"While the mind and body may be lost to dementia, the heart and soul are timeless and will carry on.”
- Ronald Reagan
Karl Deter was a German railway worker in the late 1800s. His wife, Auguste, began to struggle with her memory and speaking. Her symptoms soon became more than Karl could handle alone. On November 25, 1901, he admitted her to the Institution for the Mentally Ill in Frankfurt, Germany.
Over the next five years, her condition gradually deteriorated, often repeating, “ich hab mich verloren” (“I have lost myself”). By the time of Mrs. Deter’s passing on April 8, 1906, she had lost almost all cognitive ability. Upon her death, her attending physician, Dr. Alois Alzheimer, discovered abnormalities and extensive atrophy in the cerebral cortex - the outer layer responsible for memory, language, judgment, and general thought. Auguste Deter was the first documented case of Alzheimer’s.
Alzheimer’s is the most well-known and common type of dementia, marked by severe memory loss and confusion. A few of the other major types of dementia are:
- Vascular Dementia – Typically a result of brain damage from a stroke, it results in reduced motivation and the ability to plan.
- Frontotemporal Dementia – The result of damage or shrinking of the frontal lobe of the brain. Memory is typically preserved, but there can be significant changes in emotions, behavior, and personality.
- Lewy Body Dementia – Abnormal proteins appear in nerve cells and impair functioning, which can cause hallucinations and dramatic swings in alertness.
There are approximately 6,900,000 cases of Alzheimer’s and dementia in the U.S., affecting more than one in 10 people over the age of 65. U.S. citizens 65 and older are now the largest and fastest-growing segment of the population, increasing at an estimated 10,000 per day. Considering the aging of baby boomers and advancements in physical medicine, we can expect dramatic growth in the number of families living with these illnesses. By 2050, the number of Americans living with these brain conditions is projected to nearly double to approximately 13 million.
Elder care is a maturing and growing field that includes medical specialists, attorneys, counselors, and advocates. The key to limiting the impact on our families is to do essential planning upon diagnosis. Once you have researched and found the right medical team, consult with an attorney about the appropriate next steps.
The Alzheimer’s Association lists the following outline for legal planning:
- Taking inventory of existing legal documents, reviewing, and making necessary updates
- Making legal plans for finances and property
- Putting plans in place for enacting your future health care and long-term care preferences
- Naming another person to make decisions on your behalf when you no longer can
These diseases of the mind are devastating for the afflicted but do not compare to the suffering of the families who love them. I have witnessed sibling relationships, marriages, and family finances devastated.
Nothing can prepare you for taking your father’s car keys or having the exact same conversation four times in an hour. No amount of planning or study can prepare you for the moment that you look into your loved one’s eyes and realize they have no idea who you are.
Once the medical and legal affairs are in order, there are a couple of simple but important actions that can ease the heartache for everyone involved. First, gather all affected family and close friends to communicate openly and directly about the short, intermediate, and long-term care plans and wishes. Second, video, record, or transcribe their story in as much detail as possible (a quick web search on “questions for grandparents” yielded some great lists ranging from 10 to 150 questions). These will be invaluable family memories and can be used to stimulate conversation in the later stages.
These are some of the most difficult and trying issues I have observed with families, but with planning and action, the burden can be eased for the benefit of all concerned.
If you would like to discuss this or anything else on your mind, please call anytime.
My Best,
Ryan