QUESTION: Would you write about dying from Alzheimer's?
There is a reason Alzheimer's is referred to as “the long goodbye.” From diagnosis until death it is generally a very long time, most often years. It is years of gradually watching a loved one decline and become less and less able to function in this world.
A person with Alzheimer's or dementia does not necessarily exhibit the signs of approaching death like someone with cancer or congestive heart failure does. The time line is off. Where as a person with a life threatening illness enters the dying process two to four months before death actually occurs, there are no such points of reference to guide us as to when death may occur with Alzheimer's. In a situation with disease, eating gradually decreases, sleeping increases, and the person withdraws from the activity of living to go inward. With dementia and Alzheimer's a person may eat less, sleep more, and withdraw into their own reality but those occurrences do not relate to approaching death. It is not until not eating becomes a big issue with choking, not swallowing, not chewing and thoughts of a feeding tube begin, that we can consider a person with dementia has entered the dying process.
If we don’t eat, we won’t live. The question for family/significant others is do you surgically insert a feeding tube or not. Do you offer food but not force it? Do you let life as the person has come to live it ebb away or do you medically intervene and feed a body in which the person has basically left?
There are many feelings and opinions about the feeding question. If at all possible ask the person diagnosed with dementia or Alzheimer's, while they are still able to make rational decisions, what they would like done when they are no longer eating. A lot of anguish is avoided when Advanced Directives are in place.
If there are no advanced directives and you are faced with the eating/not eating decision my question to you is this, “If you were in this situation what would you personally want done?” Use your answer as your tool in making the decision. There are no right or wrong answers to feeding or not feeding. The natural way that we all die if we are dying from disease or from old age is by gradually not eating and not drinking. By choosing to not artificially feed a person with Alzheimer's or dementia you are allowing that person to approach death in a normal way.
Something more about Dying From Alzheimer's or Dementia...
We need community when we are faced with such decisions- people who will listen, who can advise, who will support us. I invite you to join such a group of people at my Facebook Group End of Life Care and Bereavement. Professionals in the hospice field along with members who are caring for someone in their final act of living make up this group. It's a place to ask questions, learn from others, share your story and get the support you need. Knowledge reduces fear.