2010 – 2012 Round-up

As I begin writing this, I am conscious of the fact that we began this Link in 2010, that two years have passed and we are asked the most basic question still – ‘What is it about?’ by people new to the concept, just as we are asked ‘What are you doing now and how is it going?’ by friends and supporters familiar with the concept and vision behind Caregivers Link.

This round up is Janet’s idea. (Janet and Devashri are core team members, my partners at Caregivers Link) It is meant to answer both questions and present where we’re at today as well as indicate where we’re hoping to go next.

The write-up that follows is long and some of you may not have the time or the energy to go through all of it in one go, though we of course hope that you will. However, for speed readers and such, I am listing here the 10 points under which the main section of this round-up has been organised. You may go through it all or just keep scrolling down till you reach the bit that interests you.

1.    Caregivers Link as a partnership social venture.

2.    Homework on caregivers and resources in India.

3.    www.caregiverslinkonline.com

 

 

4.    Homework continues…

5.    e-Focus Group Discussions.

6.    Looking at the mental health field.

7.    Caregivers to persons with Multiple Sclerosis.

8.    Caregivers Link and Counselling.

9.    Home Care Attendants.

10.    Staying connected via Mailing List and More to be!

What is Caregivers Link about? It’s about studying and understanding the situation of the informal family caregiver and helping identify and create support and resources of diverse kinds for caregiver families (families with a care receiver, understood as being anyone who requires care due to circumstances of ill-health or a challenge to ability). Care receivers are forced to interact with medical and support staff, because that relationship is a direct one (with and without its own problems) – but caregivers, who may be parents, children, spouses and partners, siblings and sometimes friends, play this critical but indirect part in the health sector – they look after someone who is bearing the direct and more obviously visible burden of an illness or disability. They are neither here nor there, being neither patient nor doctor – yet they are the channel and the instrument through who care and healing processes are implemented.

What has changed in these two years is our understanding of the vast scope of requirements in the field. I have heard seasoned caregivers say, that one of the first lessons a new green caregiver must learn as soon as possible is that you are not superhuman, you cannot do everything, you must prioritise because the multiple challenges of caregiving are almost always so much bigger than you; you must be able to give yourself room to be imperfect, forgive yourself very often, build your abilities slowly and do not think you can do it all or do it all the time.

Sounds like a lesson Caregivers Link learnt too. As I try to recap and go back to the beginning, I think of how I tried to explain to some of our earliest friends (Swapna, Supriya, Prabha, Sandhya, Prarthana, Kalpana, Janaki, Ramana, Subha and many others) that we were going to start caregivers support groups in cities which would become little hubs of information and interaction for caregiver families, how we were going to try to link with hospitals and medical professionals to create programs for caregivers across the health and ability spectrum, how we were going to try and tie up with field experts to study the gaps in home caregiving and create solutions that could include information booklets, training programs for caregivers, counselling for caregivers and care receivers and … the wish-list is long.

We approached all of it with energy that was sometimes high and sometimes low – and are now somewhere a few strides away from where we began, but floating in an overwhelming sea of things-to-do. Here are the things we’ve done so far and I will put them down in point form!

1.    Caregivers Link as a partnership social venture

We took a decision to be a social venture rather than an NGO because one of the first challenges we were wrestling with was how to keep our work sustainable. Where do the money, time, energy and resources come from? In fact this was one of the first questions many caregivers asked us. We told them the facts as they are – we are all career professionals, with parallel work lives and personal commitments. This requires the flexibility inherent to running a business out of your garage. We do not always have something to sell and earn money with, but we have the freedom to create streams of income based on products and services that emerge at various times from this garage. We haven’t actually earned any money selling anything yet, but we’re getting there. So Caregivers Link is a social venture, a partnership business with a social focus.

2.    Homework on caregivers and resources in India.

We stepped into the sea with two synchronised activities – through an informal dipstick survey open to caregivers, we began to collect inputs from caregivers on their situation and circumstances, wants, needs, the gaps in services and support. (Read more here.)

Simultaneously, we began a mad information collection drive collating lists of resources available for care receivers across diverse circumstances of chronic or terminal illness, mental health challenges, and challenges to ability. (Link to resource section here.)

In the same survey of caregivers, we asked them to share as many such resources that they knew of to help us build the list.

Here is what we found:-

Most caregivers have little to no support and do not have information on the little support/resources that do exist.

We combed the internet and spoke to friends, colleagues, doctors and medical professionals through our personal networks and discovered that there are pockets of support, resources and information networks, but access to them and information about them is also limited to pockets and circles.

In the majority, the list of problems caregivers said they faced included –

•    Frustration with hiring home care attendants
•    Juggling work and home
•    Lack of support
•    Lack of information/knowledge of the health/ability issue
•    Expenses
•    Loneliness and isolation

And what did caregivers wish they had?

•    Patient and/or caregiver counselling
•    Access to and help with hiring trained attendants
•    Joining support groups & sharing thoughts, feelings and experiences
•    Information, knowledge & care to-do check lists
•    Help to defray expenses

  • do caregivers not have even the most basic informational support? We believe it is because most caregivers are invisible – there is little to no focus on them, no support to enable them look after their loved ones better – and also look after themselves while they are about it.

One of the most critical challenges facing us all is related to aging and age related care issues. In this vast field, Alzheimer’s and dementia are a prominent and growing concern. At the earliest stages of our work, we connected with Swapna Kishore, caregiver (to her mother who had dementia ) and a trainer in the field of caregiving for persons with Alzheimer’s and dementia. She utilizes her  experience and knowledge of the subject to create and disseminate content and information on the subject.

(Go to Swapna’s site on dementia care in India – Click to link to Dementia Care Notes site in English – Hindi version here.)

3.    www.caregiverslinkonline.com

Simultaneously, in lieu of a chain of physical meeting spaces/hubs across India (ever hopeful!) we decided to set up a website that we could use as a communication and exchange platform. This has worked well from the beginning, barring a hiccup last year that involved transition troubles while trying to move from one server to another. We lost some content during the transition and due to multiple other time and resource constraints could only focus on the site again this year, but we have re-uploaded the old lost content as well and are now ready for new things. So http://caregiverslinkonline.com has been the steadiest and most consistent face of Caregivers Link from the beginning. (We thank Swapna who helped us create the site and get it online, Averil for design, brainstorming and ideation, Prabha for her constant and consistent engagement and help on and offline and also Allan for his support that helped us keep it going.)

Along with the website, we logged into Facebook and Twitter and maintain those two platforms for interaction as well.

4.    Homework continues…
Our own attempts at study and homework connected us to the attempts of a few others also seeking an understanding of caregiving in India. So in 2011 we e-met Han Pham and Anamika Debnath, two of a trio of researchers from the University of Dublin, focusing on caregivers, that yielded a research paper entitled ‘Who cares for the carers?’ Over Skype interactions between team members, we spoke of our experiences with Caregivers Link, and our personal perspectives. It helped us, as we answered their questions, to clear many of our own thoughts and concepts. (To know more about their research, click here.)

This year, 2012, journalist Charukesi Ramadurai spoke to us during her homework phase while putting together a write up on the efficacy of e-support groups in the health field. When her write-up came out in Open Magazine, we found a wealth of information from the background work she had done with others in the field. (Read Charu’s article here.)

5.    e-Focus Group Discussions

A key part of daily life for caregivers we were beginning to get to know, as well as for us, was the need to engage and exchange in a way that allowed flexibility. If you want 5 people to come together as a group in one location, in one city, at a specific time, for a period of 6 days in a week to talk about the things they are thinking and dealing with – even as they manage their personal and professional lives and caregiving commitments – that is not going to happen easily. So we experimented quite successfully with e-FGDs. (Focus Group Discussions across e-mail.) e-FGDs allow participants to exchange emails and interact independently, at their own time and convenience, from home or the workplace or where ever they are able to access the net to read and respond to emails from other group members.

The first of these e-FGDs was on the theme of ‘Home care attendants’ and it was facilitated by caregiver Swapna Kishore and Janet from the Caregivers Link team.
(Read Swapna’s report on the e-FGD on Home Care Attendants here.)

The second e-FGD was a small group discussion where we decided that caregivers should pick those subjects that were top of their minds. This helped us identify what was top of their minds, and understand to some degree the issues around those subjects. I played the role of facilitator for this group work, and Devashri was both observer and report-writer, consolidating the content and themes that emerged from this week-long exercise. (Read Devashri’s report on the e-FGD ‘Small Group Discussion’.)

6.    Looking at the mental health field

During this time, our linking and networking was taking us into the area of mental health in a big way. If caregivers are mostly an invisible lot, caregivers to persons with mental health challenges are even more invisible – because mental health or illness does not present itself necessarily with symptoms and signs such as the more obvious fever, swelling, wound or injury. In Mumbai, we spoke to Dr. Harish Shetty and he gave us many leads to other mental health professionals, also helping orient us to some of the issues for caregivers to persons with mental health challenges. Dr. Shetty actually does a lot of work with caregivers and has a support group called Maitri that has been active for many years. I went with Dr. Shetty to a school in Thane where caregivers, care-receivers and medical professionals had come together at a World Mental Health Day event where many brave, bright and experienced individuals came together to honour those who battle mental health challenges, some of them every moment of each day. Similarly, there were other events and meetings and these helped increase our own exposure to the ideas and efforts of others, from the caregiver perspective.

Sometime during this period, we got in touch with the SAA (Schizophrenia Awareness Association) based in Pune and met the inspiring team of caregivers and care-receivers at their Dhayari centre. (Read about our visit to the SAA here.)

As a consequence of this visit and our subsequent conversations with Amrit Bakhshy and Gurudatt Kandapurkar we undertook to jointly put together a ‘directory’ listing of support resources across India for caregivers and care-receivers dealing with mental health issues. This listing is meant to be constantly updated. It is difficult to get information about such resources but we do have some now on the list and a promise from people in the field to add to the list. (Access the listing of support group resources for mental health here.)

This is when we discovered for ourselves, the potential value of Twitter! We tweeted about this listing and promptly got a response from Shampa Sengupta of Sruti Disability Rights Centre who tweeted back, an encouraging tweet that expressed appreciation of what we are trying to do. A stalwart in the mental health arena, she is adding to the list – support groups that she has come across and knows of from her work and experience. For networks and links such as this, we are grateful.

7.    Caregivers to persons with Multiple Sclerosis

The more people we met and spoke to about what we wanted to do, the further afield we went – we connected with the MSSI (Multiple Sclerosis Society of India) at one of their events that focused particularly on caregivers and solutions for caregiver stress. We were invited to speak to and interact with those present, many caregivers as well as some care receivers. At that occasion there was a tremendous mix of warmth, hope, courage, sharing and support; I found it easy to understand how critical it is to be a part of such support groups when dealing with overwhelming challenges.

8.    Caregivers Link and Counselling

Counselling for both caregivers and care receivers had been expressed as a need time and again by caregivers. We explored the option of getting counsellors on board. That is still something we’re aiming to do. In the meanwhile, Janet who has been thinking for a while of taking up a short course of study, aiming to be a counsellor, took time out and did just that. She found a good internet based course, combining both study and practical experience, and decided to re-connect with the MSSI to offer counselling services both face to face and over the phone. (Janet is in the process of detailing her plans, thoughts and experiences with counselling in a note that we will upload and share with you soon.)

9.    Home Care Attendants

A massive gap in services is in the field of home care staff, a subject that comes up time and again and one on which we’ve had many discussions, the e-FGD referred to earlier, and many queries. We decided to jump in and study things ourselves to explore the possibility of playing a role here. As a result, we got in touch with organisations in Mumbai and Pune that undertake training of para-medical staff such as ward boys and ayahs. We spoke to friends connected to the field of security agencies. We tried to look at organisations that work in livelihood, as a potential source of suitable candidates who could be trained as home care attendants. Now this is slow going, being a critical area that already has some players (bureaus and agencies) that claim to provide trained home care attendants.

We got in touch with Janseva in Pune and are at present in the process of working out the modalities of a pilot home care attendant training experiment. This venture is at a very nascent stage and requires, time, energy, resources and nurturing. We will keep you posted on progress.

10.    Staying connected via Mailing List and More to be!

Connecting with new people, and also staying connected in as many ways as possible, led us to create a mailing list for folks who want to stay in touch with us and give us the opportunity to keep them posted on our doings. We also started up an e-newsletter, with every good intention of creating and emailing it out once every quarter, and managed two issues. However, a newsletter is in its own way resource intensive and it remains on our big list of follow-up to-do’s. This round-up takes the place of the newsletter a year down the line. (Click to read some of the newsletter content here.)

We are now planning to come out with a souvenir – a publication for which we invite you all to donate a piece of writing, perhaps a photo essay, a letter, questions and answers. We will also be including content in that souvenir, some generated specifically for it, others being old content currently up on the website but with a high value for print distribution. We intend sourcing advertising and sponsorships for this souvenir, as a way of defraying expenses incurred in its creation and distribution – and also for generating some funds for projects we want to do but do not as yet have resources for.

One such project already on the anvil is another publication we are planning as a caregivers resource guide.

We’d like to hire and train paid part-time and then full time volunteers to support and progress our work. Nilanjana – our very first volunteer – who pitched in and helped us did so without pay and with great commitment. We wish her all the best and hope to have her back on projects every now and then.

Another more ambitious project is creating and sustaining caregiver support groups and hubs in different cities where caregivers with and without their care-receivers can meet and chat and participate in care related as well as respite related activities.

We’d like to work with people we’ve met who have their own expertise, skills and commitment to offer, that have great potential for use in caregiving. One such person is Abhishek of Matrika Design Collaborative with whom we’d like to work on product ideas for caregivers and care-receivers.

 

 

 

 

We’d like to create and maintain links with the corporate sector and the pool of caregivers to explore the many possible points of engagement.

The points of this round-up are over. Finally there is one more thing to be said. Many wonderful people have stayed patient with us, helped as they can and stayed interested in our work despite our own meanderings, falls and false starts. Some of these are caregivers, and some of them in the recent year have lost those family members they were caring for. We’d like to take a moment to remember those who have passed on and we’d like to thank and honour those caregivers and families who did what they could, the best they could. Sophie Murphy who lost her mom to cancer two years ago. Swapna Kishore, who lost her mother this year. Supriya Dutt who’s mother-in-law passed away after a long bout of ill-health. Ramana Rajgopaul who’s father passed away this year.

Work continues. Our current jobs include translation, adaptation and distribution of content comprising caregiver experience and expertise because that is one of the most basic ways that caregivers can connect – and strengthen the link.

Before I close – I invite you to look at a simple presentation we’d made about a year ago and put up on Youtube. One of the questions it tries to answer is … ‘How many caregivers are we talking about?’ Take a look at the Caregivers Link A/V here.

Please share the link to this round-up widely – and write in to us at caregiverslink@gmail.com and don’t forget to join the Facebook page if you’d like to.

We will be keeping comments open on this page till the end of November 2012 and would love to hear from you, your thoughts, suggestions and feedback are important to us all in the link. All comments are moderated so they will not ‘show’ on the site till after 24-48 hours. If you’d like to write in after November 2012, just send in an email to any/all of these IDs – caregiverslink@gmail.com, shikha.aleya@gmail.com, care.janet@gmail.com, devashrim@yahoo.com

Warm good wishes and greetings of the festive season – to all of you, from all of us.

(Shikha Aleya, with inputs and prodding from Janet Sunita and Devashri Mukherjee.) November 2012.

Taking things forward‘ – read our follow-up note , responding to feedback, thoughts and suggestions from caregivers and others to this round-up.

9 comments

  1. Shikha Aleya says:

    Dear Radhika,

    All resources and contributions are welcome, time, energy and participation being among the most important. At this point in time we are not geared up to handle donations of equipment, however we will certainly try to link up such potential donors to organisations that work with such donated materials.

    We are going to mail you soon and send you some materials to read, reflect on and decide what of it you would like to support and how.

    Thank you – your enthusiasm has given us a renewal pack of energy :-)

  2. Radhika Chandiramani says:

    Super! Many congratulations! You people have been doing a great job – pro bono…time to now get some monetary support so you can do much more of what you do so well. Your expertise, ideas, advice, etc is much needed, and most of all I think, it is imp for caregivers to know that they are not alone! Best wishes!

    1. admin says:

      Radhika, thank you. Yes, I agree monetary support needs to be integrated into our plans and processes for the next stage of work. The past two years were spent in much needed homework and arriving at a sort of ‘proof of concept’. We’d like to keep you posted as things progress and catch you at some point to brainstorm a bit.

      1. RC says:

        Anytime! I Believe in your work! And maybe I can convince others to believe as well. What say?

        We must find a funding body that supports this work! You have to keep going anyway – if no funds, individual contributions will work. May I make a start? Where do I send you folks money? Do you have an account? Will I get a tax exemption thingy? Not that it matters to me, but as I am getting the ball rolling, it might make a big tax diff to some people, who want to contribute 5 figure (or more) amounts! : ) So tell us all details… and in case you have done so before, tell again because of course I have forgotten where it is. Stupid me!

        1. admin says:

          I read your response first thing this morning and I have to tell you I spent the first half hour hopping from one foot to the other out of pure joy. We are all thrilled with your offer and we intend to take you up on it – both parts of it, convincing people to fund and sponsor some of the work as well as picking your pocket for your individual contribution.

          We have a few options of next steps as suggested by caregivers in our network and as a result of our own experiences so far. We need to discuss these and will share with you some options of programs we are intending to start off as pilots at this stage primarily. Based on what you think and feel, we can move things further.

          Will email you and take this on. Thank you again for your encouragement, belief and all of the support.

          1. admin says:

            One thing more, since we are not an NGO, I do not think we will fit into the tax exemption framework at this point, and will not therefore be able to offer the benefits to you. We will of course check on this further and include these details in the mail we send you.
            Thanks again.

          2. RC says:

            No exemption, no worries. My offer still stands. I just brought up the exemption thingy because at the end of the financial year it can be quite attractive for some people!

            All the best! Oh, and do tell us if you also accept offers in kind – and if so, in what kind? I mean like people volunteering time to fund raise or research or donate equipment that someone can use, etc…

            Warm regards!

  3. Ramana Rajgopaul says:

    Shikha, Janet and Devashri, I offer you my congratulations. This is a great round up and though it seems to be simple, I can quite visualise the great amount of effort and editing that would have gone into it.

    I shall continue to be available to the group though quite what I can contribute now that I am free to do many things that I could not do earlier, is a moot point. If any caregiver needs any help in and around Pune, s/he can contact me and I shall do what I can to help.

    Wishing the group all the very best.

    1. admin says:

      Dear Ramana – thank you very much for all that you’ve said.
      In terms of help and advice, there is no substitute for the experience of caregivers who have worked their way through and around the complexities of caregiving – and you are on our list of such resource people, we are happy to have you with us.
      Warm best wishes :-)

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