When asked about their elder parents’ wishes for end-of-life, most of our clients reply that they don’t know, they suppose they should, and they just hate to think about it.  Elder clients express discomfort with the thought of “bringing it up” in conversation with their adult children.  “We can’t ruin a family dinner with that stuff!” 

Reframing the conversation into one of family history, elder experiences, lessons learned, and hopes for a different future outcome can soften the talk and lead to important shared information about preferences and desires.  Even if an elder doesn’t seem able to express specific preferences, basic important items of information and guidance can come to light.  This information is a valuable gift for family members who will be left with the responsibility to finish things for parents at the end of their lives.   What a relief to know everyone is prepared with accurate information and clear direction!

Here is a list of important information and documents that should be in a notebook or file where family members can easily locate it.  (Best yet, each sibling might have a copy.)

1. Power of attorney for financial (General Power of Attorney)  preferably durable
2. Durable power of attorney for healthcare or medical needs
3. Living Will or a Five Wishes document
4. CPR Directive (Do Not Resuscitate)
5. Last Will and Testament
6. Burial plan and wishes for final disposition of remains

While many spend time with an elder law or probate attorney for assistance with these documents, all but the Last Will are possible to execute in Colorado without legal assistance.   This varies from state to state.  Information and forms are available through the internet, some local Offices on Aging, elder care advisors, consultants and managers, hospital discharge planning departments. 

The most significant part of this gift of process and planning, though, is the discussion and sharing  that happens within a family. 

In addition to the essential documents listed above, other important and basic items of information that should be easily accessible are:

                1.            Copies of medical insurance cards

                2.            A current list of medications

                3.            Names and phone numbers for treating physicians and

                                other healthcare providers

                4.            A list of all medical conditions being treated or managed

  Nancy Driskill, RN,MS, CMC

 Mother is 86 years old and has chronic health issues including what the MD has diagnosed as “early stage dementia.”  Mother has difficulty with her activities of daily living, her check book, and her medications.  She is proud and stubborn and refuses to consider a move out of her own home.  I, as her eldest daughter, have a Durable Medical Power of Attorney. 

True or false?

I can announce to Mother and my family that she is moving to an assisted living facility where she will be safe and be well cared for.

I can take over all decisions having to do with her medical care.

I can insist she has help in her home and can arrange for it, paying for it out of Mother’s funds.

I can be held legally responsible if mother suffers injury or illness as a result of her decisions to ignore my pleas or the doctor’s advice.

The answers to the above 4 scenarios are FALSE.

A power of attorney does not give that individual the right, legal or ethical, to subjugate the individual’s preferences or decisions for the POA’s own purposes or convenience.  The document for assigning a POA clearly states that the designated individual shall make decisions based on the principal’s stated desires and preferences and when the principal is unable to express her desires and preferences herself.

It is incumbent upon the individual with the POA to KNOW the principal and to honor as far as possible her preferences when she can’t speak for herself.

The DPOA does not give the individual carte blanche the power to do what she prefers or believes is right.  It does provide the privilege to act on another’s behalf and as her advocate. 

That said, discussions about decisional capacity and competence vs. incompetence needs to happen.

Decisional capacity is the ability to consent to or refuse care.  It is determined by discussion and verbal exchange and is said to be present when an individual can hear, understand, and report accurate interpretation of a set of options or choices and can accurately describe in her own words,  the possible consequences of her choices.

Incompetence is a legal term and , with the support of  specialized examination (as a neuropsyche evaluation) and assessments is determined by a court of law .  Only in that case can an individual’s decisions be made by an appointed individual, a guardian or (in the case of financial management) a conservator.

When a DPOA is assigned and accepted it must be with complete trust on both sides, clear understanding of responsibilities, rights and preferences.  This is not a document to be taken lightly, despite the fact that it is easily obtained and executed and can be done without the assistance of an attorney.

It is  an essential document that, along with a Living Will, Five Wishes document or other description of one’s desires, needs, and preferences for end of life, should be distributed to key members of one’s support system.  These individuals would likely include spouse, children, or adult grandchildren, physician, attorney.

Thoughtful planning before a crisis is the key to a smooth transition.

 Thank you to Amy Rosenberg, Esq. for her professional guidance and editing .

When minor sorts of mishaps occur we have choice about how to approach their management.  Just as when a car or bike has a malfunction and the owner decides whether he has the wherewithall to repair it,  it is something to merely tolerate or  if consulting  a trained specialist is the best answer, so it is with our bodies.

Obviously, one needs to have all the information available about the “machine,” the nature of the malfunction, the importance of the broken piece to the successful operation of the machine, and the ramifications of NOT fixing it.  It is the owner’s choice to ignore, mend/temporarily juryrig a fix, or go all out and invest the time and money in a professional repair.  Even then, the machine will not last forever.  Something else is likely to go wrong and the decision process will need to be revisited. 

Life is finite.  It is an individual decision about what is most important about one’s life and how it is lived. It is also an individual decision about how one will FEEL about that, how he approaches the changes and choices.  I don’t have the right to judge another’s decision about how he or she makes decisions with regard to his own life.

A professional health advocate acts as a guide, support, and buffer to honor an individual’s efforts to manage his own health decisions.  The advocate ensures that the individual has as much information possible on all sides of the issue.  The advocate facilitates effective communication between the patient and the health care provider.  The PHA is an extra set of eyes and ears at appointments and consultations where information may be complicated or confusing and when emotion or apprehension may tend to cloud understanding or accurate recall.  Professional care managers frequently act as health care advocates for their clients.  Sometimes that is the GCM’s primary function for that person;  yet another example of two being stronger than one.

End of life.  What does that mean, really?  If one thinks about it, it becomes obvious that the definitions are as many as there are people considering it!  It could be final minutes, days, months, OR years in a “normal” lifespan.  It could be the final moments before a traumatic injury or intrusive illness renders the body unable to continue to function. 

For my purposes as a human developmentalist and a professional care manager, the last months of a lifespan in a body that is becoming more and more tired and painful and a mind and heart that are calm in the certainty that life has been lived as it was meant to be constitutes the end of life. 

End of life care includes comfort care, relief of pain and anxiety, the means to savor everything that is most pleasant and treasured.  Loving relationships of friends and families, opportunity to make amends and embrace in understanding are more important and significant, somehow, at end of life.  To some it may include hosting one last big bash, going on that fishing trip or cruise, or being involved in preparing one more Christmas dinner.  

Hospice care, palliative care, comfort care, and the “slow medicine” philosophy are all intended to enhance one’s end of life experience.  To finish a life well lived with dignity, love, and comfort is our wish for our clients and their families.  It is also our wish in the world beyond our personal knowledge that seems to value length over quality; a society that takes pride in the ability to take control over the natural consequences of aging and dying in order to make them more palatable and attractive.  In so doing, we rob individuals of the opportunity to really LIVE during the last months and years of life.

When you hear the word “Hospice” I hope you will reconsider what is intended;  NOT the suggestion that one should “give up,” NOT the insinuation that there is no hope for anything more, NOT the prediction of imminent passing.  Instead, Hospice means the promise of best possible, realized potential, freedom to be real and genuine and experience the essence of the best of life on earth.  A gift.     Please don’t be fearful.

Nancy McCambridge Driskill, RN, CMC

Contented Dementia    Oliver James

My Mother Your Mother, Embracing “Slow Medicine”. The Compassionate Approach to Caring for Your Aging Loved Ones.   Dennis McCullough. MD

Another Country, Navigating the Emotional Terrain of Our Elders  Mary Pipher

What Are Old People For?  William H. Thomas

Learning to Speak Alzheimer’s  Joanne Koenig Coste

How to Say it to Seniors  David Solie

Nancy McCambridge Driskill. RN, MS, CMC

March 2011

Our phone number (970) 498-0730 remains unchanged, as does our passion and energy for assisting families and elders to embrace this time in their lives with a sense of fulfillment and completion.

It is never too late to change the way we look at growing older and wiser. It is never too late to learn how to enhance relationships and find the family connections we crave. Embracing change is part and parcel of healthy growth and development (otherwise known as “aging”). Each of us has a choice about how we wish to spend the rest of our lives. Of course, the road ahead we can’t clearly see will present sudden curves and pot-holes to be either endured or avoided. One can’t predict everything, nor can one be prepared for every contingency. This is true no matter how smart we are and how hard we try.

What one can do, however, is learn for once and for all, that we do have choices. Avoiding risk is avoiding action. (I think someone famous said that or something like that!) When families and elders fail to take risks to do what THEY want because some professional someone gives a one dimensional direction, they DO make a choice. Any choice bears consequences. Isn’t it better to make the choice of one’s own heart and deal with consequences positive or negative, than to be pushed into a choice of someone else…..only to deal with the disappointing results?

Our health care and elder care system has become standardized and regulated. The goals of standardization and regulation are laudable. And each time a new regulation is adopted to protect someone’s interests and each time an inviting social experiment becomes the standard, we are constrained and limited. Our freedom of choice and our autonomy are threatened and we become, as a colleague said recently, “just a rider on the bus.”

If you want to live in a luxurious, or even a more modest, senior community, go for it! Just know exactly what you are getting into. The process is analogous to buying a car, an appliance or a home…..The consumer weighs the pro’s and the con’s and then decides based on the available and accurate data. In making the decision, one also accepts the accompanying consequences, good or not so good. But don’t be afraid to think outside the box and do something different! Get the facts and move forward with anticipation of good things yet unknown!

The ISSUES of aging receive a huge amount of attention from social workers, therapists, nurses, counselors and organizations whose existence depends on the fact that issues exist and demand attention. 

In my professional world attention is on unmet need, preventing injury, insulating against unhappiness, and providing for every circumstance.  The efforts are governed by regulation after regulation.  Each year there are more hoops to jump through and more rules to follow.

The riches of elderhood, the advantages and gifts are rarely showcased aside from the opportunities and activities designed for healthy elder bodies and minds who fit into the “box” of a younger professional generation’s design. 

There is something important missing. 

Dr. William Thomas’s book What Are Old People For?  grabs my attention,  for he is one of the comparatively few individuals who addresses clearly and unapologetically the blessings and advantages of growing into elderhood. 

I long for the day when growing older becomes accepted as a significant, meaningful and remarkable part of the lifespan; as significant as toddlerhood, the teen years, the time of marriage and raising families, the period of higher education and career development.

The time between 60 years old and 90+ (30 years!) are ours to be lived and shared and celebrated daily, not just on birthdays or anniversaries.  The day that we honor our own experience and wisdom and seek ways to share it with our families is the day we truly come into ourselves and begin living a life of legacy and significance.  

This is living.  This kind of living allows for the grace and wisdom to accept what cannot be changed  and be hopeful and purposeful about what changes are in our power to effect.  

Nancy McCambridge Driskill

December 2010

During my practice in geriatric care management and my work with aging families, I have observed so many wonderful older folks unable to exercise the responsible decision making of their past. Many factors play into this inability or unwillingness, not the least of which may be brain damage from disease process. There is often a strong belief that only those who are really decrepit and miserable require help. Folks may fear getting to THAT place. Accepting help is viewed as an admission that the dreaded time has come. This is scary and we tend to use denial to protect ourselves from those things we fear. As a result of the denial and fear of accepting help, our lifestyle quality begins to suffer, our families must endure very real fears and frustrations as they watch us suffer needlessly, and our options list becomes very short.

Conversely, trusted family and friends can help guide us toward proactive decision making. We then have the opportunity to capitalize on our remaining strengths and use our energy for living life rather than only existing.

A letter to our families written while we are in healthy middle age can clarify our wishes and expectations. To outline those “red flags” that we define as reasonable indicators for a need for change can be helpful to our children when we ourselves begin to demonstrate some of them. Gentle reminders of our earlier wise words can help us make the necessary adjustments. What a gift to one’s family!

The following is an example of a letter that you might use as a guide. Make copies for your children or other family members and keep one for yourself. It would be a valuable family meeting topic where everyone could talk about their ideas about aging and quality of life issues, and values. The better our families know us, the more certain we can be that they will honor our preferences.

Nancy M. Driskill, RN, MS, CMC

11/10 rev

My Dear Family,

I am comfortably aware that my life here is finite. It is my fondest hope that I will be able to age well into my 90’s without the challenges of a failing body and/or mind. I would like to think that I could continue my life in my current comfortable manner and have a myriad of choices among painless care and housing options.

I know that while this is my fondest hope, it is also fairly unlikely. In some effort to ease the burden of responsibility you are likely to feel, here, my dears, are the “red flags” that I now consider sufficient to merit discussion about a change in my living situation.

1. Wearing the same one or two sets of clothes over and over.
2. Refusing to leave the house to do once familiar activities.
3. Failure to prepare and eat regular well-balanced meals.
4. Hoarding food, newspaper, trash, paper goods.
5. Moldy food regularly appearing in my refrigerator.
6. Demonstrated failure to remember to take medications appropriately.
7. Telling the same stories over and over again.
8. Sleeping all day, being awake all night.
9. Change in my housekeeping habits.
10. My refusal to give up driving even after being advised to do so by medical professionals or after an accident.
11. Deterioration of my health such that I must have someone to help me more than three days /week for things like oxygen, insulin, or other critical needs.
12. Chronic debilitating pain.
13. Recurring acute health conditions including urinary tract infections, upper respiratory infections, falls, repeated blood sugar imbalances if diabetic.
14. Evidence of confused thinking, memory loss.

If you see these things, please sit down with me and gently remind me of my words today. Show me this letter. I wish to be proactive regarding the quality of my life and to make choices before I have none left to make. I wish to spend my late life years in positive and loving relationship with my younger relatives, sharing and benefiting from our collective and individual strengths.

I trust you.

Much love always,

Mom (Dad)

THINGS TO THINK ABOUT…….

The struggles we had as children with members of our families do not just go away.  They do not melt little by little with each year we live.  They do not become resolved just by virtue of the passage of time, our joining with a mate, parenting our own children, becoming grandparents ourselves.

During the latter part of life’s journey, our relationships with parents and siblings can and should continue to grow and develop, to go way past the point at which we “left them” at the time we left our birth home.

Talking about life, memories, hopes and fears for the future, laughing and crying together are the “text books” used in this part of our education process.

Self discovery can be a wonderful gift to share with parents and siblings.  We DO learn from each other.

 Do you have these very important documents?  Does your family know where they are?????

 A durable power of attorney for health care?

A durable power of attorney for financial matters?

CPR Directive?

Living Will?  (Also known as Advanced Directives)   

An attorney is not required to write these documents for you.  Need help?  Call me!

Nancy  McCambridge Driskill, RN, MS, CMC