Sadly, many of us have witnessed the slow and dehumanizing death of loved ones and friends suffering from Alzheimer’s. In the final stages of this and other dementia diseases, your loved one can no longer speak, recognize family members, or move purposefully.
A Question of Quality of Life
Many would choose to stop hand-feeding and hydration and allow the dying process to begin due to poor quality of life. However, long before that time arrives, you or your loved one lose the capacity to make and express that decision. If you cannot communicate effectively, memory care institutions must continue hand-feeding and hydration until the end.
Alzheimer’s and other forms of dementia have a terrible characteristic: people may lose all that made them who they once were. Yet, they remain physically healthy enough to continue living in that absent state for many years.
Legal Documents to Communicate Your Wishes
Health care powers of attorney usually address artificial nutrition and hydration, like feeding tubes and IVs for end-of-life care. Until recently, these documents excluded hand-feeding. Caregivers must still try to persuade you to be fed by hand, despite your health care agent’s requests to stop.
This process depends on a primitive reflex: touching a spoon to the corner of your mouth causes an involuntary opening. People may misinterpret this as a desire to eat, so the situation can continue indefinitely without intervention. In tragic cases where swallowing reflexes diminish, food or fluid may enter the lungs, causing pneumonia.
Thanks to pioneering efforts by End of Life Washington and End of Life Choices in New York, a dementia directive now supplements existing health care directives and specifically addresses this issue.
This directive applies when a person cannot feed themselves, use the toilet, move, speak, or recognize loved ones. It allows stopping hand-feeding or restricting feeding to only foods they demonstrably enjoy. It also requests keeping the person comfortable and free from pain by using medication and other measures to relieve anxiety, agitation, or insomnia.
Expressing Your Wishes Before It’s Too Late
When you or a loved one first receives a dementia diagnosis and still can make health care decisions, consider this supplemental health care directive.
Creating a video expressing your end-of-life care wishes is also a good idea. When you become silent and immobile, caregivers can see you as you once were, expressing your wishes while you could still communicate.
Please contact our Sherwood or Searcy office at 501-834-2070 if you want to discuss a dementia diagnosis or how to create a legal document reflecting your or your loved one’s wishes. We look forward to working with you.