WISDOM AND ADVICE FROM PEOPLE LIVING WITH DEMENTIA

What are the day-to-day challenges for you?

1. Some lost sense of what day of the week, month, and year it is
2. Forgetting scheduled tasks, appointments, and engagements
3. Withdrawing into comfortable settings (like my office and computer, and in some sense avoiding too much interactions with others)
4. Attempting to maintain normal activities and responsibilities (handling finances, schedules, appointments, etc. without overly depending on others or relinquishing my desire to be "in control")
5. Accepting the offered help of others when I often feel that I am losing control and direction of the important senses of my accountability

Is there anything you would like the community to know about living with dementia?

1. Dementia is a frightening attack on my selfhood (in terms of who I was in the past, in terms of where I am today, and in the dread of what my future might bring).
2. Dementia overtakes my integrity as a whole person. It scatters the core of my being, my integrity, my wholeness, my future, and the essence of who I am and who I want to be.
3. I often have little hope and little confidence that the slow slide down the track of dementia will ever be halted or altered. Please don't try to encourage me that "everything will be alright." While that is a nice goal, the reality is that your attempted encouragement actually heightens the reality that "everything will NOT be alright" for me and many others. False assurances or wishes for the best would better be withheld. Instead, listen to the broken-hearted sufferers. Don't try to lift them up. Just hold them in your arms and give them love, compassion, acceptance, forgiveness, and your faithfulness.

What resources and services have been most helpful about living with dementia?

1. When I recognized that I might be following my mother into the kind of dementia that she developed and that eventually took her life, I decided that I would take whatever steps I could to address the attempts to finding solutions for dementia, not just for myself, but for all who are and would face this debilitating disease. Living at that time near the University of Tennessee, I sought out a UT doctor who was beginning a clinical trial study on Alzheimer's. Before we could get deeply into that study, however, my wife and I were asked by our youngest daughter to move to Orlando so that we could assist her and her husband (both of whom are airline pilots) in caring for our two grandchildren. UT suggested that I search for a trial study in the Orlando area, and that eventually led us to Compass Research, which now has become Bioclinica Research. Michael Lesnett and the Bioclinica staff have led me through an entire clinical trial, and they continue to do the follow-up of the clinical trial. They have been wonderful specialists, but even more wonderful friends.

What sustains you?

1. I am an ordained Baptist minister, who has served as pastor, minister of education and music, Baptist university professor, and a publisher of curricula and resources for churches. Currently I am a member of a United Methodist Church. I cannot fully express how important the congregations of which I have been a part have encouraged me and upheld me through all the ups and downs in my life. I would not claim that God predestined me for being an Alzheimer's victim-I'll leave that to those who currently seem to tilt toward high fructose corn syrup as at least a partial problem in the Alzheimer's scourge. But whatever the cause, and whatever the ultimate solution might be, I have decided not to blame God or my fellow citizens for what I am dealing with.

2. Sometimes however, those who blaze the path for others face the hard consequences. We know that none of us has THE solution; but working together for an important advancement, we can take the baby steps into an uncertain future with courage, anticipation, and hope. Working together as a team, from the victims of the disease to the best strategists for a solution, we will take important steps toward solutions. We will not give up! We will not give in or retreat! We WILL take the steps one-by-one until we know what the enemy is, what causes it, what can defeat it, and what will eventually set free many who have struggled with Alzheimer's as well as those who don't yet know that they are on the rough and bumpy road.