CNN Money profiled a couple, Steve and Pam West, on December 13, 2012. Steve was diagnosed with ALS in 2008, a progressive disease that is always fatal. At some point, Steve will literally be unable to breath. As it was at the time the article was published, ALS had taken from Steve the use of his arms and legs.
I would encourage everyone to read the article and look at the multitude of decisions they faced (http://money.cnn.com/2012/12/01/pf/terminal-illness.moneymag/index.html) as they confronted Steve’s terminal illness. It’s their decisions and the planning they did before Steve’s diagnosis that I’ll focus on. I think they provide a model for anyone facing end of life planning, and this planning is best done before you’re diagnosed with a debilitating disease.
One of the first decisions they faced was whether to stay in their three-story home or not. They decided to stay; their home was close to rail transportation and surrounded by friends who wanted and were able to help. The decision to stay did require they make modifications to their home to prepare it for Steve including:
- Adding hand railings on stairs and in the bathroom
- Installing an elevator
- Making a bathroom wheel chair accessible and navigable
- Enlarging a bedroom to accommodate a medical bed and equipment
- Building a ramp to the front door
The total cost of the home modifications was $54,000 and none of it was covered by insurance.
The second decision category Steve and Pam faced was work; both were professionals and business owners. They both elected to work as long as possible to help defray the increase in medical expenses facing them. Steve transitioned to working from home and worked until earlier in 2012 when it became impossible. Two years after Steve’s diagnosis, Pam stopped working to care for him full-time as it was very difficult to do both.
Navigating the maze of medical equipment and health insurance has been the largest category of decisions Steve and Pam have dealt with. Steve’s private health plan was ineffective for an ALS patient.  Pam found herself working through what insurance would cover, what it didn’t cover, and working through waiting periods for equipment approval. She even learned to be creative by purchasing Steve’s power wheel chair direct from the dealer rather than through the insurance company. This saved them $5,000.
Transitioning to Medicare when Steve qualified helped immensely as did getting plugged in with the ALS Association. The Association provided a full range of care and assistance for Steve, emotional support for Pam, and even loaned equipment saving them thousands of dollars.
One of the more difficult decision areas they faced was when to end care. Steve could be kept alive longer if he was willing to be on feeding tubes and a ventilator; however they decided that was not for them.
The overriding area that began before Steve’s diagnosis was their financial planning. Through Steve’s guidance, they have retirement and investment accounts that have been invaluable as they have confronted ALS. He has life insurance to help defray some of the loss of his income when he dies.
Pam’s not been a part of Steve’s financial decisions and they utilized a financial planner to help create a plan for the two of them up through Steve’s death and then for Pam as she continues life on her own. The planner’s involvement helped them identify what needed to be done now to lessen issues with probate, provide Pam access to funds to make ends meet when she returns to running her company.
There are several lessons we can learn through the West’s story including:
- Start building your financial resources now. Don’t wait and don’t think you’ll be able to work up to the last day. Build for retirement and save for an emergency.
- Review your insurance now. Do you have adequate health insurance? Even with the coming government health plan there will be co-pays and holes. Know what they are, how they could impact you.
- Do you have short term and long term disability insurance? These could be very helpful if you or your loved one is unable to work.
- Do you have your own life insurance? If you only have coverage through your employer will it remain in effect if you can’t work? Is there enough life insurance to replace lost income? For how long?
- Seek out support. The West’s did this medically with the ALS Association, emotionally with friends that would bring food and help with Steve’s care, and financially. We all need other people at times to help us.
- Know what you want and communicate to your family. Steve and Pam made the difficult decision on whether to prolong his life through extraordinary means and decided against it. Whatever decision you make, be sure to share it with your family so they know your wishes (especially if you are a blended family).
What decisions would you make if this were you? Share your thoughts and questions with us in the comments section of our blog or on our Google + and Facebook pages. I know we’ll all learn from each other.
