History of Hope Ek Asha Organization
Hope Ek A.S.H.A. (HEA) - An organization
My mother, my friend, philosopher and guide was a very cheerful and committed woman. She was a caring mother and a loving doting grandmother. Her life revolved to establish her four daughters and serve her husband. She was an extremely virtuous woman whose teachings will forever echo in my mission. It was the sad demise of my father which led to opening of this Pandora’s Box.
Initially we thought she was lonely and depressed because of a large vacuum created after the loss of her life partner. She suddenly became lonely in her own house which was always amidst hustle - bustle.
I would often feel as if something was dying in her brain which could not be figured out. She loved having guests over, so she would still work and supervise in the kitchen, wanted to present the best dish for her grand children and would always look forward to take her son-in-law to Gaylord for lunch.
She had always feared darkness and sometimes later she politely refused to any family dinners. Little did we know that it was the Sun Down Syndrome that was showing up. My energetic and active mother slowly went down the stairs of a dark well despite my siblings’ occasional visits from USA, to see her.
She started forgetting her keys, forgot to switch off the gas and would come out of the bathroom without taking bath. Sometimes my Mamma was irritable but most of the time she was still joyful and eagerly waiting for me to have lunch together. This raised a doubt in my mind, is she really losing her memory or is she just pretending to gain attention? Nonetheless, I never ever missed a day to visit her.
I physically stayed at my home but mentally I was always with Mamma and was stressed even in my sleep. I was deeply saddened by the deteriorating mental health condition of the woman who gave birth to me and raised me. I already had the responsibility of my family and my profession but I accepted the responsibility of my mother gracefully and with gratitude.
It was in July 1999 that it happened. She developed Hypertensive Encephalopathy and suddenly fell unconscious. The doctors in the hospital did their best and I brought her home after a week. It was then that a neurologist advised brain biopsy to confirm her diagnosis of Alzheimer’s disease to which I refused.
In the next six months, the deterioration was very fast and she passed away very peacefully on 28th December 1999 with a goodbye smile on her lips.
I was alone caring and looking after my mother during her ordeal and have gone through the stress and anxiety.
After my mother passed away peacefully I started visiting similar patients / caregivers for their much needed medical and moral support.
And with the help of few volunteers who joined me in this mission formed an informal support group on dated 28.12.2000, the first death anniversary of my beloved mother who unfortunately suffered from Alzheimer’s disease when all her siblings were stationed abroad and I was all alone caring for her, to hold the hands of stressed caregivers which is very imperative and often ignored.
The care givers duty is 24/7 along with existing responsibilities and with no support. It gave me an immense satisfaction and contentment
It was Saturday dated 10.02.2001, I received a call in the evening from Ms. Radhika D. Srivastava reporter of The Times of India and asked as to what difficulty I experienced while treating / caring my mother as her grandmother perhaps was having same problem. Our conversation continued for ninety minutes as she herself was in acute problem as I guess and at the end Radhika asked that she want to publish this story in TOI with my phone number which I agreed.
Next morning Sunday 11.02.2001 an article was published in TOI page – 3 under the style “LIFE IN THE TWILIGHT ZONE” It was early morning at 6clock Sunday I started receiving calls on my two phone numbers 6411714 and 6438341 (Now 29221714 and 29228341). Me and my husband both were attending calls one after the other. Each talk was minimum of fifteen minutes at around 11 AM we both decided to write the contact number of the calls received and on that day 235 families contacted us. These calls were not only Delhi / NCR but also from outside. Looking at the pains of family who contacted us. We decided to visit each and every family. We could complete with in a period of six months and thereafter our society was registered 03.07.2001 when we came in contact with number of families suffering from the same pain within their families as I suffered.
As such someone of my group members including my husband took initiative to get this support group registered under the name “Hope Ek A.S.H.A.” in the year 2001 (ASHA being my mother’s name) with the under noted aims and objectives.
Now it is a registered body under Society Registration Act. XXI of 1860 (A voluntary research organization dedicated to care of the Alzheimer’s disease patients & their caregivers).
AIMS & OBJECTIVES OF Hope Ek A.S.H.A.
• Support the Caregivers
• Care of the Patients.
• Training the caregivers within the family, professionals and volunteers.
• Bringing caregivers together for exchange of their experiences.
• Free counselling for caregivers and other members of the family.
• Arranging outings for the patients along with caregivers.
• Organizing free memory clinics.
• Conducting mass awareness camps.
• Providing employment opportunities to the professional caregivers
• Providing information about the latest treatments.
OUR MAIN Activities
Main aims and objectives of Hope Ek ASHA
1. Mass Awareness
Alzheimer’s disease strikes elderly and the first symptom is recent memory decline which is usually missed and taken as a normal aging process. It is true that memory declines with age but when it interferes with the activities of daily living (ADL) then it is a serious development. To recognise the disease at an early stage we need to be aware of the stages of Alzheimer’s disease. Hope Ek ASHA has been striving hard for the last 15 years to create awareness about the disease and its recognition and management.
HEA conducts regular awareness programs at RWAs, Corporate, Schools, Senior citizen forums and Medical forums.
2. Home Care
Once a person is diagnosed with Alzheimer’s disease the long journey of caring begins The family needs to be counselled and supported so that they accept this change in their life Volunteers of HEA visit the families at regular intervals to counsel them The caregivers both family and professional need to be trained as per the individual needs and temperament.
3. Establish a Day Care Centre
A Day Care Centre for the Alzheimer’s disease patients in stage 1 and 2 is the need of the hour. Patients can be picked up from their home and dropped back in the evening before the sun set.
At the centre a structured activity programme needs to be followed where the patients are involved in brain stimulating activities and group entertainments in order to keep them safe and active.
Proper counselling for the caregivers by the clinical psychologists will be conducted.
This Day Care Centre will be a place for support and respite to the caregiver.
Till date we have organized more than 130 mass awareness camps / caregiver’s meets / counselling’s on memory related subjects at various forums like corporate, RWA, women organizations, schools etc with in NCR / out stations.
Presently 430 families have benefited from this NGO and some of them are under the umbrella of Hope Ek A.S.H.A. (HEA), who seeks guidance for home care to the patients.
Our family HEA has successfully completed 15 years in the service of humanity.
We have also created “Caregivers Forum” group on WhatsApp with family caregivers, volunteers of HEA, Panel doctors of HEA and senior citizens and now 70+ members have joined the group. It is very helpful in creating mass awareness on Alzheimer, treatment from the doctors on panel, sharing of thoughts / views. This has been found the best method of support rendered to the family caregivers, professional caregivers and senior citizens.
FUTURE PLANS OF HOPE Ek A.S.H.A.
(HEA) have plans to establish a “Old Age Home for Alzheimer’s Elderly” – A Day Care Centre, by involving healthy willing Seniors Citizens.
A brief about this project is available under the heading Mission and Vision.