Sharing Experiences: Indian Caregivers

[In addition to the material on this page, you can also check a diverse and extensive set of "caregiver voices" at my new site. These are caregiver experiences drawn using interviews, blogs and sites, and news articles that describe caregiver experiences. Here are some links: Interviews with caregivers, volunteers and experts, From Indian blogs and sites, and Caregiving in the news.]

Here are some experiences, shared on various blogs and sites, which may be relevant to caregivers in India.

• From my blog
• From The Caregiver’s Foundation

Some selected entries from my blog

• On the never-ending stream of advice: In India, everyone is very quick with advice, whether or not they know anything about the topic. Many such advisors are well-meaning elders, and they expect to be “obeyed” and get offended if they are not. As a caregiver, I have often had to decide whether the advice was applicable, and also how to handle the person advising. I have shared my experience here.
• On wandering: Many dementia patients, disoriented about space and time, tend to wander out, but they do not know the way back home. In the USA, there are schemes specially intended for tracing such persons, but India does not have any systems for this. In this blog post, I discuss wandering, and share my experience and thoughts on it.
• A community helps: Describing how we caregivers can share experiences and help each other along, here. And here.
• Training the home-help. Awareness of dementia is low, and so home-help used to assist with a patient may assume the patient is being nasty when the patient gets angry/ upset. In this blog post, I share my experience and give suggestions on this.
• It is not always easy. Sometimes, on reading all those full-of-tips pages, caregivers may wonder whether they are the only caregivers who feel overwhelmed.  Here’s a blog post where I shared how frightening caregiving sometimes is.  Another on how some days go wrong. And one on the challenge of repeating behavior, a common behavior in dementia patient. Or the day when you just snap.
• Some days break your heart. Like the days when the loved-one is more coherent, and knows she is losing her memories, and says, why me?
• Finding fun in caregiving. Yes, it is possible. Here are a few posts where I share the enriching parts of caregiving (link-1, link-2,)
• Pacing your caregiving. An important part of caregiving is setting the pace emotionally, physically, mentally. Trying to do too much can result in stress and burnout, and who will look after the patient then? Something on pacing as a caregiver here. And on burnout.
• Growth as a caregiver. As a caregiver, I journeyed from a reluctant caregiver to an overwhelmed one, to one who found enjoyment in caring.  Some blog posts where I share this.
  • It is all very well to read about dementia; it is quite another thing to live with and support a patient with dementia, and understand what they are undergoing so that we can care for them. Here, in this blog post, is part of my learning curve as a caregivers.
  • Caregiving, like many tough things in life, can be seen as a five-stage process. My views here, and here.
• And oh, that loneliness, even if you are anyway an introvert Sometimes, it seems we are on a different planet. More about the isolation I have felt (and if you are feeling alone, you are not alone in feeling that   Then, there are the situations where you explain and people listen, but they don’t reallyregister.

From The Caregiver’s Foundation

The Caregiver’s Foundation is a support group for caregivers, set up by Ekta Hattangady.

Ekta was thrust into a caregiving role for her mother (an Alzheimer’s patient) at an age when most girls are handling adolescence problems and excitement. She was 13 when her mother (then 42 years old) was diagnosed as suffering from Alzheimer’s Disease. Her mother died after six years, and these six years of caregiving left Ekta with experiences that have stayed close to her heart. The deep empathy required, as well as the sense of overwhelm and loneliness have made Ekta determined to do something for care-givers. She uses The Caregiver’s Foundation to reach out to caregivers. Here are some links from her blog, and from The Caregiver’s Foundation.

• Why her Mom is like Iris Murdoch, a contemporary of her mother, also with Alzheimer’s. Click here.
• A beautiful, honest, heart-touching poem on caregiving: the caregiver’s song.
• About the emotional impact of her mother’s illness, and how a compassionate, loving lady helped her feel loved and valued by her support. Click here.
• Various stories from caregivers, sharing the joys, resentment, and guilt of caregiving, and dilemmas, such as when deciding between home care and institutionalization.

I would love to include more experiences here, related specifically to caregivers of dementia patients in India. If any of you know of something suitable, please contact me with the information.

[In addition to the material on this page, you can also check a diverse and extensive set of "caregiver voices" at my new site. These are caregiver experiences drawn using interviews, blogs and sites, and news articles that describe caregiver experiences. Here are some links: Interviews with caregivers, volunteers and experts, From Indian blogs and sites, and Caregiving in the news.]