Dementia, Fear and Aid in Dying

Sunset on an Artificial Lake

 

For this first post of June, I am revisiting a topic that has been discussed in previous posts: Alzheimer’s (or other forms of dementia) and the fear of aging.  Combining that volatile mix with the question of assisted dying presents a long list of novel questions.  The topic  was sparked by a phone call I received from someone residing in another state but who was looking for information about Colorado’s End of Life Options Act.  The specific query concerned the caller’s desire to explore options to end a spouse’s suffering from Alzheimer’s disease.  My response was fairly straightforward and I think the caller was a bit surprised by my candor.  I explained that under the Colorado law a patient or “qualified individual” was required to, among other things, have the capacity to give informed consent to the  receipt of the aid-in-dying medication to end the qualified person’s life.  See Colo. Rev. Stat. § 25-48-102(13) defining “qualified individual” and § 106(e) which concerns more details of the individual’s “informed decision.”

The caller was surprised when I explained that the only legislature which has to date considered expanding the aid-in-dying law to dementia patients was Oregon.  The Oregon Senate Bill 893 would allow for those persons otherwise qualified for administering receiving life-ending medications under Oregon’s Death with Dignity Act, except that the  patient who ceases to have capacity to give informed consent can still be given life ending medication if there is a specific advance medical directive which expressly authorizes an agent under a medical power of attorney to collect and administer the life-ending medication if the incapacitated person previously received a prescription for such medication.

Alzheimer’s Disease and other forms of dementia (here I will collectively refer to them as AD) are typically the most feared diseases of post-modern westerners who privilege their rationality (remember the Cartesian mantra “I think therefore I am”) and perceived autonomy over all else.  Further, our techno-medical way of examining aging, of parsing out different functions of one’s life ascribed to different body parts, leads us to believe that whatever form of cognitive impairment – age related or otherwise – might just be a part in need of fixing or a disease waiting to be cured. This type of reductionist thinking refuses to look outside its own narrow pigeon hole. In the meantime, those of us who do not perish will age in our own unique ways and many of us will struggle with its challenges.

Whose fear is it – and whose suffering?

What do we make of this fear of AD and fear of a person’s – er – a personality’s – disintegration?  I think in several important ways it is the same fear as the terror of dying, just a bit more latent and prolonged, and therefore more menacing than death for some people.  I’ll quote from Shakespeare’s Julius Caesar (III.i. 102-105) here, the conversation between Cassius and Brutus:

Cassius: Why he that cuts off twenty years of life

Cuts off so many years of fearing death.

Brutus: Grant that, and then death is a benefit:

So are we Caesar’s friends that have abridged

His time of fearing death.

There are many ways to respond to one’s own AD and to that of a loved one’s.  One way is to project our own fears onto the other person, who appears a shadow of the former self or as completely incapacitated.   But there is no standard response, even though some “conventional wisdom” (I use the term tongue in cheek here) might be welcomed by many who find the disease and its process most bewildering.  A slight detour here . . .

Bewilder is defined in the Merriam Webster online dictionary as (transitive verb):

1:  to cause to lose one’s bearings (see bearing 6c) bewildered by the city’s maze of roads;

2:  to perplex or confuse especially by a complexity, variety, or multitude of objects or considerations His decision bewildered her. utterly bewildered by the instructions.

And what if we break down that verb into a command – be wilder, wild from the noun wild) to be:

1: A natural state or uncultivated or uninhabited region.

2: (the wilds) A remote uninhabited or sparsely inhabited area.

Now back to my topic. . .

My concern is that there are many faces of Alzheimer’s Disease just as there are many aspects to an individual’s response to a loved one affected by AD.  I am thinking particularly of a recent article published in Kaiser Health News, entitled “How to Help Alzheimer’s Patients Enjoy Life, Not Just ‘Fade Away,’” and you can read that here.  The fact remains that each person is affected by AD is his or her own way and the “preoccupation with the cerebral pathology” (which the psychiatrist Dr. David Rothschild criticized in his 1936 paper on the psychodynamic model of senile dementia) often serves to fan the flames of fear and anxiety over our collective preoccupation with the losses of aging.  There are many other paths to choose here – not just the one of least resistance which is fear based.

© 2017 Barbara Cashman  www.DenverElderLaw.org

Dementia and the Growing Prevalence of Elder Abuse

Not Winter Flowers

Not Winter Flowers

I was reading a list serve post yesterday that told of the member’s father (a retired attorney in another state) who got a call from a scammer claiming to be an attorney working on behalf of a grandchild in trouble with the law.  The post was essentially a “heads-up” kind of post to a new mutation on the old long lost grandchild scam.  You can read an article about how that scam works from the perspective of the scammer here.  Sadly, some other members of the list serve community reported a couple instances of this one when it worked successfully, relieving the loving grandparent of a sum of money.  One such scam was traced to a caller in the Ukraine!  If it sounds like it might never happen to an elder you know, think again – these folks are quite sophisticated.

This is an introduction to some news that I recently read about our neighbors in the UK: Dementia is the leading cause of death in England and Wales.  Read the BBC News article here.

This means that as other health challenges are effectively managed throughout one’s old age, dementia remains in the background so to speak, a silent killer.  It’s no surprise that the bulk of these dementia deaths were of women, as women tend to have a longer life span than men.  What I thought was particularly interesting was this figure: Dementia, including Alzheimer’s disease, accounted for 15.2% of all female deaths, up from 13.4% in 2014.  Is this due to more effective means of diagnosing Alzheimer’s (which ordinarily must be done with a brain autopsy or at least a slice of that organ’s tissue to identify those amyloid plaques)? Or is it due to an actual rise in the number of persons afflicted with the disease, as demonstrated in the graph in the article which shows it steadily overtaking heart disease since 2012?

Dementia is a leading side effect if you will – of our longevity.  This news doesn’t just impact our health and longevity of course, factors mightily in the need for further raising the awareness of elder abuse.  Folks with dementia are likely to be victims of some form of elder abuse, neglect or exploitation.   The burden on the rest of us to be able to detect elder abuse is crucial to our collective well-being.  The community plays a foremost role in the detection of elder abuse in its many forms and so community members – through meals on wheels volunteer, peers at a community center or members of a faith community, can play a major part in this effort.  I don’t want to minimize the importance of prevention, but I think our awareness needs to focus first on the detection of the myriad forms of elder abuse.

My introduction to this post was about a scam by someone posing as a person assisting a grandchild – but most of the reported cases do not involve “stranger danger” as it is called in the child welfare context.  Sadly, when the abuser or exploiter is an adult child or other family member (as the vast majority of such cases appear to be) the elder is faced with a difficult choice indeed because their ability to be maintained in their own home is severely compromised.  We have some battered women’s shelters, but no emergency housing for abused elders.   We simply must be able to move forward with the development of services for at risk elders and design some kind of basic architecture of supportive services.  Right now, everything is dependent on where an elder lives.   How many community resources there are largely depends on local and state funding because whether the detection resources, such as law enforcement and adult protection services, are adequately informed to detect elder abuse – makes a huge difference.

Here’s a link to a very informative program from Nashville Public Television.  Especially as we tout “aging in place” as the best kind of living arrangements for most elders, we must face what that can mean for them and the risks it can pose.  We must respond to this call for being present to our elder community members!  I will write more about what looks to most of us to be a challenging landscape of familial relations and unfamiliar ethical territory.

© Barbara E. Cashman 2016   www.DenverElderLaw.org

Another post about caregiving and living arrangements

Santa Fe sculpture

Santa Fe sculpture

In looking once again at aging in place, let’s look at whether you really need to know what a NORC is and how it is different from a CCRC.

Conventional wisdom dictates that most of us would want to stay where we are as we grow older, but this isn’t always the case.  It depends on the person’s unique circumstances.  Some of these factors include:

The kind of home or condo you own – does it require lots of maintenance and have stairs or other factors that require lots of physical attention?

Is it necessary to drive a car to get groceries, visit friends, or get to social activities, or can you carpool or use public transportation?

Many people don’t think about the social isolation factor of staying in their own familiar home, but if an elder doesn’t have friends or neighbors nearby that can check in on them, elders can become isolated in a solitary and repetitive routine that can be deleterious to their emotional and mental health!

Refining the balance of social engagement and doing your own thing is something that is often required for successful aging in place.  Change is the only constant, but many of us will voice concerns about maintaining our “independence” at all costs.  With so many baby boomers reaching elderhood now, it will be interesting to see the myriad and innovative ways that boomers meet this challenge.  Apart from their huge number, boomers have a relatively high proportion of divorce and remarriage (blended families) as well as co-habitation.  There really is no “norm” for the boomers in this regard!

I think the best advice for folks nearing retirement and hoping to age in place and otherwise stay put is to consider all relevant options and to make a plan.  I particularly like the Dwight Eisenhower quote in this context:

In preparing for battle I have always found that plans are useless, but planning is indispensable.
In my line of work, I find that people often think that sticking to a plan (or more likely, just some fixed idea about how things would turn out) is the most important thing.  As if life were something we could plan and force execution of the plan!  We are so checklist and task-obsessed in our busy world, we tend to forget that the planning process is the both the end as well as the means – not the fashioning of a solid plan which often must be adjusted and sometimes jettisoned.  This is one of the reasons I often refer to the work I do for clients as helping them identify a strategy.

If you want to think about this aging-in-place notion a bit more, here’s a post from Fidelity about success factors to consider in staying put as you grow older.

One of the factors that can help elders age in place is staying put in a place, a community, a neighborhood, that has plenty of supportive services which many elders will need as they age.  Enter the NORC, the naturally occurring retirement community!

The NORC, yes it’s legit, it’s in Wikipedia!  NORCs have been broadly defined as communities where individuals or couples either remain in or move to when they retire.

Of course what is “natural” in the naturally occurring retirement community is a rather broad and generous concept.  This could be as simple as an apartment complex for elders, a housing development or a neighborhood.  As to the neighborhood concept, this has been well-developed by the NORC Aging in Place Initiative, which is a program of the Jewish Federations of North America.  The full name of the initiative is the NORC-SSP, “SSP” being short for supportive services program, which considers the social services appropriate and necessary to foster independent living for elders.

Some of the important factors include financial considerations, which vary widely among those already retired the “semi-retired” and those still years away.  People are generally working longer, and this is probably a good thing for the majority of people, but some have no choice in the matter.

In my last post, I looked at the importance of having this conversation about aging and caregiving arrangements before there is any crisis.  I often work with people (and their loved ones) who suffer from progressive diseases which practically demand such conversations – those with multiple sclerosis, Parkinson’s disease, ALS, as well as other neurodegenerative conditions which have both a physical and cognitive or mental health component.  Some of these folks will do the planning and have the financial ability to choose a continuing care retirement community (CCRC) which is also a kind of NORC.

As I am often reminded. . . . Aging is not for sissies!  It is, of course, best done with a plan including effective durable powers of attorney and other means to choose in the event of incapacity.

I’ll close with a quote from Ralph Waldo Emerson, who reminds us that human growth is always a possibility, no matter where we find ourselves:

Always do what you are afraid to do.

© Barbara E. Cashman 2016   www.DenverElderLaw.org