Caregiver Community

  • Caregiver Community
    2313 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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  • Never let the patient know how you feel
    Rajalakshmi Siva, caregiver of a person with cancer and co-author of 'When Thoughts Invade the Cancer Conqueror’, recounts her days of a caregiver and how she coped with it right through the ordeal. What started the journey to hell and back was a pool of blood with a few drops of urine trailing him all the way up the driveway, to the parking lot, into the lift, and into the house and thence to the washroom. It was reminiscent of a silent scream that seemed to reverberate: Hell is empty and all…
  • Coping with Difficult Dementia Behaviours
    The most effective way to manage difficult behaviours in dementia and keep stress at bay for family, friends and caregivers is acceptance, patience and calmness, recommends Porrselvi A.P. a cognitive and psychosocial interventions specialist. Many people with dementia undergo changes in behaviour during the course of the disease. These changes are unexpected, awkward, difficult to understand and are termed problem or deviant behaviour.  These sudden behavioural changes can be challenging…
  • Healthy ways to gain weight
    Believe it or not people who are thin and underweight are not always healthy and free of illness. They can struggle to put on weight. Our nutritionist Kohila Govindaraju shares tips on healthy meal plan to gain weight. This is also important as people age and lose weight. Being lean sounds great, but being underweight because of poor nutrition doesn't sound healthy at all. Being underweight, you are more likely to pick up infections, a lack of vitamins and minerals will hinder your growth if…
  • Dementia Friendly Communities are essential to offer societal support to those affected
    Dr Sudhir Kumar, a consultant with specialisation in old age psychiatry and neuropsychiatric disorders discusses his views on the importance of Dementia Friendly Communities (DFCs) and how India needs to work more towards it Dementia-friendly communities help people with dementia feel included and supported in the day to day surrounding – the places they work, live and play  A dementia-friendly community focuses on spreading awareness about dementia and providing a safe and supportive…
  • Review of Current Principles for Quality of Life for people with Multiple Sclerosis
    Multiple Sclerosis International Federation, (MSIF) London is reviewing the current principles, which determine the “Quality of Life” of persons who have MS. As part of the said consultative committee, a feedback as regards the same is being sought from MS persons around the World. MSSI is looking to consolidate the feedback. Join our discussion here.   The Current Principles   1. Independence and Empowerment People with MS are empowered as full participants in their communities and…
  • Forget Us Not Handbook in English and Mandarin
    PatientsEngage is happy to support 'Forget Us Not', a joint initiative by Lien Foundation and Khoo Teck Puat Hospital. They have put together this guide in English and Mandarin to help persons with dementia live dignified lives. This is part of the plan to build Dementia-Friendly Communities in Singapore. The 'Forget Us Not' initiative will foster a kampong spirit where we come together to help one another. The information and tools in this guide is only a first step. If you would like to do…
  • The Tough and Tender Caregiver
    Many caregivers feel guilty and think it is wrong to get tough with their loved ones, even if the intention is to help in the long run. Maya Ramachandran delves into the dilemma with a personal account. As caregivers, we are concerned about the health of our loved one. We assist with the care of/take care of our loved one, in the midst of many other responsibilities that we are required to fulfil. Sometimes, the patient is uncooperative or simply stubborn to a point of no return. What do we do…
  • Music Therapy in Dementia: How Effective is it?
    A look at how music tends to make life so much better for those suffering from dementia “Music has power for individuals with all types of dementias and it can spark convincing outcomes at any stage of the disease when used appropriately. For example, the type/choice or duration of music at each stage of the disease has to be taken into account”, says Nilanjana Maulik, Secretary General of ARDSI (Alzheimer’s and Related Disorders Society of India), Kolkata. Most people enjoy music, but can it…
  • Building Community Bridges for Parkinson’s
    There is much more to life for people affected with Parkinson’s disease than treatments and medications, believes Sudha Meiyappan, founder of Parivarthan, a community support group in Chennai that provides a safe platform to those diagnosed with Parkinson’s disorder. Shaik Mohideen Sahib returned to India couple of years ago after he retired as a Hindi teacher for 20 years in Muscat, Oman.  This was not his best time since his mother had recently passed away, he was …
  • Using Mindfulness and Awareness as a Tool towards Wellbeing
    The unquiet mind Can you be with this one breath, This moment, this now?  —Paul Salmon Mindfulness is defined by Jon Kabat-Zinn, founder of the Stress Reduction Clinic at the University of Massachusetts, as “the awareness that emerges through paying attention on purpose, in the present moment, and non-judgmentally to the unfolding of experience moment by moment.”1 This rests on the simple idea that sorrow or distress is caused by not living in the moment, or feeling bad…
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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