We discussed eldercare & aging issues—including the sad state of most long-term care versus the Eden Alternative, intensive (deep) listening to frail elders, impaired hearing & dementia, Buddhist & other approaches to aging and pain management, and Advance Directives.
Aging & Elder Care
We discussed the growing Green House Movement to transform long-term care in America, based partly on the construction of small, specially-designed buildings with staffing and rooms that provide a home-like environment. This month we discussed the Eden Alternative, the earlier movement also started by Bill Thomas, MD, that seeks to introduce more patient-centered care in existing long-term care facilities.
Per their website The Eden Alternative® is an international, non-profit 501(c)3 organization dedicated to creating quality of life for Elders and their care partners, wherever they may live. Through education, consultation, and outreach, we offer person-directed principles and practices that support the unique needs of different living environments, ranging from the nursing home to the neighborhood street. https://www.edenalt.org/
As of November 15, 2019 the Eden Registry Members within 100 miles of Atlanta are:
o A.G. Rhodes Cobb – Marietta, GA https://www.agrhodes.org/our-homes/cobb/
o St. George Village – Roswell, GA http://www.stgeorgevillage.com/
o Wesley Woods – Newnan, GA http://www.wesleywoods.org/
o The Oaks at Hampton – Cumming, GA https://www.oaksseniorliving.com/oaks-at-hampton/cumming-ga
FOLLOW UP: We received the following note from a member who read these notes.
“You may be interested to know that Rose Villa here is re-building their nursing home unit over the next couple of years, scrapping their outdated hospital model for a series of “house” style structures arranged around courtyards, with each module having a consistent staff, a day room with daily meals together finished from a unit kitchen, and generous individual rooms. I have also seen advertised this week a new collaboration between Kendall Corp, a well-respected Quaker non-profit chain of continuing care elder care communities (the whole spectrum from independent to nursing home) mostly in the NE, and San Francisco Zen Center, in Sonoma, AZ, which will have a Buddhist focus and lifestyle. Doubtless pricey as most places are these days, but non-profits do offer more bang for the buck and better care without the profit motive or greedy investors.
I would advise anyone seeking a place in a good community to get themselves on a waiting list well in advance, because the baby boomers are retiring at a rate of 10,000 a day now. Our waiting list has shot up to 3-5 years, depending on floor plan. Check to see if you stay at the top of a waiting list with first refusal, too: some places put you back at the bottom if you turn a spot down.”
We discussed how—as we age and lose abilities to function and become less active, it was important to become more aware of these changes; be more accepting of what can’t be changed; and, be willing to accept the help and support of others.
A participant described a recent news article about self-awareness in infants, which typically appears at about two years old when they look in a mirror and realize they are seeing their own image. It is interesting that several species of animals have also been found to respond to the mirror test. Self awareness—especially the later-acquired ability to be aware of one’s thoughts—is necessary for higher-level human social and spiritual functioning. We then discussed how self-awareness declines in late-stage Alzheimers Disease. See:
o Infant cognitive development (Wikipedia) https://en.wikipedia.org/wiki/Infant_metaphysics
o Mirror test (WikiPedia) https://en.wikipedia.org/wiki/Mirror_test
o Self-awareness (WikiPedia) https://en.wikipedia.org/wiki/Self-awareness
Individuals who suffer from Alzheimer’s disease lack awareness; this deficiency becomes more intense throughout their disease.
One participant described being saddened by visiting a very frail colleague in a nursing home, who had no mobility and very poor hearing. He seemed to be trapped there with few visitors after having substantially helped his visitor and many others during his lifetime. This led to a discussion of the sad state of most long-term care facilities in the U.S., most of which are based on a for-profit hospital model but are typically understaffed with poorly-paid caregivers.
We also discussed how—even when the ability to communicate with frail loved ones is very limited—it can help to show up and witness and merely be present with them. And, the practice of intensive (or deep) listening—even when the visitor cannot affect the care situation of the resident—can be very beneficial. Participants gave examples of how this worked in their own caregiving experiences, e.g., for a nursing home resident found to have enjoyed gardening, a visitor might bring them to a botanical garden where wheelchair access is available. One experienced care partner added that it was important to patiently spend time to learn about the person and be open to hearing their story.
Intensive listening by a medical professional, social worker or other care partner involves attentive and empathetic listening to a frail or troubled person who might have difficulty communicating their feelings, beliefs or desires. A certified Buddhist-inspired version of this, started in Ireland in 2003 in the RIGPA Spiritual Care Program by Psychotherapist Rosamund Oliver, is Deep Listening. See Awareness Centred Deep Listening Training (ACDLT) https://www.deeplisteningtraining.com/index.php
Atul Gawande, MD’s Being Mortal was mentioned as a book that describes a set of related problems in the medical care of frail elders. This best-selling book addressed the difficulty that most western medical practitioners have with accepting death. Per his book he demonstrates the importance of shifting our emphasis so that the ultimate goal is not a good death but a good life – all the way to the very end. See:
Being Mortal – Medicine and What Matters in the End. Metropolitan Books; 2014; 304pp
We discussed the common problem that many older adults have with impaired hearing. It was noted that there were recent technical advances in hearing aid technology, but a persistent problem is that most hearing aids magnify ambient noise as well as speech. The cost of advanced hearing aids can also be substantial and they are not covered by Medicare or most other health insurance plans.
A low-cost option that worked well for two of our caregiver participants was a small battery-operated personal hearing amplifier that, when placed near the person speaking, can minimize the ambient noise problem. These amplifiers were initially sold by Radio Shack (now out of business), but equivalent versions are now offered by Reizen and others for about $30.00 via Amazon or other large online retailers. These work best in noisy environments with a set of headphones, such as the lightweight set sold online by Panasonic for about $6.00. Another option is to use one of the inexpensive hearing amplification apps available on smart phones.
A couple of our participants learned about the connection between impaired hearing and dementia at the 2018 Emory Alzheimer’s Disease Research Center (ADRC) 15th Brain Health Forum. http://alzheimers.emory.edu/ .
At that Forum Doug Mattox, MD of Emory University presented research findings from the Baltimore Longitudinal Study of Aging that showed the risk of all-cause dementia was 1.9 times higher for adults with mild hearing loss versus those who had no hearing problems, 3.0 times higher for moderate loss, and 4.9 times for severe hearing loss (Hearing Loss and Incident Dementia – Frank R. Lin et al.; Arch Neurol, 2011 (https://jamanetwork.com/journals/jamaneurology/fullarticle/802291). Dr. Mattox said that hearing aids might mitigate the effects of hearing loss and lessen cognitive decline. A cochlear implant—although quite expensive—can stimulate the auditory nerve, replacing the function of lost hair cells, and give dramatic improvements in hearing for some persons.
Another speaker, Helena Soledar, Audiologist, has studied (with Dr. Lin) the effects of hearing aids on dementia. She reviewed the state-of-the-art of hearing aids and stated that two-thirds of those who are age 70 or older have some degree of hearing loss and more than half of those also had tinnitus (ringing in the ears). However, she said that denial causes hearing-impaired persons to wait an average of 7-8 years before seeking help. She recommended a hearing resource website (supported by the Hearing Industries Association) at http://www.betterhearing.org.
We discussed Buddhist approaches to coping with painful health conditions. A participant recalled that a visiting DLM monk once said that the physical tolerance of pain could be lessened by observing that its intensity varies over time in a wave pattern. He said that knowing that intense pain will eventually subside can help tolerate it. Applying this approach, one of our participants said she tries to observe her pain and be open to what happens. She said that she feels that she could live with a certain amount of pain.
In a March 29, 2015 DLM Eldercare Planning Meeting, Dr. Pema Dorjee, a renowned visiting Tibetan Physician told our group that pain can be reduced with hot milk, tea, a little whisky or rum or western (allopathic) pain medicines. Among his many honors and accomplishments he is the author of several books and articles on Tibetan medicine, including The Spiritual Medicine of Tibet. He said that Tibetan elders often have a small cup of Chhaang/chang, a mildly-fermented drink at bedtime to relax them (a western substitute could be a small glass of red wine, if the elder has no liver problem). He added that physical massage with sesame oil can be very beneficial for elders before they go to sleep at night—especially at particular points on their head, spine, shoulders, palms and soles of the feet. He also said that elders often lack needed physical and mental movement, including walking and even talking.
See Dr. Dorjee’s book: Heal your spirit, heal yourself : the spiritual medicine of Tibet. Pema Dorjee, Janet Jones, Terence Moore. Watkins, London; 2005; 320pp. A unique collaboration between a Tibetan doctor and two Westerners, introducing Tibetan medicine to a Western audience. With a foreword by His Holiness the Dalai Lama. https://www.worldcat.org/title/heal-your-spirit-heal-yourself-the-spiritual-medicine-of-tibet/oclc/828436600
To lessen the emotional component of pain, attendees suggested the Buddhist meditation practice of tonglen (giving and taking). In this compassion practice, one visualizes taking in the suffering [and pain] of oneself and others on the in-breath, and on the out-breath giving recognition, compassion, and succor to all sentient beings. See https://en.wikipedia.org/wiki/Tonglen. A participant stated that fear or anxiety about the pain or loss of function increases the intensity of the pain. Conversely, reducing such harmful emotions can help to lessen the pain.
A participant added that cognitive behavioral therapy can also reduce the pain by altering one’s perception of the pain—especially chronic back pain. See:
o Non-Drug Pain Management. U.S. National Library of Medicine – MedlinePlus https://medlineplus.gov/nondrugpainmanagement.html
o Cognitive behavioral therapy for back pain. U.S. National Library of Medicine – MedlinePlus. https://medlineplus.gov/ency/patientinstructions/000415.htm
It was also noted that Charles Raison, MD, A University of Wisconsin psychiatrist and professor, who has collaborated on meditation research with DLM Director Geshe Lobsang-la, has spoken about the connections between chronic depression and chronic pain. See the Prevention Web article excerpt below:
15 ways to take control of your depression and chronic pain. Stacey Colino; Prevention;– Mar 25, 2017
…This tangled relationship most often occurs when the patient’s underlying health condition is fibromyalgia, back pain, arthritis, neuropathy, or migraines (the most common causes of persistent pain), but it can happen with other painful illnesses, too, such as Lyme disease. Depression often accompanies these conditions because chronic pain and depression share common physiological channels.
“They operate on similar pathways in the brain, where physical and emotional pain signals get tangled up, causing the brain to misinterpret them,” explains Charles Raison, a psychiatrist and professor in the School of Human Ecology at the University of Wisconsin-Madison. In addition, he notes that if levels of the brain chemicals norepinephrine and serotonin, which modulate pain and regulate moods, are low due to an underlying health condition, a person’s ability to manage pain and moods can decline.
We discussed the importance of having a current Advance Directive that is reviewed and updated as necessary. This document is important for assuring that one’s end-of-life preferences (e.g., feeding tube, colostomy, respirator, the handling & disposition of one’s remains) are communicated to one’s loved ones and designated health care agent as well as the medical professionals likely to participate in one’s end-of-life care. As we age and as our health status or other health-related circumstances change, our end-of-life preferences might also change and should be reflected in a current Advance Directive.
See the National Hospice and Palliative Care Organization website for additional information on Advance Directives: https://www.nhpco.org/wp-content/uploads/2019/04/Understanding_Advance_Directives-1.pdf
…and to download a current copy of your state’s Advance Directive.
We were reminded that these directives would only apply if we were unconscious or otherwise unable to communicate our wishes. The importance of reviewing your designated healthcare agent was also noted, as people move and relationships sometimes change. Participants also cautioned about selecting a family member, if that person might not share your end-of-life wishes or if their decisions are likely to create family strife after you have died.
As to why we should maintain current Advance Directives, participants noted a sudden death of someone they knew and a sudden near-fatal emergency visit by one of our participants.
One participant suggested that we also make some type of advance directive for driving. For those who suspect that they might be affected by dementia in the future, this could be a useful document for care partners when they see a need for their loved one to get a memory test, driving test or have the affected person stop driving.
Another member reported that one of the local Drepung Loseling Monastery’s monk scholars (Tenzin Namdul) would be making a presentation at Emory University related to his dissertation on ideal end-of-life pathways. We hope to learn more about his work and invite him to present to our group. http://anthropology.emory.edu/home/news-and-events/events/Diss.-Presentation-Flyer_Tenzin Facilitating an Ideal Death: Tibetan Medical and Buddhist Approaches to Death and Dying in a Tibetan Refugee Community in South India – Dissertation Presentation by Tenzin Namdul
Examining the Tibetan Buddhist ontology of death and dying, this dissertation investigates the question: what is an “ideal death” in Tibetan Buddhist culture, and what are cultural practices developed to achieve this ideal. Through this aim, this study inquires into the foundational paradigm of reincarnation as a structuring lens for end-of-life care and the intersection of Tibetan medical and Buddhist practice in facilitating an ideal death as a collaborative event.
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