We have all witnessed friends and family members die slowly as a result of Alzheimer’s disease. In the final stages of this and other dementia diseases, there comes a time when your loved one can no longer speak, recognize family members, or move purposefully.

A Question of Quality of Life

With poor quality of life, many would choose to stop hand-feeding and hydration and allow the dying process to begin. However, long before that time arrives, you or your loved one lost the capacity to make and express that decision. If you no longer have an effective way to be heard, institutions providing memory care are legally and morally obligated to continue hand-feeding and hydration until the end.

A terrible characteristic of Alzheimer’s and other forms of dementia is that people may have lost all that made them who they once were, and yet, they remain physically healthy enough to continue, in that absent state, for many years.

Legal Documents to Communicate Your Wishes

Existing health care powers of attorney usually only address artificial nutrition and hydration, like feeding tubes and IV for end-of-life care. Until recently, the documents didn’t include hand-feeding. Despite your health care agent’s requests, caregivers would be required to continue cajoling, persuading, and insisting that you continue to be fed by hand. This process would rely on a primitive reflex in which touching the spoon to the corner of your mouth would result in an involuntary opening of the mouth. This could be misinterpreted as a desire to eat, and the sad situation could drag on and on without any way to intervene.

In especially tragic cases, where the swallowing reflex has become diminished, you could aspirate food and fluid into your lungs, resulting in pneumonia.

Thanks to pioneering efforts by End of Life Washington and End of Life Choices in New York, a dementia directive emerged to supplement existing health care directives and to specifically address this issue. When a person has become unable to feed themselves, can no longer use the toilet, and can no longer move or speak or recognize loved ones, the person may have expressed, in a dementia-related illness, that hand-feeding be stopped – or that feeding be restricted only to foods that they demonstrably enjoy. The dementia document further requests that the person be kept comfortable and out of pain through careful medication and other measures to relieve any anxiety, agitation, or insomnia.

Expressing Your Wishes Before It’s Too Late

Especially when the dementia diagnosis is first made, and while you or a loved one still have the capacity to make and communicate health care decisions, this supplemental health care directive must be considered. Creating a video expressing your wishes for end-of-life care is also a very good idea. That way, when you’ve become a silent, immobile presence in bed, caregivers can see you as you used to be, expressing wishes while you were still able to communicate them.

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