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 knew the solution would be to share things online, but was unsure how to proceed. My Dementia Care Notes, India website is designed for caregivers, and I did not want to confuse or dilute the caregiver focus of the site. On the other hand, my blog (this blog, where you are reading this entry) carries posts that range widely, including personal experiences, musings as a caregiver, experiences and thoughts as a volunteer, wishlists, announcements, etc. But blogs are, by nature, not so organized, and while each post does have “categories” and “tags” attached, only readers with extreme perseverance/ stubbornness are likely to reach all entries relevant to a topic.

So, I chose a different online home for sharing material with volunteers; I created a special section on my personal website 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 on my website 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. Currently, it contains the following pages (this may change).

• Resources for volunteers helping caregivers
  • Introduction: Becoming a well-informed volunteer and selecting where to help
  • The Cultural Context of India and its Impact on Dementia Care
  • Applying available dementia/ caregiving material to the Indian context
  • Available: Explanation of dementia home care in India
  • Available: Dementia Awareness Presentation
  • Available: Draft document on setting up support groups
  • Ideas: Trained attendants and respite care for dementia
  • Ideas: Mobilizing children and youth for dementia
  • Ideas: Improving dementia awareness and sensitivity to caregivers amongst healthcare professionals

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 ]

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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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About doctors, hospitals, healthcare, and a dementia care support wishlist

One thing that concerns me deeply, both as a caregiver and as someone interacting with many other caregivers, is that luck plays a big role in the quality of support received from doctors and various medical support systems. Many times, alas, it is bad luck.

There are dedicated, compassionate, and well-informed doctors who support family caregivers through timely diagnosis, sensitive handling of the explanation, and appropriate medication with due attention towards possible side-effects. They also guide the families to various support systems and counselors who can then help the families care for the patient without the caregivers becoming basket-case burnouts themselves. We also have GPs (General Practitioners) and family doctors who notice the early symptoms in a patient and alert the family about the need to check for dementia, and direct them to appropriate specialists.

But this is rare.

The Dementia India Report 2010 admits that awareness of dementia is low even amongst the medical community and support providers; some excerpts:

…there is no special emphasis on dementia diagnosis and management in the training of healthcare professionals

There is no structured training on the recognition and management of dementia at any level of the health service

Health care services remain insensitive to and do not provide the much needed information and support for carers and family members

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 home-bound, 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).

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

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.

Trained attendants and respite care for dementia: Sharing suggestions for volunteers from India

Yesterday, I shared my observations related to availability and quality of trained attendants and respite care for dementia in India (here); today, I am setting down some thoughts on what concerned agencies and volunteers can do right away to make a difference in a way that can scale up fast. I’m no policy expert, but hey, desperate people get wild ideas, and here are mine.

For those trying to help caregivers, the pathetic state of available support is disheartening. Day after day, one is forced to break the sad news to overwhelmed caregivers and I’ve seen many concerned persons getting distressed that they cannot help the way the callers (or email-writers) obviously expect them to do. I’ve felt down myself, both as a caregiver and a volunteer.

Some volunteers begin considering setting up agencies or respite care homes themselves. They redirect energy, time, and resources into trying to set up whatever is needed to train a batch of attendants, or start planning a specialized dementia care home. Often, many of these persons realize midway this is just so much work, and doing this means they cannot do anything else. They feel they are spending all their energy for something that may benefit at most 10 or 20 families, and wonder whether this is more important than what they were doing earlier. Also, being committed to a cause and passionate about it does not naturally equip one to run a full-fledged establishment for fulltime care. These volunteers/ organizations then give up, or start something that fizzles out, having lost valuable time and energy (and sometimes goodwill) along the way.

Here is what I think:

Ideally, there would be this huge nodal body that sets up gazillions of agencies that supply excellent trained attendants at very affordable prices, and also creates heaps of day cares and respite cares so that no dementia patient remains unsupported.

But that does not seem feasible, at least in the short run

We need help now. We need something to start providing relief soon, in a widespread way. We cannot depend solely on the actions of existing dementia care volunteers, already a small and over-stretched community. In addition to increasing the community of persons committed to help, we must get others interested in creating appropriate facilities.

Listening to caregivers, respecting them, supporting them

Years ago, when I was still a newbie caregiver and hadn’t realized (let alone accepted) that I’d be paying a heavy price in terms of my career, a friend/ colleague made the mistake of calling me up and asking me how things were. He vaguely knew of my mother’s issues and my problems of coping, and I therefore (I’ve always been naïve) took his question to be a genuine one, and proceeded with the answer. If a squirm can be seen over a phone line, well, that explains what I perceived, but I was overwhelmed, desperate, and here was a listener…

Or was he?

A few minutes into it, he said, (I paraphrase and abbreviate, but you’ll get the drift) “Yes, well, sorry, hmm, ya, okay, so, must be bad, huh, hmmm, yaa, so, what else is going on? Let’s talk of something hmmm, ya, well, like, well positive…so how’re things…what else…”

Utter fool that I was, I answered, “There is nothing else.” Then it registered on my slow brain that he hadn’t wanted any of this rant. He’d probably expected me to be “positive.” He’d probably just wanted a couple of good, positive sentences from me before he went on to whatever else he had called for.

A full-speed train takes a few minutes to stop after the brakes are applied; I would probably have tapered off in about five sentences but by that time he had managed to sign off the conversation anyway.

I felt bewildered and also let down. I may not have minded had he not asked at all, but asking me and then not listening…

He never called again. I don’t know whether he took a conscious decision about it; it was probably just a discomfort he felt when he thought of me, something that made him choose to make other calls instead. He probably forgot the incident.

This incident happened almost nine years ago. As far as I was concerned, I was not asking him for solutions, or even sympathy. All I did was narrate my situation in response to a question. I may have come around to the point of uttering “positive” statements that society expects, but he shut me out before that.

Overall, this was just one of the early incidents that made me start understanding how isolating caregiving could be. It is through stuff like this that I began to realize that if I talked about the realities of my life, people switched off or decided to avoid me. If I wanted company, I had to pretend my life was very different.

Trained attendants for dementia home care: sharing experiences

In my March 2011 caregiver survey, many respondents mentioned issues related to trained attendants for dementia home care. Since then, I’ve gathered some information on specific problems and wish lists, but my efforts have been slowed down, ironically, because the trained attendant who helps me care for my mother went off on extended leave

Yes, folks, trained attendants are a critical element of dementia home care.

Before I continue, I’d request you to spare a few minutes for, to share your own wish lists and problems related to trained attendants. No personal details are asked for.  Take the survey here: Trained attendants for dementia home care

Now on to briefly narrate my own successes and failures in using attendants (allegedly trained) for helping me care for my mother…and some lessons I’ve learned along the way.

As in most dementia cases, I became a caregiver without realizing I was one, when my mother started exhibiting the problems typical of early stages of dementia. As she had not reached the threshold when a neurologist was willing to give me a diagnosis, I’d just be told: “This is common among elder people.”

Because I was ignorant about a medical reason underlying my mother’s strange and difficult-to-handle behaviour, I assumed such problems were part of ageing, and wondered how others managed and retained their sanity. I did not know there were caregiving techniques that could be applied.

My mother would forget to eat lunch left for her in a hot-case, or walk out of the house and look puzzled, or get confused between dusk and dawn, and I would try to “explain” things to her. At that point, I did not even consider employing a trained attendant.

Then came my mother’s diagnosis. The doctor told me problems of “memory loss” would increase, but the nature of problems looming on the horizon still eluded my comprehension. Even so, I could see that she could no longer be left alone at home. Accusations and delusions were becoming commonplace, as was self-neglect.

Though I wanted to recruit help, my mother vehemently opposed the idea.

She (1) did not think she had a problem (2) refused to have anyone around her all day (3) felt I was neglecting my duty as a daughter if I wanted to go out of the home instead of being with her all day. She found fault with every maid I suggested.

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.

Meanwhile…minor updates and a small survey

After that marathon blog-fest in January, I thought I’d take time off blogging to recharge, and to make sure I have something to say before I do any more blogging.

Here’s the status: recharge–not done yet; material to say–building up already.

In the last two weeks, I had two major opportunities to interact with caregivers and others concerned about dementia care. One was as part of a 5-day Dementia Management Training Program conducted at Bangalore, where I attended some sessions and also presented a topic “Care of Loved Ones in Home Setting”. The other occasion was when I coordinated/ conducted a support group meeting for caregivers.

Thanks to these stimulating interactions, my mind has a lot of thoughts flitting around. I’ll wait for them to settle down and resolve into shapes, but it is quite possible that I’ll take on a week-long blog-a-day in March, if I find I have enough to say and if I have managed to recharge myself by then (using dark chocolates, fantasy books, stuff like that)

Meanwhile, I’d love it if you can help me by participating in a simple single-question caregiver mini survey that will barely take a minute. It does not ask for names or e-mail ids, but only one response is accepted per computer.

The survey is available at this link. Please do participate.

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Understanding, believing, denying

Because of my concern about dementia awareness in India, I participate whenever I can in awareness programs, talking to people about dementia and caregiving.   The Dementia India Report 2010 says, “Awareness of dementia in India is low.” I see this as a polite understatement in a country where people usually fail to recognize dementia as a medical problem because they see the symptoms as either normal old age, or a mental problem (read: madness). Many (most?) doctors are not alert about dementia.

Awareness of anything, as I understand, needs both information and belief.

Usually, when we explain dementia, the focus is on disseminating information (and maybe case studies/ stories/ incidents), assuming that people exposed to the facts will believe them. But sometimes, even after hearing or reading about dementia, people don’t register what it is.  Information percolates only if people are willing to believe it, and many things come in the way of believing that dementia symptoms are caused by medical problems.

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.

If I could do it all over again

A natural part of retrospection is wondering how things would have been different if, some years ago, I had known what I know now about dementia and caregiving. This is not an exercise in regret or guilt, more a way to deepen my understanding of the past, and also, perhaps, to help me answer questions when neo-caregivers ask me about the journey ahead of them.

Some things are obvious. I should have learned more about dementia and caregiving as soon as it became obvious that my future was intertwined with these. I should have built up my toolkit, connected with the community, shared my experiences and heard others share theirs. I should have been more patient, more loving, more understanding….

But one thing does not come out in this list, which is to me, more important. I am not sure a neo-caregiver, dreading the role, would even bother to hear me talk about this – but here it is: given a chance t do it all over again, I would have more fun-times with my mother.

when every one is an expert

Looking back at the years of caregiving, one stressor I remember is the unsolicited ‘advice’ (often more like admonitions) I kept getting from strangers and distant acquaintances. Everyone took it upon themselves to tell me what to do, how I could be a better daughter, why I was not good enough, what my ‘duties’ were, what my mother wanted and enjoyed and needed (often, these were people who barely knew me or my mother). It overwhelmed and frustrated. I felt defensive at times, intruded upon at other times. I did not know how to process this abundant flow of input.

Here are the criteria I evolved to handle this unsolicited flow from people I had not asked for help, and who barely knew me:

• Are the advisers experts in the area they are advising on (medical professionals, experts in caregiving, in nutrition, exercise, rehabilitation)
• If they are not experts, do they even know what my mother suffers from, or the full list of what I am doing and why?
• If they are not experts, do they have a stake in my mother’s welfare, and would they be willing to help implement what they are suggesting?
• If they are not experts, and if I fall ill thanks to the workload they are proposing, will they take over caring for my mother in the meanwhile, or look after me when I fall ill?
• If they are not experts, have they experienced a parallel situation, and did they do themselves what they are proposing I should do, and did they remain sane while doing it?

If the person advising was not an expert, not someone who understood my mother’s exact problem , not a stakeholder or a volunteer, and not someone who had experienced and gracefully handled a similar situation, I took the input quite warily. I listened politely; if it needed checking out with an expert, I did so, otherwise, I set it aside. Handling advice became  amazingly simple after I set these criteria

The inflow of advice is near absent now.  I can see the discomfort of would-be advisers if I describe my mother’s condition. Looking back now, I suspect a lot of advice I got earlier was not about my mother – it was a statement of how the persons advising me wished to be treated if they were in place of my mother (as they understood it). Perhaps many of those authoritative statements were seeds they sowed in the ether that connects all beings, in hope that their children would behave that way when the occasion arose. And now, when it is too painful to picture themselves so helpless, they have no advice for me, only avoidance.

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