Physical and mental incapacity is not a fun topic and it is one most people love to avoid. But consider this:
A family member develops a serious cancer and surgery is scheduled for debilitating radiation and chemotherapy. During that time and perhaps forever, everyone’s life is changed.
A family member has an automobile accident or a fall and again, during that time and perhaps forever, everyone’s life is changed.
As a loved one ages, memory and behavioral issues become apparent and they are getting more serious as time passes. Again, during and perhaps forever, the life of everyone in the family is changed.
Any of those events and a wide range of other possibilities present questions about dealing with times of mental and/or physical incapacity that change lives in many ways. The mental incapacity issue is often phrased as whether a person is suffering from “diminished capacity.” Unfortunately, the law in most states, including Florida, is unclear on exactly what that means and on when a person crosses the line from being mentally capable to direct his or her own affairs, sign contracts, and make responsible personal and business decisions.
Similarly, the question of physical incapacity is equally vague. We have all seen people walking without a walker who should have one or doing things that were at best just barely within their physical ability to safely perform. Are they able? Perhaps barely so. Is it wise? Perhaps not.
In times of temporary incapacity, such as after surgery, after a serious injury, etc., at a minimum there will be changes for some period of time. There will likely be a period of rehabilitation and/or physical therapy. If so, discharge will be to a rehabilitation facility or perhaps home. However, even if the discharge preference is to the home, life will be changed because there may be physical changes needed to the home such as an easy entry tub or a ramp, etc., and there may be home health care and multiple visits from physical, occupational and rehabilitation therapists. Potentially, one issue becomes housing. Whether your loved one returns home may depend on some or all of a large number of factors. Included among the factors are the support system in place to attend to needs, the age and accessibility of the home, the length and quantity of rehabilitation needed, the person’s willingness to accept limitations, the extent of the person’s disability during the recovery and how close to full ability the person is likely to reach upon the end of care.
However, discharge is inevitable. Medicare coverage will only pay for a limited time (not more than 100 days of nursing home coverage and it has other limitations). If the person fails to fully recover and requires the assistance of others to manage day-to-day living activities, the problem of the Medicare limits rises to the surface. The cost of a stay in a nursing home or assisted living facility that offers a high level of care is far greater than living at home, far greater than independent living costs in an assisted living facility and can range up to or even above $10,000 per month. Home health assistance costs can easily stay above $2,000 per month and if the care needed is 24 hours per day, the cost may skyrocket to near $20,000 per month.
That is a financial disaster for all but the very wealthiest and it is an extremely trying time for everyone, even the wealthiest. A lifetime of savings can vanish in weeks or months. Once savings are nearly depleted, eligibility for Medicaid or VA benefits can become the answer, but those are complex answers and legal assistance may be necessary from skilled and capable legal counsel.
Other incapacity issues may rule out staying at home. Dementia or Alzheimer’s Disease or other issues of mental incapacity may present such difficult care and/or behavioral issues that staying at home may become impossible. However, the cost of facilities with personnel skilled and capable of staffing a memory care unit is also substantial. Many such facilities do not directly accept Medicare and many will not accept Medicaid at all, leaving a family with no good answers to questions that require rapid answers.
Most Americans have made it clear that they want to live out their lives, as much as possible, in their homes. Surveys have consistently shown that one of the greatest fears of those reaching the retirement years is the fear of being institutionalized. Many refer to it with the insulting term of “warehousing.” Terminology aside, where a person ends up living may become a major blessing of an enriched life or a major problem resulting in an unhappy and shortened life.
What are the alternatives? Physicians and rehabilitation therapists will hesitate to discharge a patient to a home environment which will prove to be unsafe. As a result, discharge to institutional care is common.
There are not always good alternatives, but knowing what is available and what is possible may give some hope where otherwise none exists. There also are steps that everyone should take to prepare for these dark days. After the fall and the surgery, after the accident and the time in the hospital, or after the sudden debilitating illness and the loss of physical ability you may be able to take some steps and deal with the losses. For some, however, it will be too hard and there will be fewer practical steps that can be taken.
What should you do right now?
There are a few relatively simple and extremely important steps everyone should take.
First, have advance directives. In Documents (and Protection) Everyone At Every Age Should Have, we discuss the different types of advance directives and the role each can play. Simply put, a well-written and thoughtful living will can make the difference between years of staying in a nursing home in an incapacitated and suffering state with accompanying expense and litigation and having your wishes be honored. If you have any doubt, look at the history of the Terri Schiavo case in Pinellas County. Terri Schiavo was 27 years old when she fell into a persistent vegetative state and became a national issue and spectacle for over seven years of litigation in state and federal Court. She did not have a living will or a health care surrogate designation.
At an absolute minimum, have what she did not. Have a durable power of attorney and a healthcare surrogate designation. The durable power of attorney allows someone you trust to assist you with your finances and assets at a time when you are incapacitated. The health care surrogate designation allows someone to help with medical decisions when you are incapacitated and unable to state your wishes. Add a living will for the additional peace of mind that your end-of-life wishes will be clearly stated.
Essential Information and Records
Second, admit that life is brief and uncertain. Take steps to help your loved ones in the event of an accident or sudden illness that either takes your life or leaves you incapacitated. See Essential Documents – End of Life Checklist for a comprehensive listing and program for you to gather your important papers and information. Don’t make one of the most difficult times of life harder by making your family search everywhere through your home for necessary documents and information.
Third, consider having an estate plan, something that is useful at any age. See the Guide to Planning Your Estate, a downloadable resource of the Christian Legacy Foundation. Estate planning is a wise investment of time and money, often saving far more than it costs. See A Few Estate Planning Pitfalls for information on what can go wrong if you don’t plan.
Plan for the Future
Fourth, look ahead and plan your future. Of course, your plan will miss the mark in many ways! Yes, your plan will have to be adjusted many times. We all know you will make mistakes and miss goals. But the only thing worse than making mistakes and missing goals is do nothing and just let the future happen to you. This is not a suggestion for you to become worried or panic-stricken about your future. Instead, this is a call for you to become thoughtful about what lies ahead as you age.
This planning should include financial planning including a serious look at the damage to your future that can come from inflation. See Foundations of Retirement Planning, 5 of the Most Common Problems Faced by Retirees, 5 More Common Problems Faced by Retirees and Inflation and Your Retirement.
Consider Long-Term Care Insurance Coverage
Fifth, consider long-term care insurance coverage. The reality of future health care and living needs is apparent by a simple glance at the needs of seniors for home health aides and home health and custodial care. Mental incapacity is a frightening possibility in our futures. The prevalence of dementia and Alzheimer’s Disease is a major concern. But the certainty of decreasing physical abilities and increasing needs for assistance is even greater.
If you can’t afford long-term care coverage, then as you age, start making adjustments in your lifestyle and home to accommodate the inevitable. See Aging in Place and Making Your Home Senior-Friendly among other resources available on our website for Seniors. Don’t wait until you are unable to make some of the adjustments and changes. Procrastination can be deadly for seniors.
If you are planning to rely upon family members, discuss it with them long before the need arises. If you are planning to rely upon your spouse, consider the truth that you are both aging and will likely approach limitations at approximately the same time and approximately at the same pace. The strain of one spouse being the sole caregiver for the other may rapidly advance the health problems of the caregiver.
Think About Future Needs
Sixth, think ahead to projected needs in ten, twenty and thirty years. If you may be the caregiver for a parent, consider all of the above for that parent well before the day of necessity strikes. If your parents are too far away for you to provide some assistance as the need arises, how will you help? Is a move in someone’s future so the family can provide assistance when needed? Don’t wait until it is necessary to discuss the immediate move.
If your home two stories? Are steps potentially difficult? Are there potential changes that you should be making to your home right now to prepare yourself and your home for the days of physical decline that lie ahead? Again, see Aging in Place and Making Your Home Senior-Friendly among other resources available on our website for such planning.
Seventh, know that you are not alone on this journey. If you are struggling with helping a family member suffering from some form of physical or mental incapacity or limitations, seek assistance. If you are struggling through your own personal limitations, also reach out. Before discharge from a hospital or rehabilitation facility, you should have an opportunity to speak with the discharge planner, social worker or person with far more knowledge than you about what help may be immediately available in the nearby community. Your church will have others who have gone through similar experiences in the same life stage and may have support groups or experienced people who can help. Often there are community groups with people who can offer guidance and help.
The main point to know is that you can and should reach out for the help needed.
Eighth, pray. Know that life is uncertain and no matter how carefully you plan or how capable you are, God’s plans are beyond our grasp.
8 “For my thoughts are not your thoughts,
neither are your ways my ways,”
declares the LORD.
Mental and physical incapacity, whether one or both, are likely somewhere in your future. The wise person considers the possibilities and plans and prepares to the extent possible, all the while, recognizing that life and eternity are in the hands of God.
About the Author
John Campbell has retired from a 40-year legal practice as a trial attorney in Tampa. He has served in multiple volunteer roles at Idlewild Baptist Church in Lutz, Florida, where he met Jesus. He began serving as the Executive Director of the Idlewild Foundation in 2016. He has been married to the love of his life, Mona Puckett Campbell, since 1972.