A Major Crash on the Retirement Road: 24/7 Care

By Rick Law of the Estate Planning Center at Law Elder Law in Aurora, IL off of the I-88 tollway

Emily and John did not even make to retirement before they had to switch gears from happy young couple with three sons to a family in crisis.  John had begun to show signs of extreme nervousness. People began to call him “high strung.”

Emily knew this was not the man she married in her twenties.  Now, at age 35, he was becoming more and more irritable and had even developed what she thought were “nervous tics.” After seeing several doctors who prescribed everything from antidepressants to possible shock therapy, it was finally discovered that John had Huntington’s Disease.

This is a genetic disorder that is hereditary, but John’s mother was in her sixties and had no symptoms of the disease.  John’s father had apparently had the illness. John remembered that his father had begun to be very agitated in his thirties and often exhibited moments of rage, but the family attributed this to excessive drinking. When John’s father died of a heart attack at 41, no one suspected anything else.

The first time we saw Emily, her first words to us were, “Don’t tell me to divorce my husband! Every other attorney I have seen has told me to divorce my husband.” John was 46 years old then and had been symptomatic for more than ten years. His disease had advanced to the point that he needed to be placed in a care facility.

The children were 12, 15, and 19 – and each of them has a 50 percent chance of having this disease. We worked with Emily to place her husband and moved him sixteen times in five years because of rage issues and some inappropriate behavior that can accompany Huntington’s. We did her estate plan, which included Special Needs Trusts for each of her children in the event they have Huntington’s. We became her advocate through the Medicaid process and all the facility moves. We became her friends and trusted guides for almost six years.

At John’s funeral, Emily said  “I could never have survived this without you.” The journey can be overwhelming and the families need someone to be there, someone to turn to for advice or just to listen.  Truth be told, Emily’s journey is not over. She is still waiting to see if her children will have this dreaded disease. You can test for the gene, and if you have the gene, you have the disease.  However, if you test for the gene and you have it, you will never get insurance. This creates a terrible Catch-22 that results in a ticking time bomb for the children of a person with Huntington’s Disease.

Much of our practice involves meeting with wives who have become full-time caregivers for their husbands. When a husband develops memory or mobility issues, the wife will sometimes try to cover up for him and hide his decline from the children.

We have spent a great many hours working with World War II veterans and their wives. These are proud men who for many years have been in control of the family and the family finances. They have great stories. They also possess a great photograph – the one of them in uniform. Sometimes they are standing in front of their plane or by their barracks. Depending on the branch of service, the photo background varies – but there is always this photograph. It is interesting when they tell us stories of their wartime experiences at our meeting. The children seem amazed and tell us later that “Dad has never talked about the war.”  These men are trying to hang on to some semblance of control and remember the things in their lives that mattered. They are reviewing their legacy. They have been the breadwinner in the family and the leader in the home. Some of the wives we meet have never driven a car or written a check. They were now in a position that they must “take over,” and it is devastating to both husband and wife.

The wives tend to feel that they need to keep their husbands at home and provide the care, even when it is affecting their own health and safety. Sometimes the children are insisting that Mom place Dad in a care facility either because she can no longer lift him when he falls or she can no longer keep him (or herself) safe from the dangers caused by his dementia. One woman said, “You are asking me to put the love of my life in a nursing home!” It was not a real protest, but more a statement summing up how she felt in the midst of her crisis. My heart breaks when I see these strong men frightened and confused about what will happen to them and what will happen to the wife that they loved, married, and made a life with, often for more than a half a century.

If you’re ready to start getting your estate in order and secure your assets for the “worst-case” scenario, please give our office a call at 800-310-3100. Your first consultation is absolutely free.  We’ll let you know what steps you need to take, right now, to protect yourself and your family.  Call now.


Rick L. Law, Attorney, Estate Planner for Retirees.

Rick was named the #1 Illinois elder law estate planning attorney by Leading Lawyer Magazine. He has been quoted in the Wall Street Journal, AARP Magazine, TheStreet.com, and numerous newspapers and articles. Rick is the lead attorney for Law Elder Law, LLP, focusing in Estate Planning, Guardianship, and Nursing Home Solutions. His goal is to give retirees an informed edge when it comes to dealing with an uncertain future.  Get flexible retirement strategies that work during good times and bad, plus information on how you can save your home and assets from being used to pay for long term care. 

Our Reviews

My wife and I had our first child three years ago. That’s when we decided to set up a trust, should anything happen to either of us. We reached out to Zach Hesselbaum to help us out. He was very thorough and professional throughout the whole process. Zach went above and beyond to make sure that we understood every detail of setting it up and he did an excellent job. We recently had our second child a few months ago. With the new baby, he helped us make the necessary revisions to the trust. Zach made this process great for us! I would definitely recommend using him for any of your estate planning needs!

Tom G., Naperville, IL