We discussed eldercare & aging issues—including volunteering, dementia & violence, finding assisted living & nursing homes, palliative care decisions, COVID-19 and compassionate untruths vs. straight talk at the end of life.
Aging & Elder Care
– We began with a question about volunteering opportunities to assist frail older adults in the community – a need that is likely to increase substantially in the months to come. A participant who works for the Jewish Family & Career Services of Atlanta recommended their One Good Deed program that matches a volunteer with one needy elder—regardless of age, race, religion, national origin or ability to pay.
– Per the JFCS webpage of the One Good Deed Friendly Visitor Program…
Become a “friendly-visitor” for a local senior. Provide help with running errands, shopping excursions, cooking a meal together, organizing bills, or simply enjoying an afternoon out. The time commitment is twice a month with a one-year commitment.
… Since 2006, One Good Deed (OGD) has carefully matched more than 400 older adults with community volunteers. These friendly visitors bring companionship and joy to seniors in our community. Our mission is to reduce loneliness, help older adults maintain their independence, and remain in their own homes. https://jfcsatl.org/services/aviv-older-adults/social/one-good-deed
– We briefly discussed the definition of a caregiver. Per a detailed WikiPedia page with lots of references and links (https://en.wikipedia.org/wiki/Caregiver).…
A caregiver or informal caregiver is an unpaid and without formal training (in the related treatment) member of a person’s social network who helps them with activities of daily living.
… The term “caregiver” can refer to people who take care of someone with a chronic illness or a supporter who influences the self-care behaviors of another person. … Adopting a relationship-centered mindset can lead to enhanced motivation for both partners to carry out self-care behaviors and support one another in the process.
– There is an interesting commentary on an effort by the Pioneer Network (http://www.pioneernetwork.net/) to change the culture of caregiving by encouraging use of the term care partner in place of caregiver….
Caregivers or care partners? by Kelly Sheets – Jun 5, 2015
…Words have power. I think using the title “Care Partners” is a great way to change the conversation about the role of the people who care for our seniors. … I do believe, how we talk to and label people matters. I also believe we can create a revolution and change our senior care culture, while continuing to call people Caregivers – because the value we place on someone and their work day-to-day transcends the label we put on the job. And I believe that is where true change comes from.
…So until a time when Care Partner becomes ubiquitous, I will continue to use the title Caregiver with the utmost respect and continue to value the people who do this important work.
Caregivers or care partners?
– We discussed the difficulty that care partners face in cases where a person with dementia has a tendency to be violent. It was noted that—although agitation and episodic verbal aggression are common in late-stage dementias—only a small fraction of those with impaired memory ever become physically violent. Understanding the triggers for aggression, training on how to manage it, and skilled communication can be effective in mitigating such difficult episodes. Sometimes a little bit of anti-anxiety medicine can help and—if all else fails—outside help is indicated. It was also noted by our attendees most knowledgeable of dementia care that many affected persons live well w/dementia.
– Fortunately, there are quite a few resources for managing violent behaviors when there is dementia, e.g., the Alzheimer’s Association has an excellent page on their website with tips on isolating the immediate causes of the undesirable behavior—including common types of physical and emotional discomfort as well as environmental factors. There are also several practical suggestions on how to communicate and help them to reduce the source of their agitation and calm down.
o Alzheimer’s Association – Aggression and Anger
Aggressive behaviors may be verbal or physical. They can occur suddenly, with no apparent reason, or result from a frustrating situation. While aggression can be hard to cope with, understanding that the person with Alzheimer’s or dementia is not acting this way on purpose can help.
o When Alzheimer’s Disease Takes a Violent Turn – Can you forgive someone you love for abusive behavior when an illness is to blame? Apr 2, 2018 (Source=Theresa’s Fund & DomesticShelters.org… the first and largest online and mobile searchable directory of domestic violence programs and shelters in the U.S. and Canada, and a leading source of helpful tools and information for people experiencing and working to end domestic violence). https://www.domesticshelters.org/articles/health/when-alzheimer-s-disease-takes-a-violent-turn
o Tips for Dealing with Violent Behavior.Dementia.org – February 03, 2014.
Violent behavior among dementia patients can be frightening and frustrating for care providers. As caregivers start to feel “burnt out,” they may also lose empathy for the patient. Recognizing and treating violent behaviorcan help improve quality of life for patients, as well as people close to them…. https://www.dementia.org/dealing-with-violent-behavior
o Behavioral Disorders in Dementia: Appropriate Nondrug Interventions and Antipsychotic Use.
Tyler R. Reese, MD; Derrick J. Thiel, MD; Katherine E. Cocker, DO — Tripler Army Medical Center, Honolulu, Hawaii – Am Fam Physician. 2016 Aug 15;94(4):276-282.
Behavioral and psychological symptoms of dementia pose management challenges for caregivers and clinicians. First-line nonpharmacologic treatments include eliminating physical and emotional stressors, modifying the patient’s environment, and establishing daily routines. Family members and caregivers benefit from education about dementia symptoms and reminders that the behaviors are normal and unintentional. Cognitive and emotion-oriented interventions, sensory stimulation interventions, behavior management techniques, and other psychosocial interventions are modestly effective. In refractory cases, physicians may choose to prescribe off-label antipsychotics. https://www.aafp.org/afp/2006/0215/p647.html
– We discussed difficult family decisions about caring for a frail loved one who suffers a sudden fall or other health issue that requires rehabilitation or long-term skilled nursing care, which cannot feasibly be provided at their current residence. In some cases there is little or no choice due to the lack of available beds in the area.
Sometimes, there might be two or more nursing home options, but little or no time to investigate the best one. A search of the Medicare Nursing Home Compare or ProPublica Nursing Home Inspect databases, the Green House Project (https://www.thegreenhouseproject.org/) and Eden Alternative (https://www.edenalt.org/) websites, stories in a local newspaper archive, reviews found on the internet (e.g., via Google, Duck-Duck-Go or Yelp), and local chat groups or social network archives (such as NextDoor.com) might help inform such a decision.
If more time is available to investigate—or if you believe that a suitable nursing home might be needed in the near future—an informed local opinion can be obtained by speaking with a government-funded state (or local) long-term care ombudsman (https://ltcombudsman.org/), a hospital discharge nurse, a hospital social worker, or ideally, a paid geriatric care manager. With the current COVID-19 pandemic, the need to investigate acceptable assistive living residences and nursing homes is even greater, as infection control has been a common problem in many of these places.
– At one of our recent meetings a participant described a nursing home comparison tool developed by ProPublica, an online, nonprofit, investigative-news organization (https://www.propublica.org). It’s called Nursing Home Inspectand uses nursing home inspection data from the U.S. Center for Medicare and Medicaid Services (CMS). You can search over 60,000 nursing home inspection reports[and]examine deficiencies cited by state regulators and the penalties imposed in the past three years. It also supplements the existing CMS comparison tool (Nursing Home Compare– https://www.medicare.gov/nursinghomecompare/search.html) by giving a more accurate and detailed assessment of inspection violations and penalties. See https://projects.propublica.org/nursing-homes/.
– In a discussion of difficult (sometimes end-of-life) caregiving situations, an experienced care partner said that compassionate untruths (aka, ethical lies or fiblits) are sometimes beneficial for those with impaired memory. For example, it could be unwise to contradict a loved one who persists in the belief that a deceased family member or good friend is still alive.
– We also discussed the wisdom and ethics of not telling a frail loved one about their recent diagnosis or prognosis, if the family believes that news would be unduly disturbing. A participant noted that in parts of Asia (e.g., Indonesia) and other cultures the denial of death is common. Some cultures believe that even talking about death is taboo and can lead to negative consequences. It should be noted that it is unlikely such information could be kept from the patient in the U.S. due to doctors’ legal and ethical requirements.
– We discussed the cultural dilemma faced by a Chinese-American family versus their relatives in China, who insisted on maintaining an end-of-life secret related to the family matriarch—portrayed in The Farewell, a recent movie seen by two of our participants. See trailer: https://www.imdb.com/title/tt8637428/
A Chinese family discovers their grandmother has only a short while left to live and decide to keep her in the dark, scheduling a wedding to gather before she dies.
– To show that these communication concerns were not new, a participant read a Florence Nightingale quote from her 1860 book on nursing where she stresses that we should be realistic in speaking to a loved one about their impending death.
… there is scarcely a greater worry which invalids have to endure than the incurable hopes of their friends…. I would appeal most seriously to all friends, visitors, and attendants of the sick to leave off this practice of attempting to “cheer” the sick by making light of their danger and by exaggerating their probabilities of recovery. Florence Nightingale in Notes on Nursing What It Is, and What It Is Not – Chattering Hopes and Advices. Published by Carter (Boston); p73. https://en.wikisource.org/wiki/Page:Notes_on_Nursing_What_It_Is,_and_What_It_Is_Not.djvu/97
– We discussed the end-of-life decisions that frail older adults, doctors and other care partners must make when a broken bone or other health event would—for most healthier persons—normally lead to major surgery or other intensive medical intervention. It was noted that in some cases—even while such a person is in hospice—heroic interventions are advisable to relieve distressing symptoms that are not otherwise effectively treated with less-invasive palliative measures. By lessening their suffering, such treatments could be helpful for those patients and their loved ones and care partners by helping to calm their minds.
– Palliative Surgery (Definition). McGraw-Hill Concise Dictionary of Modern Medicine, 2002. The McGraw-Hill Companies, Inc, accessed on 19 March 2020.
Surgery to relieve symptoms or improve quality of life, usually in patients with incurable illness.
– Now that the new (corona virus disease) COVID-19 is rapidly spreading locally and in many parts of the U.S. and world, we are strongly reminded of our vulnerability to illness and death. While Buddhist practitioners are encouraged to contemplate this reality on a daily basis without fear or negativity, it’s important to remember that many people view this worldwide pandemic as very frightening. Our DLM teachers have encouraged us to be aware of others’ suffering and generate the wish to help them remove it through our enlightened thoughts and actions.
– A New York City restaurant manager—reflecting on the pandemic’s likely effects on her restaurant and her city—recited this (seemingly Buddhist) Norwegian Proverb (Heard on the March 20, 2020 episode of The Daily, a New York Times podcast)…
It will either go well …or it will pass…and we’ll get through it.
– His Holiness The Dalai Lama has some advice for those of us who might be thinking more often about the timing and circumstances of our deaths…
If you spend some time thinking about old age, death, and so on, your mind will be much more stable when these things happen….That’s why I believe it can be useful to prepare yourself ahead of time by familiarizing yourself with the kinds of suffering you might encounter.
Insight from the Dalai Lama (Daily Calendar). Andrews McMeel (Publisher), Kansas City, Missouri; 2017.
– Below are some trusted websites that have accurate information about the COVID-19 pandemic as well as safe links to maps, tables, fact sheets, tips, myths, news articles and related resources. Internet security experts are telling us to be cautious about clicking on other COVID-19 information obtained from social media links or unverified sites, as some have been known to download malware.
Centers for Disease Control and Prevention https://www.cdc.gov/coronavirus/2019-ncov/index.html
Georgia Department of Public Health https://dph.georgia.gov/novelcoronavirus
Johns Hopkins University https://hub.jhu.edu/novel-coronavirus-information/
World Health Organization https://www.who.int/emergencies/diseases/novel-coronavirus-2019
National Institutes of Health https://www.nih.gov/health-information/coronavirus
Atlanta Journal Constitution https://www.ajc.com (free access during the outbreak)
You might wish to share some or all of these sites with your friends, family and neighbors to assure that they have accurate information, as we enter the most challenging phases of this outbreak.
Thanks to all who participated in our regular monthly discussion on February 16th. Stay tuned for a follow-up email in a week or so with tips on calming our minds and safely caring for ourselves and others as we work our way through this pandemic.
Meanwhile, you and your loved ones can join us in viewing many past and some current DLM teachings and practices via the LiveStream icon on the DLM Website home page (http://www.drepung.org/).