A Cautionary Tale — How Not To Prepare For Aging

 What follows is a composite of a story (really a family tragedy) that occurs again and again as people age.  It has to do with aging parents, the onset of dementia, and insufficient preparation for the future.

 A husband and wife, let’s call them John and Joan, have 2 children.  They have had middle-income earnings and saved for their retirement.   They now live in the (big) house where they raised their children.  Their income comes from social security, and IRA, and a small amount of income from a securities account.  They are 85 and 86 years old.  

During the past few years, they have started to progressively decline mentally and physically.  This is no surprise, since they are both older than average life expectancy.  (Most people over 85 have some sort of dementia).  John and Joan meant to have estate-planning documents (wills, health care proxies, powers of attorneys, etc.) but they never got around to it. 

John and Joan cannot take care of themselves in the house.  They are barely able to pay their bills (although they have enough money to do so, and are confused about what they have and what they can afford.  They have trouble climbing the stairs.  They are both still driving (small distances, slowly), but clearly are a threat to themselves and others on the road.  (Their refusal to stop driving is a symptom of their dementia.) 

John and Joan are only able to stay in their house because of the assistance of their daughter and her husband, who are driving 480 miles every week, and taking turns staying with the parents.  They are leaving their children (young adults who live with them) at home with only one parent at a time.  The daughter and her husband are at the end of their rope.  

John and Joan want to stay in their home on some days, and on others, they want to move to an assisted living facility.  When a lawyer came with power of attorney and health care proxy papers, they decided they did not want to name anyone.   With proper organization, they could hire home health care workers during the day, and continue to stay in their home for a while.  The help they need to stay in their home wouldn’t cost very much.  

The parents are getting very close to the point where, if they do not voluntarily accept help from their children, things will spiral down, and the parents will be in danger.   Then the children will need to ask for an involuntary guardianship/conservatorship.  The children do not want to do this, because they love their parents, and know their parents will hate them for it.  It’s not a good way to end a family history. 

So, if you are in your sixties, seventies, eighties (or older), do your planning now.  See the lawyer of your choice.  Try to plan for a smooth transition between you and the ones you trust.  Make it easy for your loved ones.  Otherwise, you will sadly be leaving them as a burden, which I’m sure you don’t want to do. 

© Laurie Israel.  2011.

How Mediation Can Help an Elder

Mediation, a form of out-of-court dispute resolution, is very much in the news these days.

Everyone’s heard about divorce mediation, and maybe you have a friend or family member who has used it for his or her divorce.  A new field of mediation, marital mediation, is now emerging.  In marital mediation, a mediator helps a couple who wants to stay married resolve their conflicts.  It is an alternative to marital counseling, and sometimes it works when marital counseling does not. 

In mediation, a neutral person (often a lawyer, sometimes another professional) leads the disputing parties through decision-making by facilitating their discussions.  A very important part of mediation is to help people actually express their needs, rather than their positions.  Often, they find out that their needs are compatible, and they were just taking adverse positions, which resulted in an apparent (but not a real) conflict.  

In Massachusetts, there is a 200-plus member organization of family mediators called the Massachusetts Council on Family Mediation.  www.mcfm.org.  There is a trove of useful information on their website describing the different kinds of mediation available.  Some of these types might be of special interest to elders:  

Are you having difficulty discussing your estate plan with your grown children?  A neutral mediator can lead that discussion and help you and your children come to clarity.

Are you and your children having conflict over your plans for the future?  A mediator is trained to level the playing field, so that your feelings and aims will be heard by your children. 

Is there a family business that you would like to transfer to the next generation but it is very complicated, and you wish to achieve your goals?  Mediators can help lead that discussion and get and help you evaluate the professional help that might be needed in putting the plan into effect. 

Are you having a dispute with someone where you reside?  Use of a neutral mediator to lead that discussion might be very helpful. 

Are you having marital problems?  Marital mediation is a very useful and productive way to address disputes, especially in “mature” (long) marriages. 

Are you getting married and feel you need to have a prenuptial agreement?  Formulating a prenuptial agreement with your intended spouse through mediation is a wonderful way to do this.

Do you want to explore having a postnuptial agreement?  These agreements made between you and your spouse after your marriage to try to “fix” something that is of concern to both of you.  This can be handled very well in mediation sessions.  

Do you or someone you know have a dispute regarding the probate of an estate?  Family conflict can sometimes be addressed and eliminated (or lessened) in mediation.  

All these types of issues can respond quite well to the mediation process.  So if you have an issue or conflict that is not going away, you might want to give mediation a try. 

© 2011 Laurie Israel.

Pacemakers Can Preempt Your Living Will Directives

An article appeared in The New York Times Magazine on June 20, 2010, entitled “What Broke My Father’s Heart” by Katy Butler.  http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?_r=1&pagewanted=1

It chronicles the life and death of her father, a retired college professor who had a pacemaker installed shortly after dementia set in.  The pacemaker’s battery was expected to last ten years.  Both her parents had signed living wills, and in fact and were adamantly opposed to their lives extending beyond usefulness and capacity to enjoy living.  They did not wish to be a burden to each other or their children.  Butler’s memoir attracted 442 reader comments http://community.nytimes.com/comments/www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html and five letters reacting to the article were printed in the July 4, 2010 issue of The New York Times Magazine http://www.nytimes.com/2010/07/04/magazine/04Letters-t-002.html.

A stroke at age 79 disabled Butler’s father, Jeffrey. Several years later, after dementia had progressed a surgeon refused to operate on a painful hernia without installing a pacemaker.  Butler’s mother was anxious to relieve her husband’s pain, exhausted with care giving.  In deference to the doctors, she gave her consent to the implant. The author’s heart stopped when she later learned about her mother’s decision.  This medical decision took a minute, but resulted in devastating consequences for her father and the family that lasted many more years. 

What the doctor did not point out was that the pacemaker could permit Butler’s father to live in a mute and dependent state for another 10 years.  The option of using a temporary external pacemaker was not brought up or discussed.  The temporary external pacemaker could have been disconnected after the surgery.

Medicare would have paid the doctor $54 for a (long) office visit to discuss the temporary external pacemaker.  The surgeon earned $461 for the implant procedure, and the hospital a flat fee of about $12,000, of which almost half went to the maker of the device. The hernia was fixed.  In-home care for the rest of Jeffrey’s life cost tens of thousands of dollars.  This is how our country’s medical cost and medical insurance problem grows. 

Several years later, with her father still alive and in a demented state, Butler learned that pacemakers could be deactivated without surgery.  Her father’s heart would return to its previous slow rhythm, and he would eventually die, perhaps in his sleep.  Butler’s mother asked the family physician to deactivate the pacemaker.  He refused. 

Butler and her mother learned that her mother had the legal right to ask for the withdrawal of any treatment under her husband’s health care proxy.  The pacemaker was, in theory, a form of medical treatment.  But her husband’s health care proxy requested no life support if he was comatose or dying, but said nothing about dementia, and did not define a pacemaker as life support.  They learned that (as of that time) no cardiology association had given its members clear guidance on when, or whether, deactivating pacemakers was ethical.  No physician or hospital would help them. 

Two years later (nine years after the onset of his dementia), Butler’s father finally died in a hospital, of pneumonia. His pacemaker continued to work. Butler’s mother died a short time later..  She had declined open-heart surgery after the surgeon said he would refuse to honor her do-not-resuscitate order. “It would not be fair to his team,” the doctor said.

Since her father’s death, the Heart Rhythm Society and the American Heart Association have issued guidelines saying that patients or their legal surrogates have the moral and legal right to request the withdrawal of any medical treatment, including an implanted cardiac device.  In addition, it says that deactivating a pacemaker is neither euthanasia nor assisted suicide, and that a doctor could not be compelled to do so in violation of his moral values. In such cases, it continues, doctors “cannot abandon the patient but should involve a colleague who is willing to carry out the procedure.”  This guideline came too late for Butler and her family. 

You can benefit from the sad experience of Kathy Butler’s family during the last year of her father’s life and her generosity in sharing it with us. When you are executing a living will or medical directive, read the language that defines medical or mental triggers and removal of possible treatments very carefully.  Make sure that life support can be terminated if you suffer from dementia, not only if you are comatose or dying.  Make sure the directive permits the tuning off or removal of a pacemaker.  

© Laurie Israel. 2010.  All rights reserved.