Vol. 2
NEWSLETTER
May 2025
Newsletter Archives
What’s in this Newsletter
Educating Family Caregivers of PwMIs
A Sumana Trust and RFS(B) Webinar
Sumana Trust/SSIL Progress/ Initiatives
SSIL Families, Services, Ownership, Rental, Location details
Sumana Trust
R & R Programs
Suman Trust, AMEND families, bonding and shared outdoor experiences
Sumana Trust in collaboration with RFS(B) conducted workshop for family caregivers of PwMIs on 12/4/25.
Sumana Trust in collaboration with RFS(B) organised a webinar for Caregivers of Persons with Mental illness on 12/4/25
The webinar centered on the topic “Sexuality among persons with Mental Illness – What we need to understand”. The speakers being Dr.Latha Hemchand,Senior Consultant Psychologist, RFS,Bangalore,
Session was moderated by Dr.H.S Aditya CEO,RFS Bangalore Brach ,Neuro Psychiatrist and Medical Director,Manasa Neuro Psychiatric Hospital , Bangalore
Background, Webinar Proceedings and Response
The WHO defines “Sexuality” a central aspect of being human throughout life” But with regard to persons with Severe Mental Illness (SMI), there is a deafening silence among the professionals, caregivers, and the PwMIs themselves. We all come together to help the PwMI with regard to making them independent, finding them employment, making them socially competent, but when it comes to their unmet needs related to intimacy, companionship and sexuality we are silent.The subject is complex and controversial. Hence an open talk is planned to understand this.
This talk being the first talk of the series, Family Caregivers and Mental Health professionals were only invited.
Response for the webinar was very exemplary. Very senior psychiatrists Dr.Mohan Isaac,Professor of Psychiatry ,University of Western Australia, Dr. Ajit Bhide, Senior Psychiatrist St.Marthas Hospital, Dr.Kalyanasundaram Senior Psychiatrist and Hon.Adviser RFS,Bangalore, Dr.H.Chandrashekar,Senior Psychiatrist ESI Hospital Bengaluru and other psychiatrists participated. All appreciated the choice of this rare topic and came forward and shared their wisdom.
Caregivers shared their views, concerns and expressed interest to have more sessions on this topic, as its rarely discussed due to the taboo on the topic.
Sumana Trust Progress
SSIL Project Milestones
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7 Nos |
- Status of construction of houses : Plastering ,electrical pipe laying and plumbing is in progress
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7 Nos |
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8 Nos |
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> 32 Nos |
- Families made enquiries about inclusive living and rental model
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> 32 Nos |
SSIL Services – Medical, Nursing and Facility
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As per previously signed MOU (read Jan Newsletter) Oxford Medical College and Hospital will operate a mobile clinic at M/s Shanders Enclave or any other venue to suit Sumana Trust requirement. To start, Dept of Psychiatry will offer services from month of May 2025. In due course other departments will also provide services. This service is free of cost. Sumana Trust beneficiaries are requested to make use of this facility so that Oxford team will be familiar with our families and PwMIs prior to their shifting to SSIL.
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Collaboration with experienced MH establishments in progress
Planning for specific PRS activity to meet individual PwMI requirement of SSIL is in progress
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Negotiation with nearby Nursing College.
Discussion with senior living facility is under progress
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Through Guesture under finalisation
SSIL Services – Lifetime Care
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Two Beneficiary families in the process of forming private trusts
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Training and infusing common culture among PwMIs and community is under study
SSIL Housing – Ownership
Type
1 BHK
2BHK
Villa
Area (sq.ft)
Cost(INR Lakhs)
SSIL Housing – Ownership
Type
1 BHK
2BHK
Villa
Area (sq.ft)
Cost(INR)
SSIL Housing, Suman Trust Office – Location Details
Location link
https://shandersouthcity.com
Sumana Trust Office
At M/s Shanders Dwellington premises
Will be operational from June 2025
For SSIL project site visit
9845134874 Guruprasad (Sumana Trust)
9449631875 Mamatha.D(Sumana Trust)
Family Relax and Retreat Program – March 24 – 28, 2025 by Sumana Trust & AMEND
Sumana Trust and AMEND organizes R & R program for family caregivers of PwMIs every year to learn more about their loved ones feelings/concerns and more.
R & R 2025 was planned to Belur, Halebeedu and Chikkamagalur between March 24th and 27th 2025. 20 caregivers and 7 PwMIs joined, out of that 3 families with their 4 loved PwMIs joined R & R for the first time. 4 Sumana Beneficiary families and 3 families who were interested in Saksham Sumana Inclusive living project, participated to get a feel for the Sumana community.
Our recent R&R retreat blended relaxation with purpose—offering families a chance to bond, share caregiving experiences, and build supportive connections. Staying at Hotel Mayura (KSTDC) added to the comfort, with staff going out of their way to welcome our group. They kindly provided a hall for morning yoga, workshops, and discussions at no cost—making the experience even more meaningful for everyone involved.
Sight-Seeing HIghlights
We explored the beautiful temples of Belur and Halebeedu, masterpieces of the Hoysala dynasty. The trip also took us to Mullayyanagiri—the highest peak in Karnataka—and Bababudangiri (Datta Peeta), both offering breathtaking views. It was heartening to see our loved ones (PwMIs) freely mingling and enjoying every moment with the group.
Group Activities – Yoga, Fun, Art…
Group Activities
- Morning Yoga – Mrs. Tara led daily yoga sessions with gentle guidance and warmth. All participants joined in enthusiastically, setting a calm and energizing tone for each day.
- Fun Activity – Mrs. Veera Pinto hosted a lively session with mild dance, music, and interactive games. It was a joyful moment where everyone connected playfully—many rediscovered their inner child!
- Mirroring Activity – This simple yet powerful communication technique involved pairs of participants—one as a leader, the other as a follower—mimicking each other’s gestures and tone. It encouraged empathy, emotional regulation, and self-awareness through non-verbal connection.
One-on-One Conversations
Individual sessions created a space for PwMIs to share their thoughts and feel heard.
Caregivers had one-on-one time to express concerns, reflect on challenges, and receive supportive feedback.
Takeaways from Group Sessions – PwMIs
Insights and reflections shared by our loved ones (PwMIs)
Improved Relationships:
Participants who had attended previous R&R sessions shared fewer complaints about their parents, indicating growing mutual understanding.
Medication Matters:
Dinesha emphasized the importance of regular medication and acknowledged the ongoing support from AMEND families.
Changed Perspective:
Jnanesh shared that he once misunderstood AMEND, but later realized it helped his parents accept and support him. He now finds AMEND helpful and felt happy being part of the R&R.
Seeking Help for Symptoms:
Another loved one opened up about facing positive symptoms like delusions and asked for guidance to manage them better.
Fear of Losing Parental Support:
“Where will I get the love of my parents when they are no longer there?” — a heartfelt concern shared by a loved one.
Financial Independence:
“My parents don’t allow me to handle money,” shared another loved one, pointing to trust and autonomy challenges.
Parental Over-involvement:
Some expressed frustration over parents being overly involved in their daily decisions and routines.
Takeaways from Group Sessions – Family Caregivers
Insights and reflections shared by Family Caregivers
Future Security
Many caregivers shared deep worries about “Who after us?”—expressing the need for long-term care and structured support systems for their loved ones.
Medication Adherence
Parents discussed the emotional strain of ensuring regular medication, especially when met with resistance from the PwMI.
Emotional Exhaustion
Several caregivers opened up about burnout, loneliness, and the pressure of continuous care without adequate breaks.
Trust & Autonomy Dilemma
Balancing the desire to protect with the need to empower their loved ones remains a persistent challenge—especially around money and decision-making.
Value of Peer Support
Many parents felt reassured being among others who share similar journeys. The sessions helped them feel “we are not alone.”
Appreciation for AMEND & SSIL
Caregivers expressed gratitude for the community support and the structure SSIL offers for both short- and long-term needs.
Family Reflections on R&R
Selected feedback shared by participating families
Annual R&R Program
“We are very happy to participate in R&R. We look forward to it every year.”
A Step Toward Reconnection
“Due to my loved one’s mental illness, we lost touch with extended family and friends. This was the first time in years I stepped out with my loved one. Seeing other families gave me courage and hope to do more.”
Engaging Activities
“The yoga sessions by Mrs. Tara and the fun activities led by Mrs. Veera Pinto were wonderful. It was heartwarming to see so many families smiling and enjoying together.”
Encouraging Loved Ones
To motivate participation and self-expression, AMEND’s Executive Committee announced an essay competition for all loved ones who attended R&R 2025.
5 PwMIs wrote thoughtful essays about their experience. One participant gave an oral report over a phone call, while another, a budding artist, plans to capture the retreat through an illustration.
All participating loved ones will receive a trophy at the upcoming AMEND Annual Day 2025 as a mark of appreciation and encouragement.
The heartfelt feedback from PwMIs and caregivers served as a true energy booster for the organizers, reaffirming the importance and impact of the R&R experience.
Suggestion for the Next R&R:
Families from other groups have expressed interest in participating in future Relax and Retreat programs. In our upcoming edition, we plan to extend invitations to fellow families from other groups and states across India.
R & R Organising Committee: S.V Guruprasad, Sucheta Joshi, Dinesha , Veera Pinto
Sumana Editorial Committee: S.V Guruprasad, Mamatha.D and Sucheta Joshi