Note: This post is a part of a series detailing my family's fight with dementia and elder abuse.
Most people know about Do Not Resuscitate orders and similar preparations for care should the worst happen, but they may not include in their plans a long goodbye. As a part of estate and healthcare planning, it is important to prepare for end-of-life scenarios that include dementia. This includes consultation with a lawyer and those that will have power after you become incapacitated so the path during a crisis is clear. It also includes keeping family involved in your health planning and interactions. Options and decisions should also be publicized to your broader family and cleared with the people you plan to rely on for care to reduce their stress and yours. This preparation is an act of love for your family just as much as it helps you protect yourself.
My grandfather appeared to have done everything right. He had an estate lawyer with whom he set up a trust; we knew he had a DNR as he would often talk about not wanting to linger should he become a "vegetable"; he had a talk with my father, brother, and I about how we would all split his assets after he was gone. This preparation assisted him and us when my grandmother passed, and he was able to collect her death benefits and notify pension organizations in fairly short order. But there was a donut hole in his preparation, and none of us saw it until after he started showing signs of dementia. Alongside a provision that covered his passing included a separate line about incapacity that kicked in once he was declared as such by two doctors. All of the provisions for taking over his trust were triggered by this provision. His appointed the successors, my brother and I, could only take over and have the power to manage his assets in his stead if he was so far gone as to be considered incapacitated. And this line, one that seemed straightforward at first glance, turned out to be an incredibly high bar in the middle of a crisis.
Understandably, doctors are loathe to declare someone as incapacitated based on the word of panicked relatives alone. My grandfather was gregarious, if forgetful, and he seemed collected at times of low stress like after a hospital stay. Through a steady five year decline, he appeared lucid enough to sow doubt that anything was actually wrong at all! His dementia made him unable to make and keep regular doctor appointments, so it was impossible to obtain the opinion of a primary care physician capable of a longitudinal assessment of his mental state.
This gradual breakdown of personal interaction also extended to family relationships. His personal choices to bring in strangers to the house had also alienated his family from his day-to-day health. He became combative when we tried to intervene in his healthcare or suggest he was being adversely impacted by the people living with him. He would argue that he was well enough to live independently and that he would rather die than go to a home. Truthfully, his moments of lucidity caused me to wonder if he was fine, he didn't see anything wrong with the people taking advantage of him, and that maybe I had misjudged his character my entire life. I even had the heartbreaking thing that maybe he was just an asshole in disguise this entire time. This all brought out one of the most pernicious symptoms of dementia: it can make victims actively antagonistic to caretakers like doctors and family.
Without two statements of incapacity, we could not administer any part of grandfather's estate even if it was obvious to us that he was no longer capable of doing so. Banks turned us away even while they acknowledged my grandfather was being shadowed by his abusers in and out of the branch. Without the trust paperwork in order, the bankers could barely acknowledge that he was a customer. Repeated hospitalizations for failing to take his medications properly were met with stonewalling by recovery centers when we set about trying to obtain a psychiatric evaluation. The doctors had only seen him for a few weeks, and most were used to judging physical, and not mental, fitness.
To counter this wall of professionalism, we built strong ties to his in-home care nurses that began to visit once or twice a week after a particularly egregious health scare. Luckily, the attending physician at the home health company was also doing rounds at a facility connected with the hospital my grandfather would go to in an emergency. This created a chain of custody for his medical history that eventually lead to him being declared incapacitated. After that piece fell into place, the planning of the trust finally worked to his benefit. And my brother and I were able to manage his healthcare, his finances, and his safety with the full force of the law backing us up.
Preparing early to allow affirmative control of an estate by trustees rather than aging relatives can save time and heartache for both. Those given control can dispute fraudulent transactions, process evictions for abusive house guests, or allow trustees to deal with police while enjoying the legal backing of the estate's property rights if situations escalate. Setting up your aging relative to retirees CEO to become Chairperson of the Family allows a family Board of Directors to take on the burden of management, but it also invests capable individuals with the power to react with their full facilities.
If I have advice, it is to protect your assets within a trust or similar legal framework, but make the bar for taking control in the case of your partial mental incapacity be lower than the one for your total incapacity. My grandfather chose to protect his assets with a trust having multiple co-trustees once either he or my grandmother passed. The trust held all assets and property, and appointing multiple co-trustees meant everyone with a stake in my surviving grandfather’s health and well-being had a say. My brother and I, even while living in different states, had to stay informed and consent to any material changes in assets or income. The same attorney that helped draw up the trust also helped with DNR and Medical Power of Attorney documents that were vital in ensuring my grandfather received care even as he stopped being able to advocate for himself. The one part of the trust that made it difficult for us in the case of dementia was the requirement for an assessment of capacity before co-trustees would assume control. The fact that we could not act on his behalf in terms of his property or financial health, meant he lost almost $100,000 through theft, fraud, and property damage. I am still unsure if estate law has been able to provide a middle ground in this area. Please talk with your estate planner, especially if you have a history of dementia in your family, to find out what your options are in the current legal system for your jurisdiction. Being prepared for dementia can be just as important as prepping for incapacitation from a stroke or an accident.
In the end, everything you do with and for your family will ease the burden of dementia on them. Talk to an estate planning professional about your options, as a family, to prepare for long-term illnesses that may cause diminished capacity. Keep in regular contact with your loved-one's doctors or assist your loved ones in obtaining such care. Discuss options before symptoms start to appear instead of after the difficulties mount. The interaction of legal and medical preparations will protect both your loved one and you should they decline.
