, and even which bank accounts will cover taxes versus routine costs. These issues might seem insignificant in the grand scheme of things, but they can take on a life of their own when there is no direction.
The document’s most vital assistance is a subtle one: It makes everyone gather around the patient and communicate! For many reasons, communication among family members often shuts down over these issues, which can lead to bitterness later on.
The time to avoid those conflicts is before the patient’s demise, not after. Clearly define and explore the topics of living wills, health care proxies, estate planning, powers of attorney and more now. Working with a social worker is strongly recommended.
When all is said and done, the greatest gift we can bestow upon ourselves and our loved ones is peace of mind. Having an advance directive in place will grant that gift when we all need it most.