February 25, 2008

A few weeks ago, I had an estate-planning meeting with an elderly couple who have been clients of mine for many years.  Sadly, the wife’s dementia had advanced and the husband, while still as lucid as ever, was in a severely weakened state from a critical, physical illness.  As they were leaving our office, I asked him how they manage to get around. He explained that she is strong enough to drive, while he is sharp enough to direct her. While his response may seem like a punch line to yet another joke about Florida drivers, it does reflect a sad reality of life for many in our aging population.

The Good News and the Bad News

We are living much longer than ever and life expectancies are continuing to rise around the globe. On the bright side, not only are we living longer, we are changing the entire concept of the retirement phase of life. We are now seeing millions of American retirees embarking on new adventures and engaging in entirely new endeavors. They often enjoy decades of high quality, healthy living. However, with Americans living well into their 70’s, 80’s and 90’s, we are also seeing an enormous increase in the diseases that are more prevalent amongst seniors.

A Harsh Reality

In working with the clients of our estate planning and wealth management firm, I have observed, lamentably, that ‘Early Dementia’ and ‘Dementia’ appear to be increasingly creeping into some of their lives. In practicing in this community close to 30 years, I have noticed the subtle and not so subtle changes in some of my long-term clients over many years. That vibrant, ‘master of the universe’ entrepreneur that became a client at age 55, may be quite a different person cognitively now, 25 years later, at age 80.

Over the last few years, a growing number of you have turned to our legal office for advice concerning your declining spouse, parent, sibling, etc. I have learned of the toll that caring for an afflicted spouse can have on the healthy spouse. Often, he or she begins to observe the diminishment, and attempts to cover up or compensate for the other spouse. This can go on for months or years before help is sought or children and friends are let in on the “secret.” In many cases, the ‘well spouse’ can become frightened, overwhelmed, or depressed, as the situation becomes increasingly unmanageable.

Very often our client is the adult child of an affected senior in early dementia. This grown child is struggling to come to terms with the undeniable changes that are being observed in a parent’s behavior. The child may also be observing a dramatic change in the relationship between his or her parents. A once loving and respectful relationship can take an extremely acrimonious turn when the effects of Alzheimer’s disease affect one of the parents. The affected parent may be displaying inexplicably difficult behavior and mood changes that   can transform a usually well-mannered and reasonable person into an impossibly obstinate, aggressive, irrational brute. Undoubtedly, the behavioral change places the most stress on the spouse, who is losing the companionship of a life partner and who may feel that the earth has shifted; that the life he or she has known for so many years has been upended. At the same time, the decline of a parent can be profoundly painful and impossible to accept for the grown children. Losing the unconditional love and adoration of a devoted parent is one the most difficult experiences we face in the course of our adult lives.  

Caught in Between

In the case of a single, aged parent with early dementia, often it is the adult child of the afflicted that has to pick up the pieces. Needless to say, the challenge of caring for a parent while managing one’s own life, and maintaining responsibility for one’s own children, can be overwhelming. This is a scenario that, unfortunately, many of us in the “Sandwich Generation,” are now facing or will be facing at some point in the future.

The Financial Perspective

For spouses and children in this situation, I recommend you seek the appropriate medical care and counseling. I also recommend that you seek advice regarding the legal and financial planning ramifications. Taking care of all loose ends and having effective planning in place can help ease some of your concerns and can help you and your entire family better navigate this trying situation. For example, if the spouse who oversees the family’s investment accounts, insurance policies, etc., is in early dementia, there is still time and opportunity for a professional to help organize and aggregate all pertinent information with the individual’s assistance. It is also highly advisable for an afflicted family member who still has periods of lucidity, to make sure he/she has documented his/her current preferences regarding future medical care options, estate matters, etc.

For those of you who are reasonably healthy, especially if you are in your late 40’s, 50’s or 60’s, you should consider buying a good long-term care policy for yourselves or parents, while you can. Just as you would never consider being without health insurance, you should also be cognizant of the devastating financial and medical consequences that can be averted by purchasing long-term care insurance. Please be aware that the Medicare benefits that kicks in at age 65 do not provide coverage or reimbursement for the lion’s share of the expenses incurred in the caring for and management of an individual afflicted with dementia. Extended nursing home care, at a limited number of Medicare facilities is provided to the indigent only.

You Do Not Have To Face This Alone….

As the film, “The Notebook” depicts so poignantly, the spouse and grown children of an individual in the grips of this tyrannical disease are confronted with an ineffably painful situation. I know that there are some of you out there feeling this pain, along with the frustration and loneliness that often accompany caring for an afflicted loved one. I ask you to avoid isolating yourselves out of fear or shame. Please feel free to call me, if only to talk about what you are going through. I do feel that I have a good sense of the pain you are feeling, after talking with so many of you over the past few years. As with any trying situation you find yourself in, having a supportive person to vent to can provide you with some sorely needed reassurance and perspective.

Austin A. Frye, MBA, JD, CFP®

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