In No Pity: People with Disabilities Forging a
New Civil Rights Movement (1993), Joseph P. Shapiro noted that
deinstitutionalization and the community living movement in the 1960s was
driven by the rise of the concept of normalization. This sociological (as opposed to medical)
approach to disability has application to all who wish to age in place by normalizing aging and dying: ask the elderly what
matters in the end. Nothing about us
without us!
“The normalization principle
means making available to all people
with disabilities patterns of life and conditions of everyday
living which are as close as possible to the regular circumstances and ways of
life or society.”
– Bengt Nirje on Normalization, which laid the groundwork for social inclusion and
self-determination for people with disabilities
“Normalization demands …an entire spectrum of community
living arrangements to serve all ages and age appropriate behavior levels, to
address progress, integration and independence appropriate to a person's age
and competencies.” – William G. Bronston, MD, on Concepts and Theory of Normalization
Normalization
means giving people with disabilities (including older adults) the same
opportunities in life that others have.
The person is not the one being forced to be normal, but
the environment is changed to give this person a chance to experience what is considered "normal."
Senior & Disability Action staff presented Disability & Ableism Training, including skit on how to communicate and interact effectively with people with disabilities.
Nourishing the whole person
Normally
eating can be a pleasurable activity, but can be challenging to those with
dental problems (missing teeth, adjusting to dentures) or medical conditions (dry
mouth, fatigue). In my work with
seniors, I routinely assess for nutritional risk asking, “Do you have tooth or mouth problems that make it hard for you to eat
or chew?” When a client responds in the affirmative, my follow-up question is,
“Would you like to change to a mechanical
soft diet?” Initially clients resist
saying that they “don’t want any pureed baby food.” Then I explain a mechanical soft diet
includes a spectrum of different textures and consistencies (soft, liquid,
blended, chopped, ground or minced) so it’s easier to chew and swallow. The following are sample foods prepared by
Meals On Wheels of San Francisco—so you see, these meals are age-appropriate
for senior clients!
Mechanical
soft pork loin in sesame with peas & curried lentils: looks similar to kitfo (Ethiopian minced meat) or moo-shu (Chinese ground pork) moistened
with sauce/gravy!
Salisbury
steak in mushroom sauce with broccoli, cauliflower & carrots
Dementia = Being present (tense)
Instead
of the scientific view of dementia with its emphasis on cure, Nader talked
about adopting an attitudinal shift towards a humanistic view of forgetfulness with an emphasis on care.
He noted that forgetfulness has a purpose to “let the mind go” of
memories causing pain or embarrassment, to slowly work one’s way through
death. “If we view elders as our teachers,
then forgetfulness as our teachers” that push us to learn wisdom and qualities
like being present.
Contemporary
Jewish Museum’s Access Program hosted The
Power of Art and Music: In the Lives of Those Living with Alzheimer’s seminar
exploring research on creativity and the brain, and how arts and
cultural experiences can enrich the lives of people living with Alzheimer’s or
dementia. The panelists included:
- Zachary Miller,
MD Assistant Professor of Neurology, UCSF Memory and
- Lola Fraknoi, founder
of Ruth’s Table and Art Time Programs for a Creative Life - Prompting to Make Art kit to
release creativity in persons with moderate dementia
- Andrea Korsunsky,
Coordinator for Center for Dementia Care, Seniors at Home, a program of Jewish Family and Children’s Services
(JFCS) - Communication Strategies: use
nonverbal body language to listen & be present, avoid word “remember”,
ask for help & support in community
- Rachel Main, Family Support Coordinator, Ray Dolby Brain Health Center, Alzheimer’s Association – Why is Music and Art Important in Daily Life for People with Dementia? Engage both sides of brain to reduce 4 A’s (agitation, anxiety, apathy, aggression) & replace antipsychotics, focus on strengths that remain.
Lola's examples of Prompting
to Make Art: 1st slide (top left) shows beginning sketch of open image as
visual cue for persons with Alzheimer’s to “think outside the box” and continue
the drawing.
Care giving/taking
At Ed Roberts Campus, UC Davis
Alzheimer’s Disease
Center
·
Rita Hargrave, MD, geriatric
psychiatrist at Veterans Administration
·
Yaisa Andrews-Zilling, PhD, who also
presented on Recent Developments in
Alzheimer’s Research: prevent and reduce risk by paying attention to heart
health, exercise (African-Americans at highest risk of ethnic groups due to
higher rates of cardiovascular disease, obesity & diabetes), brain
stimulation/education/novelty, nutrition, social and emotional well-being
·
LoWanda Moore, MSW, who also presented
on Taking Care of the Caregiver,
demonstrated relaxation techniques like deep breathing and guided imagery
Elena Portacolone,
PhD, of UCSF Institute for Health & Aging, is recruiting older adults age 65+ who are living alone with either Alzheimer’s disease or mild cognitive impairment for a research project,
supported by National Institute on Aging and Alzheimer’s Association (which
offers Dementia Capable Services & Supports,
a free program to assist people living alone with
dementia in San Mateo).
Alzheimer’s Association Community
Outreach Specialist Debbie Williams quit her job (supported by husband Lenny of Tower of Power) to
care for her mother who was diagnosed with Alzheimer’s. Though anyone with a brain is at risk, she
emphasized that African-Americans are typically diagnosed in later stages of
disease when they are more cognitively and physically impaired, needing more
medical care yet less opportunity for input in long-term care and financial
plans.
Treating Sickness & Death = Palliative & Hospice Care
Nearly half of
all people with Alzheimer’s and other dementias are in hospice care at the time
of their death, yet fewer than half of surveyed nursing homes have some sort of
palliative care program. Palliative
Care and Hospice Education and Training Act (PCHETA) would increase
palliative care and hospice training for health care professionals, launch a
national campaign to inform patients and families about the benefits of
palliative care, and enhance research on improving the delivery of palliative
care.
JFCS Seniors At Home
launched a new Palliative Care Lecture Series, "Let's Keep
Talking About..." Psychotherapist
Sylvia Boorstein and JFCS Director of Palliative Care Program Redwing Keyssar began the
community conversation with “Let's Keep Talking About Old Age, Sickness, and
Death - Liberating the Hard Questions from the Shadows.”
- Old Age: Sylvia embraces old age by disclosing
that she is 80 years old
- Sickness & Death: Sylvia said if one gets cancer, one who
thinks why me? suffers a lot;
but one who thinks why not me?
does not suffer so much. Accept
that death happens so don’t struggle with what can’t change. Redwing expressed her disappointment
reading Dr. Paul Kalanithi’s memoir, When Breath Becomes Air (2016), because the doctor dying of cancer
only mentioned palliative care at the end, no mention of spiritual care but
only medical treatment.
Redwing shared palliative care physician Ira Byock’s The Four Things That Matter Most: A Book About Living (2004) --
“Please forgive me,” “I forgive you,” “Thank
you,” and “I love you” – the
role of forgiveness as an opportunity to let go.
At Books Inc., Pamela Skjolsvik read excerpts from her memoir Death Becomes Us (2015) about overcoming social anxiety disorder and fear of mortality. Her use of humor to normalize death is
similar to mortician Caitlin Doughty, author of Smoke Gets in Your Eyes & Other Lessons from the Crematory
(2014) and founder of Order of the Good Death.
Aging policies
At Home
With Growing Older hosted Brooke Hollister, Assistant Professor of Sociology in
the Institute for Health & Aging at the University
of California , San Francisco
Congress finally passed legislation to
reauthorize Older Americans Act
(OAA), which President Obama signed into law this month—nearly five years after
it expired -- a symbolic act as funding remains flat for OAA programs like Meals On Wheels. For example, government funding provides only 40% of the operating budget for Meals On Wheels of San Francisco (MOWSF), which fundraises the remainder; this month's MOWSF Star Chefs & Vintners Gala raised $3.3 million or 25% of its annual budget. In contrast, Medicare expenditures doubled between 2005 and 2015, suggesting that unmet social needs are "medicalized" and delivered in higher-cost settings.
Booksmith
hosted panel discussion on Marijuana in the Haight: From the 1967 Grateful Dead Bust to Legalization in 2016 with these movers and shakers:
- Andy Clark, Assistant
District Attorney
- Dennis McNally,
The Grateful Dead’s publicist and historian
- Michael Stepanian,
who formed the Haight-Ashbury Legal Organization
(HALO) to defend the Grateful Dead who were busted for marijuana in 1967
- Marsha Rosenbaum, who made
available free copies of Safety
First release by Drug Policy
- Steven Heilig,
San Francisco Medical Society and member of Lt.
Governor Gavin Newsom’s Blue Ribbon Commission on Marijuana
- David Talbot,
founder of Salon and author of Season
of the Witch, a cultural history of
- David Smith founded Haight Ashbury Free Clinic
(HAFC) to care for young drug users and Rock Medicine to provide medical
services at Bill Graham concerts.
Is medical marijuana as effective as opiates in treating pain? Timely topic, especially following 57-year-old artist Prince’s death of possible opioid overdose. In contrast to the epidemic of deaths from opioid overdose, the death rate from marijuana overdose remains zero. And legalization of marijuana could generate tax revenue to fund senior services!
The New York Times' article, “U.S. Suicide Rate Surges to a 30-Year High,” (April 22, 2016) reported
that from 1999 to 2014, suicide rates in the United States
- Men
and women from 45 to 64 had a sharp increase
- Though
suicide rates for older adults fell over the period of the study, men over
75 still have the highest suicide rate of any age group — 38.8 per 100,000 in 2014,
compared with just 4 per 100,000 for their female counterparts.
Does Death With Dignity normalize suicide?
Stefano
Bini, MD, UCSF Professor of Clinical Orthopaedics, highlights “Age is not a
problem” during his presentation on Total Hip and Knee Replacement as a
Treatment for Arthritis and New Developments.
DAAS Benefits & Resources
Hub Grand Opening
San Francisco Department of Aging & Adult Services (DAAS) opened its Benefits and Resources Hub as a one-stop shop for the public to access in-person intake services (Adult Protective Services, In-Home Support Services & Home Care, Nutrition, Case Management, Information & Referral to Community Services), benefits (CalFresh, Medi-Cal), and Veterans Services.
San Francisco Department of Aging & Adult Services (DAAS) opened its Benefits and Resources Hub as a one-stop shop for the public to access in-person intake services (Adult Protective Services, In-Home Support Services & Home Care, Nutrition, Case Management, Information & Referral to Community Services), benefits (CalFresh, Medi-Cal), and Veterans Services.
Entrance to 2 Gough Street
Signs in English, Chinese, Spanish
Check-in with Greeter (gatekeeper) who asks for name & purpose of visit
Service counter
Waiting area
What a great blog, Carmen! And thank you for the spotlight. You might want to check out my Facebook Page: SF Bay Area Creative Aging Collective. It's a collective of individuals passionate about the field of aging and the creative arts. Keep up the great work!
ReplyDeleteA Mother’s Lesson: When Memory Fails, Delight in the Moment
ReplyDeleteBy MARY CLAUDE FOSTER
MAY 6, 2016 6:06 AM
…After Dad died, my mother continued to live alone in the big white house on the common. It was here in 1988 that she’d written a keenly observed Sunday commentary for this newspaper about her own mother’s battle with aging — and the dementia that “erased her life, line by line.”
She wanted me to promise that if her own light dimmed – or as she put it, “when I lose my mind too” – I wouldn’t upend my own life to care for her. But we never came up with a real plan…
home care team we’d improvised announced my mother’s decline was too much for them, my brothers and I barely convinced her to “visit” sunny California where my middle brother lived.
That visit became a new “post” in a fancy retirement community where, for $7,500 a month, she had her own studio and bathroom. She enjoyed music events and a stately dining room with a menu. There was even a church on the corner.
But like so many living with Alzheimer’s, Mom’s biorhythms were upside down. She’d often sleep during the day and be up all night doing what is known as “exit-seeking.”
Nights are the Achilles heel of most eldercare facilities staffed by the fewest caregivers — and the most inexperienced. Across the country, in many well-meaning Alzheimer’s units, memory care residents are treated with confinement.
So Mom “graduated” to the locked Memory Care unit for her “safety.” …
Alzheimer’s is not a mere matter of Swiss cheese memory and odd behaviors. It is a serious medical condition. It is terminal. It should be known for what it is: Brain Failure.
…we moved her again, this time to Seattle, close to my eldest brother and me, thereby violating the cardinal rule of Alzheimer’s care: thou shalt not move the patient. Change registers a full 10 on the Alzheimer’s Richter scale. The more Mom’s brain failed, the more I twirled to try to make things better.
Within a matter of weeks in the new place, she had fallen and broken her hip. Surgery followed, then three months in a rehab facility, and finally a move to a small adult family home with just six residents. She was exhausted and utterly disoriented. I was a wreck.
…Where once I’d thought I’d lose my mind if she asked me the same question one more time, now I prayed to hear any full sentence just one more time. Ever the peripatetic family caregiver, I rarely stopped to inhabit my mother’s world: the one with no past, no future, just the present.
On our last Mother’s Day together, I took her to the big morning Mass at St. James Cathedral. As I attempted a Houdini maneuver getting her out of the car, up the curb and down the sidewalk to the church door, she somehow slithered from my grasp.
My mother sank to the ground in what seemed like slow motion. She never made a sound. She just lay there in the green grass in her rose-colored tweed suit, brilliant white hair glinting in the spring sun, blue eyes open wide, staring straight up into an unusually cloudless Seattle sky.
With church bells pealing through the cool morning air, my beautiful, brilliant mother stretched out her arms and made angel wings in the grass.
And all the doctors and all the medications and all the years of worry that couldn’t bring my mother back together again, also couldn’t defeat the magic of that moment.
I lay down next to her, threaded my fingers through hers, and for a brief wondrous moment, we held the present.
Mary Claude Foster is a journalist living in Seattle.
http://well.blogs.nytimes.com/2016/05/06/when-memory-fails-theres-always-the-present/
#DisruptDementia: Is Alzheimer’s a Disease?
ReplyDeleteBy Kyrié Carpenter, ChangingAging Contributor
…In the field of psychology a diagnosis of dementia (which is now called neurocognitive disorder) including Alzheimer’s is based on symptoms,...Most diseases however are diagnosed based on causation not just symptoms. Margaret Lock,…book The Alzheimer’s Conundrum, explains why…Alzheimer’s is a phenomenon more than a disease:
... We do not know the exact culprit…therefore, classing it as a disease to be eradicated is to put the proverbial cart before the horse. How can we hope to cure something when its causation is unknown?
Why do we think it is a disease?
It all started in 1906 when Alois Alzheimer discovered senile plaque and cerebral cortex thinning in a woman only 55 years of age. This woman also exhibited the psychological symptoms of what we now call Alzheimer’s. Upon autopsy neurofibrillary tangles were found in her brain…There is a very strong correlation between the tangles he discovered and the symptoms of Alzheimer’s disease…The problem is the tangles associated with Alzheimer’s can only be detected in a post-mortem autopsy. Without a diagnosis of probable Alzheimer’s it is highly unlikely the brain will be autopsied for the tangles associated with Alzheimer’s. This has led to a sore lack of data about Alzheimer’s, aging and our brains.
Now this is beginning to change,…in a longitudinal study on aging (The Nun Study),…Sarah Robinson in her doctoral dissertation “Alzheimer’s the Difficult Transition” …summarized the initial findings:
The brain autopsies revealed that some nuns who had exhibited high levels of memory loss and cognitive impairment while living only had minimal plaques, tangles, or brain deterioration, while other nuns who showed absolutely no signs of memory loss or cognitive impairment while living had brains full of plaques, tangles, and deterioration. While most brains affected by Alzheimer’s do have plaques and tangles, [David] Snowdon’s [director of the nun study] research reminds us of the complexity of the condition, and of the fact that biology does not always predict symptoms and vice versa.
These findings suggest that there is not a clear cause-and-effect relationship between the tangles and Alzheimer’s. This data, however, is new and small in comparison with the public understanding of Alzheimer’s as a disease resulting from tangles.
Does it really make a difference if we see Alzheimer’s as a disease or a phenomenon?
If, as is generally accepted, Alzheimer’s is a disease to be eradicated, how does this affect people currently experiencing it? I have witnessed elders in the later stages of Alzheimer’s written off as no longer a part of our society. Their basic physical needs are cared for, but their deeper needs as human beings, such as love, purpose and community, are largely ignored. In the worst-case scenario, they are regarded as already gone — just bodily shells of a person that once was. I believe this comes from seeing Alzheimer’s as an incurable disease. Efforts are focused on eradicating the disease but what of those that are living it right now? What of their quality of life? What of their purpose? Viewing Alzheimer’s as a phenomenon offers a different perspective.
…Alzheimer’s the phenomenon is difficult to understand and, accordingly, something to be observed and studied. When something is observed and studied this offers a purpose, something to be learned…a reciprocally beneficial relationship….Suddenly, Alzheimer’s and the person experiencing it are no longer pathological, rather they are interesting and valuable… the shift in intention can offer dramatic differences in the experience of life for those living with Alzheimer’s and their loved ones…
http://changingaging.org/blog/disruptdementia-is-alzheimers-a-disease/
Beyond Slurpees: Many Japanese Mini-Marts Now Cater To Elders
ReplyDeleteAugust 23, 2016
In Japanese cities, space is at a premium. So convenience stores that cram everything from Kleenex to rice balls into a few square yards are everywhere. You can't walk five minutes in most cities without running into one or two or even half a dozen.
But they're not just a place for Slurpees and snacks. Nearly 27 percent of Japan's population is now 65 or older, and convenience stores are changing to serve this growing market.
Case in point is a Lawson convenience store in the city of Kawaguchi, north of Tokyo. It sells products that an American consumer would never find tucked between the aspirin and the candy bars. For example, there's a whole rack of ready-to-heat meals in colorful pouches. They're rated at levels from 1 to 5, based on how hard it is to chew what's inside.
Or, as the store's manager, Masahiko Terada, puts it, "the higher the level, the less need for you to chew. In the end it's porridge."
Of course, not all older people have trouble chewing, and many still cook for themselves. So Terada points out a fresh food section unlike anything you'd see in most U.S. mini-marts. There are packages of raw vegetables and meat, much of it already cut up and packaged in single-serving amounts for the increasing number of older people living alone these days in Japan.
There are also dozens of products intended not so much for older consumers as for their caregivers — items to deal with incontinence and its consequences, for example, like especially strong, deodorizing laundry detergent or devices that are useful for giving bed baths.
"So, basically, we have this lineup of products so that the elderly don't need to go to the big supermarkets," says Terada. "They can use this store as a substitute."
Because older adults make up nearly 27 percent of Japan's population, they are a market that can't be ignored, says Ming Li, who works in communications for Lawson.
"We try to accommodate the changes in society," he says.
The convenience store industry in Japan is dominated by three major chains. Lawson is second largest. The leader is 7-Eleven, which is now owned by a Japanese company. Li says the industry is highly competitive.
"We're like, OK, if one chain is doing something, then we'll do it, too," says Li.
In fact, other chains are also experimenting with services that might appeal to older consumers, such as home delivery of meals or being located alongside pharmacies.
This Lawson store in Kawaguchi is one of six in a special line called Care Lawson. The company plans to expand to 30 by early next year. And these Care Lawson stores have another special feature: staff like Mika Kojima.
She's a nursing care manager and she's stationed at this Lawson store. In fact the franchise owner of this store is actually a nursing services company. Anyone who comes in can ask for Kojima's help. For example, she'll go to an older client's home to make sure it's set up so they can live there safely. And she'll connect families with adult day care services.
Whatever the request, she says, "I make sure that I'm always prepared to listen with a smile on my face."
Kojima's tiny office is next to a cafe area meant to give older people a place to hang out and drink tea or watch television. This is where she sees most of her clients.
"People in the neighborhood come in for tea and they start talking to me," Kojima says. "And they come in four or five times a week."
So, most of the time, Kojima deals in tea and sympathy — one of the oldest therapies in the world. And it's coming soon to a growing number of convenience stores in Japan.
http://www.npr.org/sections/health-shots/2016/08/23/490527970/beyond-slurpees-many-japanese-mini-marts-now-cater-to-elders
A Hundred Miles in Their Shoes
ReplyDeleteLife presents us with a choice: accept the "tragedy narrative" or tell a new story.
by Dr. Bill Thomas, ChangingAging.org
The controversy surrounding the startlingly negative PBS documentary “Alzheimer’s: Every Minute Counts” and its relentless focus on what many have called the “tragedy narrative” has affected me deeply– but not for the reasons some people may suppose. It is true that I am a geriatrician and it is true that I have cared for and about thousands of people living with dementia and their families. But, I am also a father of five children, two of whom were born with a neurological condition known as Ohtahara Syndrome, also known as “idiopathic infantile encephalopathy.”
…no cure for Ohtahara Syndrome, there is no effective treatment, and our little girl would require round the clock care for the rest of her life.
…Life had presented us with a choice: we could accept the “tragedy narrative” that fit so seamlessly with our overpowering sense of loss or we could tell a new story. Because of our experience being with and learning from elders, and our openness to learning from people living with dementia, we knew there was a new story waiting to be told. We could, as a family, challenge and transcend the tragedy narrative and create a new narrative. We chose to tell a story of love and growth and possibility. We chose to honor our impossibly fragile daughters as teachers, as sages who could lead us toward a deeper and more meaningful approach to life and love.
As we crafted this new narrative we found that our grief could be transformed into something new. All five of our children became precious gifts. All five of our children enriched our lives. All five of our children showed us new ways to love. Haleigh and Hannah just taught us in their own way, unable to use words, they taught us by example. They showed us the true meaning of strength and persistence.
The pediatric neurologists told us that neither Haleigh nor Hannah would survive childhood. Hannah remained with us and taught us everyday for 18 years before she departed from this world in 2015. Haleigh is with me now as I write this; she is 22 years old. She loves life– and so do I.
Now, I hope you can understand how I feel when I see experts in the field of dementia use the media to amplify and validate the message that living with dementia is solely and completely a tragedy. It hurts me when the voices of people living with dementia are silenced.
No one can tell me that “I don’t understand.” I do understand the corrupting power of the tragedy narrative. No one can tell me that it is impossible to craft a story of love and virtue from Ohtahara Syndrome or Alzheimer’s and dementia. I know the truth. The truth is that life is a complicated, wonderful, grievous, painful, joyous– mess, and “story making” is the only power that is contained entirely within the boundaries of our flickering mortality. We choose. We decide. We create and we destroy meaning.
I speak for Haleigh and Hannah, I speak for the millions living with dementia, when I say that there is a better way. We may never have the ability to cure Ohtahara’s Syndrome, we may never cure Alzheimer’s, but we can, we must and will tell a new story about the people we love and the journey we are sharing with them.
We have a choice. We can choose tragedy or we can choose joy.
We chose joy.
Published to: ChangingAging on January 25, 2017
https://changingaging.org/blog/a-hundred-miles-in-their-shoes/
Every Minute Counts: A Call To Action
ReplyDeleteYes, there is suffering associated with Alzheimer’s AND much of this suffering is socially imposed by the tragedy-only narrative
by ChangingAging
What causes the stigma and fear? It’s the stereotype of dementia: someone who cannot understand, remembers nothing, and is unaware of what is happening around them. This stereotype tugs at the heartstrings and loosens the purse strings, so is used in seeking funds for research, support and services. It’s a Catch 22, because Alzheimer’s associations promote our image as non-persons, and make the stigma worse.
— Christine Bryden, Austrailian Advocate Living with Dementia
On January 25 PBS will air Alzheimer’s: Every Minute Counts, a documentary framed as “an urgent wake-up call about the national public health threat posed by Alzheimer’s disease.” The film starts with phoned in quotes about the tragedy of Alzheimer’s from the perspective of care partners overlaid with dramatic images and music and then goes to experts with catastrophizing predictions such as, “It is going to sink the health care economy and in turn sink the national economy” and “It will take us down, this disease will take us down.”
The film details only one side of the story when it comes to Alzheimer’s. The result highlights just how hard care partnering can be without giving voice to people living with dementia or how society causes much of this suffering. The film uses scare tactics in the name of safety without respecting the dignity of taking risks which those of us without a diagnosis take for granted every day. The film speaks about mounting medical costs with no mention of innovation or social capital. It warns us of the hardships of people living with dementia in isolation without highlighting communities who are banding together and helping each other live well regardless of cognitive ability. The film pathologizes “wandering” without asking how people are getting creative to protect the freedom to go where one chooses. The film interviews only one person living with dementia and the interview takes place immediately following her being given the diagnosis. The single ray of hope and possibility for living well comes at the end of the film when a family care partner is supported by hospice and remarks, “I have always been against any kind of help because I thought I would have to put her in a home or something, and I was totally wrong.” The film concludes with a plug for medical research funding as the only possible thing one can do about this so-called crisis.
“How depressing! Where is the hope and encouragement for those who are being diagnosed now?” Larry Klika, a retired pharmacist in Missoula, Mont., diagnosed with Alzheimer’s disease in 2015, said after watching an advanced screening of the film provided by ChangingAging.org with his wife Linda.
There’s nothing new about this film’s focus on the tragedy-only narrative of dementia, designed to catch media attention, social and otherwise, by stoking and feeding on our deepest fears about aging. We are calling on the ChangingAging community to take a stand and show the world that there is more to the story. Let’s enact one of the most important words in our language: ‘and.’
Yes, medical research is important AND so are ways to make our communities and ourselves more dementia inclusive. Yes, there is suffering associated with Alzheimer’s AND much of this suffering is socially imposed by the tragedy-only narrative and can be alleviated through perspective shifts. If you watch this film on January 25, please do so with the word ‘and’ at the top of your mind. Where does ‘and’ need to be added? Where is only part of the story being told? Where is suffering being added rather than alleviated?
PBS and underwriters for this documentary, such as the Alzheimer’s Association, have mounted major publicity and social media initiatives around this program. Together, we can be sure that the voices of people living with dementia and their allies are also heard!
https://changingaging.org/dementia/every-person-counts/
Transforming Living While Dying with Dementia
ReplyDeleteA true story of letting go of the old and embracing the new
Posted on July 31, 2017 by Tani Bahti
Dying has a way of transforming living, sometimes in powerful ways. I usually consider dying with dementia a double whammy – first the existential death of the person you once knew, and finally the physical death. Letting go and accepting a new normal is not easy. Embracing those changes is even harder.
I expected my mother to die three years ago.
After her husband’s death, we moved her to an adult care home in our city. As a result, she lost her home, her friends, her routines and her identity as a rancher’s wife. Due to her progressive decline from Alzheimer’s disease, she was admitted into a hospice home care program.
My mother was always the first to declare, “If I ever get Alzheimer’s, just take me out and shoot me!” The fear of dementia — of losing control and losing herself — was terrifying for someone who kept a highly structured routine. The difficult changes she was now experiencing were shattering her coveted illusion of control. I fully expected my mother to continue to decline and let go of the increasingly dependent life she didn’t want.
Then, unexpectedly, she improved.
She got stronger, more engaged in her new life, and hospice was discontinued.
I watched her let go and awaken to a new life: A life without the rigid rules she had previously self-imposed; a life that now allowed her to enjoy dessert without worrying about her weight (resulting in the reversal of her 30-pound weight loss). As she began to accept her dementia, she learned to be silly rather than worrying about how she would be perceived by others.
No longer obsessed with impressing others by wearing the right clothes and best jewelry, she now revels in the joy of putting on cheap plastic daisy earrings because, in her heart, she has always been a wildflower girl.
No longer worrying about cleaning her house or preparing meals for her husband, she now sits for hours, watching birds just outside her window or getting lost in her favorite western oldies on TV.
Her tendency to judge and worry has been replaced with accepting and even embracing what is, appreciating even the smallest gestures and making giggling sounds whenever chocolate is in sight. When the caregivers would tell me how sweet she is, I would quickly retort, “This is not the mother I grew up with!”
Do I still need to hold onto that past when she has transformed her present? Can I also embrace a new life and a “new” mother? By allowing my own barriers to fall away, I created space for increasing compassion, forgiveness, and appreciation that I had not expected to feel. By transforming and finding her new life, she has also transformed my life and our relationship.
Dementia forever changed and transformed my mother’s experience of life. While this disease results in many losses, there may still be gains to be found as no one is untouched through this shared journey.
In letting go of her old ways, no longer encumbered by external forces or the need to please, perhaps she finally found her authentic self.
And in letting go of my old perceptions, I finally found her.
http://blog.sevenponds.com/dying-well/transforming-living-and-dying-with-dementia
ReplyDeleteFor those people whose relative are suffering from Alzheimer’s Disease and maybe reading this, I find it hard that people are still ignorant of herbal medicine when it comes to treating Alzheimer’s Disease.
I have been through many phases over the last couple of years since my father's diagnosis, he was 53 years old and had Early Onset Alzheimer’s Disease and his diagnosis changed my life in many ways, I spend most of the time in denial and I keep thinking the tests were wrong. But deep down I knew they were correct. Though sharing his story is very difficult. He was always very successful in being able to accomplish anything he set his mind on doing. Alzheimer’s is a bitch of a disease. It began by robbing his recent memory, but it didn't stop there. It continues to steal, taking the most recent memories until it has pilfered all but the oldest memories, he experienced a decline in his ability to think, remember and make decisions. I feel a need to express my thoughts and feelings about how it affected his day to day living and how its deteriorated since despite the help of some wonderful medics and medicine.
I remind myself how lucky to come across Charanjit rychtova's herbal medicine which is able to control this disease without any side effect, I felt a moment of relief hoping that he is free from this ailment, and nothing compares to the healing power of nature. Now I believe almost every health problem can be addressed in one natural way or another. The only thing I wanted was for him to feel better. I’m proud to say my Dad is Alzheimer’s free. You can also contact him for advice and more info. charantova@gmail.com