My name is Lee Krautkremer and I am 74 years of age. On June 30, 2006, I retired from the life-care retirement industry after serving 18 years as a marketing director. On that same day, my physician revealed to me that tests taken over the past 2 plus years indicate that I am suffering from early effects of Lewy body dementia along with inherited essential tremors. The latter is caused by a gene that afflicts others in the Krautkremer family as well.

I was recently invited to submit an article describing my thoughts on quality care in long-term care, and how I feel about the time when I shall require intensified medications, therapies, and interventions. To do so, I will first describe my present condition and then outline my hopes and fears regarding the future.

Currently, I deal with persistent tremors about equally in each hand. Carbidopa-levodopa (Sinemet) and propranolol (Inderol) seem to be the most effective tremor relief for me. However, moments of stress seem to override the medication. I also take donepezil (Aricept) to help with my memory challenges related to the dementia. None of the medications are capable of curing these ailments. In time, I am told, the benefits will wane to the point of ineffectiveness. There are times I cannot sleep at night, and then there are times I just simply fall asleep by sitting still in place for a few minutes. At times, my stomach becomes upset with the medications. I experience difficulties with my balance and have muscle weakness in my legs, and have a tendency to walk with a stooped posture. Resorting to the use of a cane has improved these problems. My short-term memory is becoming more bothersome, particularly in remembering to take my medications on time. Trips, lasting longer than 3 days, upset my daily routine and tend to create bodily function problems.

My regular activities include watching TV movies, playing cards and board games, volunteering, walking, going out of the house with my wife to run errands, attending church, dining out, and 1- or 2-day bus trips. I know that all of these facts about my condition and personal interests are important to any future caregivers. Knowing them will help people to know me better as a person.

What I fear, as these diseases progress, is the potential loss of companionship with my spouse, possible inappropriate behavior toward my family, friends, other residents of where I live, and caregivers. I also fear losing control of my privacy, but what I fear most is the loss of my dignity.

People need social interaction, which often is difficult to attain when one remains in his or her home of many years. Given this need and my experience, I am planning to enter a life-care retirement community. My plans include both my wife and I sharing the benefits of the life-care concept for the remainder of our lives. I hope to find a place that is secure enough to protect me from elopement, where I have a high trust level in my caregivers and where access would be provided to a place of worship on Sundays, as well as a place for daily meditation.

I would like to be treated as if I were a loved and respected family member and hope that my caretakers would have the compassion to understand that I may be trapped in a body and mind that I have no control over, treating my behavior as part of the illness. I would like them to recognize that they should not take any of my actions personally. I am comfortable that this plan for my life will become an intrinsic benefit in the remaining years for my wife and me.

I must also be cautious to not place too much stress on my spouse and immediate family members that their own health would be at risk because of it. They endure the same losses I do, only in a different way. They will lose the person, their company, the celebrations, and the conversations with their loved one.

Recently, my wife and I attended the second meeting of an Alzheimer's/dementia support group. Our presenter started the meeting by asking whether we all were aware that our condition would ultimately contribute to our demise. Many of us raised our hands in acknowledgement. She then inquired how we felt about this fact. A number of 1-word responses filled the room in rapid succession: cried, betrayed, angry, confused, depressed, cheated, bitter, and unfair were among them. I thought to myself, what a great way to start this group. I feel that our presenter and the group will not "sugarcoat" our sessions when discussing our condition in depth, which hopefully may lead us to greater longevity. It is important to acknowledge the reality we face and embrace the chance to plan for the future.

My experience in the life-care industry has taught me many things, and most importantly, has brought me to the reality of planning ones' life. Years ago I coined an expression to wit: "Tomorrow is the best reason for a plan today." I personally feel more empowered in facing whatever the future may bring by living this principle.

With dementia, having a happy and meaningful existence is key and is the goal to strive for everyday. When I hear the stories of people who have overcome other deadly diseases, I often wonder how they were able to accomplish such a feat. It seems to me that most often when I hear their stories, 3 words are consistently repeated: NEVER GIVE UP, NEVER GIVE UP, NEVER GIVE UP!!!!

Section Description

This column is a place to meet persons with dementia or care partners of persons with dementia and share their stories in order to enrich our understanding. If you know of a story that needs to be shared, please contact the editor at PO Box 39, #2107 Highway #215, Walton, Nova Scotia, Canada B0R 2R0 ([email protected]).