Why I started this site: a personal note

I am Swapna Kishore, the person who has set up this site, Dementia Care Notes®.

This site is my contribution to create an India-specific resource for dementia caregivers. Most available dementia and caregiving information cannot be applied directly in the Indian context. We are a large country with many affected families. We need material suited to our culture, which discuss how we can support persons with dementia in our homes. So I have created this site with information, resources, and caregiver stories that can be used by caregivers in India.

My mother had dementia. I have been a dementia caregiver myself for well over a decade. I often felt alone during this time. I did not have resources or support. Persons around me did not understand my situation. They did not think I needed help. I faced several difficulties as I tried to understand and support my mother through her problems caused by dementia. My difficulties convinced me to start a site that could make life smoother for other caregivers.

My personal journey as a caregiver began when my mother began showing mild dementia symptoms. My mother noticed the changes in herself, too. She noticed the problems in her walking, her memory loss, disorientation, mood swings, and an overall feeling that something was wrong. She was unnerved enough to stop driving, though she enjoyed driving. She admitted she could do with help. We did not know it was dementia, but we tried to get help. We visited two specialists in neurology. They asked questions and conducted tests. Then they just said such problems happened to some people. It would probably worsen. They did not name the problem. They gave us no idea of what to expect or how to handle it.

Meanwhile, I began helping my mother whenever she was unable to do things. I now know that people like me become caregivers even before we know we are caregivers. That is, we are caregivers though we do not know that our loved ones have medical problems. We do not know that their condition will keep getting worse.

My mother got a formal diagnosis almost five years after she started showing the symptoms. The diagnosing doctor tried a few medications to reduce the symptoms. Those medications gave my mother hallucinations. He told me medicines do not help many of the patients, and that my best bet was to keep her as active as possible. “It will be difficult,” he said. He did not mention any support groups or books. I was left adrift with just that information. The care component began increasing, as did her “challenging behavior” and the criticism of neighbors.

Over the years, I bumbled through my care responsibility. I learned through trial and error. In  the beginning I often did not connect her changed behavior with the diagnosis. But then the reality of her dementia started sinking in. My expectations became more realistic.

I began blogging about my dementia caregiving experiences in 2008.  I wrote to sort out my thoughts, and for catharsis. I did not tell anyone I was blogging. Frankly, I expected no one to read my ramblings.

But people reached that blog and wrote back to thank me for sharing my experiences. Many caregivers said I’d echoed some of their experiences. Some described their own experiences. Some persons, just starting on their own caregiving journey, said that my blog helped them know what to expect. I was surprised by the reactions I got. It made me realize that though there are many caregiver-bloggers outside India, there are hardly any in India.

Awareness of dementia in India is poor. Acceptance of a caregiver’s role is even poorer. Families do not tell outsiders about the diagnosis or problems because they fear the person will be considered “mad”. Caregivers who talk of their fatigue are told not to complain, because what they are doing is just their “duty”. People see no difference between living with a normal elder and supporting someone with dementia. I faced a lot of criticism and isolation, and so did my mother. A neighbor would often scold my mother for not trying hard enough to remember things and remain independent. I found this very sad because this lady should have known better–her own mother had dementia.

The responses I got made me think about why my blog had helped people. More sharing and more information were definitely needed. So I decided to supplement my blogging by also writing about dementia and caregiving in India. I began volunteering for conducting dementia awareness programs and also for conducting programs for caregivers. Earlier, I had attended a few support group meetings to get tips. I now began going there to understand what other caregivers were experiencing and to share the tips I had gathered.

I’ve found that every person with dementia is different. Every caregiver’s experience is different. And yet, we also have enough things in common. We can use these to help each other. Caregivers can benefit when they hear about a range of care-related experience. It helps to know about the problems others have faced, the solutions that worked, and the experiments that failed.

To create Dementia Care Notes, I structured all I knew and read all I could. I wanted a comprehensive resource of the sort that would have helped me in when I was unaware of dementia and the required care.

Dementia Care Notes contains information relevant for dementia home care. It is specially meant for caregivers doing dementia home care in India. All material on this site is presented from a dementia caregiver’s perspective. It puts together what I have gathered from all my reading and my interactions with hundreds of caregivers. Though the site is designed for Indians, it may be useful to caregivers from any country, especially developing countries with similar cultures. I have also included multiple caregiver experiences in the form of detailed interviews I conducted, and selected links to articles and blogs.

I maintain the site regularly. I incorporate additional tips and information that are relevant. For example, I enhance the discussions on various topics to add new ideas on caregiving from across the world, to the extent they could be helpful in India. My mother passed away in March 2012, but my commitment to share whatever I know continues. This site is one major way I continue my commitment.

I also continue blogging about my personal experiences as a caregiver and a volunteer on my blog, have a Hindi version of this site, and maintain youtube channels with English and Hindi videos. My involvement in dementia care is explained at this link.)

Dementia Care Notes is not a medical site. It is not an authoritative site put out by some NGO or organization. There is no organization or team behind it. All the content here is solely my effort — the effort of one individual. I do all the work. I fund it all myself. I welcome suggestions on content and links, though. Please do contact me if you have some ideas. Meanwhile, I continue to add material to the site at my pace, hoping it helps to make dementia care a more informed and less lonely a journey for some caregivers.

Onwards…

Swapna Kishore

Blog: http://swapnawrites.wordpress.com

Personal Site: http://swapnawrites.com

[This page was last updated in July 2015]