Seven months after mother’s death: updates and musings

It is seven months since my mother died, and I sometimes get queries on how I am doing, so I’m sharing an update.

My mother’s death meant I lost the person my life had been revolving around for the last several years. My sense of identity changed. My role, responsibility and activities needed a rethink. Given the sweeping change caused by her death, I think I’m handling my situation well enough.

I am living a reasonably active and productive life. While I have not firmly decided the way I will divide my time and energy across current and new activities, I am clearer now than I was some months ago. Redefining my life activities and directions will take more time, but that’s okay; I prefer to proceed cautiously and experiment with small changes, see what works, what doesn’t, and tweak things rather than do something dramatic and then have regrets.

I continue to face challenges on the emotional front, where my readjustment is slower. I continue to ponder over my new identity, my desires and my possible prioritizations. And, I also try to understand what “moving on” means. I tell myself that while a situation may change abruptly, the related habits and personal characteristics take time to change, and that well-set patterns have an implicit inertia.

My years of caregiving changed me in many ways. I am different in what I like to do, what I find important, what I am curious about or concerned about, what I feel about issues and incidents, what I want to buy or see, and so on. Some of my earlier friends now have life direction, interests, and priorities that are very different from mine, and there may not be enough commonalities to resume friendship. Our paths have diverged, and I am not much in touch with them. I am trying to make new friends, but my somewhat introvert nature makes that tough.

Seeing my mother’s decline and staying emotionally close and connected through the process, is helpful in the process of closure, but even now, not a day passes when I don’t think of her or miss her in a gentle way. And there is a sense of loss I experience when I see how she spent her last several years alongside how her peer group is faring.

In the past few months after her death, I have met my mother’s friends and peers, many of them after several years. They ask me about her last few years, or start telling me stories from their shared past. And they bring back memories of a mother who was younger and more active. As I talk to these friends of my mother, I notice how, though they are my mother’s contemporaries, they are physically active and cognitively sharp. I become acutely aware of what my mother could have been like without her dementia, and how different our interactions would have been. It hurts.

It will take time to find my new equilibrium of friends and interests and to find my peace with the overall loss. I also know this will need effort on my part, and this is what people call “moving on.”

But what is “moving on?”

I sometimes have people advising me that I should not think of the past and “move on” and forget what happened because now I am “free.”

I find that approach strange and unacceptable. It assumes that my life was a black hole when I was a caregiver, and that is not true. My years as a caregiver are an integral part of my life. They had their ups and downs, like any other phase of life has. The years involved work, responsibility, and tension. They also gave me the fulfillment of staying emotionally connected to my mother, they taught me many things about life, identity, joy. They changed my perspective about what matters and what does not, what dignity is, what connection is, and so on.

As far as I understand, “moving on” is something that happens all the time, for everyone. I think any “moving on” can be robust and wholesome only if it involves resolution and peace and consolidation of lessons learned. It cannot be achieved by amnesia or denial or pushing the past under the carpet.

Anyway, I have started consolidating my dementia care thoughts and my experience sharing, hoping that sharing and structuring will help me neaten my mind and perhaps help others. As part of this, here’s one e-interview (A Caregiver’s Role) and below is a video where I share my late stage dementia care experience. (You can also view it directly on youtube here.)

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Creating online dementia care material in Hindi: my experience so far

For the last few months I have been making Hindi material for supporting dementia care and uploading the material to make it available online. Here’s a short blog entry on my experience so far.

The background: Over a year ago I started worrying about the paucity of online (and print) material in Indian languages for dementia caregivers. This “worry” was active enough for me to wonder what I could do about the lack of material. My concern was spurred after someone in Madhya Pradesh contacted me – he was using Internet on his mobile and wanted material in Hindi so that he and his family could better support an early-onset dementia patient. I helped him through phone calls and by sending across some material I had. However, I felt concerned about how difficult things must be for someone like him who wanted support. Around July/ August last year I started exploring options for creating Hindi material myself. A few months later I made my first Hindi video and placed it on youtube, and in December I shared my thoughts and experiments in a 4-part blog entry (For part 1 of this series, click here: Adventures in Hindi Part 1).

Creating material in Hindi was not easy work. I did not have conventions to follow about the type of Hindi and the way dementia is explained in Hindi; I had to base my decisions on approach and style on the experience I’d had providing help in Hindi over the phone and in person, and, of course, my instinct as a caregiver and a volunteer. Typing posed its own challenges, as typing in Hindi is done using transliteration, so one has to remain alert about when this transliteration messes up spellings. Plus, of course, my Hindi needed brushing up.

One more deterrent was knowing that creating online material in Hindi was essentially a gamble. I knew people checked online for cricket scores and gossip about superstars in Hindi, but I had no idea whether people were looking online for information on dementia in Hindi. Even if there were such people, I had no idea how to let them know about my site so that they could check it out for at least some pointers to help them.

But I can be stubborn when I want to, and so once I decided to try my hand at it, I continued to create and upload stuff in Hindi, let some people know, and leave the rest to word-of-mouth, google, cross-links….

Here’s the current status of my Hindi work online: I have created a full-fledged website in Hindi on dementia care (Dementia Hindi ) and also uploaded four videos on youtube on wandering, helping patients with daily activities, communication, and understanding the relationship between dementia and Alzheimer’s (they are also combined into a convenient playlist: click here: Playlist: Hindi dementia/ care uploads). My latest video, on dementia and communication, was uploaded just a few weeks ago. Here it is:

So, what’s been my experience so far?

I’m relieved (and happy) to say that people have been visiting the Hindi website and viewing the videos. Not in droves, no, but enough for me to feel that the effort was worth it. Especially so as some visitors are from far-away cities I have no contacts in, such as Jamshedpur, Lucknow, and Indore in addition to the expected Delhi and Mumbai. Not all visitors are from India, interestingly, and apart from places like the USA and UK, I’ve also had visitors from the Nepal, Qatar, UAE and others 🙂 Some persons have even contacted me using the contact form, sending their queries in Hindi (typed using Roman script). (I responded the same way).

The videos have been viewed, too. Anyone who has checked out youtube for dementia information in Hindi would have noticed that available material (other than mine) is usually dubbed interviews, and some translated authoritative informational presentations. Overall, the list is so small it takes barely a couple of screens. So when I uploaded my videos, I had no clue whether anyone would even reach them. But of my 4 videos, 3 have been up for some months, and each of them has a viewership of over 200. Is that good enough? Is it bad? What number does one compare it with?

It is not as if there is a wide choice of Hindi material and I have a baseline to compare it with 😦

The way I see it is, this viewership is encouraging enough for me. It is far more, incidentally, than zero, which is what my viewership would have been if I had not put up the videos. Even without any direct touch with people/ publicity, even without press releases and conferences declaring the presence of this material, people reached it and read/ viewed it. And hopefully benefitted…

The beauty of online material is that once it is up and available, it remains available without additional effort, and so more and more people can view it as and when they become aware of it or get a link or locate it in a search.

My summary so far is that yes, there seem to be persons who will read material or view videos in Hindi (and possibly other Indian languages) if these were made available. I think catering to this potential audience is just not being taken as seriously as it deserves.

I’d also like to share that I sometimes meet volunteers in India who feel that there is already enough online material on dementia care and nothing more needs to be done on this front. These volunteers are often part of forums where they regularly exchange links to the same articles, recommending them to each other (not always reading them, but assuming others would benefit by doing so).

I feel these people haven’t considered a number of aspects. For example, they may not have considered whether the available material is:

  • understandable and usable by audiences in India (fitting into the cultural context)
  • in languages that people can read/ understand )
  • with links in forums such people can access )
  • accessible on the type of online platforms such audiences use )
  • accessible to people not in metros )
  • accessible to people who don’t have online access/ find it expensive)

I could expand the list into a much longer one, but I’m sure you get the point 🙂

I remember a comment one person made after he read some of the standard caregiver material he’d downloaded from one non-Indian site; he said he’d shown it to his family but they discarded it because the persons it showed were not Indians and the houses they showed were not middle-class Indian and the methods they described were not directly usable in India. (Like bathing tips that assume baths in tubs, I suspect) “We are not like these people; their ways won’t work for us,” he told me. His comment reinforced my impression that a good caregiver manual written by an Alzheimer’s support organization in some other country cannot always be used directly by all sections of people in India.

So, in my opinion, there is not enough suitable material in India given the diversity of our people, the sheer number of languages, the geographical and economic spread, the enormous awareness gap to bridge and what not. The gap between what is needed and what is available seems huge to me.

And here is my request to you, whether you are a volunteer or a caregiver who has experiences to share: if you are comfortable enough to create material in an Indian language — whether just talking of your experience, or sharing some structured material or some data — please do consider it. The online space is open and waiting for you.

Maybe the material you create or the video you make will not go viral. There may be no award to be won. There may be no appreciation/ brownie points from peers. But the one person who reaches your material could be someone whose life will be made different by reading or hearing what you have to say.

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Resources for dementia care volunteers now available online

In January this year, during my blogfest, one work area I identified was: Design a simple and structured way for dementia care volunteers in India to access relevant documents and resources created by me without their needing to contact me..

Over these past few years, while trying to help other caregivers and during my interactions with like-minded volunteers/ caregivers, I have  been preparing various documents and wishlists; I have always shared these openly with anyone who contacted me and seemed interested. These persons could use the ideas and information that helped, and ignore the rest. They could also give me feedback that I could use to improve the documents.

Around December last year, I realized that my existing modality of sharing was not sturdy and effective because it depended on chance contacts and was time-intensive. I must also admit that, being a social recluse, I am intimidated at the very thought of scaling up my availability for person-to-person contact.

I finally created a special section aimed specifically at sharing resources with volunteers working in dementia care in India: Resources for volunteers helping caregivers.

Here’s my intention: whenever I create a document that I think could be of use to other volunteers, I will add it to this section, either in an existing page of the section, or by creating a new page. This could be a wishlist of areas that need work, a document explaining dementia home care in India, or a document with my ideas on how to actually provide a service. Whenever I create a blog entry that is specifically relevant (in my opinion) to volunteers (and is not just a hodgepodge of ideas) I will add a link to the appropriate page in this section. I am leaving comments open for people to add their feedback or other links they find useful.

This section contains my views, opinions, documents. I am not an expert in any way, not even someone with an NGO or a trust or any qualifications as a volunteer. I am just a caregiver who developed a commitment to help other caregivers. I am just someone trying to do whatever I can, and share whatever I think and do, as honestly as I dare to. I undertake no implicit or explicit guarantees that the documents I am sharing are relevant or will help; I am creating this section because I strongly felt I need a space for such document sharing. How others use them is for them to see. Of course, I welcome feedback.

Take, for example, the setting up of support groups for caregivers. We so desperately need such groups. Around the middle of last year, I had drafted a document for creating caregiver support groups for a volunteer body, and then, a few months later, amended that to fit “dementia” caregiver groups for another person keen to set up a group. I know of at least three other persons who have wondered whether they can set up a support group, and what would be involved. There may be many more persons thinking of this. Now, the draft document I have created is available for anyone to read and use as fit, send me feedback, whatever. If someone sends me more ideas, I’ll amend the draft as suitable.

The section is intended for volunteers who want to equip themselves to understand and help dementia caregivers in India, and includes discussions on the status of dementia care in India and the impact of culture and context.

Pleave have a look or share the link with anyone who you think may be interested. Thank you!

[And that’s one item off my to-do list 🙂 ]

(Edited in February 2013: When this post was written, the resource section had been created on my personal site. I have now shifted the section to this blog as part of a consolidation exercise, so that all my experience and opinion-sharing related to dementia is now at one location. The links in the post have been corrected to reflect the correct links)

Edited in 2014 to add: The current pages in this section are as listed below:

Resources: If you want to help caregivers/ spread dementia awareness

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Sharing my personal experiences and thoughts on youtube

Whenever a caregiver says he or she wants to do something about dementia care, my standard suggestion is that they share their experience, not just the rosy parts, but the challenges. Often such sharing is difficult when one has moved on and found one’s caregiving pace and peace; it opens wounds, painful memories one would rather set aside, but there are persons who would benefit by knowing that they are not alone in their agony phase, and that it is possible to come out of it. So I suggest talking, blogging, putting up stuff on Youtube.

So when, a few days ago, I chanced upon a recording of an interview I’d give in June 2009, I figured I should do something about sharing it. I’m already used to sharing my caregiver experiences through my blog, through face-to-face caregiver sharing sessions, through newspaper interviews.

But this was a video recording, and it was almost three years old, and as I struggled to figure out format conversions, and added “question” slides and other stuff to edit it and structure it and make it youtube-ready, I found myself strangely moved, to a point I was paralyzed by grief for some hours.

You see, in this interview, I’d been at the best phase of my caregiving. My mother clearly enjoyed my company, the attendant looking after her was affectionate and competent, and although I had made a lot of compromises in the rest of my life to provide my mother what I call an “empowering” environment, they all seemed so worth it.

In one segment of the interview, I even commented on how my mother’s dementia was not progressing much.
This was June 2009, yeah.

And just four months later after some physical decline in walking and some other setbacks, my mother was bedridden. By October 2009, my mother was completely bedridden, unable to get up for anything (and yes, that means not getting up even to go to the toilet).

I sounded so happy with the current state in the interview. Trying to edit it and collate it was an intense reminder, and it hurt to remember those days. I was suddenly missing those story-telling sessions, those games. But life moves on, and I guess one should grab one’s happiness when it happens, because I’m not sure one can ever say how rapidly the situation may decline. My mother’s just recovering from one bout of chest congestion, she continues to sleep bulk of the time, and it is only very seldom that she shows any cognizance about my touch or voice.

Ah well. Anyway, here it is, 14 minutes of a time capsule. (This was recorded in the days when I was just starting to get active as a volunteer and as someone talking about awareness and all that) :

(if the player does not load, visit this youtube link directly)

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Hindi website for dementia caregivers in India (40+ pages): an announcement

This blog entry is to share that I have created a 40+ page Hindi website for caregivers of dementia patients in India. Below, I explain the scope and purpose of the site and put forth my request to all blog readers.

The website:

The site is at Topics covered include dementia, caregiving for persons with dementia, related resources available, videos, interviews, and contact information. Everything on the site addresses the caregiver, keeping in mind what a dementia caregiver (as per my understanding) may need to know, or what may help a caregiver. The cultural context is India, and so the examples and the assumptions of system/ social support are based on what is found in India.

The material is written in conversational, normal Hindi (Sanskritized words have been avoided). There are pictures and cartoons, with blurbs in Hindi. As most available online material is in English, many of the referred links to go English sites, but I have also given links to all online Hindi material on dementia/ care that I am aware of (which is pathetically low, and therefore I created this site). The material is a loose (not exact) translation of the English site, Dementia Care Notes, and has a more Indian idiomatic flavour which is possible because it is in Hindi.

The purpose:

As I am not aware of any extensive Hindi site on such a topic, my attempt in creating this site is to break out of the chicken-egg situation of demand-supply related to Hindi sites. People don’t create sites because no one visits them, and people do not look for them because there are none…that is the sort of problem I have tried to step out of.

The site is created:

  • For people who prefer to read in Hindi
  • For people who prefer English but need to show family members stuff written in Hindi (they can print the pages/ show them online)
  • For volunteers who are too busy to/ unable to support caregivers who need support in Hindi (they can pass the link/ print the pages)
  • For volunteers who want to prepare material in Hindi (they can contact me so that we can work out how they can use this material as input)
  • For myself, as a starting point for more work I may do in Hindi (like preparing videos)
  • To provide an online presence in Hindi that may make a Hindi-speaking caregiver approach me for help, – with the confidence that they can talk to me in Hindi
  • For the curious who may surf by and read the site/ use it to reach other online material available in Hindi

Future Plans:

These are not ambitious, and consist of:

  • In an on-going way, responding to anyone who contacts me through this site
  • Accepting and processing any suggestions/ corrections based on my time and energy levels
  • Updating the site for more Hindi material I may prepare (prepared as per my time and energy levels)
  • Updating the site to provide links to other material in Hindi that may be available or accessible

My Request to You:

Please spread the word about this site.

I sometimes get emails asking me, “Can I pass on this link to someone I know?” and I’d like to state it clearly that the very purpose of creating such a site is that it should reach people who may be helped by it, so please, please spread the word; you do not need to ask me to pass the link around. There are many people in India who are not all that comfortable with English (though they may not say so), and would prefer material in Hindi if they could get it. Please share this link also with people who may get helped, with people who may know people who may get helped, with people who may know people who may know people who need help…you get the picture.

Social media shares are good. But social media shares last just till the next bunch of tweets and status updates fill up a couple of scroll-downs, so please also consider adding the link to your blog/ site if you think it could help, if you think it fits…

As far as I know, there are no established conventions for how people locate Hindi material on the web. Different people use different ways, and most assume there will be no material. Searches don’t work that well, most people do not use Hindi transliteration on their computers, the Hindi aggregator sites (that were supposed to collate information on Hindi websites) keep going defunct.

So the only way I know to spread the word is “word of mouth” or “word of mouse”. Have a look at the site, and if you think it suitable, please spread the word.

Please help me by giving me any more information you have on online Hindi material on dementia care. I will check it out, and include it as suitable.

Please help me out through feedback on the site, especially any awkward sentences you note, any place where the language is not conversational enough, or there are spelling mistakes. And, of course, other suggestions. I am not an expert, and I have done this alone, and I would appreciate your input.

At the end:

There is, of course, stuff I’d love to share about how I got into this, why, and how I finally got over my diffidence and took the steps needed to create this site, but they are probably worth an entry of their own and that can wait.

For now, let me just end this post by reiterating: The website is now a complete unit, with 40+ pages, aiming at helping caregivers of dementia patients in India. It is before you. Please consider the site announced. If you have the time and energy, please have a look.

If you see any mistakes, or if you have any suggestions, please, please let me know. The beauty of online work is that it can be changed, improved. Email me or use my contact form (both available at the contact page). I did this work alone, but now it is out there, and I am not alone. I welcome comments.

If you think the site could help someone, please help spread the word. Mention it wherever you see fit–social media (Facebook, twitter, whatever), your blog or site. If you think it can help anyone, please use “word of mouth”, “word of mouse”, whatever.

Thank you.

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Forcing caregivers into a one-dimensional care role

While it takes time for people around a dementia family to accept that dementia is being caused by a disease, an interesting (read: sad) effect is that when people accept the importance of the caregiver role, many also assume that the primary caregiver’s life should revolve around care, and that he she should not and cannot do anything too different from caregiving.

To explain what I mean, let me share some things I have been asked/ told when seen outside home by people who knew my mother had dementia:

  • Oh, you are here, but what about your Amma? Is she alone? Who is with her? Who is taking care of her?
  • I know you have offered to help me, but I don’t want you to neglect your Amma to do my work.
  • I don’t understand how you can go out when your mother is so unwell. You should be with Auntie.

Typically, these statements come from persons who do not know my mother at all/ have never met her, and to whom I have explained the care arrangements around my mother umpteen times and so they know that I spend quite a bit of time with my mother. But that’s not enough for these caregiving purists.

Though I remain polite when subjected to such statements, I do feel unhappy at such comments. Read the full post here

Reducing caregiver isolation, working from home, using coworking

Recently, I shared my own experience of isolation and loss of social skills as I became more and more occupied with caregiving, and then I suggested that caregivers be alert about this possibility and guard against it. A few days later, I happened to talk to a caregiver and she described what she planned to remain connected to people even when she worked from home. I asked her whether I can share her idea, and she not only agreed, she even said that such sharing helps people and she also may pick up ideas if others share their ideas (hint, hint, to any of you who has ideas) 🙂

Anyway, so this caregiver looks after a dependent parent who has dementia and is immobile, but can be safely left alone for a few hours. The caregiver works from home, executing freelance assignments that she does on her computer and emails. She was once very active socially and her enforced seclusion dampens her spirit, so here is what she is considering:

This caregiver has an “office room” to work from. Now she will add some tables and chairs to this room to make it suitable for multiple users. She will then invite friends who work from home to use her office room as their offices. Each person will work on her own assignments while sharing the same office space and in the companionable presence of others, so that they all feel like working more and don’t succumb to distractions or feel lonely. The caregiver plans to put out flasks of tea or coffee (for which she may ask her friends to pool money, or maybe not, she hasn’t decided).

Read the full post here

Wasted resources, missed out roles

When I was sixteen years old, I got admission in an engineering college and ended up joining a class where I was the only female. This was back when people did not even know that women were “allowed” to become engineers, and just about everybody who talked to me about it was critical about my “wasting” a seat that a boy could have taken and become an engineer (all except fellow female batch-mates and my parents and a few of their very close friends).

Relatives told me the course would be too tough. One cousin who was studying engineering told me that I would never be able to do “workshop”. And just about everyone told me I was wasting a seat, I was wasting the nation’s money, the taxpayer’s money, because after all I was a woman and I would never take up a job, and even if I could, I would leave it for my “family” later, and for bringing up my kids. I was told again and again that I should quit the seat so that a “deserving” boy could become an engineer instead.

In my class I encountered two species of classmates; one, the silent ones who never said anything, so I never knew whether they were hostile about me or just cowed down by the second species, and two, the hostile ones who reminded me that being a female I was incompetent and also wasting a seat.

Now I can use this post to write about many things that have happened since.

I could write about how many of my engineer classmates went on to sell soap and colas or read balance sheets in banks, careers which possibly don’t need knowledge of Fourier Transforms or resistor color codes. Or I could point out that many chose to be part of the “brain drain” in the days when leaving the country was considered unpatriotic (but of course, now pravasi bharatiyas welcomed back open-armed, because times do change, and society does become more mature and open). Then again, amusingly, some ex-classmates are sending their daughters to IIT coaching classes, and I doubt if they remember how hostile they were towards the female engineers when they were students.

Hey, I could even write about how unfair it felt at “sweet” sixteen to be viewed as a potential housewife (housewives became “homemakers” decades later) and a potential mother and not as someone able to contribute using the brain. It also induced suffocation about my future.

But strangely, it is another angle that strikes me when I look anew at the past.

What strikes me now is that, in all those comments about how I would give up my job when I had a child to bring up, people were clearly recognizing child-rearing as a task that needs intense work and attention.

But no one talked that way about the intense work and attention that goes into tending to humans at the other end of the life curve.

No one ever told me, for example, that I would be wasting national taxpayer money when I quit my job to tend my parents. No one said, you will end up doing so when you are at the peak of your career, young enough to be productive, yet experienced enough to really add value to the field you are in, so everything everyone has invested in you will go waste. No one recognized the elder care work, the role, the criticality of the role.

I wonder why.

Again and again, I am puzzled at how a society that prides itself on its respect for elders and the need for families to rally for their care does not register that if such care has to be given, it has to be planned for, factored into life choices, and so on.

Read the full post here

Priorities and scope of care

A few weeks ago, I had a long phone chat with a caregiver that confirmed what I suspected: some caregivers feel that persons around them only keep thinking of what more the caregivers can do for the patient, without sparing a thought for the wellbeing of the caregiver.

This caregiver, let me call him/ her Emm, is handling fulltime support of a parent with dementia, alongside the responsibility of running the home and earning the money to do so. When Emm first contacted me, the parent (who had several medical problems) had not yet been diagnosed with dementia, but Emm had chanced upon my website and realized that the parent’s behavioral oddities could indicate dementia. Over several long calls, we discussed multiple aspects of caregiving and future planning. A formal diagnosis was obtained after a few months, and Emm’s self-education on dementia proved helpful in extracting more support from the consulting doctors than they were voluntarily offering. Emm also joined multiple forums to connect with volunteers and caregivers. Caregiving has subsequently stabilized.

In our last catch-up-and-chat call, Emm expressed disinterest in discussing dementia or knowing more about it. “I do not want to think about dementia” were the exact words. The parent was stable, seemingly content, clean, fed, with all medical checkups up-to-date. Emm wanted to use this stable period to work hard and build savings. Having already read up enough on dementia, Emm was confident about being able to recognize if the symptoms were worsening, and would contact me or others for help at that stage. “I hope you don’t mind if I don’t like to talk about dementia,” Emm told me.

I’m not exactly fond of talking about dementia myself, I said 🙂

Read the full post here

The caregiver learning curve

Many persons (who understand dementia) advise caregivers to be calm and loving and to never argue with patients. It is good advice, but these advisors then expect the listening caregivers to see the wisdom of the advice and change immediately. They forget that their suggestions require the caregiver to change habits built across years, and also involves the caregiver going through a very hurtful emotional acceptance about a family member who now has dementia.

Some habits are required to cope with the situations and people around us, and are deeply ingrained in us.

Suppose I go to a shop and buy something, and after I have paid, the shopkeeper demands money again. Will I opt for humor, distraction, cajoling, agreeing with him, and paying again? Or will I explain and then (if that does not work) argue?

Suppose I have spent three hours cooking an elaborate dessert for my kid, and the kid has consumed it all. Then the kid claims she never got the dessert, is hungry, and has been starved. Will I agree that yes, I am mistaken? Will I argue? Will I feel no annoyance or frustration or anger? Then the kid goes and tells the neighbors the same thing, and they believe the kid. What will I do?

Or consider this. Suppose, two years ago, a relative visited us and while living with us suffered an infection serious enough to require hospitalization. As I am sitting with my husband and talking of a neighbor who has suffered the same type of infection, my husband claims he has never heard of such a disease. Will I mention the two-year-old episode or not? Okay, so I do. Now he claims there was no such visit, no such relative, no such hospitalization. Will I say, Of course, of course, you are right my dear, would you like some chamomile tea? Or will I start convincing him, giving cues, arguing, maybe fishing out an old diary as proof? Or even go to Wikipedia to show the listed symptoms to convince him I am right…

What I am say is that arguing, convincing, proving one’s point, and making sure others accept our memories as “the facts” is something most of us do all the time. Life would be extremely difficult if we did not do so. Not all of us sit cross-legged in the Himalayas.

These habits misfire when talking to dementia patients, but we still need them in other spheres of our life, as we have been doing to deal with stuff right from childhood.

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Understanding dementia home care in India

Almost one year ago, a very dedicated volunteer told me that though she tries her best to help home caregivers, she sometimes wonders whether she can ever understand them enough to help them. She had been facing problems with staff who would not understand what dementia was, and would quit at the smallest “difficult behavior”, and there were days she felt driven up a wall herself. She just couldn’t imagine living with and coping with a patient all the time, the way family caregivers did.

This volunteer told me that while she gave family caregivers what she felt was appropriate advice and hoped it helped, she felt diffident about it at times.

Being both a caregiver and a volunteer, I am often able to connect with the situation and challenges of home care, because even if I have not faced some of the problems others talk about (and boy, there is a wide range of problems out there), I can extend my experience to imagine it. This volunteer’s comment made me realize that perhaps I should do something about this gap of understanding that non-caregiver volunteers experience. I also realized that when some volunteers ended up sounding preachy, insensitive or critical, they may just be naïve and ignorant.

Anyone who has brought up kids would know the difference between handling a child 24 hours, through illness and tantrums and soiled clothes, as against playing with them or babysitting them for a few hours in a neighbor’s house. Things always look different in short, controlled situations from which one can opt out.

Most volunteers who advise home caregivers have never worked as attendants/ caregivers in a respite care on a 24 hour shift for a few days consecutively… Most have never had to stay awake day and night and clean a soiled person who is pushing them away and shouting at them in the middle of the night…(maybe volunteers should go through such experiences, though, it would make them so much more effective as advisors)

Anyway, prompted by the comment of the above-quoted volunteer, I wrote a short note to describe what dementia home care involves (my original draft was five times this length, but I reduced it to keep it at a readable length). I think anyone in contact with home caregivers may find it useful to get some idea of what caregivers are experiencing.

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Trained attendants and respite care for dementia: Observations from India

I keep getting queries because of my site Dementia Care Notes, and the most frequently asked questions by my site visitors are related to getting trained attendants for dementia home care, or getting information on old age homes where dementia patients can be admitted.

My website already contains information on these, but I think people want to hope, and when they are desperate, they want a personal and direct answer. Much of my correspondence time goes in personalized replies to such queries, but I thought I’d put together a sort of summary answer here, anyway.

First, old age homes for dementia patients.

statistics for dementia facilities in India

As per the Dementia India Report 2010, there are an estimated 37 lakh (3.7 million) dementia patients in India and 6 respite care facilities (facilities for fulltime stay, short term or long term) that are specialized for dementia patients. I’ve summarized some data alongside, and you can see the contact information for all six at my website’s resource page here: Dementia Caregiver Resources across India. Add to it the day care facilities, the optimistic estimate of capacity oriented for care suitable for dementia patients is 400.

Four hundred, across India, a nation where the number of estimated patients is 3.7 million.

A massive gap, indeed.

Below are some observations I have to add on this topic–these are, of course, my observations, not an authoritative report, but they are based on multiple data points, and I welcome comments that may improve this understanding.

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Celebrations, isolation, withdrawal, and inabilities that creep up over years

For the last few weeks, I have been working on something that needed figuring out a lot of technical stuff, and today morning, finally, I managed to finish off that chunk of work. And as I sat back to breathe in deeply and try and feel happy about it, I thought of one major change that has happened over these last few years: I have fewer ways to celebrate now.

I started working from home around twenty years ago, after my father fell ill a number of times and coordinating his care was tricky with full-time work outside home. My mother (she was okay then) could not handle that work along with looking after my five-year-old son, and so hubby and I re-arranged our professional lives to a freelancer mode with the base at home. Hubby’s work continued to include travel within and outside city, but I worked off a home-base.

Till that point I was used to working from a typical office. My initial assignments as a freelancer were mainly system studies and design, which required visiting client sites often, but I had the flexibility to arrange the dates and times and was therefore available to support my father when needed. But then the profile of assignments moved to writing reports or developing systems, and I was spending most part of most days at home. The Internet was in its infancy, and many people did not have emails or did not check them. Work-from-home was rare and considered an oddity, but I managed. I also had to go out often for meetings and presentations–and used long phone calls with clients and fellow-professionals for supplementing these and get work done, but my amount of communication and social/ professional contact kept reducing.

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Adventures in Hindi Part 2: The failed experiment of Have-English-can-translate-to-Hindi

Continuing my narration of my office-chair adventures related to Hindi. This is the second post of a four-post entry (see part 1 here); I’ll use today’s post to describe my (since aborted) forays into translation. It took me a few months to step past that (what I now think of as) translation trap.

My initial thinking was simple and clean. Here’s what I thought: I have a fairly exhaustive dementia care website in English. I know Hindi. Let me translate it myself. How difficult could that be? Or if it takes too much time (or, er, is difficult), I can get the translation done professionally. It is just (so I thought) a matter of being willing to spend either time or money—and people do say there is an equation whereby time is money 🙂

I usually tackle any challenge in a two-pronged way: buy books, and start Googling. This was no different.

Within a week of my initial doodle recognizing this new self-imposed project, I had cleared out shelf-space, bought a Hindi grammar book, bought English-Hindi and Hindi-English dictionaries, bought a bunch of Hindi magazines and other health books. I had also located the Google transliteration facility and translation facility, installed the Indian language pack of my Microsoft Word (I hadn’t even noticed it had come bundled with the software). And I had even found a bunch of good online dictionaries for Hindi and Urdu.

It took some playing around to understand the basics of the transliteration package, and how it did not always work, and how to use the on-screen keyboard instead. It was interesting, for example, to see how the transliteration was not always the way Youtube songs are transliterated. “Ki” became कि, and not की (for which I needed to type “kee” ) And also, one can “train the transliteration software”; I trained mine to transliterate “dimenshia” to write out डिमेंशिया and reached a point where डिमेंशियाwould pop up as a choice even if I had just typed “dime”, which is a sort of tip-of-the-fingers way of speed-typing in a fairly different way.

Time to actually translate stuff, eh?

I knew, of course, that “Hindi” has many shades and versions. I remember the time it had taken me to orient from my Delhi Hindi to the Mumbai (then Bombay) “Hindi” and I even remember how years of living in Patna as a child had made my Hindi acquire the Bihari style (the effect took some months of Lucknow Hindi to go). Luckily, of course, we have Bollywood which gives us a range of Pakeezah to Munnabhai to educate us on diversity.

I did not realize how much that diversity would impact my attempts to translate. After all, people do translate stuff….

I surfed to locate bilingual sites, Hindi health-related documents, or sites created in Hindi. Not much choice existed. Many websites used impressive words that reminded me of news bulletins and Hindi exams. But if my intention was to retain the reader’s attention as well as communicate, I wondered how I could balance “brevity” and “purity” against “normal everyday Hindi”, whatever that was.

To begin with, I got stuck with the word “caregiver”.

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Fun times, me-time, glasses half full, and why I no longer have dreams

Here’s a post on stuff I enjoy, and what keeps me (though some may contest that) sane and cheerful and active most of the time. Seeing the glass half full and all that. And why I don’t dream about my future.

glass half full

Which reminds me, here’s a half-full glass at Café Coffee day after I’ve sucked out every drop of the Lemon Mojito–but not all glasses sparkle when half full. I even sat there for ten minutes waiting for the ice to melt–I’d paid for it, right?–then realized that ice-cold water wasn’t worth the wait. There’s such a thing as “sunk cost”. But this is quite unrelated to what I’m going to ramble about.

There’s fun and there’s fun, and on days when I can go out, I love long walks and cold coffee with ice-cream and puris and drooling over books in assorted bookshops. I don’t socialize (I’m an introvert who finds gatherings stressful) but I like going out alone or with hubby, walking, mall-walking, or sitting in a coffee shop, watching the hustle and bustle around me.

But I also build fun into my days at home.

Like jigsaws.

People rave about meditation and visualization for calming the mind, and I’m all for meditation so long as it is others who are doing it: great going, guys. Mindfully watch thoughts sneak in, and hopefully you find it enlightening rather than disheartening to recognize your “monkey mind” (and no, that’s not a mind thinking of monkey business). Visualization’s never relaxed me, either.

But a jigsaw engrosses me. Beats meditation, beats brain focus exercises. You can’t complete a 1000 or 1500 pc jigsaw if you are distracted.

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