Will I Have to Pay for my Elderly Parent’s Nursing Home Care?

Filial Responsibility:  Requiring adult children to pay for parent’s care

This is a guest post by my friend and elder law colleague, Ayo Labode.

Filial –  filial |ˈfilēəl; ˈfilyəl| Adjective, of or due from a son or daughter : a display of filial affection. 

“Filial responsibility” in this context refers to legislation in thirty states that establish a duty for adult (nonindigent) children to care for their elderly parents.  These statutes derive from the England’s Elizabethan Poor Relief Act of 1601.  Under the poor laws relatives were the primary source of support for family members although limited public assistance was available for those unable to support themselves or their relatives.  Modern filial responsibility laws are based on the reciprocal contract theory:  one has a moral responsibility to support one’s parents because the parents reared and provided for him or her as a child.  Proponents argue that these laws foster family harmony and promote the Biblical  Commandment of honoring one’s mother and father.  However, consistent with the reciprocity theory, if a parent failed to support the child as a minor, the adult child is not responsible for the parent’s health care bills.

In May 2012, a Pennsylvania Court of Appeals affirmed a trial court’s decision holding John Pittas liable for his mother’s $93,000 nursing home bill under Pennsylvania’s Filial Responsibility’ Law.  Health Care & Retirement Corporation of America v. Pittas (Pa. Super. Ct., No. 536 EDA 2011, May 7, 2012).

Here’s an overview of the facts of the case:  Mr. Pittas’ mother sustained injuries after a car accident.  After completing her rehabilitation she was transferred to Liberty Nursing and Rehabilitation Center where she lived for five months before relocating permanently to Greece.  She left behind an unpaid bill of $93,000.  Although she had applied for Medicaid, the application was pending at the time of the appeal.  The nursing home sued Mr. Pittas for the unpaid balance under Pennsylvania’s Filial Responsibility Law.  You can read a Forbes article about the case here.

Pennsylvania is one of 30 states with statutes that hold an adult child liable for the medical bills of the parents. The Pennsylvania statute provides a few exceptions to the filial responsibility:  (1) the adult child does not have sufficient financial ability to support the parent or (2) adult child was abandoned for a period of ten years while a minor by the parent in question.  23 Pa.C.S.A. § 4603.

Colorado is one of 20 states that does not have a filial responsibility statute.  In 1987 the Colorado Supreme Court held that “a child has neither a common law nor a statutorily imposed duty to support his or her parents.”  In re the Marriage of Serdinsky, 740 P.2d 521 (Colo. 1987).

Proponents of enactment and enforcement of filial responsibility laws view these laws as a way to address the increasing demand for Medicaid to pay for long –term care.  According to MetLife’s annual survey of long-term care costs, in 2011 the average daily rate for nursing homes in Colorado is $207/day for a semi-private room.  That is almost $76,000/year.  As a point of reference, in 2010 the average social security recipient received $1,176/month or $14,000/year.   The Pittas case is not an anomaly.  In 2008, a Pennsylvania court held a man responsible for his mother $8,000 nursing home bill even though he was out of work and deeply indebt.  To complicate matters, the mother had the ability to pay the nursing home through her pensions and social security payment, but simply refused to do so.   Because the mother’s sources of income cannot be garnished, the nursing home sought and received a judgment against the son.

Some family law practitioners compare the current state of filial responsibility laws to that of child support statutes that targeted fathers who failed to pay child support – the so-called “deadbeat dad.”  In an oft-cited 2002 article in the ABA Family Law Quarterly, a family law practitioner suggests that the federal government should create incentives for states to create filial responsibility laws and mechanisms for effective enforcement across state lines. This argument has led supporters of filial responsibility laws to compare adult children to deadbeat parents who fail to provide child support.

This comparison, and the idea of “deadbeat children” is a misleading and erroneous simplification of the issues at stake. There are several major distinctions between “deadbeat children” and “deadbeat parents.” First, adults make the decision to have children and therefore have a responsibility to provide for their well-being.  However a child was not consulted regarding the selection of his parents or to determine if they will be spendthrifts or penny-pinchers.  Second, the sheer cost of long-term care can easily overwhelm most families, and filial responsibility laws may render adult children destitute. Third, the type of care adults need as we age can be physically and mentally demanding.  For example, it is not uncommon for an adult with advance dementia to become physically aggressive, incontinent and wander away from the home.  Retirement-aged adults may not have the ability to provide the necessary care and oversight. Finally, over a long lifetime, relationships can become messy.  We would all like to think of loving parent-child relationships built on mutual responsibility and respect.  However, we know that many families drift apart for a myriad of reasons: differences in lifestyles, choice in religion, alcohol and drug abuse or worse. These laws would make children responsible for parents even when the bonds of trust and care have been broken.

As we live longer, lawmakers will continue to explore ways to pay for the increasing care needs.  Filial Responsibility laws are seen by some as a possible “solution” to pay for the care we need as we age. Yet many people are unaware that they could be held responsible not only for their debts, but for those of their parents.

Ayo Labode is the principal of The Law Office of Ayo Labode, LLC, in Denver.  Her practice is concentrated in the area of elder law, estate planning, wills, probate, guardianships and conservatorships.  Prior to starting her own law firm, Ayo worked for almost five years as an ombudsman, an advocate of for nursing home residents.  She was responsible for investigating complaints from nursing home residents and their families about nursing home care and violations of resident rights.  Ayo has also written chapters for the Colorado Handbook of Elder Law about assisted living residence and nursing home admissions contracts and the Senior Law Handbook about selecting an appropriate nursing home or assisted living residence.   You can reach Ayo at www.LabodeLaw.com

Drawbacks of the Do-it-Yourself Estate Plan

I was inspired to write this post by Brenda Speer, a solo colleague and fellow blogger in Colorado Springs who practices intellectual property law.  Read her post “The Perils of DIY Legal” here.   I agree with Brenda about not doing things yourself – even if you think you can and it will save you some money.   I’ve had the opportunity to be my own counsel a couple times in the last few years, and I have declined representation both times!  DIY for lawyers can also be problematic! Check out “Train Wrecks of Estate Planning” here.  This article highlights what happened to U.S. Supreme Court Chief Justice Burger’s will .

According to a recent article, “Half of Americans with Kids Set to Die Without a Will,”  but what surprised me was that it was estimated at only 50%, which I thought might have been higher (remember it’s an estimate).  Is this a conscious or unconscious decision on people’s parts?  As a parent, I think it is more of a conscious decision to not have some plan in place in the event something happens to you or you die (yes, unexpectedly).  So that of course brings us to the next question – if you choose not to make a will, do you know how the law of intestacy in Colorado works to divide your estate?  Hmm. . . .

How Hard Can It Be To Write a Will – Can’t I Do it Myself?

Okay, you decide to write a will.  Do you know what you don’t know?  I liked Bernard Krooks’ article “Is Do-It Yourself Estate Planning a Valid Option?” in Forbes.  He makes the observation that there is no book Home Surgery for Dummies and that some things are better left to the professionals.

How can you sort through the information you find on the internet?  It’s just a form right? I know I’ve filled out the wrong form before, thinking it was the right one . . . and people doing DIY estate planning can do the same thing.  What the forms available through Nolo and LegalZoom don’t do is ask any questions about YOUR situation.  Isn’t that why you want a will, power of attorney, or other legal document in the first place?  Otherwise you can leave it up to the “wait and see” approach that so many people take, and hope that there isn’t a really terrible mess to clean up (legal, financial or emotional) afterward.  I also liked this article.

If you use a legal document service – how do you know which document is right for you and whether the form  is consistent with Colorado law?  The only way to get an appropriate and up-to-date form, reflective of current state law, is to hire an attorney who is familiar with the field of law and current legal developments.  Each state has its own probate code and case law, and whether you are concerned with disability planning (powers of attorney, living trusts) or estate planning (wills, testamentary trusts), the law of the state in which you reside is specific and unique.  Document assembly services don’t explain this to people because they might expect you to already know that!  Your best defense is to be a well-informed consumer.

So here are four pointers to keep in mind –

      1. It’s too easy to make mistakes if you don’t know what you’re doing
      2. No legal advice is given with document services – so you don’t know whether you’re getting the right documents with the correct language
      3. State laws applicable to powers of attorney, estate planning and estate administration are unique to the particular state and they are subject to change
      4. Correcting mistakes can be expensive – sometimes the “inexpensive” forms can lead to results that are costly

What if I already have a will and just want to change it myself – how hard can that be? Well, Robert Fleming’s article “don’t try this at home” has a good cautionary tale about the importance of amending your will (the legal term is “codicil”) so that it is done correctly and will be upheld.

Keep in mind as well that it is often legal issues that are bound with financial, medical and emotional issues as well – as modern disability (life or longevity) and estate planning involves other people, relying on others to help make decisions in the event of incapacity.

Why is this such a big deal? In Colorado, attorneys are not allowed to say we “specialize” in elder or estate law because Colorado does not have certifications that many others states use.  If you are looking for an attorney who has a lot of experience in the field of estate and elder law, do your research and look for someone who “focuses” their practice in this area.  Elder law is in many respects a general practice field that is made specific by the client served.  There are many legal issues that our legal system and our society have not faced before because we have never had this many 80 and 90 year olds on the face of the planet!

So – tell me again – why talk to an attorney? 

Consulting with an attorney has the benefit of talking with an actual human.  I am not simply a purveyor of legal documents, I’m not a legal document preparation service –  I’m a person with a law license and years of experience.  I may not be able to compete with the legal form generating websites on price, but that’s because I offer something different: I am licensed to practice law in Colorado, and I spend time talking with clients to find out what their concerns and unique situations are so that I can recommend a strategy, including the preparation of legal documents, that fits their needs.   I suggest that before deciding that a document preparation service is the less expensive alternative, a person should look into what it is they are getting, and what they are not getting.  . . . And be sure to call an attorney to see what they have to offer.

©Barbara Cashman, LLC  www.DenverElderLaw.org

On Grief and Food: Why Feeding Your Hunger Heals Your Heart

This is a guest post by Michele Morris, a local food aficionado and food blogger I know.

I recently attended the funeral of a dear friend – she was young, only 60, taken much too early by a rare form of cancer. I was asked to speak at the service on behalf of a small group of women who traveled together each year, and although I held myself together for that short tribute to her, I nearly collapsed from grief watching her parents pass her casket on the way out of the service.

After pulling myself together in the bathroom with some others (I felt I needed to be the strong one – although I had lost a friend, my good friend had lost her beloved sister, and her parents had lost a child), I went to join the others in the church for a reception. In the south, the “church ladies” pull together food for funerals, and as you might guess, this was a veritable smorgasbord of comfort foods: fried chicken, biscuits and gravy, mashed potatoes with heavy cream and butter, ribs, and dessert – well don’t even get me started about the pastries!

For a moment I thought I was going to be sick staring at the long tables of steaming food lined up, but then I found myself in line along with every other grieving person at the funeral. In fact, I lined up not once, but definitely went back for seconds and possibly even thirds. What is it about grief that inspires us to cook for each other and how is it that when we feel most crushed that we find a way to eat?

At its very core, cooking for someone is a way to nurture them. As babies, unable to feed ourselves, we are fed by our mothers. As children growing up we are fed by friends and family. And as adults, we feed ourselves along with our own friends and families. If someone has a surgery, we make them food. If a new baby arrives, we bring the family a casserole. When we celebrate our kids’ sporting events, we assign roles for snacks. Feeding someone is a way of meeting one of the most basic of human needs. For the person in grief who is being fed, it offers comfort. When you hurt and someone takes care of you, you feel loved, you feel protected, and you feel cared for.

When life is normal, most of us are able to provide this care for ourselves – we can feed ourselves and our families without the help of those around us. But during a time of grief, it’s a huge relief – and a gift also – to have someone else take on this role for us. It allows us the opportunity to just grieve, knowing we’ll be cared for.

As for the foods that are prepared, is it any surprise that comfort foods often top the list? That’s because they are exactly that: comfort foods. They comfort because they are familiar and they often remind us of our childhoods. But that’s not their only trait. Many times they are foods that actually help the brain release endorphins. You aren’t just weak in willpower when you sit down and can’t stop snacking on a bag of potato chips. Carbohydrates (which include sugar), fat and a compound found in chocolate all stimulate the release of endorphins, which trigger a pleasure response. While you may not feel downright joyous at a funeral when you eat those mashed potatoes loaded with butter, you probably do feel just a little bit better.

So for all of you “church ladies” and other friends who have brought food to families in crisis or cooked for the mourners at a funeral, thanks for taking care of people when they most needed it. Your caring – and your cooking – absolutely does make a difference.

Michele Morris is the owner of Cooking with Michele, providing private cooking classes, food and wine dinners, and small event catering. She is the author of both a food blog and a travel blog (cookingwithmichele.com) and has written for numerous regional publications. Her first cookbook will be released in the spring of 2013 and on any given day she can usually be found cooking for someone.  You can email her at michele@cookingwithmichele.com  and find her blog with lots more great recipes at her website. www.cookingwithmichele.com

Did all those comfort food references leave you with a hankering for those potatoes pictured above? Check out Michele’s recipe below:

Buttermilk Smashed Potatoes with Garlic Chives  

Serves 4

 1 to 1 1/4 pounds Yukon Gold potatoes

1/2 cup low-fat buttermilk (or cream or half and half)

4 tablespoons butter

2 tablespoons minced garlic (or regular) chives

Salt and pepper, to taste

 Clean the potatoes under cold water then cut into 1 inch cubes. Add to a pot of cold water and bring to a boil. Cook until potatoes are tender, about 15 minutes. Carefully drain. Return cooked potatoes to the pot and add buttermilk and butter and use a potato masher to smash them together, combining the buttermilk and butter as you do so. Stir in the chives and season with salt and pepper to taste.

 Note:  I like to keep the skin on the potatoes because it’s filled with vitamins and adds fiber to your food which is good for you, but if you don’t like it, you can peel your potatoes first.

What Should I Look for in an Elder/Probate Mediator?

If you are at the point of looking for an elder or probate mediator for a dispute that relates to:

 •            Health or medical care decisions

•             Housing Concerns, Assisted Living or Long-Term Care

•             Powers of Attorney – Health Care and Financial

•             Dementia or other cognitive, physical or emotional decline

•             Advance Directives and End-of-Life Decisions

•             Respite care and Support for Caregivers

•             Independence and self-determination vs. safety issues

•             Suspected abuse, neglect or self-neglect

OR

If you are in the midst of a legal proceeding and are exploring alternatives, either with or without legal counsel, such as:

•             Estate or Trust administration and Distribution conflicts

•             Guardianship or Conservatorship proceedings in probate court

 

You may be interested in speaking to an elder/probate mediator about resolving your dispute in mediation.  The major benefits of mediation include:

•             A confidential and safe setting to discuss private family issues

•             Ability to retain control of the outcome of the process, as opposed to litigation – where a judge decides

•             Creative outcomes can be crafted after brainstorming and evaluating various options with a mediator

•             Participation of family members and others in mediation sessions

•             Mediation is less expensive and much faster than going to court

 

But one of the concerns you may have is about what to “look for” in an elder/probate mediator.  First a detail – I refer to this type of mediation as “elder/probate” or “elder and probate” as distinguished from “elder and guardianship” which is more common in other parts of the country, because the term “elder and probate” includes guardianship, conservatorship, estate and trust administration.  In January 2012, the Canadian Centre for Elder Law (British Columbia) published a 195 page report entitled “Elder and Guardianship Mediation.”  Unfortunately, it appears that the report is no longer available online as it was in January 2012.  I liked the report because it is carefully researched (599 footnotes) and has useful appendices include reference materials.

What I find helpful from a consumer’s perspective are the parts of the report that zero in on ethical issues elder and probate mediators face as well as some of the standards of practice recognized by mediation organizations.  These are particularly useful in Colorado, because the State of Colorado does not certify, license or otherwise regulate mediators.

It gives a background of mediation’s core ethical standards: voluntariness of participation (this notwithstanding the fact that a judge may order parties to mediation); confidentiality of process; and impartiality and neutrality of the mediator.  The universe of elder law issues which are appropriate for mediation are outlined above, but generally concern most types of inter-generational or multigenerational family disputes.  These include any matters which are referred to mediation by a judge in probate court.

According to the report (at 36-48) some ethical issues that elder/probate mediators and participants may encounter include:

•             Power imbalances among disputing parties that may need to be identified before mediation is determined to be appropriate

•             Mediator’s ability to remain impartial (this is important in mediation because it does not have the “checks and balances” of procedural fairness that is built into litigation process)

•             Self-determination and capacity to participate in mediation (here an elder adult may or may not be present at the mediation and may be supported by another person)

•             Accommodation of participants and ability to support parties’ participation in process

•             Confidentiality – this is one of the key benefits of mediation, and in a multi-party mediation or where health care or support professionals may be involved, this can be challenging

•             Suspected abuse or neglect – keep in mind that Colorado, unlike most states, does not have a mandatory elder abuse reporting statute – this issue in the mediation context is controversial and should be handled with care

•             Mediator competence – as stated above, Colorado doesn’t certify or license mediators, so this can be challenging to identify what “mediator competence” looks like in the elder/probate context.    Helpful here is the ACR Section on Elder Decision-Making & Conflict Resolution’s “Elder Care and Elder Family Decision Making Mediation Training Objectives” from 2011, available here

This information is provided as a number of suggested questions to ask when you are interviewing a mediator. Feel free to ask questions!

©Barbara Cashman, LLC   www.DenverElderLaw.org

Post about Joan Therese Seivert and Connections Unlimited, LLC

This is the first of a series that will showcase some of my colleagues, their businesses, expertise, etc. because  the DenverElderLaw.org blog isn’t just about Barb!  Today I’m writing about Joan Therese Seivert – her website is www.joantherese.com, her company’s name is Connections Unlimited, LLC and she regularly tweets  and posts Facebook updates as well as youtube videos about what she does for Denver area families.  Joan Therese runs Connections Unlimited, LLC, from her home office in Edgewater, but she typically visits with people in their homes.  Joan Therese has had her company for twenty-three years and before starting Connections Unlimited, she worked in special needs advocacy and a variety of different settings in aging and retirement communities, which she describes as excellent preparation for her Connections Unlimited work.  When she started Connections Unlimited , she needed a flexible work schedule because she had young children.  Her kids are now grown, but she still enjoys the flexibility of running her own business and doing work she knows she is meant to do.

Helping families sift through the options available for an aging parent, whether that involves independent or assisted living, and asking the questions that are sometimes the most difficult for family members to ask are all part of what Joan Therese does.  She asks lots of questions to find out what people are concerned about, and she listens carefully to their answers.  She is a consummate networker, and prides herself on being familiar with a variety of people and resource providers, so that she can offer different people different options.  Nearly all of the work she does with Connections Unlimited is about helping families with elders work together to maintain quality of life and strengthening community.

What Joan Therese finds most gratifying about her job  is being of service to others, especially helping them make the space to ask the hard questions and assisting them through the process of making their own choices about how they want to proceed.

Joan Therese hasn’t written a blog post before, but she does regular updates on Facebook  (her fan page has over 100 likes!) and lots of tweets.

I asked Joan Therese about some of the biggest challenges she faces in her line of work.  She answered that is thinking about the huge number of boomers aging, keeping people living independently by fostering their connections to the community, and locating available resources for the large number of older women of fixed (low) incomes.  She typically asks herself, along with her clients, to think about conceptions of aging and consider whether someone is “settling into old age” or whether they are becoming an elder – an engaged member of the community.

I love chatting with Joan Therese and hearing about her work, which she infuses with much joy, meaning and purpose.  Be sure to watch one of Joan Therese’s(latest) videos here!

Looking at the End of Life – legal, medical and emotional considerations

What is a “good death?”  Well, it depends on who answers – a doctor, a patient, or a family member.    Planning may be very helpful, for those who are inclined to talk about such matters beforehand, and the planning process can be very helpful in light of the likelihood of encountering “unexpected events.”     Who decides this, how do we make the decision and why do we make a particular decision?  I know, this is a lot of questions . . .

The legal question of “who decides” is by reference to several factors that include: the ability of the person receiving medical care to provide informed consent; whether there is an agent under a medical power of attorney (Power of Attorney for Health Care) and who is a surrogate decision maker or a proxy decision maker  capable of deciding for someone.

The medical questions tend to arise from whatever sources inform our decisions around health care at the end of our lives.  Here’s a good question – do doctors die differently than the rest of us? The answer is more often than not “yes.”  What we can learn from them?  Carolyn McClanahan’s article in Forbes posted 3/2/12 read it here  is a good start.  Here is another article that highlights the fact that many doctors shun the treatments so frequently offered to patients and their families.   This is not an issue of doctors not following their own advice, patients and families choose which options will be selected – but instead illustrates that doctors tend to be much more realistic about likely outcomes for such medical interventions and often more concerned about quality of life.  But it’s not really quite that simple – is it? Doctors as patients and doctors as doctors are two different matters.  Illustration please!

Doctors giving a diagnosis of a disease that is terminal may be reluctant to deliver the bad news.   Another sad truth is that most doctors view death as a “medical failure” and as the hospital-based internist who wrote this article observes,  many family members of ailing elders look to doctors to “use their physician superpowers to push the patient’s tired body further down the road.”    Sadly, many adult children have a very difficult time “letting go” of a parent.  This is compounding situation to an already difficult scenario.

Now for the last question – the emotional considerations of end-of-life.  Here is a list of some facts, with emotional implications.

Death is real and we each face it alone.  If we have been living our lives, charting a course of changes throughout and experiencing the full range of emotions we are lucky to experience, we may feel better equipped to face or cope with another’s final change, the transition to death.  What are some of the feelings of those who face their death with ?

“soul needs” include feeling heard by others, feeling cared for and connected to them and emotionally safe to express feelings – basically what we all want while we are alive!

“emotional needs” can include addressing any or all of the following feelings:

 

being afraid to die;

they are a burden to caregiver, family or community;

that they missed opportunities and their life has been wasted;

wanting to contact former friends or estranged family members;

anger at being cheated out of the length of their life;

perception of being lost and alone, and desperate for someone to ask how they feel;

angry at or feeling deserted by God; and

desperate to die and “get it over with.”

 

Emotions can also spring from any of the five stages described by Elisabeth Kuebler-Ross: denial, anger, bargaining, depression and acceptance.

We can say goodbye to someone and make peace with them before it is too late.

I have mentioned Dr. Ira Byock’s “four things” to say in previous posts (and I’m sure I’ll mention them again!):

Please forgive me

                                I forgive you

                                Thank you

                                I love you

It’s best to think about this goodbye, because it will be the last one said to the dying person, and it will last the rest of your life!  In the meantime, keep talking to each other and asking questions – even if you can’t answer the question . . .

©Barbara Cashman, LLC

What does living with Dementia Look Like?

I recently read a blog post written by a woman in Florida (she blogs under the name “stumblinn”) who has been living with young onset dementia for fourteen years.  Her post of May 8, 2012 was entitled “Dementia and spirituality” and you can read it here .  She writes

I am glad that I have never seen myself as a victim of or suffering from dementia.   Having dementia is not a choice for me, but not suffering from it is.   We suffer when we resist what is, see what happens to us in life as unfair.   When we remain aware at all times that everything that happens is an opportunity for learning and spiritual growth, then there is no suffering.    (That does not mean there are no challenges to face as without them, there would be no growth.)

I found her comments instructive.    It reminded me of an article I ran across a few years ago published by Baylor University.   I liked this article because it considers dementia in the spiritual context and asks “what is it that makes us who we are?”  It is illustrated with a picture of a quilt to demonstrate how the story of each of our lives is connected to others’ lives.  Dementia may rob people from remembering their “story,” but others can help them remember by reinforcing each individual’s uniqueness and honoring the person’s “be-ing” not just their “do-ing.”   I’ll quote Rabbi Abraham J. Heschel’s comments at the White House Conference on Aging, back in 1971:

Older adults need a vision, not only recreation.

Older adults need a dream, not only a memory.

It takes three things to attain a significant sense of being: God, a soul and a moment.  And the three are always there. 

Just to BE is a blessing, and just to LIVE is holy.

The Alzheimer’s Association has a list of resources (articles, books videos, etc) under “Spirituality and Dementia” that is available here.

The U.S. has recently declared a “War on Alzheimer’s”  and some commentators are optimistic that Alzheimer’s Disease may be treatable by 2025 – read an article in the April 2012 Scientific American here,  but while this focus may prove successful to combat and prevent in the future there are many people – both individuals and families who face many different types of challenges right now.  This is why I liked stumblinn’s post.

The World Health Organization  issued a news release on 4/11/12 under the title “Dementia cases set to triple by 2050 but still largely ignored”    and essentially recommended that dementia public awareness and diagnosis needs to be expanded beyond the eight nations who currently have national programs to address dementia.  One of the topics covered in the release was providing more support to caregivers.    In this country, we need to continue to expand our understanding of people with dementia as people first, not medical problems to be fixed.

In the meantime, there continues to be evidence that lifestyle choices and habits still factor into the dementia diagnosis  in significant ways, U.S. News article “Everyday Activities Might Lower Alzheimer’s Risk” is here  and efforts to get people with dementia out in nature to reconnect with it to get back in better touch with their essential humanity  are helpful as are programs reconnecting dementia patients through art (an article in The New Old Age series).  I’ll explore more about gratitude for “what is” in a later post.

©Barbara Cashman, LLC

 

Estate Planning for Someone With a Chronic Illness

A large factor in the burgeoning number of older people in our population is the successful management of chronic conditions and diseases.  Many chronic conditions and diseases are now, thankfully, routinely managed with regular medical care and pharmaceutical drugs.  Some chronic diseases can adversely impact a person’s ability to make a living during the prime earning years of their lifetime, and may cause periods of physical and mental disability and have serious emotional consequences as well.  Many people who are disabled as a result of chronic illnesses or conditions are not “seniors” and they face special estate planning challenges.

I recently had the opportunity to hear Martin Shenkman, a nationally recognized estate planning attorney, CPA and RV driver,  speak to a professional group to which I belong.  He had some very useful insights into legal, financial, medical and tax planning for those suffering from a chronic illness.  Shenkman’s wife Patti (an M.D.) was diagnosed with multiple sclerosis in 2006 and now he and his wife and their little dog Elvis (yes, he’s a chick magnet) spend some time traveling around in an airstream trailer so that Shenkman can deliver insightful and entertaining educational programs to professional planners (lawyers, CPAs, financial planners and insurance consultants) on  tips for advising clients and their families who are living with chronic illnesses including: ALS; Alzheimer’s Disease; Parkinson’s Disease; COPD and others.

Shenkman’s article “Estate Planning for Clients with Chronic Illnesses” is available here.  You can look at his numerous articles helpful for both consumers and professional planners here.  I especially liked his “holistic” or multidisciplinary approach to planning for individuals and individuals relative to their unique family situations,  and which addresses not only the legal issues but also financial, tax, health and lifestyle considerations of those facing chronic diseases and conditions.

In the legal context, chronic diseases and conditions can often impact a client’s capacity to hire an attorney, as well as the capacity to make a will or trust.  This is problematic in some progressive diseases in particular, such as Alzheimer’s and Parkinson’s, but also in MS or COPD, where flare-ups may implicate cognitive functioning.  Parkinson’s may also involve certain forms of dementia, and where there is depression with any of these chronic diseases, it can sometimes be masked in other symptoms.

People facing these diseases may be more motivated to consider planning for their future and to take care of their family.  Clients who are meeting with an attorney may want to make sure that their lawyer asks enough questions and that she or he listens carefully to responses.  What can sometimes happen is that a detail that the client thinks is not important is indeed important from a legal planning perspective. Some elder law and estate planning attorneys are more knowledgeable about and sensitive to medical conditions and diseases and how they impact a person’s life.  The average age of diagnosis for both Alzheimer’s  and Parkinson’s is 60 and over.  Both Alzheimer’s and Parkinson’s are progressive in nature – Alzheimer’s is a brain disease and Parkinson’s is a disease of the nervous system.  Both of these diseases present challenges for persons interested in taking care of themselves and their families while they are living with the disease, so it is important to not wait until the opportunity for planning has passed.  Both The Alzheimer’s Association at http://www.alz.org  and the Parkinson Association of the Rockies at http://www.parkinsonrockies.org have helpful information for the public about legal issues for planning purposes.  Taking an approach to plan for a progressive disease such as Alzheimer’s or Parkinson’s can help people affected by these diseases maintain quality of life and dignity.

Conflict at the End of Life: When Dying is Preceded by Conflict

This is a very difficult place for most people: the intersection of grief, end-of-life decision making, quality of life at the end of one’s life, and conflicted emotions. Every family situation is different of course, but often there are feelings of guilt, resentment, anticipatory grief and despair that can overwhelm the more typical means of communication with others.   Several people I know in the hospice field have mentioned there is often a high amount of conflict as the dying person gets closer to the end of life.  I recently read Dr. Kiran Gupta’s article entitled “Hostile family member keeps doctors from focusing on patient.”    and it was quite an eye-opener about the level of conflict that those providing medical care to terminally ill or dying patients can be dragged into.

I’m sure there aren’t many of us who could imagine that this type of thing could happen in our family.  Sadly, I know of many hospice staff members who report that a patient’s impending death ramps up emotionality on many fronts and often leads to emotional, verbal and sometimes physical outbursts of violence among family members and loved ones.

This is a common issue in the broader context of family and intergenerational conflicts: who “owns” the conflict?  Sometimes it is difficult to identify the person “responsible” for managing or resolving the conflict , especially when the conflict is longstanding, ongoing and otherwise an “orphan,” such that no family member will own or take any responsibility for the existence of the conflict or a person’s share in it.  If a person is in hospice care, the medical providers or other hospice staff may somehow find themselves saddled with responsibility for the conflict because they are providing health care services, which is often the preferred focus of family members, who may not be prepared to work through the underlying conflict.

Here are some tips:

  • name the nature of the conflict – listen actively, reflecting back to check for comprehension;
  • consider the present costs of the conflict – in terms of the ill person’s limited time and the need of family members to attend to that person and get along with each other in the time remaining;
  • identify the causes of conflict in end-of-life care (include many differences of opinions relating to meaning of life, quality of life , standards for end of life care, age differences, poor or unproductive communication skills, and social, cultural and educational differences ;
  • ask whether the conflict and interactions can be managed successfully when and where possible; and
  • how to engage a third party mediator for resolving the conflicts stemming from end-of-life care

Simply naming the conflict – noting its existence and identifying its nature can be a huge leap from a stagnant conflict to a process of simplifying how it can be managed productively or resolved.    It is important to keep in mind that end of life questions and decisions involve high stakes outcomes and are morally complex and tend to invoke high levels of emotion, which are often expressed as reactions to a threat and often there is not time or emotional space for reflective decision making.  This can lead to a very difficult position – here are a few questions to consider if you or someone you know is struggling with situation:

  1. Ask yourself: how do I contribute to this conflict?
  2. How can I shift my behavior to enable an easier means of reconciliation?
  3. Can I get past my emotional baggage I bring to the conflict and focus on making the end of life situation the best it can be for my loved one?

If you find yourself honestly answering #3 and it is not a resounding “yes,” getting a third party involved might be helpful.   You may want to talk with a third party about preliminary aspects of a facilitation or mediation in this setting by:

  • estimating the cost of pretending there is no conflict (avoidance); outcome of  confrontational approach (likely to escalate);
  • considering the impact of the conflict on other decision making contexts, – financial, medical, emotional, etc.;
  • honestly and openly examining the role of the conflict and how it impacts the person affected – are they expected to take sides or manage a conflict given their declining heath;
  • looking behind the anger to unmask the underlying fear, rejection, remorse, etc (remembering that mediation is not therapy); and
  • deciding who will participate in the mediation

The process of sharing the responsibility for the conflict means you can share responsibility for managing and resolving it, and if you participate in mediation, you can also explore shared solutions.  The beauty of having a third party facilitate the process is that all interested persons can participate, and there isn’t one that has to “manage” how the others interact, at the expense of getting their own voice heard.

Who Is Taking Care of the Caregivers?

Did you know that according to the 2012 Report by the Alzheimer’s Association, over 15 million Americans provide unpaid care for a person with Alzheimer’s or some other form of dementia? f  The report, at page 27, also states that 80% of the care provided at home is given by family caregivers and that fewer than 10%  of older adults receive all of their care from paid workers.  The study also shows, in colorful bars, the proportionally larger number of caregivers of people with dementia (as compared with caregivers of older people) who provide assistance with activities of daily living (getting out of bed, dressing, toileting, bathing, managing incontinence, and feeding) along with the larger number of those dementia caregivers for both the 1-4 years and the 5+ years categories for the length of time of caregiving.  Page 31 of the report demonstrates that dementia caregivers suffer from 1.5 greater emotional stress level than the other elder adult caregivers, while the physical stresses were slightly lower. This report is very eye-opening.  One of my first questions about this is  – who is taking care of the caregivers?

Fortunately, the Alzheimer’s Association of Colorado offers assistance in the form of classes and workshops for people who are touched by Alzheimer’s and other forms of dementia.   A helpful list of resources available in Colorado can be found here.  Dementia care is stressful on a number of levels, so you may want to make sure that financial, legal and medical arrangements are already in place for the affected person.

So how do dementia caregivers of family members cope with the stress? I am a regular practitioner of yoga, so I was pleased to see this post on “Yoga for Caregivers: Meditation May Lower Depression, Improve Brain Functioning in Dementia Caregivers of 3/13/2012 available here.

Many times a better understanding of the behaviors of people with dementia can be helpful as can adjustments to communication techniques.  The Family Caregiver Alliance offers the following 10 tips:

1.      Set a positive mood for interaction – your attitude and body language communicate your feelings and thoughts stronger than your words.

2.      Get the person’s attention and limit distractions and noise, use nonverbal cues and touch to help keep her focused. If she is seated, get down to her level and maintain eye contact.

3.      State your message clearly, using simple words and sentences. Speak slowly, distinctly and in a reassuring tone. Refrain from raising your voice higher or louder; instead, pitch your voice lower. If she doesn’t understand the first time, use the same wording to repeat your message or question. If she still doesn’t understand, wait a few minutes and rephrase the question. Use the names of people and places instead of pronouns or abbreviations.

4.      Ask simple, answerable questions, and ask them one at a time (those with yes or no answers work best).

5.      Listen with your ears, eyes and heart and be patient in waiting for your loved one’s reply. If she is struggling for an answer, it’s okay to suggest words. Watch for nonverbal cues and body language, and respond appropriately. Always strive to listen for the meaning and feelings that underlie the words.

6.      Break down activities into a series of steps. This makes many tasks much more manageable.

7.      When the going gets tough, distract and redirect. When your loved one becomes upset, try changing the subject or the environment.

8.      Respond with affection and reassurance. People with dementia often feel confused, anxious and unsure of themselves. Further, they often get reality confused and may recall things that never really occurred. Avoid trying to convince them they are wrong. Stay focused on the feelings they are demonstrating (which are real) and respond with verbal and physical expressions of comfort, support and reassurance. Sometimes holding hands, touching, hugging and praise will get the person to respond when all else fails.

9.      Remember the good old days. Remembering the past is often a soothing and affirming activity. Many people with dementia may not remember what happened 45 minutes ago, but they can clearly recall their lives 45 years earlier. Therefore, avoid asking questions that rely on short-term memory, such as asking the person what they had for lunch. Instead, try asking general questions about the person’s distant past—this information is more likely to be retained.

10.  Maintain your sense of humor. Use humor whenever possible, though not at the person’s expense. People with dementia tend to retain their social skills and are usually delighted to laugh along with you.

The tips are from  http://www.caregiver.org

Some of the distressing facts about caregiving are According to the American Medical Association, 16 percent of caregivers have worsened health after they’ve begun caring for someone. And about half of Alzheimer’s disease caregivers go on to develop psychological distress.  So please remember, if you are caring for a person with dementia or want to help support someone who is providing that care, there are many sources of support available, so please take good care of the caregiver and get help if you need it.