A comedian whose career spanned 40 years, Gene Wilder was 83 when he died in August from complications from Alzheimer’s disease. He kept his illness hidden from most people for at least three years. The star of legendary comedies Blazing Saddles, The Producers and Willy Wonka and the Chocolate Factory reportedly wanted his fans to keep laughing over his large body of work rather than mourning the tragedy of his final years.
According to experts, keeping Alzheimer’s a secret is a common approach
Most Alzheimer’s sufferers hide symptoms for as long as possible for a variety of reasons.
Losing control. Those who are alone fear they’ll lose control of their own lives if their family or friends think they can no longer care for themselves and/or handle their own affairs.
Shame. There is also considerable shame attached to this disease, and many people who are in the early stages of dementia are understandably in denial. It may be family members, alarmed about cognitive changes, who finally force the issue. Interestingly, those patients who have advanced education or who have used their brains the most during their careers who are most successful at hiding their disease the longest.
Loss of friends. In another blog we talked about a New York woman who was diagnosed with early Alzheimer’s, and her therapist advised her not to tell her friends for fear they would abandon her. Her solution? She stopped going to that therapist, told her friends and, indeed, did lose a few friends who did not have the capacity to provide the support she would need.
Dementia and Alzheimer’s are becoming common among the elderly and, unfortunately, the incidence will increase as our baby boomer generation ages. An estimated 80% of us can expect to experience at least some degree of dementia in our lifetimes.
Being diagnosed with Alzheimer’s creates immediacy
If someone in your family has been diagnosed with Alzheimer’s disease, it is critical to move quickly to create or update a Living Trust and other estate-planning documents before the person deteriorates and is unable make decisions or sign legal documents.
Creating a Power of Attorney to manage income and assets
The Power of Attorney, called an agent, is usually a trusted family member, domestic partner or friend, who will make financial and other decisions when the person with dementia (the principal) is no longer able. Power of attorney documents should be written so that they are durable–valid even after the principal is incapacitated and can no longer make decisions. The agent is authorized to manage and make decisions about the income and assets, according to the instructions, and in the best interests, of the principal.
An Advanced Healthcare Directive to make decisions about care
An Advanced Healthcare Directive empowers a trusted friend or family member to make healthcare decisions for the principal when he/she no longer can. This includes choosing doctors and other providers, including hospice care. It also includes treatment and care facilities. For a person in the later stages of dementia, the healthcare agent also may make end-of-life decisions, such as giving do not resuscitate (DNR) instructions to healthcare providers. For the person with dementia, it’s important to talk through his/her wishes early on to make sure the agent not only understands but agrees to act on his/her behalf.
A final caveat . . .
When a person suffering from Alzheimer’s disease signs new estate-planning documents after the disease has progressed, it greatly increases the chances that someone in the family may contest the validity of the documents in court. Getting these end-of-life documents in place as soon as possible after the disease’s diagnosis helps assure that they will not be challenged.