Online caregiver communities: supporting each other

I used to feel lonely as a caregiver till I discovered that there are enough of us, and that there are communities–and even more important: we caregivers can form our own communities. Unfortunately though, caregivers don’t get together often enough, because caregiving is often hidden behind the scenes, even for serious and long-drawn illnesses.

In India, where looking after family members (whether a child or a spouse or a parent) is part of the expected duty, family members typically do not share their problems with “outsiders”, scared that they will be seen as unloving or as persons shirking their duty if they let even a bit of fatigue show. I think silence about caregiving actually worsens the quality of the care we can give our loved ones, because information, tips, and ideas do not get pooled, and care given by a family is restricted to what they can figure out by themselves (possibly in their overwhelmed state). In effect every family is forced to reinvent the wheel.

Contrast this to roles that are talked about openly– like “normal” child-rearing (not bringing up children with special needs, which remains in the shadows). For normal child-rearing, experience pools are easily available and can be accessed without shame.

We need communities and sharing for caregivers, too. Communities where we are able to talk about situations, and hear from others whether they’ve faced similar situations, what could have caused it, what worked, what didn’t work.

Of course, given that caregivers remain invisible, it becomes even more challenging to collect enough caregivers to form a community, and then make members speak up and share

In the “Western” countries as we call them, support groups are relatively common. Caregiving is openly acknowledged as a role, and society accepts that caregivers need support. Such support is partly given by support groups that meet periodically to discuss topics and situations of mutual interest, get expert opinions, and relevant training.

In India, people assume that a “joint family system” provides all necessary support, and feel that outside help is not needed. Some even assume that if a caregiver needs help from outside the family, it indicates the decline of the joint family system, of culture, and all that. The mechanism of supporting caregivers is associated in part with a sense of inadequacy and “bad family” and shame for society as such; if our families were “good”, we would not need support from “outsiders”.

But taking care of a patient using unproven “instinct” is not the same as being an “informed” caregiver who understands the situation and challenges and uses suitable mechanisms and skills to help the patient.

Caregiver communities collectively enable caregivers to become better and more informed caregivers.

Given how difficult it is for caregivers to locate each other and coordinate meetings, in-person communities are difficult to form and sustain. Many caregiver groups that are started with the best of intentions start tapering off unless some volunteer/ caregiver makes it his or her life-mission to constantly induct new caregivers.

Because, you see, a caregiver community is an ever-changing community.

Been working on dementia care site

I’ve not blogged for a while, mainly as I decided to put in a burst of work on my site, based on the surveys I did earlier. The March survey had shown trained attendants as a major concern area, and I tackled this first, gathering information from multiple sources. I was looking for areas of concern, which I collated across meetings with caregivers, questions asked in support groups, even an e-group that I co-facilitated, in addition to a survey I conducted for getting more input (as mentioned in my last blog entry).

One upshoot of all that energy is that the Dementia Care Notes website now includes a detailed page on what to expect from attendants in dementia home care, how to adjust to them, how to orient them, and supervise them, and ensure safety and security, etc. The page is here: Using Trained Attendants for Dementia Home Care The page also links to a document that can be used as a starting point while orienting an attendant for your patient’s needs. The document is downloadable at this link: Orienting attendants for dementia home care.

I’ve also added other pages on some other important topics, like Special tips for challenging behaviours: wandering, incontinence, repetitions, sundowning and Long-Distance Caregiving for Dementia Patients in India

As I worked on these pages, I found myself coming up with a lot of ideas that merited blog entries. My experiences, my interactions with other caregivers, my realizations (during social gatherings and even medical trips) of how people outside my immediate circles seem as unaware of dementia now as they were three years ago. My comments on movies that depict dementia. Other stuff like that. I’ve jotted them down. I am hoping to make more frequent blog entries now, maybe even once a week, but I’m a bit wary of committing to that.

Time, now, for a break for a few days and then I hope to fall in a regular cycle of blogging…Let’s see…

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

Where dementia caregivers in India need help

Because time and energy are limited, because there is so much that can be done, because I need to prioritize (or risk going crazy), I decided to use a simple, single question survey to gather data from dementia caregivers in India/ people involved with them. I put up the survey in the second week of February.

I am grateful to every caregiver/ friend of care giver who took time to share their thoughts or forward the link/ e-mail to someone else who may have been interested.

In this post I am analysing the first batch of responses received: the 17 responses I received up to March 14, 2011.

First, about the questionnaire (given below). My simple, single question survey collected no personal data, but also did not allow a person to respond twice. Respondents could choose as many options as they wanted. I expected them to tick any options they considered helpful, and if someone ticked all options, it would be because that person genuinely felt all the choices offered were helpful. (The survey is still open and can be taken here)

The analysis below is of the 17 responses received up to March 14, 2011. These responses had trickled one at a time, and apparently came from a scattered profile of individuals who had somehow heard of the survey. I started this analysis when responses tapered down. Then, after doing this analysis, when I checked to see whether a couple more responses had trickled in, I was surprised to see that there had been a spurt of responses on March 15 and 16. I suspect more responses may be on the way. I will present the analysis of the remaining responses later, after the responses trickle down to zero again–or this post will never get done.  

For this first batch of 17 trickle-in-one-by-one responses, the counts fell in two clear categories.

Most respondents chose the following options:

• Availability of trained attendant (14)
• Training programs for caregiving skills (12)
• Home nursing services (12)

And fewer chose these other three options:

• Support group meetings (6)
• Caregiving books/ videos (6)
• Day care/ respite care (7)

In the “others”, I received the following three comments:

• And more information available in public which helps you understand that dementia is an illness not something that you need to hide away!
• Professionally Trained Nurses who do not take the other inmates of the house for a ride.
• knowledge of potential volunteers for caregiving

So, folks, that is the raw data: interpret it as you will. Below is my impression.

For Those New to Caregiving

A few days ago, a friend asked me to jot down thoughts I’d like to share with a newbie caregiver–someone thrust into caregiving that could be intense or extended, but was not restricted to caregiving for a dementia patient.

Here it is; if it seems useful to you, share the link with others. And I’d love to receive comments …(ETA: For a  PDF download version, click here.)

Tips For Those New to Caregiving

By Swapna Kishore

Fifteen years ago, my father collapsed while getting up from a chair. A few hours later, instead of editing a document I had to submit to a client, I was trying to figure out how to look after someone bed-ridden thanks to a hip fracture. I assumed then that the situation was temporary, but as days, weeks, and months went by, my life kept changing to accommodate caregiving–first for my father, who never quite recovered, and then for my mother, who has dementia.

My caregiving journey is dotted with successes and failures, days of fulfillment and days of frustration. I’ve been sharing my experiences through my blog and website, and in support group meetings.  Some days ago, a friend asked me to jot down suggestions for people newly thrust into the role of caregiving. Here is what I think…

Most of us have very little idea of the intensity involved in extended caregiving. We may have looked after someone with a fever, or spent a week or so supporting someone recovering from a surgery, but that is quite different from caring for a person suffering from a serious or disabling condition such as late-stage cancer, cerebral palsy, dementia, or organ failure. We may not have imagined ourselves (given our gender/ qualification/ skills/ good luck) as persons who may need to provide such care.

Caregiver Community Karma

I guess it has been a long time again since I posted here. After the last post, I thought I had nothing much left to say, well, nothing important, and nothing I hadn’t said before. Okay, so maybe I did have some thoughts, but nothing significant enough to write a blog post about. I was wrong; bulk and originality are not the only criteria to venture out into the cyber world…

The last few months, I used my spare energy to redesign my site. I added a whole bunch of pages on dementia and caregiving, with special focus on caregiving for dementia in India. In these pages, I consolidated and structured a lot of my own thoughts and also some information gathered over the last couple of years, as part of my interaction with other caregivers and with volunteers and professionals. I added resource pages (and was dismayed at how few caregiver resources were in India) and links to books and DVDs. Pages include stuff on how caregiving is different in India, and tips focused on that. I uploaded an awareness presentation I sometimes use. I also jotted down ideas for more updates later. I would, of course, welcome any ideas/ comments you have.

My intention as I worked on this was very simple: make my thoughts and data accessible for anyone who may happen to reach my page, either because they know me or someone directed them there, or a search engine threw up the site’s url. I have not yet thought of how to publicize the stuff; I have no idea how to go about such stuff. If even a few people benefited from my effort, it was effort well-spent.

And people have been contacting me every couple of weeks or so, people I don’t know, seekers who reached my site while they desperately surfed for resources for dementia and caregiving in India. Some were helped by what I had put forth, and some wanted more help (and I tried my best to find out the additional data they wanted).

Today’s post is stirred by one such contact.

We need more of us sharing our caregiving experiences

In many of my blog entries on dementia and caregiving, I have shared my impression that poor awareness of dementia in India is a major concern area. I often feel that dementia is far less understood in India than in some other countries, and that the role of the caregiver not seen as a significant, contributing role  that needs special patience and skills.

Relevant in this context is the work of 10/66 Dementia Research Group. To quote them:, “10/66 refers to the two-thirds (66%) of people with dementia living in low and middle income countries, and the 10% or less of population-based research that has been carried out in those regions.” This group is a collective of researchers working on population-based research into dementia and related areas in these countries.

Interestingly, the website includes a report on Qualitative Studies which confirms my view of poor awareness of dementia and caregiving in India.

The report reminds me of a support group meeting where a caregiver shared how, when his father was diagnosed with dementia, the family was so ashamed they wanted to institutionalize him and  isolate him (hide him, get rid of him so that they were not associated with him), and when the son took over the caregiving, they isolated him, too.

I think we need more people speaking up about dementia, and about caregiving. We need more people admitting that the elders in their family have dementia (admitting to themselves, admitting to others). I hope more people will write about it (blogs, books, articles, reports, novels, whatever), speak about it, think about it, so that one day people with dementia in our country can life a fuller life to the extent their ability allows them, and carers can care for them and lead fulfilling lives of their own, all done with dignity.

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

learning about caregiving

A few days ago, I read the blog of someone whose father-in-law has dementia, and she shared the problems and overwhelm of caregiving. The blog brought back many memories of several ‘challenging’ situations I faced with my mother for years.

Things are relatively smooth for me now as far as behavior-related challenges, because my mother is not aggressive or abusive, but that was not always so.

I have been caregiving for my mother for twelve years now, and quite a number of those years were rather full of the typical problems of early and middle-stage dementia–wandering, repetitive questions/ comments, accusations that we were starving her/ stealing from her, hitting out, hallucinations, removal of clothing, what have you.

It was, well, difficult.

Support group meeting, and a brief personal update

ARDSI Bangalore’s next support group meeting for dementia caregivers is scheduled on December 26, 2009 ( 3 pm to 5 pm). The topic is: Palliative Care in Dementia and the invited expert is Neela Patel, M.D, M.P.H, Geriatrics, Gerontology & Palliative Medicine, Department of Medicine,  University of Texas Health Science Center, San Antonio, USA. See the venue and contact details  and the rest of the announcement here.

I am really looking forward to this meeting. Such meetings provide me a forum to share my experiences and insights with others, and also get input from them. There’s nothing as effective as interacting with fellow-travelers on this caregiving journey, where we get a compassionate and helpful environment to understand how we can handle our roles effectively.

The meeting is particularly welcome right now because of my changed caregiving situation.

Around three months ago, my mother slipped into a bed-ridden state. She nods and smiles occasionally, but does not talk, except for a word or two–around five words a day   .  She cannot prop herself up on bed, or turn sides without assistance.  As I, along with the medical and nursing resources available to me, examine ways to improve her situation, I am also trying to adjust to this new reality. Stuff that was priority a few months ago seems trivial, or at least, not important in my immediate context, and I am redefining my life.

One casualty along the way has been my blogging. It is as if I had decided that I will blog only when I am free to do so, and when I am feeling good and relaxed enough to compose something. I suspect that’s not going to be likely for a while, and so I am wondering whether I should blog anyway, even if the posts are small, to share my current caregiving situation and the thoughts it brings to me. I haven’t decided yet, but perhaps there is a merit in sharing this part of my life as it happens…

If you like this post, please Share/ like this post using the buttons below.

You can also follow this blog by getting email notifications; click the “Follow me” option at the bottom of the right sidebar. Thank you!

Knowing what dementia is, versus understanding what it really means

A few weeks ago, as I was working on how to increase awareness about dementia, I realized that most people who know about dementia don’t really know about it. They can talk about how unfortunate memory loss is, and how awful it must be, but the sentences are more like quotes from articles they have read, or what they have heard. Because, a few minutes later, they slip into behavior that can be extremely stressful for the patient, or come up with suggestions that leave the caregiver scratching his/ her head, wondering how to explain it all over again.

Memory loss is one of those overused phrases. We joke about it all the time. Misplaced the car keys? Joke: You are getting senile. Joke: Maybe you have dementia. Senior moment. Whatever. Forgot a birthday? hey, you’re getting old. Grin.

So when someone says, dementia is memory loss, we assume it to be more of the same. Maybe losing five car keys? Forgetting ten birthdays? It is bad, inconvenient, but not heart-wrenching. And just as we don’t make too many concessions for someone because they misplaced their spectacles or car keys or forgot which day of the week it is, we expect a dementia patient to, more or less, be normal (except that she has misplaced her keys, poor dear, smile).

For years after my mother was diagnosed, I made this same mistake. I made allowances for memory loss, but didn’t quite understand (or try to) how memory loss could so totally affect behavior.

Where is Mother, or, when a dementia patient walks out

One of the scariest consequences of dementia is that patients tend to wander off.

Imagine a lady with dementia sitting at home and suddenly thinking it is time to go to office (never mind she retired twenty years ago); she picks up a purse on the table (it isn’t even hers) and heads for the door. The surroundings seem familiar for a while, but then she is confused. Now she is in a strange place, agitated, not very sure who she is or what she is doing as her original reason for leaving the house has been forgotten. Meanwhile, frantic family members are trying to figure out where Amma has gone.

Or a restless, reasonably active person walking around in the house, and spotting a door. Out of habit, or curiosity, or boredom, the dementia patient turns the knob. Nice weather, good breeze. Another step and the person is out of the house, and no one else knows. After walking a block or two, the dementia patient realizes that he/ she is lost. Agitation, confusion, fear set in. He/ she wants to return home, but is not sure of the address, or may he/ she remembers ‘home’ from a different city, a different age.

when caregivers are men

In my earlier posts discussing caregiving, I tended to use “she” while referring to a caregiver. This was pointed out by a commenter (Vipul Naik), and that got me thinking. I realized that with a bit of an effort I could keep entries free of pronouns and let the reader decide what pronoun to assume. Because the fact is, there are male caregivers and female caregivers, and using any one pronoun could be seen as stereotyping or acting condescending or whatever.

So, if I use the female pronouns for a caregiver, this could be because

• all caregivers are female and I know that and am being factual
• all caregivers (or most) are male, but I want to be politically correct
• I don’t know (or maybe care) what the gender distribution is, but in English, the male pronoun is default, and so, to show I am politically correct (and encourage women), I will use the female pronoun
• I don’t know or care about the % of female caregivers, but I want to assume that caregiving should be done by females
• I know there are enough male caregivers and want to minimize their role

On the other hand, if I use the male pronoun for caregivers, the reason could be:

dementia caregiving in India, some thoughts (part 2)

There is a lot of material available on the web (free) on dementia and caregiving. There are also several books.  As a caregiver, I read these to educate myself and make caregiving smoother for my mother and myself.  I face one problem: most of the material assumes a social and cultural context different from what I find in India.

Briefly, books, pamphlets, write-ups available usually assume an American/ European/ Australian culture, where people are likely to live independently, openly (and without hesitation) make choices that allow them to “have a life”, discuss their desires and needs, and have their privacy respected. Specialized tools are available, and information on dementia is widespread. The role of support persons and caregivers is recognized and respected. The environment in India differs along these axes in varying degrees. We must therefore re-interpret some lessons/ suggestions, and explore alternate means to meet the intent. This is applicable to caregivers, counselors, support groups, and  NGOs.

Here are my initial observations and thoughts on differences and possible ways to re-apply the underlying ideas in our context. I would love feedback and suggestions on this material so I can develop it into a more usable note.

Privacy and independence In India, people openly comment on others, judging and criticizing them for the choices they make, for what they look like, for what they are doing and not doing. Caregiver actions are therefore, fair game for everyone. Many people who comment are well-meaning but ill-informed. They pass caustic comments, especially if the caregiver is a daughter or daughter-in-law and the visitor is elder (and elders are always experts ). Worse, visitors egg on the patient by telling them to demonstrate more will power, or criticize/ scold  the caregiver in front of the patient. Unfortunately, methods of maintaining patient and caregiver sanity in face of such visitors are  not addressed in books on dementia care, because they assume a society where people (even if judgmental or critical) are unlikely to voice this directly (however, they may call up social workers and the police ).

dementia caregiving in India, some preliminary thoughts…

A lot of people talk of how countries like India have more family values than other countries, and how elders are more valued, cared for and respected here. While many countries end up spending a lot in institutional care facilities for the aging population, this cost is relatively low in India where most families look after their own.

As I see it, there are plus and minus points of every society, and while our setting works well in some ways, I think we should not ignore the problems it can result in. (Note, I am not a sociologist or counselor or any such thing, just an ordinary caregiver sharing my opinion.)

In India, children live with their parents, and their children with them (Going two, three, even four generations). While in many countries a son or daughter living with parents past the age of eighteen can cause a few raised eyebrows, and a married son or daughter staying with parents is far from common, here it is assumed that children will stay with their parents as far as possible. You stay with your parents as a child, as a youngster, as a college student, and after employment, if you are in the same town. You try to be in the same town. After marriage, the son stays with the parents, and the daughter-in-law moves in too, adjusting to the in-laws (food, dress, TV programs, schedule of day, way of talking, etcetera). A daughter, conversely, moves out after marriage to her in-laws place. This is normal. If the employed son is in another city, well, he has to live separately, but he is expected to try and find a job in the same city. Sometimes sons live separately even when in the same city as their parents, but they have to always justify to others why they do so .

As the parents age and retire/ fall ill (say, first heart-attack, first stroke, first stent operation), even if they were living separately, they move in with the children (or the children move in with them). Usually, when there is more than one son, the eldest son is the privileged person to get the parents.

caregiver isolation

Yesterday, I shared a story of Friend A, alone, sad, feeling let down. The tragedy is, such isolation is not, well, isolated.

Again and again, if they open their hearts to you, caregivers will tell you how their caregiving becomes even more burdensome because people they knew earlier, friends, relatives, start cutting away. Often, this happens gradually, and often it happens without grace. That is, if asked, people give reasons that sort of blame the caregiver for it.

I know this from my own experience, and I know it from the experience of many other caregivers.  These are the sort of sentences we hear:

Dementia support groups, dementia caregiving

I have often written about the overwhelm of caregiving, and this post is my expression of gratitude to what has most lightened the burden of it all… my support group.

For many years, I was not aware of any support groups in my city. Last year, after a rather traumatic personal experience, when I realized how very isolated I had become, I knew I needed help. I located a Bangalore-based support group, but I hesitated. Wasn’t a support group just a group of people sharing negative vibes, pulling each other down? Did I have the time to go and listen to a bunch of people, all probably as overwhelmed as me, or more? What possible good would it do? Better to sleep off or read a book or go to a Barista or Cafe Coffee Day and have chocolate icecream

I contacted ARDSI Bangalore, the organization that coordinated the support group. I asked them for any reading material they had. They invited me to visit. The first phone call lasted around an hour, and Dr. Priyamvada (call me Priyam) was so full of practical tips and empathy that my sense of loneliness vanished. She invited me to drop by at her office and discuss my problems further, which I did. The openness with which she and her colleagues listened was a drastic change after years of people not believing me–it was like I had come home.