2010-2012 Taking things forward

RESPONSES TO THE ROUND-UP

The end of 2012 … For caregivers and care-receivers, commitment and responsibility towards care schedules and towards each other remain strong, and as they are in many ways, regular. 21/12/2012 has come and gone and the world has not ended. Christmas and New Year, public protests in Delhi and anger and outrage across the country over crime against women, the end of the year gathers speed in many ways wanted and unwanted. Year ending is a time that almost always holds special meaning for most of us and it is not always easy to go through it; in other words, the passage into next year is not always a party. Before readers read ahead, we’d like to express a hope that the coming year brings powerfully positive things for us all. That all of us together move many more steps forward and do as much as we can of all the good that we are planning and hoping for.

We invited caregivers and friends we have known over the years to take out some time and energy to read and respond to the 2010-2012 Round-up we wished to post on our website, and did post, in November this year. Happily, they did – and this is a summary of those responses from friends and supporters, it is organised according to the theme or focus of each specific response. This little bit of organising has helped give us direction and add to our evolving perspective.

Further, some folks (caregivers and others) have come forward with offers of support ranging from financial, through time, energy and knowledge, to possible joint doing of to-do’s through linking up together with us. We are infinitely grateful for all these doors that are opening and intend to explore each of them.

So here goes. Our own thoughts on these response points in blue font are also being shared with each. We have asked for your help and responses on some of these points by email / Facebook post. You could write in to caregiverslink@gmail.com and cc if you wish care.janet@gmail.com / devashrim@yahoo.com / shikha.aleya@gmail.com – Please do note that Caregivers Link is not an emergency response service.  In case you’d like to post on the Caregivers Link Facebook group wall click here.

Focus: The Caregivers Link network, awareness and engagement

  • Expand the network through different means including attempting to respond to requests for help, thus improving our reach. Continue to bring people together and synergise resources. Increase awareness of the emotional needs of caregivers and also of the demands of caregiving  for the caregiver and immediate family.

Yes, this has been our consistent effort from the beginning and will be a continuing thread running through all our plans and projects.

Matching and tracking users to resources and services and the creation of directories is a massive task. There are basic issues involved that threw up some of the first hurdles for us. For example, when we list resources or create directories, it is important to consider and state whether all, any or none of those in the list have been / are being personally checked or validated in any way by us or our network. Invariably, it becomes clear that we are in no position to check or validate resources at this stage and our only job becomes to collect and present them. It is then up to the user to check and validate these for themselves. However, this being understood, we believe that it is critical to create and make widely available – listings of resources and services across care and health challenges, local and national. Currently we have such listings on our website and we are also trying to add to and update the listing of mental health resources that we are putting together with the Schizophrenia Awareness Association.

Up ahead, our vision is to get a computer whiz to help us create a program that can do the tracking and matching needed to maintain, use and keep updating a database such as this. At the same time, we will need some dedicated resource hunters who will keep digging them up and inputting them into that database. This is a massive exercise, but we are in it and will continue to progress it the best we can. Those who’d like to become a part of the resource hunting team – please jump in. Send us an email / inbox message / Facebook wall post.

  • Continue with and expand / regularise the e-FGDs (Focus Group Discussions) as they were found to be useful and a user friendly platform where participants could interact and share in their own way, at their own time and pace. It has also been suggested that a permanent e-group for interactive discussions remain alive for participants at all times. Get doctors to participate and provide information and counselling for these group discussions.

Would love to do this. We need more help from people who are comfortable with the internet and email and are happy to do some group work of this sort. So far, when there have been e-FGD’s the process has involved:
(1)    Putting together a group of caregivers / others willing and able to engage on a particular subject for the period of time (such as a week) set aside for the discussion event. So first of all, we need groups – would those who are reading this and who would like to interact on this platform please get back to us with subjects of their choice that they would like to discuss, so that we can create these groups and the discussion events? We also request that those who can help us monitor and facilitate some of these discussions get in touch with us and become a part of the FGD facilitation team.
(2)    Introducing group members to each other prior to the discussion so that there is a sense of ease.
(3)    Facilitating the discussion – pulling together responses – keeping the discussion on track.
(4)    Analyzing issues and responses and working out ways of translating this into practical do-able deeds.
(5)    Doing those do-able deeds. (This is the hardest part.)

Apart from the responses to the Round-up – there has also been a response to our Facebook group with specific suggestions on how to manage some of the interactions and information on the facebook page to make it more useful. One of these suggestions, most possible to implement at this stage, is to set aside specific periods of time to discuss and disseminate / share information on specific caregiving / health challenges. This addresses one issue that at present much of what happens on the facebook page is random postings of varied interest. This random posting can and should continue, but the focused facebook page events are a very good idea that we’d like to start. Please post subjects / themes you’d like to see more of on the page and we’ll try to put together some of these facebook events.

  • Have physical caregiver support group meetings.

We think we will begin this soon, with small groups, perhaps in Delhi, Gurgaon, Mumbai and Pune to start with. Will keep you posted. Meanwhile those of you who are in these cities and would like to meet – please would you email / Facebook us?

Focus: The Caregivers Link operational / program(s) focus

Be clear about how we intend to support caregivers now and up ahead, explaining the modality of this support (phone / email / web resources / personalised contact etc.) Also
identify the scope of support, as some support will be appropriate across circumstances of caregiving, while other support may be relevant to specific circumstances and challenges.

The reason we’ve put this feedback point in italics is because we have not perhaps made it clear that Caregivers Link is a small start-up in progress and we have multiple challenges of our own in terms of resources, skills and infrastructure. So for example, as stated earlier, we are not an emergency response service. However, what we are is an evolving entity and the scope of support is evolving with us.

  • Create training modules and impart prototype training to care attendants through care attendant agencies; the approach should be scalability and replicability so that such efforts have a wider reach and impact. Set up trained manpower agencies region-wise. Include the training of home-care nurses from the perspective of the family caregiver – and for specific conditions specially the more widely common care circumstances such as when looking after a dementia patient at home.

We’re seriously working on this and have met and spoken to some people, potential associates, advisors etc. This is a big intervention and we’re approaching it carefully. Some of you have offered your time, energy, skills, knowledge and participation for such intervention and we are going to take advantage of your offer when things firm up at our end a little bit more. Critically, we are also figuring out a way of raising money to start this off. Yes we will be very happy to have someone sponsor this.

  • Continue to work on projects including small ventures and interventions since everything, large or little makes a difference in the overall situation.

Yes absolutely. And will keep you posted.

  • Create and manage a volunteer base, include orientation and training of volunteers into this program. Categorise volunteers into different types according to age, experience, ability and training.

This is the big ‘Aha!’ for us – we are happy to share with you that for a while we have been tinkering with ideas and options of how to work with volunteers, in our case volunteers who at the very least must go through an orientation program before they can begin working with caregivers. There’s more going to happen in this space we hope very soon. A big part of it is going to involve our working with schools, colleges, residents associations, clubs and social groups / organisations. This requires a separate and detailed post which we will share with you when a few more things at the back-end fall into place. Also, here too, some of you have expressed your willingness and desire to be a part of such intervention and we are going to take you up on this.

  • Provide counselling services – create such provisions and expand the availability of such.

Yes – baby steps are being taken here as well. Would ideally like to start a helpline counselling service in metro cities initially for a couple of days a week, and in time face-to-face counselling when we build a trained counsellor cohort.  Would welcome counsellors to volunteer their time and resources for this initiative in Delhi, Pune and Mumbai.

  • Identify and address advocacy, lobbying and grievance and redressal issues. Specifically enter the area of laws and legal provisions, rights of families and government provisions for caregivers, issues related to guardianship etc. Create awareness in the world of working professionals, at corporates and business houses with employers and employees, with the aim of focusing on care-friendly or care-sensitive HR policies. Explore the issues related to informal caregiving in rural areas.

These are large umbrella areas of work. We feel we need to slowly build up our own body of work and experience before we approach some areas such as advocacy. Working with corporates and employers is an exciting thought and we will be exploring the possibilities here hopefully in the coming year.

  • Become a one-stop shop for all crisis’ and emergencies using the network to respond to such.

This is a massive undertaking. It is perhaps also a vision of a possible future with the networking, resource and infrastructure available to successfully take up the responsibilities of such an undertaking. At present we will have to maintain a baby steps approach. But always with a look to the future and big hopes that big good things will find their way into our evolution too.

  • Create day-care facilities for patients to give family caregivers some respite.

A critical resource – very much something we want to do. This is a bit of a mid to long term goal though. Such facilities require care infrastructure that needs to be identified, sourced, put together and paid for. Possibly best begun as tie-ups and associations, or with big sponsors.

  • Look at the financial issue of care-products and costing, attempt to create a platform where products such as adult diapers, care accessories, medication etc. may be sourced and distributed at a cheaper rate.

Yes – this is very pertinent and very useful. Must start somewhere. Has been put on the list of explorations immediately.

Focus: Our updates and information sharing with the network/other ventures in the field.

  • Keep people informed of what we’re up to, not just with newsletters and reports but also brief updates focusing on the ongoing work. This way people can pitch in and help if they see a role for themselves that they are willing and able to fulfil. We can put out requests for help at the same time.

Yes. True. May still not manage to do this regularly but will be more in contact this way as often as possible. The updates may be very brief though.

  • Share our own experiences as a start-up with others who may be looking at entering this field. The aim would be to increase the body of knowledge and awareness of problems, opportunities, challenges and practical know-how and help expand the territory map. Play the role of ‘enabler’ to others setting up essential support services and systems, using our own experiences and caregivers/professional networking.

Happy to do so to the best of our experience and ability.

Further:-

Currently planning a printed leaflet/brochure presenting Caregivers Link that can be distributed or given as a leave behind in offices, institutions and organisations. Looking for a designer and then must get many copies printed.

 

Also planning a whole new website, designed to feel lighter than the current one and also coded so as to enable resource database search, perhaps have a bulletin board, maybe even chat-ability. Trying to figure out time and costs for this and someone to do it.

 

Looking at care-friendly products that we can source, market and distribute as re-sellers etc.

 

Working on an implementation plan for orientation and interaction at the level of schools and colleges both to help create a volunteer base and increase awareness of caregiving as it is for the informal family caregiver. (Probably beginning this in Pune – please will Pune-ites reading this raise your hands and be counted :-) )

 

Looking for help to build and update the directory listing of mental health resources and self-help groups for caregivers to persons with mental health challenges. (That we are doing with the SAA)

 

Finally – a week ago we put out a call on the Facebook page, telling the group we’d like to get to know everyone a little better and at a one-to-one level. However, we do not wish to be intrusive. So we are going to be uploading a short and simple form on the website that can be used as an introduction where the network (you) can share a bit about yourself and let us know if – and how best – you feel you’d like to participate in programs, projects and interventions with us.

 

We thank you all for your continuing interest and support. The thing is, its only with you, that there is an us.

2 comments

  1. Anna Singh says:

    Hi Shikha ……Its been an amazing tour of your effort from 2010 till date. My God ! I am amazed by the drive Janet aunty , you and many more have forced in this cause . My salutations to the entire Caregivers Team. I would like to offer my selfless services as a resource hunter. I will try to do my best in my capacity and ability. Awaiting the posting of the form which would enable me to contribute better. Last but not the least ALL THE BEST, ANGELS OF HUMANITY : ))

    1. admin says:

      Hey Anna – very happy to have you resource hunting with us. Will email you / facebook inbox you to coordinate and make a start :-) Thank you for your generous spirit and encouragement. Yes the form needs to go up asap – have a friend working on it, need to remind him to get on with it!

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