Showing posts with label Lifespan. Show all posts
Showing posts with label Lifespan. Show all posts

In a Different Key

 The webinar is up at https://www.youtube.com/watch?v=039eGaw2Q1w











Curious about the first person who was diagnosed with Autism!!
And what Autism can look like at 90?
And all manner of issues in between.

discussing critical issues in the film "In a different Key" hosted by the Frist Center for Autism & Innovation. 

A very relevant question in the face of a society that is underprepared to meet the needs of the ever increasing number of autistic adults of today who will go onto becoming the aging autistic seniors of tomorrow.

This is one of my responses in the webinar.

About the movie I want to start with a comment. What I absolutely love about this movie was the utter genuineness of autism.  And highlighting how others treat autistics is both DARKNESS and HOPE but there is a chance to BELONG. 


To give you a perspective on what autism can look like, A little more about myself, On the disability front, I do have significant challenges that present multiple obstacles to my everyday living. Having limited communication skills is just the tip of the iceberg of these issues and I do need constant care for most aspects of daily living. On the other hand, I like to think I also have strengths which have carried me here all the way to graduate school where I hope to do meaningful research that contributes to knowledge and solutions in the autism space. 


I happen to straddle aspects of two often seeming disparate worlds. So I will go to the HEART OF THE DEBATE.


It troubles me that there is such a divide between both worlds, when I think ultimately both worlds often have the same long term objective. I often feel we are wasting time and resources arguing with each other instead of getting real work done. 


I don't think it's an either-or situation. That it has to be this model or it has to be that model, with no room for negotiation in between. That it is a pure Medical Model which says the solution lies in medicine alone or a pure Social Model which says society has to accept and accommodate us and nothing more needs to be done. 


I agree that all of us need and yearn for that ULTIMATE GOAL OF BELONGING, like what we saw Donald Triplett was living and experiencing with his community in the movie.  That is what the Social Model is. That is indeed the ultimate dream. 


But do you think that same community would be as accepting and inclusive of an autistic adult who had constant meltdowns, who was displaying self-injurious behaviors, who had significant social anxiety and a range of health issues to boot. Guess who is left holding the baby, so to speak. It comes down again and again to the family to cope and manage the best they can in terms of finances, resources and time. No wonder those families ask, what after us. 


Believe me, life is far from a happy optimistic picture for not just the families but for these autistics too. Even providers don’t want to work with us, let alone society. I have peers stuck at home because no adult day program will take them due to behaviors. Group housing does not want the adults with behaviors. So where do they go? I have peers who can have a dozen seizures a day. I have peers who have to be on the toilet all night due to gut problems. Sleep for just 2 hours a day means both the autistic and family are sleep-deprived. And this stuff does not magic away in adulthood. Providers just get harder to find as you age, as everyone wants an easy case. I’ve had providers quit on me after just 2 days. The happy life of Donald Triplett will slip further and further away. 


I want and yearn for belonging but I’m also beginning to realize that perhaps there are some missing steps, almost like accommodations to how to help adults and kids with more significant challenges. Maybe those solutions lie in understanding physiology and in underlying health and medical issues.


Unfortunately any movement towards those solutions is deemed as the evil medical model and therefore taboo, which is very frustrating. We are conflating health issues with cure. We are getting sidetracked honestly with this debate. I don’t think anyone deserves to be engaged in self injurious behaviors and be experiencing  extreme mood swings which make inclusion almost a non starter. No one deserves to wake up in intense gut pain like me in my younger days and have it be thought of as something that can only be addressed with behavior therapy. And when behavior therapy does not work, because you are looking at the wrong thing, you are pushed into an even worse special education classroom as then you are deemed in capable of improvement and inclusion. Any dream of belonging goes up in smoke.


If your body internally feels better, and you have less health issues it will reflect in outward happiness and a better quality of life. What’s wrong with finding solutions? What’s wrong with looking for solutions on multiple fronts. We can all agree our environment has gotten more toxic and it is causing more and more significant health issues world-wide. Maybe some of our solutions are somewhere in that arena. Just medicating us with psychotropics can’t be the only solution, which also have their own long term health effects. Proactively taking care of your health and well being is not pathologising. We have to research solutions, so that guys like me and others with more significant issues can also dream of moving about in society with ease, and have a chance at opportunities and belonging like Donald Triplett. 


At the same time I am so incredibly amazed by the strengths and possibilities I see in the autistics who are able to get out there in society and be able to avail of opportunities. There is so much unlocked TALENT and potential which can bring about significant changes in the world. It is very critical for autism to also be looked at from a STRENGTHS-BASED perspective for that acceptance, inclusion and belonging piece. 


In fact, I would like to see this TALENT HARNESSED IN FINDING SOLUTIONS for the ones with more significant issues, so they too have the opportunity of inclusion and belonging.  Solutions lie in many fronts, from medical research to policy to societal attitudes to caregiving issues to inclusion. We also help solve the unemployment problem this way by making everyone across the spectrum, especially those who have the desire to work, become part of the solution for all. So it can be a win win for all. 


I also want to point out to a Sins Invalid principle of Disability Justice which says when you address the needs of the most marginalized, you address the needs of all. In fact I would point out that I admire that Donald Triplett is a healthy active senior but I doubt if many of us will be as healthy. Current research seems to point to a lot of health issues we are going to have as aging seniors. If you get a chance read Alice Wong's piece on caregiving for her recent health crisis.  Isn’t it better to find solutions on both health issues and caregiving now when we are able to do something about it rather than when we are all tottering senior citizens. So I want every autistic and family member and ally to think about how they can be part of the solution.  


So it's almost like we have different degrees of needs and some of us have legs in many issues so we need solutions on many fronts. Why then are we having factions and fighting?


=================


The documentary "In a Different Key" is streaming on PBS https://www.pbs.org/show/different-key/)

Based on the Pulitzer Prize-nominated book of the same name by journalists Caren Zucker and John Donvan, IN A DIFFERENT KEY follows the mother of an autistic son as she finds and then befriends the first child ever diagnosed with autism – Donald Triplett, who still lives in the rural Mississippi town where he was born nearly 90 years ago.  

The mother – co-director Caren Zucker – undertakes a journey seeking answers to the unknowable: will the non-autistic majority embrace and protect her child when she is no longer here? 


Our Guy Donald


Autism Diagnosis in Minority Communities


Mickey visits a Cat

Autistic Voices





@harisri108 #Redefine_the_Table #autism #belonging

Building a Bridge to the Future

 I was keynote speaker at  Missouri State 2021 Transition Training Institute 

https://dese.mo.gov/special-education/effective-practices/postsecondary-transition

https://www.eventsquid.com/event.cfm?id=12567

List of all Speakers: https://www.eventsquid.com/event.cfm?id=12567










Advocacy Day for Access and Independence

Event by ABLE-South Carolina

Recording at https://youtu.be/O4sd30F_9bk I'm on at 2:16:51 

Event Site: https://unlockingbarriers-sc.org/?fbclid=IwAR19-TeohFuvq2rnxLdCVObxGe1l8l5doQ0WT4s-upGSbSuf1cC-C_hCmb4#:~:text=Save%20the%20date%20for%20April,responsible%20as%20the%20pandemic%20continues
















Empowering a Future

 I was the keynote speaker at the ABLE - South Carolina, a Center for Independent Living at their Annual conference. www.able-sc.org

Empowering a Future is a professional development opportunity for educators and service providers working with youth with disabilities who are transitioning to adulthood. This year’s conference will include all the exciting sessions you’re used to – but in a user-friendly online format! Want to learn how to motivate and empower your students? It’s time to leave the deficits-based approaches behind and focus on new strategies to build strong, successful self-advocates. Session content will highlight virtual service delivery, supported decision-making, pre-employment transition services, youth leadership, and much more. This event is made possible through a partnership with Able South Carolina, South Carolina Department of Education, and Transition Alliance of South Carolina (TASC).

Link to any potential recording will be posted if available. 




 

Keynote - Empowering a Future

I was keynote speaker at Able-SC's Transition Conference

Empowering a Future is a professional development opportunity for educators and service providers working with youth with disabilities who are transitioning to adulthood. This year's conference will include all the exciting sessions you're used to - but in a user-friendly online format! Want to learn how to motivate and empower your students? It's time to leave the deficits-based approaches behind and focus on new strategies to build strong, successful self-advocates. Session content will highlight virtual service delivery, supported decision-making, pre-employment transition services, youth leadership, and much more.

“Being branded low [functioning] sets you up for low educational expectations, low societal expectations and gatekeeping from the get go, it sets you up for lifelong failure. No one willingly labels themselves as low, it is others doing so.”

We are so excited for Hari Srinivasan to be our keynote speaker at Empowering a Future 2021! Teachers, service providers and counselors: learn directly from an autistic student and disability scholar about how to empower students with disabilities. Tickets: bit.ly/eaf2021

 

CHAS EDI International Conference on Neurodiversity December 2020

Neurodiversity : A Paradigm Shift in Higher Education and Employment. 3rd and 4th December 2020.

https://www.ucd.ie/chas/newsandevents/chasediinternationalconferenceonneurodiversitydecember2020/
https://www.youtube.com/watch?v=aA3s_MjqihM

Clarifications, not Mistakes


Clarifications, Not Mistakes. 

“Let us start thinking of mistakes as clarifications.

Life is never a straight line even for NTs. When you are autistic & that too nonspeaking, making mistakes will be inevitable - there are very few role models or navigation maps to follow.

So not only are we on Robert Frost’s less travelled road, but we often have to create this road from scratch. What all this means is that, we are going to not just make mistakes, but a ton of mistakes too.

When you think of mistakes as clarifications, it's a chance hopefully, to backtrack a bit, adjust a bit, and get back in there” 

-Hari Srinivasan @ ASAN’s “Transitions to Adulthood” Panel, Nov 2020



Transitions to Adulthood Panel - ASAN 2020 Gala


I learned a lot from the others on the Panel and from the audience comments.
Thank you. 
The Autistic Self Advocacy Network
, fellow panelists 
Jordyn Zimmerman
 and audience.
https://www.youtube.com/watch?v=2klBB1Tow4A&fbclid=IwAR2XIoXysvRB-Y-uux8JWzfvJjzUVGodcc2aIxvvgrl8Waj6jibOtOdkEv8 




ACI Experiences




 

Delays in Diagnosis

Delays in Diagnosis


Girls, BIPOC, lower SES
  • Delays in Dx → Impacts access to early intervention services (up to age 5)
  • Girls: Traditionally thought to affect only males.
  • BIPOC & lower SES - Access to Healthcare
  • Blacks - mis dx as “Conduct Disorder” instead of ASD
  • Access to state services only if dx before age 22
Dx Later in Life (upto even Geriatric years)
  • Later years - dx is a relief, an explanation of “not fitting in”, provides a sense of community.

Sri Ram School, Gurgaon

Presenting on Autism @SriRam School, Gurgaon with ~ 60 parents and educators. Double screens so I could see the audience on one screen from my end. 

Sadagopan Raghavan

This is a paper I did for my Developmental Psychology course. The subject for my case study is my grandpa Raghavan. Unfortunately from the time this paper was written  there was significant deterioration in his health and my Raghavan Thatha passed away on Jun 10, 2015.


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Developmental Tasks in the Elderly

Case Study: Sadagopa Raghavan


Hari Srinivasan

Developmental Psychology


Abstract


The subject of this case study is 82 year old male, Sadagopa Raghavan, who currently resides in Chennai, India. The individual has recently been diagnosed with Parkinsonism. This paper looks at his life history and examines his current level of performance per Robert Havinghurst’s Developmental Tasks for his age group.


Method of Data Collection


Information about the subject was gathered from family members and a medical doctor familiar with his case, as well as examination of reports and lab work on his case. Since the subject is my maternal grandfather, statements are also made based on personal observation and knowledge about him over the years. The appendix contains interview questions.


Personal Reflection


My 82 year old Grandpa Raghavan had always represented someone who did not let age limit him. It seemed like he could go on forever. He successfully switched career tracks several times over the course of his life, even starting a new law career at the age of his retirement. I’ve always thought he had a most productive and interesting life. He has always been active and engaged in some activity. A few months ago he was diagnosed with Parkinsonism. Last month he collapsed and spent 10 days in the Intensive Care Unit to the considerable shock of the whole family.  


In the context of our developmental psychology course, we study the different tasks or crisis that we face in different stages of our life. Psychologist Robert Havinghurst defined the developmental task of dealing with aging parents as a crisis of middle adulthood. I feel that dealing with the crisis of aging grandparents or near family members is a developmental task that needs to be included for the younger age groups as well. As children, we assume the immortality of our grandparents, especially if all four are alive, so a potential crack in their seeming longevity comes as a shock.  


Description of Individual and Background


Sadagopa Raghavan was born on Aug 25, 1932, in Chennai, India. He was the third son in a large family, typical of that period with 4 brothers and 2 sisters. His own father had been an entrepreneur, which meant that the family fortunes fluctuated over the years depending on the state of his father’s business ventures.  The family went from extremely wealthy with cars, timber estates, mica mines, and mansions, to being economically challenged.  Thus his childhood included interesting experiences like visiting timber estates in the South western state of Kerala, where along with timber; elephants would also be captured and used for hauling logs.


Raghavan’s education was typical for boys of that socio-economic class of that era in India. My family belongs to the Brahmin caste in India, which usually places a lot of emphasis on education. He and his brothers attended Ramakrishna Mission School in Chennai and went to study at Madras Christian College.


Raghavan had an interesting family. His mother operated a small scale business of her own – raising dairy cows and selling milk to local residents and businesses. His mother even participated in the Indian Independence struggle movement, giving speeches to other local women to inspire them. One time, he spoke of his mother’s sister, a social worker who had chosen to help out the “shudra” (or untouchable community) thus becoming shunned by a number of the Brahmin community. I found it refreshingly progressive for women of that era. Another cousin of his ran a Gandhi ashram which assists and educates the poor.


It was expected that Raghavan would follow the footsteps of his older brothers and do Math in college but Raghavan took up Zoology. He had once said that he would have liked to have been like Jacques Cousteau, the marine biologist, but that would not have been an acceptable profession for a Brahmin boy. As it is, he had to do his dissection projects well away from the house, as no meat was allowed anywhere near a Brahmin home. After completing his graduate degree in entomology from Madras Christian College, he became a zoology lecturer. He often recollects the time he had taken his students on an overnight camp to watch baby turtles hatch on the beach.


Raghavan switched careers and joined the central government service based in New Delhi, India. As was the custom of that time and which prevails even today, his marriage was arranged. He had two children - a daughter (my mother) followed by a son. The government job meant that he worked in various departments such as Archeology, Music Arts and even served as Assistant District Collector in rural areas. After his second child was born, Raghavan went back to college to earn an MBA at the University of Delhi.  The business degree led to overseas opportunities and he was sent as part of the developmental aid initiative to the Kingdom of Tonga in the South Pacific.


Raghavan’s stay outside his native India was probably the most prolific period of his life. He was responsible for setting up the small-scale industries center and Tourism in Tonga amongst other things, He was a terrific speechwriter. Though it was not part of his job description, Raghavan helped write the Maritime Law for Tonga as they had none, and Japanese whaling vessels were illegally poaching whales in Tongan Waters at that time. Whaling was still legal those days and my grandpa has recounted stories of the gigantic whale bones that their dog would somehow find and bring home to chew on.


He then got an executive level position at the United Nations and traveled extensively all over the world for trade talks and industrial development. He was even a speaker at the United Nations Conference for Trade and Development. His name would be featured regularly in the New Zealand and Australian newspapers as well as in other countries of the Pacific and even in the Irish paper. Raghavan has met many world leaders including Queen Elizabeth II on her royal yacht Britannia.


At age 55, Raghavan returned to India. He resumed his Indian Government Service for few years but before retiring he again went back to the University of Delhi and got a Law degree. Thus, as soon as he officially retired at age 58, he was ready for another career. He joined some well-known Supreme Court lawyers as a junior lawyer. But given his experience and articulate writing skills, he was asked to write briefs almost immediately and started arguing Supreme Court cases within a year. 


When a consumer protection governmental commission was set up, Raghavan was asked to join. There was no formal Consumer Protection Law in India till that point, and a Commission was set up to compile existing cases and draft a comprehensive Consumer Protection Law. In a sense, Raghavan is one of the drafters of Consumer Protection Law in India. 


My grandpa is also a great admirer of Ralph Nader and would root for Nader whenever Nader stood for the U.S. Presidency. Raghavan carried on his Supreme Court Law career well into his 70s, winning a majority of his cases. He has worked on some landmark cases such as the Kaveri river water dispute case between two southern states.


He had a very intense personality and was always well-planned and meticulous in everything he did. On the other hand, he did tend to be over anxious and wanted every minute detail planned well ahead of time. 


For all his brilliance he was very poor at handling any kind of gadgets from TV remote controls to learning how to use the computer. It was my grandma who would often do all the computer related activity. Grandpa would discuss Indian temple architecture at length, probably as a result of his years in Archeology. He’d even helped secure the site for the well-known Malai Mandir temple in New Delhi. 


He loved gardening and had quite the green thumb growing all kinds of vegetables and experimenting with hybrid varieties. My grandma reports that grandpa often gave advice on plant growth to their botanist neighbor who worked in the Agriculture Department in the Pacific. Raghavan had developed some dozen varieties of eggplant for instance with different combinations of coloring and had come up with a new sugarcane variety in the Pacific. In India too, he continued his passion using pot plants on the balcony and terrace as they now lived in an apartment.


As they were aging, Raghavan and his wife decided to shift back to their native Chennai in South India, to be close to their siblings and other extended family. They made the move 4 years back. 


However, the move meant the end of the law practice as the Supreme Court is located in the capital city of New Delhi.   Suddenly Raghavan was not a busy man anymore and he had been used to being busy all his life. It was just him and his wife at home and really nothing much to do. Though both of his children visited, they lived in other countries and had their own young families to take care of.  My grandparents still attended all the weddings, other family events and rode enthusiastically on public transportation to events and temples. Mrs. Raghavan had been a homemaker all her life and she continued in that role, though a lot slower.  However, Raghavan simply was not being intellectually stimulated anymore and that is when he visibly started slowing down. 


Mrs. Raghavan reports that in the last couple of years he would just wander around the house, not really interested in anything.  He would read the newspaper and watch the occasional cricket match. Raghavan had always loved writing in his diary yet he never asked to buy a diary for the year 2014 at all. Mrs. Raghavan simply thought he had lost interest and did not think much of it.  


Small unnoticeable memory lapses followed but this was put down to age. He started eating less and became physically weaker. His memory lapses increased while his motor skills decreased. His handwriting skills declined and he became reluctant to even pick up the pen as he could no longer motor plan to write, though he would stare at the paper. 


He was diagnosed with Parkinsonism in September 2014. Some of his medications induced hallucinations and he would imagine people or situations. He would speak incessantly on some topics like court briefs but his speech would often be out of context and unclear. With physiotherapy and medication, his writing skills seemed to improve as well as his memory but the nature of the disorder means waxes and wanes.


Developmental Tasks


Developmental Psychologist, Robert Havinghurst (1968) of the University of Chicago delineated tasks that were to be carried out in each of the 5 major stages of life.  According to Havinghurst:


The developmental tasks of life are those things that constitute healthy and satisfactory growth in our society. These are the things a person must learn if he is to be judged and to judge himself as a reasonably happy and successful person… Some tasks arise from physical maturation… others arise from cultural pressure…and yet others from the personal aspirations of the individual which are part of the personality or self.


Each age group faced different developmental challenges or tasks.  For the Later Maturity stage of above age 60, Havinghurst lists six such tasks.


1.     adjusting to retirement and its reduced income

2.     adjusting to declining physical strength and health

3.     adjusting to change in the health of one’s spouse

4.     establishing an explicit affiliation with one’s age group

5.     Meeting social and civic obligations.

6.     establishing satisfactory physical living arrangements


Havinghurst’s focus is on reorganizing functions and expectations. For example, older adults who do not accept their changing physical and heath limitations and adapt may become maladapted. According to Havinghurst, the continuing refining roles and expectations to meet environmental demands accomplish the maintenance of identity. (ed. By M.S. John Pathy., 2005, pp.54-56).


Four of these tasks (1, 2, 5 and 6) are examined in the case of Sadagopa Raghavan as they seem most relevant to his case.


Task: Adjusting to Retirement and Reduced Income


Fortunately, finances are not a challenge for my grandparents in their aging years. Raghavan’s successful careers, savings and investments over his lifetime meant that they could expect to maintain a comfortable standard of living. Having retired from the Indian Government, meant that much of their medical expenses would be covered under the government medical scheme for their lifetime. So fortunately living and medical expenses are not an overriding issue at this point.


Psychologist  Robert F. Peck (1968) had identified, “Ego differentiation vs. Work Role Preoccupation,” as a conflict that arises in the elderly group. This essentially refers to, “finding ways to appreciate and identify the self without the career being the marker of success.” (ed. By M.S. John Pathy., 2005, pp.54-56). Raghavan had coped with his first retirement by plunging into another career.  It is possible that Raghavan’s behavioral apathy towards new interests in the last two years could simply have been early signs of the Parkinsonism which was yet to be diagnosed. If that health concern had not appeared, it is possible he would have developed new interests in his new environment given his self-driven personality, methodical nature and innate desire to remain active.


Task:  Adjusting to Decreasing Physical Strength and Health


In my grandparents’ house, it was my grandma’s asthma that had been the overriding medical issue. Thus my grandpa Raghavan falling ill had been unexpected. He had always maintained reasonably good health till around age 80. “The caregiver for a married elderly frail person is usually the spouse, who is also elderly.” (Berger 564). Thus suddenly there was a role reversal - “The partner who nurtured may need nurturing care; the healthy partner may have to assume new roles of banker, handyman and decision maker.” (ed. By M.S. John Pathy., 2005, pp.54-56). During one his moments of consciousness during his hospital stay, my grandpa had sadly remarked on the difficulty that my grandma now was facing. Indeed, my 76-year-old grandma now has to manage everything from handling medical claims and treatment to hiring support staff to managing finances in addition to her own fluctuating health. 


However, Raghavan had the foresight to keep his wife well educated on managing finances as a significant burden of IADL (Instrumental Activities of Daily life) has now fallen on her shoulders. IADLs include, “managing medical care, food preparation, filling out tax forms and payments, transportation, communication, maintaining a household and managing finances… IADLs are thought to be even more critical to self-sufficiency than ADLs (Activities of Daily Living)” (Berger, p. 562).  While my grandma is managing well on this front, fortunately she also has significant help from her son on these matters.   


Raghavan has a condition called Parkinsonism. The better known Parkinson’s Disease (PD) is generally associated with Lewy bodies in the brain neurons which can be addressed with dopamine replacement therapy. Parkinsonism, on the other hand, is an atypical form of PD and can include wide-ranging symptoms in addition to typical PD symptoms, and may or may not respond to dopamine replacement therapy. Related neurodegenerative disorders like Progressive Supranuclear Palsy (PSP), corticobasal degeneration (CBD), multiple system atrophy (MSA) etc., are all classified as Parkinsonism.


Raghavan had initially refused to accept that anything was wrong with him at the time of his diagnosis a few months ago. Initially, he developed mild symptoms of the condition which includes bradykinesia (slowness in the execution of movement),  pill rolling movement  (mild form), tremors and cogwheel rigidity. 


Later, he developed Parkinsonism Dementia.  This is where the patient starts losing their recent memory and they have difficulty in forming new memories. The pathology behind this is decreased dopamine production in the substantia nigra located in the basal ganglia. It has two divisions - one goes to the mesolimbic system (affects memory) and the other to the cerebellum (affects motor). So both memory and motor are impacted negatively. 


Constipation due to slowing of the bowel muscles reduced his appetite. The decreased eating and drinking along with metabolic derangement resulted in hyponatremia (drastic drop in sodium levels). He lost consciousness and had to be rushed to Intensive Care Unit. It was also thought that he may have had seizures and a mild stroke. One of the main attempts in ICU was to restore his sodium levels along with dealing with age-related issues in ICU such as respiratory infection.


After around 10 days in the ICU in November-December 2014, he was moved into the regular ward and started on slow liquid feeds and physiotherapy targeted at motor activity in order to decrease chances of disuse atrophy and stiffness. After two weeks of hospital care, semi-solid soft diet, he was discharged but will need rigorous care at home. He needs to work more on physiotherapy in order to improve his basic walking and motor skills as well as regular food and bowel movements. He needs to avoid excessive bed rest and its related consequences such as bed sores. He will likely need 24 hour case in the near future in case he tries to get up and falls before he regains his walking skills and then daytime assistance with living skills after that. He is not able to independently perform most of the tasks identified in the Activities of Daily Life (ADLs), namely eating, bathing, toileting, dressing and transferring from a bed to a chair (Berger, p.562). But in the few days since his discharge from the hospital, he is showing signs of improvement in areas of walking, eating and trying to get up from the bed on his own.


On a psychological level, there is bound to be a decrease in morale for Raghavan. This is going to be one of his major challenges ahead. He not only has to deal with recovering from a significant hospitalization setback but also needs to be dependent on other people to assist with his daily living skills. Having to wear an adult diaper can appear extremely demeaning for most adults. To get out of the hospital bed to sit or do his walking exercises, he had to wait for the twice daily visits from physiotherapists. That is bound to be a great source of annoyance for a formerly active individual. One time there had been some delay in changing his adult diaper. He had demanded to go home from the hospital, stating that he was, “being treated like a worm.”  As part of his coping mechanism he has sometimes behaved like a stubborn child, refusing to eat or refusing to cooperate with therapists, or getting angry. He had pulled out his nasal feeding tube and his IV line at the hospital and needed his hands to be restrained which further upset him. A thumb impression had to be taken in place of his usual signature for the annual life pension verification, which again upset him. His reaction is not surprising given that in countries like India, only the un-educated use thumbprint signatures.  Counseling and care from close relatives and loved ones always helps in this situation. In his case particularly, memory of the incident may not be properly established, according to my cousin and medical doctor, Dr. Madhu Parthasarthy, who has studied his case. So there maybe distortion in his reaction to it and patience is required while nursing.


Fortunately, Raghavan’s family has been very supportive in his time of need. Raghavan’s son visits often and helps guide his treatment plan. Relatives poured in to visit him at the time of his hospitalization and continue to visit him frequently. Many helped spend nights outside ICU and helped with food and moral support for my grandma. His nephew frequently comes and speaks to him of his younger days to divert his obsession with law, and my grandpa even recalled the names of the family cows and pet dogs they owned when he was a child. Both his sisters visit and talk so much that he has to tell them to stop talking. His brother calls frequently. My grandma’s siblings also offer considerable support, especially my grandma’s younger brother. The visits and calls no doubt cheer him up immensely in his time of need. He will continue to need this support going forward.


Task: Establishing satisfactory living arrangements


When Raghavan and his wife moved to Chennai, they did so with the explicit aim of being close to many of their near and dear ones in their old age. Their plan was actually well thought out, as evidenced by family support during the time of his hospitalization. The advent of Parkinsonism was an unexpected setback. That prematurely moved Raghavan from the old-old elderly to the frail-old elderly category. With physiotherapy, Raghavan is expected to regain some level of mobility, though he is likely to continue needing daytime assistance from staff for daily living skills.


Task: Meeting social and civic obligations


I feel this is one area my grandfather met very well. Throughout his work life, he had always been admired as a conscientious and trustworthy individual by all around him. He engaged in a lot of volunteer work and activity. Whatever task he undertook, he did it wholeheartedly and with great sincerity. When the Malai Mandir Temple authorities approached him a few years back, he declined the need for a public ceremonial acknowledgment for his earlier contributions via a plaque etc.  


He never engaged in corruption that is rampant in developing nations like India despite occupying positions of considerable authority and influence. Over the course of his life, he always strove to find gainful employment for many individuals he had come across of varying backgrounds with no thought of personal gain. He has often been a counselor for many family crises in the extended family circle and amongst friends.


Of course, the sudden advent of a debilitating disorder like Parkinsonism changes the game plan and he is in the process of finding ways to cope with the changed circumstance. The family around him will have to help him in this process.


Summary and Synthesis


Worldwide, the life expectancy of humans is increasing. According to a report by Muthane et al. of NIMHANS (National Institute of Mental Health and Neurosciences, Bangalore, India):


The elderly population in developing countries is predicted to increase by 200- 280% compared with a mere 30-40% in the developed nations. Of the world’s 580 million elderly (>60 yrs), 61% live in developing countries and 22% (of total) live in India. 


A corresponding increase in age-related disorders is only to be expected with this huge increase in aging population in India. The NIMHANS report further cites a study carried out amongst the elderly in Bangalore, India, showing that, “24% had Parkinsonism, with PD being the commonest (71%) followed by drug-induced Parkinsonism (2.55%).” They acknowledge that Parkinson’s and Parkinsonism has become a common neurological problem amongst the elderly in India. A major task going forward for these countries will be a establishing a system of caring for the elderly. (Muthane, 2007).


The major challenge at the individual level for 82-year-old Raghavan is coping with the realities of his chronic illness. Though Parkinsonism is understood to be degenerative in nature, the degree of progression and treatment options are not fully understood. Parkinsonism medications may also produce unpleasant side effects like hallucinations and insomnia and need to be constantly monitored and modified. Other age related conditions could add complications. 


Psychologically, Raghavan still has not come to terms with his new and possibly debilitating diagnosis. He is intelligent enough to grasp that this label is thought to be neurodegenerative and that can be very devastating for anyone to hear. He may be worrying about my grandma’s future and other family issues as well. 


The fact that he is likely to be dependent on others for his daily living skills will no doubt irk him immensely.  The possibility of loss of some of his excellent cognitive abilities and memories due to the nature of his illness may be extremely frightening for him to deal with. 


Struggling with both motor skills and memory loss is overwhelming at best. Continued support and counseling from family and friends will be critical. It will be a trying time for him and his caregivers as they attempt to journey on this new path. 


People around Raghavan will have to help him develop new interests as part of his coping mechanism. For instance, interest in spirituality is both acceptable and age appropriate for him in the context of Indian culture, as is interest in music. In addition practices like regular breathing and meditation exercises may in fact help brain functioning. He may never go back to being the dynamic active individual of old but has to remember that the end game is a decent quality of life and a good respect for the self. 


References


Berger, K.S. (2013).  Invitation to the life span (2nd ed., pp. 499-572). Macmillan Higher Education.

ed. By M.S. John Pathy. (2005). Principles and practice of geriatric medicine. (J. Morley, A. Sinclair, & M.S.J. Pathy, Eds.) (pp. 54-56). Chichester; Wiley, c2006

Havighurst, R. J. (1953). Human development and education.

Muthane, U., Ragothaman, M., & Gujuraj, G. (2007, September 10). Epidemiology of parkinson’s disease and movement disorders in india: problems and possibilities. Retrieved December 11, 2014, from http://www.japi.org/october2007/R-719.pdf