Humans of Dementia - Ajay

 Ajay became a part of A1Snehanjali in 2013 when he was seeking employment while working as a farmer. Ajay is 25 years old and currently works as a caregiver for people with Alzheimer’s disease. He spends his days taking care of them and tending to the needs of the residents. 

Ajay has been a part of the organisation since the project was initiated in August 2013. After he started working at A1Snehanjali, he learnt about Alzheimer’s and he decided he wanted to help the people who have become the victims of such a “nirdaye” (cruel) disease. “Everyone should live a good life,” he said. “Just because they cannot eat or relieve themselves independently, it does not mean we will take away their right to live a good life.”

As a caregiver, Ajay’s job entails waking up the residents, giving them a bath, giving them their medicines, feeding them their breakfast, taking them for a walk, engaging them in group activities, changing their diapers, preparing their lunch and then taking them for a nap. He manages all their grooming activities like helping them brush their teeth, changing their clothes and trimming their nails.

Ajay shared the story of one of the initial days of his job as a caretaker. At that time, there used to be only one resident in the organisation who had a habit of wandering off. Ajay used to stay by his side all the time and follow him around. Spending all his time talking, playing and taking care of that one resident made him so attached to him that Ajay started considering him as his own family member. When asked about the challenges he faces during this job as a caregiver, Ajay laughed and replied, “It’s their anger and their violent hits.” In situations like these, he waits for a few minutes for them to calm down and then tries again.

Despite this job being physically exhausting and mentally draining, the emotional attachment that each resident has with Ajay makes this job worthwhile for him. He “feels good” even after being tired. There have been numerous days throughout the years where Ajay wants to take a leave. When the residents get to know about this news, they get anxious about how they would be spending their day without Ajay, or who would look after them and listen to them talk. And the day Ajay returns to them, they immediately become happy. Ajay says that all this love and little acts of caring they have for him touches his heart and makes him want to work harder for them.

There is one thing that, he feels, many people do not know about Alzheimer’s and dementia disease― the importance of taking care of people who are diagnosed with the condition. Many people give up on them after the diagnosis because they find looking after them to be very tiresome and taxing. Ajay strongly believes that people should not ignore the needs― physical, mental and emotional― of these people. He also thinks that as a caregiver, it is necessary to know how to handle the resident, how to calm them down and understand them and also efficiently manage their sanitation and grooming.

Whenever someone learns that he is working as a caregiver and taking care of people with Alzheimer’s, they greatly appreciate him. He promises to work for and help these people till the day he can and also hopes others would follow his lead and help these people in all the ways they can.

Ajay strongly believes "Those with dementia are still people and they still have stories and they still have character and they're all individuals and they're all unique. And they just need to be interacted with on a human level." - Carey Mulligan.

By Vansh Tibrewal

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Humans of Dementia - Jenet

 Jenet is a 37-year-old qualified social worker who has been taking care of Person with Dementia, Alzheimer’s for the past 7 years. In 2012, she was working with children who were diagnosed with HIV/AIDS, but she was simultaneously also looking for a job opportunity. This is when in 2014, her journey as a caregiver with A1Snehanjali, assisted living elder care home, a project of Silver Innings, began.

Humans of Dementia - Jenet

In 2006, Jenet’s grandmother was diagnosed with Alzheimer’s disease. This was the first time she encountered the condition and understood it. The diagnosis was a changing point in her life because she couldn’t fathom the fact that such a disease exists. However, in the process of taking care of her grandmother and looking after her, she learnt how important it is to be there for a person with Alzheimer’s. She recognized how important it is to tend to their needs and to let them know that there is someone to look after them.

As a professional, Jenet’s job begins at 9 in the morning and ends at 6 in the evening, but as a caregiver, she has a 24-hour job. She believes that there are no time boundaries for a job like this because the residents of A1Snehanjai require emotional care, which isn’t something that can be limited within fixed time periods. Her days are spent planning and managing other workers who work at A1Snehanjali and tracking the activities of the residents ― whether they’ve taken their medicines and meals, and if not, why, what’s their mood for the day, how they are engaging in different activities. She also arranges for doctors, physiotherapists, entertainment programmes and creative activities, helps her staff in grooming and feeding the residents, and always motivates and encourages the residents as well as her staff.

Dementia Friend

She started working as ‘Center Manager’ at A1Snehanjali one of its kind Dementia home in India and her passion, dedication and curiosity to learn was not only noticed but also appreciated by Management and she been promoted as ‘Senior Center Manager’.  Her work not only includes managing A1Snehanjali, but also to work and coordinate with local community and make meaningful impact for development of community including Zilla Parishad Primary Schools, Faith base organization, Municipal Corporation and  Environment. Her work and and human management during 2020 and 2021 Covid Pandemic is her biggest achievement and moment of honour for her organization Silver Innings.

Unsung Corona Warrior

She often came across situations where the family of the resident thought that the memory loss was just an act to gain attention and not a real symptom of something as severe as Alzheimer’s. That is why she believes that there should be more awareness as well as acceptance of the disease. People should know what Alzheimer’s is and if they suspect anyone is showing the symptoms, they should take it seriously and consult a neurologist or psychiatrist. There were also times when her own mood (or the staff mood) seemed like a challenge or hindered the caregiving work. In situations like these, Jenet conducts creative activities like painting and crafting, or different entertainment programmes like movies, listening to songs, dancing and playing games as a means to relieve the stress of her team and also refresh the residents mood.

Multi Role Dementia Warrior

The person suffering from Alzheimer’s are dependent on others; they need love, care, support and attention. Even though there is some stress, the emotional attachment with the residents and their love makes up for all of it. She says that although the residents might not remember her name, they search for her when she is not around, and this, alone, is enough for her to keep working for them.

The day she had taken up this job, her family had been bewildered, “Udhar jaake kya kaam karegi?” (What work will you do there?) However, now, after Jenet has made a lot of people aware about Alzheimer’s and how they need to be taken care of, people are proud of the work she is doing.

Jenet has learn from a wonderful quote from Leo Buscaglia that “Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.”

 

-Vansh Tibrewal

 

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Humans of Dementia - Raynah Remedios

 Making her father happier in his sunset years

Dementia and Alzheimer's were words Raynah had heard of, but could never truly comprehend. All she thought was that it perhaps had something to do with old age. She never realised the seriousness of the condition until it hit home and affected their lives as a family. Raynah lived in another city so her parents would visit her for about a month every year and she would visit them from time to time. 

There would be tell-tale signs in her father’s behaviour but as all do, would pass it off as absent mindedness or forgetfulness that was part of the ageing. There was this one time, when she saw him walking about with his dark glasses on. At first she ignored it but when she saw him reading the newspaper with his dark glasses on, she asked why? When he replied, “No wonder it is so dark! I was wondering why there is no light in your house." it made her wonder but not enough to be worried.

There were other such instances, which she dismissed off, like he would misplace things regularly, repeat the same stories or ask the same questions over and over again. She recalls that her mother was upset because he hadn’t wished her and thought that he was just being mean but he actually did not remember what day it was.  From not remembering names, not remembering days, years, birthdays to being unable to keep accounts, misplacing money, forgetting ATM pins, her father soon lost interest in doing the things he loved, like watching sports, movies and the news on TV. What worried Raynah more was that he stopped reading the newspaper, a ritual he had practiced religiously all his life.  

The family had till then still not realised that dementia had set in a while ago and was now progressing at an alarming rate.  When they finally took him to get some tests done, the doctor said that he should have been brought in five years ago. Everything quickly began to fall apart a few months after his diagnosis, as her father started to lose control over his bodily functions and would hide his soiled clothes in embarrassment. He used to love to eat and never wasted food but now he was now pushing his plate aside, barely eating a few morsels. His appetite diminished and slowly his personality started to change as well and would not talk much to anyone. He was angry a lot more and got aggressive when he would not be allowed to go out on his own. Her father walked out of the house often, would wander on the streets, get on to trains and buses and they would be forced to follow him, so he did not get lost. Raynah and her mother soon realised that there would be no permanent solution for this situation. 

On their next visit to the doctor, the family was told that the medication was not helping and the only option was to sedate him. The continuous sleeping most of the day left him disoriented and disheartened by the side effects, so the family decided not to continue to sedate him. When Raynah realised that her mother, who was his sole care giver, could not manage the pressures of looking after him all day any more, they began to reach out to people in the hope to find support and care. Of the options available, Raynah came to the conclusion that ‘A1Snehanjali’, dementia care facility of Silver Innings was the best place to give him the 24 hour attention, assistance and after  visit to the facility, they felt confident that he would be well looked after there. 

 

The choice to put their father in ‘A1Snehanjali’ wasn’t an easy one. It came with a guilt and disappointment of not being able to provide the comfort he needed and having to reach out to someone better equipped to help their father live out the remainder of his life, away from all his loved ones. ‘A1Snehanjali’ and their team proved to be the right choice and have not only been keeping him engaged but they have helped him retain some of his cognitive ability too. While his memory and cognitive and physical capabilities continue to deteriorate as the disease progresses, the family's only solace is that he is being taken good care of and doesn’t know what is happening. That he is happy and at peace in his own world, is now enough for the family.

Shared by Raynah Remedios, Daughter

Edited and Complied by Hira Mehta

Courtesy: 'Remember ME - You Me and Dementia' Book https://www.amazon.in/dp/9385221051 

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Humans of Dementia - Yogesh

 Many people around the world leave their villages and hometowns to move to another city, state or sometimes even country, for the purpose of work. Some migrate with their entire families; however, some take the journey alone. Yogesh, a 33-year-old caregiver of person with Alzheimer’s at A1Snehanjali, is one such person who left his village to work full- time for the organization in Mumbai. Other employees like him, mostly men, have also moved to Mumbai from their respective villages for the work opportunity at A1Snehanjali. As a result, while the local employees mostly work in 12 hour shifts, employees like Yogesh stay at the centre 24/7, and work in shifts to care for the person with dementia at the time when other employees aren’t there. Living and working in the same place, A1Snehanjali is like Yogesh’s home and work-space at the same time, blurring the lines between the two. 

While Yogesh is a full-time employee at A1Snehanjali, his work does not really feel like a ‘job’ to him. Rather, he feels as if he is just at home taking care of his own family members. Not only does he regard his person with dementia, the Residents, as his family, but he also finds such proximity with other staff members, who he considers to be his really good friends. Sharing such a bond with his fellow colleagues and residents is one of the reasons that Yogesh has continued to work at A1Snehanjali for almost 8 years now. His own family back in the village also support him in his job as they believe it to be ‘punya ka kaam’ or virtuous work. They are very proud of him. Thus, Yogesh continues to be invested in providing support to the person with dementia and realizes it to be a fulfilling duty. 

Yogesh’s journey at A1Snehanjali began unexpectedly. He hadn’t thought of working here at all until his friend directed him to the Silver Innings organization. Yogesh was in search for work so he was asking around and looking for job openings. This is when one of his friends told him that there was an opening at Silver Innings, new assisted living elder care home ‘A1Snehanjali’. Yogesh came to the centre and has been working here ever since. Before coming to the centre, Yogesh didn’t know anything about Alzheimer’s disease, Dementia, Elder care or caregiving work, but since he learned about it and got onto the job, he hasn’t looked back.

Over the years, one of the challenges Yogesh has faced is when a new resident arrives for the first time in the centre. They often take a lot of time to adjust to the new environment and it can be difficult for them to settle. However, the caregivers make the new resident feel safe and comforted, and so over time, the residents become accustomed to the environment. He and others at A1Snehanjali have learnt how touch, smile and love make all feel homely. 

While caregiving work has a lot of ‘giving’ in the help that is provided by the caretakers to the person with dementia, Yogesh feels that it is also one of the few jobs that gives back to the caretaker. Everyday he learns something new, which keeps the experiences fresh and different everyday. This makes his job dynamic rather than monotonous, even after 8 years of working in the same place.

"Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around." - Leo Buscaglia.  

By Vansh Tibrewal

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Humans of Dementia - Jasmina

After Jasmina completed her university education, she became a stay-at-home mother. Spending all her time at home, she felt like she was sitting idle without a purpose, especially since she was qualified to take up more work. She was dissatisfied with her current state and decided that she would venture out to work. This is when she was introduced to A1Snehanjali assisted living elder care home, a project of Silver Innings and the work they do for elders and dementia. And the credit also goes to her husband, who encouraged her to take up some work, then being idle at home. 

Prior to her introduction to A1 Snehanjali, she didn’t know what Alzheimer’s disease was. However, when she visited the centre and spoke to the staff, she learnt more about the disease itself as well as the role of a caregiver in the dementia person lives. As she began coming to the job, she felt a homely feeling, an affection and closeness, which was missing in her life. The person with dementia seemed like her old parents and grandparents, and she found happiness in serving them. The missing piece in her life had been filled by her job.

Jasmina has now completed two years as a Center In charge and caregiver at A1Snehanjali. Serving the person with dementia (called as Residents) over the years, she has come to realise the value of her own parents and elders, and how fragile those relationships are. She has also found her co-staff and management to be helpful and supportive of each other, creating a healthy work environment. This is why she considers the person with dementia (residents) and staff to be her second family. But, it is also due to this attachment that when a any residents passes away, it really affects her a lot. When you serve someone every single day and one day they are no longer there, it creates a void and the absence is felt. While this hurts Jasmine a lot, she knows that this is a part and parcel of her work as a caregiver, and so, she continues to work in order to better the life of the residents.

Jasmina’s family members are very proud of Jasmina and the work she does. Her children and mother-in-law are extremely supportive of her job, and it is due to this that she is able to contribute time at her job and at home. Every morning, Jasmina wakes up, sends her children to school and comes to the centre. At the centre, she spends time with the residents, person with dementia - talking to them, facilitating prayer time, doing meaningful activities with them like singing, playing, drawing and watching TV. While she is at the centre, her mother-in-law looks after the home, which provides Jasmina support as she is freely able to go to work without worrying about the house. When Jasmina returns from work, she spends time with her children and finishes up the housework.

Having worked as a caregiver for last two years, Jasmina only has one thing to say - “Understand the value of your parents and grandparents. Respect them and care for them. Teach your children the same because if you don’t, one day you will be in the place of your parents and you won’t have anyone there for you.”

- By Vansh Tibrewal

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Humans of Dementia - Ganesh

 Ganesh is a 24-year-old full-time caregiver at A1Snehanjali. He is from Adivasis community (indigenous peoples of India) from small village near Vikramgad, Palghar District. His journey as a caregiver to person with Dementia (called as residents) began when he was looking for a job after completion of his class 12th education in village. He was introduced to Silver Innings assisted living elder care home ‘A1Snehanjali’ at Rajodi, Virar and decided to take up caregiving as his full-time job alongside continuing his education with encouragement and support of compassionate management.    

As a caregiver, his job entails of several tasks such as making the Residents eat food, giving them a bath, conducting prayer time, and making them go to bed at night. Every day, the residents also have scheduled recreation and mental stimulation activity time where Ganesh and other staff members facilitate activities like playing games, music, dance, art & craft, walk etc

Before coming to the centre, Ganesh didn’t know anything about Alzheimer’s disease or A1Snehanjali’s work. When he came here and learnt about the disease for the first time, he was shocked - “Aisa kaise? Aisa hota hai?” (How is this possible? This happens?) Slowly, he learnt more about Alzheimer’s, the needs and challenges of its person and how care can be given to them to make their life experience smoother. Since then, he has been working for A1Snehanjali, taking care of residents at the centre. 

As a 24-year old, he is one of the youngest staff members at the organisation. Working in a place where the other staff members are older than you can sound like a barrier in making friends at work, however, Ganesh didn’t seem to face that challenge. Rather, he believes that he found his co- staff members to be more than friends - he found a family in them. This is because the staff and management helps each other out and treats each other with respect, which makes it a peaceful work environment. 

Whilst working full-time, Ganesh also managed to study side-by-side, and recently he completed his Graduation BA with 93%. One would assume that balancing both is a challenge, and the job would be adding to Ganesh’s stress. However, it is surprising yet pleasing to know that he doesn’t find his job stressful nor does he find it tedious. Instead, he feels that the job brings him happiness and joy. It relieves his stress and gives him the satisfaction of having done good in society. Everyone at A1Snehanjali is helpful and supportive of each other as well as the residents, and so he feels like he belongs there. 

Being a young man working at a centre that takes care of Dementia / Alzheimer’s person – mental health issues, one would think that his family would have some reservations, perhaps the typical expectation of getting a corporate job. But, Ganesh’s family doesn’t seem to think that way. On the contrary, Ganesh’s family gives him blessings because he is helping people, helping Elders, doing good and virtuous work. It is a form of seva and his family is proud of him for doing it. 

Ganesh is an example and inspiration to youth of India, which thinks differently, being progressive, and committed to humanity!  

By Vansh Tibrewal

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