(Names of PWD and family changed to protect their identity)
Anjana (aka Anju) is a young lady of about 40 years, who is a Special Needs person with Autism. Lives with her mother, who is on Daily Dialysis under CovaiCare for about eight months. Her younger sister Sandhya is married with two young children and, lives in the US.
Anju was brought up protected by her mother, who would not let her go out of sight even for a short duration. Anju managed herself very well. She liked cleanliness and her cupboards were always kept well. She has a fascination for water – loves to play with water. Her bath may take couple of hours! She is verbal and friendly.
After about eight months stay in the retirement community , Anju‘s mother passed away after a brief stay in a hospital. Her kidneys failed.
We had to do something fast to care for Anju until Sandhya came from the US. We decided to shift Anju to our Assisted Care Centre, where we have nurses and caregivers 24X7. The residents of the senior community in Coimbatore, also chipped in.
It was traumatic for Anju. Sandhya came from US with her husband and children. It was heart breaking to see Anju searching for her mother. Sandhya, her husband ( a remarkable man for whom Anju was like his own elder sister) and their very young children did their best to console Anju and cheer her amidst the grief. Sandhya and her family took Anju to their village to perform the last rites for their mother.
After a few days, Sandhya, her husband and Nandhakishore, VP (Care), Senior Health Manager Mrs Sucilla and I decided to work on the way forward for Anju. We requested Akila Vaidyanathan and Sriram of Amaze Trust with whom CovaiCare has a tie-up to help Anju adopt a life after the demise of her mother. A meeting was convened in my house (I was recuperating after Cataract operations) which was attended by all of the above mentioned as well as Balasubramaniam, parent of PWD and Trustee in CovaiCare Trust.
We decided that:
- Anju would go to Amaze Vocational Centre every day for about a week, so that Akila and her team can identify the subjects that would interest Anju which can be keep Anju occupied.
- Make a room in the ACC similar to the room that Anju is used to.CovaiCare would do the needful. Have a TV in the room since Anju is known to be fond of watching cooking serials. Her mother’s photographs will not be in that room
- Since Anju is happy with children, send her to the school nearby, where Sandhya admitted her younger daughter temporarily in Coimbatore. Though Anju was happy with the children, it could not be sustained due to logistic reasons.
- Employ a caregiver from 7am to 7 pm. A lady was identified from the nearby village from where nearly 80 men and women are employed by CovaiCare in that retirement community.
- Akila would prepare her Assessment Report on Anju and based on that report, work out a schedule for Anju. This was done very deliberately and in great amount of detail by Akila and included activities that Anju likes. It was indeed an elaborate and useful report for implementation.
- Shri. Balasubramaniam has set up facilities for digitisation of documents, which his son is actively involved from their villa in the same community. Anju would also be shown how to make paper bags which Bala has developed.
- The schedule for Anju included time for TV watching, sorting and cutting vegetables in Anju’s room ( the vegetables were brought from the main kitchen of the retirement community), going to park in the evenings, going to the Common Dining room for all meals, time to rest, time to spend alone without the caregiver when the caregiver went for lunch in the ACC etc. Thanks to Akila and Sandhya, this was meticulously planned and could be changed where necessary to suit Anju’s interests.
- Sandhya was to sleep in Anju’s room at night and slowly distance herself away for Anju to sleep alone in her room. ( Nurses and Caregivers are available in the ACC at night).
- Anju’s interaction with the residents to take place as much as possible with the Caregiver present.
- Different Caregivers from ACC spent time with Anju so that she is not dependent on a single nominated caregiver, who indeed became her best friend.
- Sandhya was asked to leave Anju for some time in the daytime and Anju’s reaction were to be noted. Slowly Anju had to learn to live without Sandhya’s presence. For this even Sandhya sleeping in the room of Anju was stopped. Once Sandhya too gained confidence, she was to go out of the retirement community and the city for a few days, which she did
- Finally Anju should start her life in the ACC and Sandhya leave for the US.
The decisions taken above were implemented and monitored and counselled by Akila. The ACC was indeed a blessing. There is a beautiful park adjacent to the ACC, where all senior citizens take a walk in the mornings and evenings. Anju loves going to the park and walking and talking to them. She attends all events in the community and goes to a nearby temple escorted by the caregiver once a week. Since the community is spread over 15 acres with good security and beautifully landscaped with over 130 villas, Anju likes the atmosphere and could adjust to her routine easily. Now, the Nurses and caregiver are teaching cooking to Anju in the pantry of the ACC. She is a keen learner. Anju follows her schedule and does not like to deviate. One Sunday, when I went to meet her in the afternoon, she was cutting potatoes and the TV was on. She simply told me , “TV Time now!!”
Sandhya has since returned to the US. Her initial apprehensions, are disappearing. We send photographs, weekly reports to Sandhya who can also see Anju and speak to the Caregivers through video calls.
And, the biggest strength is Akila and who is the defacto mentor for us. We are learning. And there is so much of joy in this learning.
( CovaiCare has evolved a concept of care for PsWD and is available in PWD Care section of our website https://www.covaicare.com )
Colonel A Sridharan, VSM