The Long Goodbye – Living with Alzheimer’s and Why You Need an Estate Plan

Alzheimer’s disease has made numerous headlines recently. Country music legend Glenn Campbell won a Grammy award for his heartbreaking song “I’m Not Gonna Miss You” which provides insight into the singer’s steady decline after being diagnosed with Alzheimer’s disease. In addition, the movie “Still Alice” was released, which is based on the best-selling book (same title). ABC News also did a report providing a glimpse into what life is like with Alzheimer’s. Check out the video here:

It’s clear that Alzheimer’s is a cruel and tragic disease. It’s often referred to as the “Long Goodbye” because it doesn’t hit you all at once. You steadily fade away and, despite having the appearance of normalcy to the outside world, your mind is being ravaged by this awful disease. In some rare cases, people as young as 50 years of age have been diagnosed with early onset Alzheimer’s.

In my family, my father was diagnosed with Alzeimer’s at the age of 70 and his estate plan did not address the issue of mental disability. Well, I should say his estate plan addressed mental disability like many plans I have reviewed since that time. My father had a boilerplate form called a “Health Care Power of Attorney or Advance Medical Directive.” In that form, there was a standard definition of disability that read as follows:

“If 2 licensed physicians determine you are disabled” then you are considered disabled.

If this generic definition of disability is satisfied, another boilerplate list of powers kicked in for his designated Health Care Agent (who was my mom). The list of powers looked liked the following:

(a) you can check me into the hospital;
(b) you can check me into a nursing home;
(c) you can keep me home and give me home based medical care. The decision on which path to take was left to my mom and the family.

I have several issues with this type of disability planning. First, can any two doctors anywhere in the world determine I am disabled or does it have to be my doctor? Also, I prefer to have one or two family members involved in making the decision whether I am able to manage my financial affairs or not.

Alzheimer’s is not a disease that you just wake up with one day. It is a progressive, degenerative disease where the family members have the best ability to determine the timing of when disability is a real issue. As far as the list of generic powers, my advice to my clients is to not burden your family with making that decision for you as it is very difficult emotionally and financially. My preference is to be taken care of at home as long as reasonably possible both financially, healthcare wise, and emotionally.

We are exploring the financial options with our financial advisor on my financial options. Collaboration between the estate planner and financial planner in my father’s plan was non-existent. This is a big mistake that I see many people make. In my family, it would have taken tremendous pressure off of my mother if my father explained (which I believe he would have done if he was counseled properly) his wishes not to burden the family beyond a specific point and provide care outside of our home. My mother did not know his wishes and she kept him at home long after it was financially reasonable (as well as emotionally). My father’s retirement was exhausted by the time he passed away due to the high costs of home care and my mother still feels the financial impact of my father’s illness.

You and your loved ones need to be prepared and be counseled on the relevant issues. If you have a financial advisor, then they should be included in the conversation so that good decisions can be made. Do you want to be taken care of by a particular person or be admitted to a particular facility? Do you have enough funds in your estate to cover those costs? These are important questions that need to be answered.

For more information about properly addressing this issue in your estate, take the time to speak with an experienced estate planning attorney in your area.