Making plans for dementia, just in case

When and how might we—or friends or family—know the time has come to get additional support if we should develop dementia? At what point would moving have been less traumatic for Traci? For Quinn? There are no easy answers, but some pondering and research have led me to these behavioral warning flags. I can communicate this list to my partner and friends in advance of dementia striking any one of us, and agree with them that repeated patterns of these behaviors will shout “Get Help!”:

  • Time disorientation, specifically regularly missing appointments, arriving on the wrong day or time routinely. My mother’s hairdresser dropped her as a client after too many missed appointments. A friend frequently misses lunch appointments. These are signals.
  • Space disorientation, being unable to find the way home, or to the restroom in a building they should know well. Arriving at a familiar intersection and having no idea which way to turn. Every one of the dementia victims I know suffers from this.
  • Short-term memory issues such as repeating the same question over and over, or constantly searching for lost dish/glasses/shoes. We all do this sometimes, but it is the frequency and persistence of this behavior which is the signal.
  • Problems with any of the Adult Daily Living functions (dressing, toileting, medication, eating).  20.7% of adults aged 85 or older needed help with ADLs

If any of those became routine behaviors in me or my spouse, I would seek a consultation with a physician and/or neurologist for diagnosis. Some dementia is the result of medications; geriatricians have a list of those. Some dementia symptoms are induced by anxiety. A physician or neurologist might seek additional assessment as part of the diagnosis.  Our community’s annual physical (and our entry physical exam) includes some mini-mental status questions. Data and diagnosis in hand, it would be time for decisions. Be at home as long as possible? Hire caregivers for at least part of the time? Or utilize that continuing care contract ASAP?

 In my case, I am aware that I am impatient, irritated and exhausted with the behaviors associated with dementia. I feel strongly that my loved ones should not be expected to endure such stress daily if I were the one to fall victim to dementia. I believe I would also be happier settling in earlier to a Health Center or other institutional environment, when I might still be able to understand and remember the love and care that my family exhibited in ensuring my care and theirs.  It sounds easy, and maybe it will be, but if I should be the victim of that dastardly dementia, I would want care which helps me remain safe and engaged with life, and able to be as independent as the disease would permit—in a Health Center setting. This  is why we live in a Continuing Care community, an economic luxury for which we are very, very grateful.

Moving my demented friend to fulltime care

Sharing my experience of moving my friend with dementia into our community’s Health Center where Assisted and Nursing Care are available as part of our contract.

My friend, Traci (not her real name of course) is 90, virtually devoid of short term memory and sometimes very anxious—a bad combination. When she gets anxious about the whereabouts of her husband (Quinn in my narrative), she might search the neighborhood for him. Neighbors have learned to gently guide her home if she is walking alone.

Sometimes, Traci is running away, because Quinn, 93, gets angry at her repetitive and constant questions “Would you like a cup of coffee?”   Some neighbors are convinced that her anxiety is causing her dementia and that Quinn is simply abusive while others have urged for many years that her dementia be handled professionally in our Health Center. Quinn has been unwilling to relinquish the full responsibility for care of his beloved wife of 70 years. Whenever he spoke of it to Traci, she cried or ran away. Traci is loving and attentive, tidying up tables and stacking plates as she did years ago in the restaurant they owned.  A meal with Traci may include 10 or more queries about refilling your coffee or tea.  She is normally calm, caring and kind.

Recently, Quinn fell and was hospitalized; as her friend, I was asked to stay with Traci who could not be left safely alone.  She had watched her husband leave in an ambulance but could not remember it and had no idea where he was. For hours, I sat with her, ate with her, kept her safe while repeatedly calming her with stories and tidbits of information. When it was clear that Quinn would remain overnight in the hospital, I led her to the Health Center, away from her home, her cat, and her possessions knowing she would never return. We took nothing with us. I walked with her to a room, explaining that she would wait there for her husband’s return the next day and left her to the care of the nursing staff.

Meanwhile, our Health Center staff had obtained permission from their son/Power of Attorney to move Traci to the Health Center during Quinn’s hospitalization. Their son had already slowly begun the process of permanently moving them both and he agreed to hasten that process.  By nightfall of the day Quinn had fallen, Traci was safely a resident in the Health Center. Quinn returned to the Health Center a few days later; he too would never again return to his former home. A week later, Quinn and Tracy were united in a new shared suite in the Health Center with furniture, possessions and cat.

Everyone who knows them celebrates that they are safe and together with 24/7 professional care. I am relieved, emotionally drained, physically exhausted, and deeply regretting that the move had not happened long ago. The “what-ifs” are haunting: What if their son had been unavailable? what if a transition hadn’t already been planned? what if they hadn’t had such strong community support? what if they didn’t live in a community with a Health Center contract?

We are the Tsunami..

Seniors lining up for food aid vouchers in Hong Kong. Lam Yik Fei for The New York Times

Today’s New York Times carries yet another article about the huge wave of elderly in need of more services than their countries can provide. This particular article focuses on Asia, particularly Japan, where almost a third of the population is over 65. The US is not far behind, with 17% of our population already over 65, and an expected 21% of us over 65 by 2040. As an elder closer to 80 than 65 years old, I care greatly about the impact of these numbers on me, my agemate friends and our children.  I am worried about

  • The difficulties in hiring caregivers for my age group. As I near 85, it is increasingly likely that I will need a caregiver; in 2018, the percentage of older adults age 85 and older who needed help with personal care was 21%, a number that will increase with each birthday. My effort to hire a caregiver for my mother just 15 years ago resulted in cash payments to a non-certified community of women with varying levels of skill and experience.  My husband and I were adamant that we wouldn’t do that to our children and thus we live in a senior community, where the task of hiring caregivers is part of what we pay for.

  •  Social Security and Medicare funding is simply inadequate, and the burden is too heavy for future generations – my children and grandchildren—to carry.  These entitlement programs are critical to my economic independence, and yet those who are funding the program are simultaneously being robbed of the financial ability to adequately prepare for their own retirement.  Entitlement programs are already politically divisive; that will continue. I recall that FDR’s social safety net, Social Security, was most popular among those with aging parents, who knew that taking care of grandma for many years wasn’t a good idea for them. In 1940, elderly parents had the good grace to die at age 60 for men and 65 for women. The actuarial tables used by Social Security anticipate that I have another 11.6 years ahead of me and many of those years could require extensive care.

  • The lack of caregivers and the expectation that elders will age without burdening their children creates an unhealthy isolation for many of us.  A recent CDC report states that about one-forth of the over-65 cohort is socially isolated, and that number is highest among the most elderly. The report goes on to cite the health impact of isolation:
    • 29% increased risk of heart disease  
    • 32% increased risk of stroke.
    • Higher rates of depression, anxiety, and suicide.
    • Among heart failure patients, a nearly 4 times increased risk of death, 68% increased risk of hospitalization, and 57% increased risk of emergency department visits.

What to do? Hope for technological answers to caregiving (robots and more AI are coming very soon). Vote for candidates who acknowledge that the solutions aren’t easy, but who are willing to address the issue. Encourage medical providers to consider the negative impact of expensive late-life care.  Address immigration meaningfully, to offset the decline in the population of workers and taxpayers.. Examine housing constraints against multi-family units, to permit aged seniors to share housing.  More?

 Our government keeps copious statistics about aging, and issues regular reports citing the details of these numbers. Here are some of those reports should you wish to deep-dive into the statistics:

The dangers of New Year’s Diets for the Elderly

My joy in celebrating a New Year is often dampened by the absolute onslaught of advertisements and resolutions featuring diet products claiming to extend your life, improve your social life, etc.  The amount of science behind those claims is debatable at best, and perhaps even dangerous for us old folk.  The trillion dollar diet industry has everything to gain by getting us to buy their products, and money is a welcome excuse to ignore the science. Here’s the truth, with a couple of scientific articles tossed in:

  1. Folks, we are all going to die, but BMI is not a good predictor of lifespan in the elderly. In fact, a BMI of 31.7 is categorized as morbidly obese but in the over 70-cohort is the BMI least associated with mortality.  Furthermore, “a broad range of BMIs are well tolerated by older adults.” Read the article for yourself. A second article goes a bit further to say that “Low BMI and weight loss are risk factors for mortality in the elderly and smoking habits did not significantly modify that relationship. The BMI ranges with lowest risks for 15 y mortality are relatively higher in elderly.” A 2017 Chinese study reiterates “Among older persons aged 65 and above, the overweight-or-obese category of BMI was not associated with excess all-cause mortality.”
  2. Weight loss is common in the elderly, as we get shorter and our systems become increasingly less efficient and less responsive to various feedback loops associated with aging.  It’s not a bad thing to enter old age with a little extra weight, in preparation for illness or normal aged weight loss. Read the article about normal weight loss in the elderly here,
  3. Finally, excess weight may actually be preventative in bone mineral density (BMD) loss.  Body composition (lean mass, fat mass, and soft tissue mass) in older men is positively associated with BMD at all sites of the body (arms, legs, and trunk).

Thanks for allowing me to vent, though I could go on talking about the serious risks of yo-yo dieting to cardiac health, the probability that weight loss won’t endure in most, and the reduction in injury for overweight elders who fall (as we all will).

Child Resistant Pill Bottles….

Louise Aronson, in her recent book Elderhood, cites the story of child resistant pill bottles to illustrate the casual disregard given to the needs of the elder generation when medical, governmental and corporate decisions are made.

Most of us remember when pill bottles were easily opened.  Children were often rushed to emergency rooms for stomach pumping after swallowing entire bottles of “candy.” My college roommate actually loved the taste of aspirin.  As a child, she had been hospitalized several times because of her ability to find the carefully hidden family supply of aspirin. It was obvious that pills should be more safely packaged. Thus, pediatricians and parents worked with lawmakers to pass the Poison Prevention Packaging Act in 1970, recommending pill bottles like the one pictured here. Almost immediately, the death rate from poisoning of children under five was cut in half.  Success!  Lives saved…EXCEPT

Half of those 65 years old or more have arthritis, a diagnosis which increases with age.  For those with arthritic hands, child resistant pill bottles are so difficult to open that the elderly often chose to leave the bottles open or they transfer the pills to bowls, or worse, they don’t take the medicine at all.  By 1995, 20% of children poisoned found their pills at the home of their grandparents, who had removed their medicines from the child resistant containers.  The Consumer Product Safety Commission met with stiff opposition from lawmakers and manufacturers when they recommended expansion of the testing age from the original 18 to 45, to include testers up to age 75.  Ultimately, CPSC compromised to include testers of pill packaging up to age 70. To underline the point,

it was 1995 before CPSC recommendations for changes to child resistant packaging included testers up to age 70!!

The pill bottle seen above is the current standard for child resistant packaging.  How many 80-year-olds can readily open this container?  What would the container look like if the testors had included 95-year olds?  I consider myself incredibly lucky to live in a senior community where prescriptions are filled in easy open containers. I’m pretty sure I could no longer open the pictured container. 

The point here isn’t really about children and pill containers. Aronson’s message is that public health and medical decisions may be successful for one segment of society, but too often do not consider the impact on the elderly and their health.   There are far more serious situations where the lack of inclusion of the elderly is incredibly dangerous.  Take a look at this graph, which I stumbled upon while researching child poisoning.   The graph tells many stories, divided by age group, some of which are listed below the graph.

JAMA. 2021 Oct 5; 326(13): 1–11. Published online 2021 Oct 5. doi: 10.1001/jama.2021.13844

A few of the many conclusions include:

  • Emergency Department visits due to accidental (unsupervised) child poisonings are about 2 per 1000 population.  That’s amazing! And a sign of the success of the efforts of lawmakers and manufacturers to develop child resistant medicine containers.
  • About twice 4 per thousand adolescents use medications for self-harm and many adolescents abuse medicines.  The mental health of our adolescents is a major public health problem, one not so easily solved with medicine bottle design.
  • The last two columns of this informative chart point out the dramatic number of adults, particularly those over-65  who end up in the Emergency Department due to complications of medicines taken therapeutically!  The causes of this problem include inappropriate dosing, inadequate testing in the elderly and the increasing frequency of co-morbidities in the elderly.  “Iatrogenic illness”–defined as illness caused by medical treatment–is the fifth leading cause of death in the world. Both this chart and common sense would indicate that death associated with iatrogenesis in the elderly is even more common.

The focus on saving child lives worked well for pill bottles.  The 1995 CPSC revision recommending inclusion of testors from age 18-70 was a significant improvement in the health of both the elderly and their grandchildren, even though 85 year olds may still be unable to open the bottle above.  But again, this is merely an example of a systemic problem in which the elderly are overlooked and ignored when safety and efficiacy are under consideration. A far more dangerous example of that deficiency is found in clinical testing and prescriptive doses of medicine, and the entire topic of iatrogenic illness– a topic worthy of its own consideration on another day. 

Politics, Aging, and Auditory Processing

Recent news stories here in Pennsylvania feature discussions of the “auditory processing disorder” (APD) of our senatorial candidate, John Fetterman. As he explained prior to his nationally watched debate with his Republican opponent: “I might miss some words during this debate, mush two words together….” He was provided with a monitor on which he could view transcripts of the questions and his opponent’s responses—but was still clearly struggling. How tragic it would be if his temporary affliction cost him the election, especially given how many of us also suffer from “auditory processing disorder.”

The good news is that the concept of auditory processing disorder as an adult problem has entered our awareness.  Previously, APD was primarily associated with children and learning difficulty, often with autism and ADHD.  One study reports that 42% of children identified as learning disabled have APD. There have been few studies and fewer statistics about the incidence of APD in adults, particularly in the elderly.  And yet, we elders know it exists; we reveal the existence of APD in regular conversation….

  • recently, one of my neighbors asked for computer help, saying that the Geek Squad guys spoke too quickly for him to understand,
  • a long time friend recounted with great sorrow that his cochlear implant wasn’t effective because his “brain was simply too slow” even when he could hear;
  • on our recent cruise, some passengers insisted that the guides speak better English, as their accents made them hard to understand. 
  • My husband and I routinely use closed captioning when watching TV; when we are not straining to comprehend, we are better able to comprehend the plot.

So why is there so little attention on adult and elderly APD?  To some degree, APD is compounded by the inevitable hearing loss in elderly adults –two thirds of those over 70 have hearing loss—and the prevalence of cognitive decline. To quote from a 2017 online publication

“Successful communication and navigation in cocktail party situations depends on complex interactions among an individual’s sensory, cognitive, and social abilities. Older adults may function well in relatively ideal communication situations, but they are notorious for their difficulties understanding speech in noisy situations such as cocktail parties. However, as healthy adults age, declines in auditory and cognitive processing may be offset by compensatory gains in ability to use context and knowledge….. “

We elders regularly see advertisements for cochlear implants, and more recently for hearing aids.  None of these sales pitches mention that the communication problems attributed to hearing may not be simple hearing loss.  Rather, studies and therapies addressing the complex interplay of auditory and cognitive processing in the elderly are desperately needed. Thanks, John Fetterman for helping us “normalize” auditory processing disorder. His APD may be temporary, a consequence of a recent stroke. For we elders, APD has been an un-named, untreated path to permanent cognitive decline.

End of Life is Like A Fine Sunset

To answer the questions asked in the previous post about when and how we disengage from frenzied life, I gathered some very wise responses from thoughtful friends.  I particularly liked these two:

  • Bernard Berenson writes that ‘ the end of life should be like a fine sunset’. I’m not sure that’s what our community fosters, but yet it is what I seek and try to make reality. Our community wants us to keep going and giving and doing. Doing what we always did and more so.That is how many residents see their lives and what administration rewards and recognizes.  

Actually most of us are not at the end of our lives yet. These are our last years, yes. But aware of that as I am, I want to make the best of these last years and to me that doesn’t mean doing what I used to do. It means trying and being and doing something new and, more so, being what I always have been but never took or had the time to realize.

  • Balance in our frenetic world requires paying attention to those signals of feeling rushed, pushed, holding our breath, feeling our shoulders up near our ears.  My mantra has been you have time or there is enough time.  The Dalai Lama long ago cautioned us not to be misled in thinking we have to keep pace with our technical devices.  At another time he advised that There is more to life than increasing its speed. 

Aren’t I lucky to have such amazing, thoughtful friends? 

Return of the Frenetic Life

Even in isolation, it feels like this.

It didn’t take long for the relaxation of the cruise to wear off.  We arrived home on Saturday afternoon, tired and footsore after a long day.  In accordance with our plan, we raced off to the grocery before exhaustion could set in and prepared to hunker down for several days to avoid conveying any errant viruses to our friends. 

Even without any physical contact, it took only a few days to realize how frenetic life in this senior community really is.  The pervasive mantra of “Be engaged” and “give back to the community” has generated wonderful, engaging, can’t say “no” projects.  Indeed, many of us measure our meaning in life by how useful we are to our communities—very much as we all did during our entire adulthood.  Free time had little priority while living up to our potential to engage with the world and its infinite needs. 

But wait, when do we reach the stage of life when we toss off those dragon scales of Social Expectation (a la Joseph Campbell)? When is there time for meditating or reflecting on life and connections, essential to creativity and spirituality and enlightenment (per Buddha, Jung, Richard Rohr and so many more).  Are we, as senior citizens denying aging by staying busy, and carrying our adult expectations into old age?  

The Invisible Older Woman, Part II

She Who Was the Helmet Maker’s Beautiful Wife, Auguste Rodin

An erudite literary commentary by Akiko Busch in The Atlantic, entitled the “Invisibility of Older Women” connects an older woman’s decision to decrease public presence with an increase in empathy and insight into the broader world. Her commentary takes my simple little observation in an earlier post about invisibility to an entirely new perspective.

In her article (based on her book “How to Disappear: Notes on Invisibility in a Time of Transparency”), Busch is saying that the sense of invisibility begins with the older woman’s choice to limit when and how she is seen. Weaving examples ranging from Hitchcock movie characters to Virginia Woolf’s Mrs. Darroway, Busch posits that this volitional change in appearances is the basis from which empathy and a broader sense of the world evolve. Ironically, as the identities of the women becomes lost, their understanding of the broader universe is enhanced. Ultimately, their identities become transparent; they are lost: “And it’s probably not the worst thing for any of us to imagine identity as arrangement of letters written for a few moments on the clouded window of a train that is speeding out of view.”

Sounds like death to me.  A willing acceptance of death demands a belief that the world is larger than the individuals within it; logically that acceptance allows us to die.  This takes us to Busch’s concluding statement:

“Invisibility directs us toward a more humanitarian view of the larger world. This diminished status can, in fact, sustain and inform—rather than limit—our lives. Going unrecognized can, paradoxically, help us recognize our place in the larger scheme of things”

Death as Normal

The cemetery at the Kennett Meeting House

Almost every month, there are two resident deaths in our senior community of 400 residents; the deaths are typically balanced by the arrival of two new residents—a dynamic equilibrium of mortality. Typically, a notice is posted, sympathy expressed, and memories of the deceased briefly shared by those who knew them. A memorial may happen although the pandemic sharply curtailed those.  In our Quaker-based community. If there is a memorial it will probably be a simple opportunity for reflection on the deceased’s life and meaning to others. Within weeks, the home of the deceased may be prepared for new occupants. The arrival of new residents adds new passion and flavor to the community and thus the community remains dynamic, not just a “place where people go to die.”

A majority of new residents move into the community as a couple, thus, many deaths in our community are accompanied by the profound grief of the surviving partner.  Watching the community embrace the surviving partner with love, acceptance and support is a constant reassurance for those of us still in partnership. (Professional grief counseling and group grief workshops are ongoing as well.) The awareness of that loving support makes it both easier to die and easier to survive, as experiences of grief are lovingly shared.

Death here is “normalized” as a natural, regular, expected occurrence which ends the life of the individual but not of the community in which they lived.  I think that churches or other communities could normalize death in this way: acceptance of death’s inevitability, recognition in memory of lives well lived, respect and support for the profound grief of survivors, and intention to ensure that the community remains dynamic beyond the deaths of individual members.

When death is viewed as normal, a simple ending phase of life well lived, it is easier for the community to move on. Our senior community is a very good place to live a long and engaged life; it is also a very good place to die.