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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  • FDA approval is great news for DMD community
    says RS Anand, parent of a child with Duchenne Muscular Dystrophy on the FDA approval of Emflaza (deflazacort). The U.S. Food and Drug Administration approved Emflaza (deflazacort) tablets and oral suspension to treat patients age 5 years and older with Duchenne muscular dystrophy (DMD), a rare genetic disorder that causes progressive muscle deterioration and weakness. Emflaza is a corticosteroid that works by decreasing inflammation and reducing the activity of the immune system.…
  • We need a Holistic Approach to Treating Cancer
    Susmita Mitra, Director - Special Projects at Cancer Patients Aid Association (CPAA), underlines the concerns and worries of cancer patients and emphasizes the importance of Psycho Oncology, a comparatively recent addition in cancer care, to build a positive frame of mind, ease trauma and facilitate recovery. It is well recognized that compared to any other disease, a diagnosis of cancer results in immense trauma to the patient on one hand, and his family members on the other, as they grapple…
  • Never Too Old to Sing
    The Choir of the Loaves and Fish, a musical ensemble of senior citizens, started by Pervin Varma with Regina Thomas in Bengaluru has been immensely therapeutic for the elderly and has helped bring loads of warmth and sunshine into their lives. Picture above: Ammachy taking a bow with Pervin Varma Imagine a group of people – all senior citizens between 65 and 96 – people who have suffered strokes or are living with cancer, arthritis, heart disease, dementia, physical disabilities, people with…
  • Mummy's Gift of Dying Well at 100
    With India’s ageing population increasing and the wish of most dying people to live their last few days happily at home, there is an urgent need to develop and expand palliative care in the country. Jo Chopra looks back on the fun her mother-in-law had at home before her final departure. A loved one dying at home is not a small thing. My own culture teaches us that people should die in hospitals (in a study some years ago in America, while 88% responding said they wanted to die at home, 56%…
  • Raising a Child with Autism to be Independent
    Parents of Vinamra, who has mild autism disorder, always made it a point to remember that their son can lead a happy, fulfilled life if they channelized his energies well. Mother Rima Ved recounts how she and her husband tirelessly prepared their son for adulthood and independence. My son, Vinamra, has autism. He is 21-year-old, all grown up, capable and independent today. But there was a time, nearly a decade ago, when I didn’t know how to raise him. I realized he was different from other kids…
  • Social Story Videos: Preparing Children with Autism for Outings
    Sometimes the routine activities like going to a restaurant or a dentist or a hair salon can seem daunting to a person with autism. Parents often do not know how to help their child navigate through these activities. Children with Autism are able to cope better with new and difficult social situations if they are prepared for it through video modelling. Social stories [TM] are a technique that was created by Carol Gray in 1991 to help teach social skills to people on the autism spectrum. They…
  • How to cope when your Spouse has Dementia
    Amrita Patil Pimpale, Dementia Care Consultant, lists out 5 things you can do to help your spouse/partner who has been recently diagnosed with dementia. Most people with dementia undergo behavioral changes during the course of the disease. They gradually lose their mental faculties and become confused and vulnerable. They tend to forget things that have happened quite recently, but may seem to have clear memory of things that happened a long time ago. They will experience mood changes, can…
  • Should Parents of Children with Autism Prepare a Will?
    Without a proper plan, your child with autism may face an uncertain future after you are gone. Chitra Iyer, Treasurer and Trustee, Forum for Autism, spells out reasons why it is absolutely necessary for parents to prepare a Will. While this may apply to various disabilities, the focus for this article is mainly on children with autism and keeps in mind the legal requirements in India. What if something were to happen to me tomorrow, how can I ensure that my child with Autism who is now an…
  • My Mother’s Hairdresser: Dementia friendly or not?
    A touching account of how a local hairdresser volunteered to help, when others refused, to give my mother, who lived with Young Onset Alzheimer's, a glam haircut and made her look uber cool in her final years.   They say it takes a village to raise a child. As caregivers, we realize that it takes an entire community to deal with Alzheimer’s. Extended family members, friends, neighbors, healthcare professionals, coworkers, employers, employees, service providers like household help,…
  • Promoting Accessibility through Inclusive Design
    The need to integrate inclusive design at our homes, schools, workplaces, malls, hospitals, parks, etc, especially to improve accessibility and mobility for the disabled, needs to be given urgent priority for the wellbeing of society, writes Daniel Wong, Access Consultant design professional. The world is experiencing a population boom never before seen in history. Birth rate is increasing while deathrate is slowing. People are living longer because of improved healthcare science particularly…
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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