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  • Caregiver Community

    A place where Caregivers come together to share common experiences, challenges,and resources. 

    Caregivers are truly experts in patient management and can help each other because of their intensive experience in patient care at home. Caregivers can ask questions to others on this forum going through a similar caregiving experiences. They can start topics and discuss things like ways to manage daily tasks, where to find doctors, nurses, and other health services, how they manage stress, and any other topics related to caring for their loved one and for themselves. It is a great place for Caregivers to come and chat about the issues that affect them on a day to day basis and take time to focus on their own needs and health.

  • Evolving Personalities of Persons with Disabilities: Webinar Tomorrow
    Join us tomorrow Friday 30th August 2019 for an insightful session where we discuss the role of self advocacy and self determination among persons with disabilities. How did they push the barriers to become independent and create possibilities? Topic People tend to develop their personalities from the different things that they get to know and do in their lives, which may also have an impact from time to time. People develop their personalities at all ages and it is a constant shift for…
  • "Believe In Your Child"
    In our conversation with Anupama Bakhshy, mother of Pranav Bakhshy, a budding model and a young man on the autism spectrum, we gleaned a few insightful learnings based on her experience. Key take aways for parents of children with special needs, particularly Autism: 1. Keep the child or the young adult at the centre and not his/her disability. 2. Believe in the child. Just because its not been done before, it does not mean it can't be done 3. Follow the child. Align to the child's inclinations…
  • How We Helped Our Son On The Autism Spectrum Deal With Disaster
    Looking at the severe floods affecting Kerala this year, Anita Pradeep reminisces how she and the family, along with her 25 year old son, Sachu, got marooned in the floods last year and how they managed to keep Sachu calm and brave in the face of adversity. Today is 15th August 2019, a day that brings back to mind three days that seemed like three months last year in 2018. Memories come flooding back just like the floods that are lashing out at certain parts of the state. The only difference…
  • "But The Pain Does Not Leave Me"
    Anal Shah's son was 15 years old, when he developed a sudden fever and after a struggle of 20 days, died of multi-organ failure on 27th June 2017. She still struggles with her grief and wrote this heart wrenching note 20 months after his death. To all those who persistently feel I should MOVE ON after my child's death! It seems that my face reminds you of your own mortality. What if something similar happened to your child or your family member? What if you have to endure pain like me? That…
  • A child lying in bed with soft toys on either side of him
    'My Son Continues To Inspire The Perpetual Fight'
    Tahira Tahir from Pune is the Regional Coordinator of Cure SMA Foundation of India and a passionate parent advocate for access to the treatment options for Spinal Muscular Atrophy Type 1, despite losing her son to this rare disease. It’s been less than a year since I heard my life’s most shattering news, although it feels like I’ve travelled ages since then. In October 2018 my angel, the most beloved part of mine, my son Sameer Ahmad was diagnosed with a fatal, debilitating, rare neuromuscular…
  • Responders in yellow outfit helping in disaster management
    Be Prepared For Natural Disasters
    Natural Disasters can adversely affect elderly people and those with chronic conditions. Dr. Shital Raval details the issues faced and how you can be prepared if you are a caregiver to an elderly person or have a chronic condition like Diabetes, Renal and Respiratory Issues, Allergies, Cancer.   Natural Disasters (earthquakes, floods, hurricanes, electrical black-outs, blizzards, cyclones, storms etc.) can have a devastating effect on all but recent studies have thrown light on how…
  • An open and fallen bottle of pills spilt on the table
    What Every Patient And Caregiver Should Know About Opioid Drugs
    Opioids are essential to pain management in patients with chronic and severe pain. Since they are narcotic medications and have side-effects, it is important for patients and caregivers to be aware of the type of Opioid that has been prescribed and possible adverse reactions. Excerpted from Indian Primer of Palliative Care by Pallium India.  Opioids are a class of drugs that are used in pain management in patients with chronic and debilitating pain. They work by binding to opioid…
  • Pain Assessment Scale in colour from green to red
    How to Assess and Manage Pain
    People often have to deal with pain and it is difficult to assess the level of pain across different people. Pallium India has created the Indian Primer of Palliative Care for care providers. With their permission we have excerpted important elements that are useful to understand and manage pain.  Many people with chronic diseases will complain of pain and it being the most overpowering symptom of their condition. Besides physical discomfort, pain affects mental and emotional wellbeing…
  • A Father's Wish For Awareness And Inclusion Of Autism
    A dad of a 25 year old adult on the autism spectrum, and a member of the SCAN support group, Chennai shares the challenges faced by his son, the techniques deployed to overcome these and enable him to be an independent young adult. #AutismDad  Today my son is 25 years old, a MBA post graduate with work experience in Human resources from a reputed company.  My son’s childhood days with autism Looking back it has been a roller coaster ride filled with challenges from the time my wife…
  • How Yoga Helped Them In Managing These Five Chronic Conditions
    Can Yoga help people manage their chronc conditions? We picked out a wide range of conditions where patients have benefitted from practice of yoga.  It is fairly well known that people with certain conditions like Diabetes, Hypertension and Arthritis benefit from regular practice of yoga. You can also download our ebooks on the same from our E-Books Resources Page.  But the benefit of yoga goes beyond that to neurological conditions like Parkinson's and  Epilepsy, auto-immune…
In the last couple of weeks, I have heard of two different cases in India where the hospital kept a patient in ICU on life support for weeks on end. In one case, even after the family asked for the patient to be transferred to a normal room, the…
Query from a caregiver Does anyone know a counsellor in Ahmedabad who can go to a patient's home. Patient has had a couple of strokes and even though there is no paralysis believes he is paralysed and does not use his limbs and keeps falling.…
Here is a question from one of our members: My father is 89. He used to walk regularly twice a day and used a simple walking cane. But now he has had a few falls. Doctor says he must use a cane with 4 legs(quad cane) but he refuses to do that. Now…
When treatment started failing 66 year old Siew Ching, the family became divided into different camps. Some wanted her to stay in hospital so that she could receive maximal supportive care. Others wanted her to be discharged so she could go…
My 95 year old father lives with my sister. She takes very good care of him. Normally he is fine. Can manage most daily activities with some help. But he is sometimes very paranoid about domestic helpers coming into his room and trying to harm him…
We found a great list of tips (in the link below) to help ease the challenges of being a caregiver and help caregivers with self-care - take a look at this list and share with us if you have ever used any of these and how! The tips include:…
A lack of sleep or feeling tired is one of the biggest challenges that Caregivers face. Often times we have to wake up at night to check on our loved one, or we have trouble falling asleep because our mind is preoccupied. What are some of your…
As Caregivers we often take on a lot and can get exhausted. It is important to learn how to ask for help - maybe other family members, friends, or neighbors can help take on some tasks and make life a little easier for the Caregiver. For many of us…
My MIL is a little bit over weight @ 94, and is able to walk only with a walker very slowly.She is addicted to watching TV whether she understands anything or not, but cannot sit for a long time. WE give her TV time, once a day for 2 hours. For…
I recently came across a great article that spoke about the importance of sharing caregiving duties among family or siblings. Often, the caregving duties falls upon one sibling or family member, and  this can cause resentment or…

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