Awareness about dementia is very poor in India, and there is a lot of stigma attached to dementia. Caregivers are unable to speak about their experiences and problems, or share tips and suggestions, as this is often taken as “complaining” or “excuses to avoid duty.” Because of this, caregivers are unable to learn from each other’s experiences and find themselves alone and isolated. Many never get to know that there are others facing similar problems. They do not get to know of the simple yet effective caregiving techniques that can provide relief to them and the patients.
While some help is available through books and websites on dementia care, often caregivers in India are unable to relate to situations described in them because of social and cultural gaps. They find it useful to also share experiences of other caregivers in India.
As many caregivers hesitate to speak up, I have gathered together a diverse and extensive set of “caregiver voices” at my Dementia Care Notes website, as caregiver experiences drawn using interviews, blogs and sites, and news articles: Interviews with caregivers, volunteers and experts, From Indian blogs and sites, and Caregiving in the news.]
Being a blogger myself, I have also blogged extensively about my personal experiences as a dementia caregiver; my blog has well over 150 entries. Below is a selection by topic of some entries (but do visit the blog to see the more recent entries):
- 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 really register.
Another person who has blogged about caregiving is Ekta Hattangady of The Caregiver’s Foundation. She also set up The Caregiver’s Foundation as a support group for caregivers. A selection from this site:
- 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.
