Caregiver Community

  • Caregiver Community
    2310 member(s)

    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.

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  • Image description: Pratyush a young dark haired Indian man in a white t-shirt in the centre with his mom on the left in a white top taking the selfie and his spectacled father on the right in a grey shirt
    People Started Looking Beyond His Disability
    Wheelchair user computer whiz Pratyush, 24, born with Spinal Muscular Atrophy, excelled at prestigious institutes like IIT Bombay and Columbia University, and recently got a job at Microsoft. His mother Srilakshmi Nalam talks of overcoming depression and taking on the mission to make Pratyush an independent and self-confident person. On September 14, 1993 our little son was born. Giving birth to a new life is an amazing experience. It is the beginning of a great adventure full of surprises and…
  • Aarshia on the left a young Indian black haired spectacled girl with Down Syndrome in a purple dress and on the right her brother Aaryamann a young Indian teen boy with black hair in a purple kurta and white pyjamas
    No Special Favours For This Sister!
    As part of our Raksha Bandhan series, Aaryamann and Aarshia share nuggets of what makes their sibling relationship as special and adorable as any other brother-sister relationship.  Aarshia,11 is a sprightly young girl who has also starred in an Indo-Australian film on Down Syndrome, directed by Onir  "Raising The Bar"  Aaryamann, 16  is a football and math enthusiast. In spite of being a brother of a girl with special needs, he doesn't give her any special privileges…
  • Image Description: Nivriti on the right in a white kurta and red dupatta tying a rakhi on her autistic brother Nishant's wrist. Nishant is sitting and wearing a blue kurta. Looking over both of them is their father in a mustard kurta and grandmother in a blue sari
    "Don't Worry ....Be Cool"
    is the brotherly advice from Nishant to Nivriti. As part of the Raksha Bandhan series, the brother-sister duo of Nishant, a young autistic adult and Nivriti share what their relationship means to them  Nishant Sriram, 22 is an intern at AMAZE, he likes nature, music and travel. He is a bronze medalist in cycling at the Special Olympics Bharat. Nivriti Sriram, 17 is in Grade 12 and is a voracious reader. She loves animals, music and travel. Both love food and cooking and baking. Akila…
  • Image description: On the left is Pranav an autistic young man in a red shirt, black hair and on the right is his older sister in a black dress talking of their relationship as siblings
    "I Told Ma To Cut The Rakhi Because I Thought It Was Hurting"
    As part of our Raksha Bandhan series, Pranav, 18, a young adult on the autism spectrum and his older sister Nikita, 22 reflect on their relationship and their times together - the fun times and the stressful times.  Nikita studied at Hindu College, Delhi University. She is pursuing Masters in Public Health in Sydney and plans a career in mental health and counselling. Pranav is pursuing a multimedia course with AIMS. He plays golf, loves music and is a Radio One fan. An award winning…
  • Image Description: An elderly person with a walker and supported by a caregiver
    12 Confusing and Overlapping Symptoms in the Elderly
    Symptoms like weight loss, memory loss, weakness, and fatigue should not be mistaken as a sign of the"normal aging" process. Dr. Shital Patel explains 12 common but misleading symptoms in the elderly and why you should seek a doctor's opinion instead of ignoring them.  Symptoms in the elderly can have very different causes than they may have in a young person. Many symptoms in the geriatric population may be masked by concurrent chronic ailments, injuries, age-related physiological…
  • Image: Black and white pic of Marianne's parents as a young couple - mom on the left and dad on the right
    Parkinson’s Robbed Their Soul And Spirit
    Marianne de Nazareth recounts how traumatic it has been to see both her parents suffer from Parkinson’s and how the progressive disease strips the dignity of the individual. Parkinson’s is an old disease in our house. Both my Dad and Mom were afflicted with it, unfortunately.  My Dad was ravaged by it first, and now it is after my Mom. It has been tormenting our family for nearly three decades now. My father, Anthony Michael Furtado, got Parkinson’s in his mid-50s. We started noticing a…
  • To Continue Loving my Son, I Need to be Brave
    Alpana Sharma, mother of 6 year old Aarav, who has Spinal Muscular Atrophy, a rare neuromuscular disorder that leads to progressive loss of muscle control and muscle movement, is doing everything she possibly can to save her son. Read her spirited story. The birth of our son ‘Aarav’ filled our lives with happiness and joy that only a mother's heart can hold. Like any first time parents, Aarav's every new milestone - his smile or his waving hands - was a marvel. It was a pleasure just watching…
  • The I Support Foundation
    Helping Restaurants Welcome Persons With Disabilities
    I Support Foundation tries to make cafes and restaurant visits a hurdle-free experience for families of persons with disabilities. We speak to co-founder Juhi Ramani on how they are going about it. This initiative is to create awareness and provide hassle free service to persons with disabilities. We, the I Support Foundation (NGO), started this initiative for achieving universal accessibility that will enable persons with disabilities to gain access for equal opportunity and live independently…
  • On the left an Indian woman in a pink dress and white scarf who was over weight and on the right a trimmer version woman in a white and yellow top and black pants
    I Walk with Hand-Weights to Lose Weight and Build Health
    Kavita Behl, 53, who was diagnosed with high levels of uric acid causing excruciating pain and swelling in her feet, got back her health with a strict walking regimen and disciplined diet. Her mantra now - Be positive and Keep walking.  My problems started two years back in May 2016. I had developed swelling and pain in both my ankles and feet. The pain was so acute that I was not able to put my feet down. I had to go to a doctor. After a series of tests, I was detected with high levels of…
  • Hippocratic: 18 Experiments in Gently Shaking the World
    "Hippocratic: 18 Experiments in Gently Shaking the World" is a documentary movie that chronicles the journey of Dr M. R. Rajagopal, founder chairman of Pallium India and his initiation into the field of Palliative Care.  A film synopsis and review by Dr. Shital Raval. Released in 2017, the movie is based on 18 experiments or quotes by Mahatma Gandhi who happens to be his inspiration and guide. Founder chairman of Pallium India, Padma Shri award winner and lovingly called the “father of…
Patient not discharged from ICU despite repeated requests
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…
Counsellor in Ahmedabad
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.…
Walking with quad cane assistance
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…
A family torn apart by illness
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
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…
Tips for Caregivers
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:…
Sleep - A big challenge for Caregivers
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…
How do you ask for help?
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…
Restlessness in semi mobile senior
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…
Sharing Caregiving Duties Among Siblings or Family
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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