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.

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Listening to caregivers, respecting them, supporting them

Years ago, when I was still a newbie caregiver and very overwhelmed, 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 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.

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Finally, some clarity about the diagnosis

After our interaction with the second specialist, my mother was understandably quite upset with neurologists in general, and not willing to venture out again.

Our GP, who was also a neighbor and knew us quite well, had no suggestions about what we could try (other than try another specialist). He said the problem was most probably neurological, but did not give a name to it (I think he suspected the diagnosis, but felt it had to be delivered by a specialist).

My mother, meanwhile, tried a round of homeopathy, gave up. She would tell friends about the walking problem, and even if she didn’t, it was visible enough. A family friend brought along a doctor sister, who examined my mother very carefully, and then said she suspected Parkinson’s. This lady was working as a volunteer doctor in a village and she told us that problems like my mother’s were often undiagnosed. She reiterated that people usually labeled such problems as ageing, but these were not ageing, and we would have to take care of her as the problem would get worse. This was a short visit; perhaps she would have said more if we had met her for a longer time.
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When the specialist laughed at her

The first specialist we consulted may have shrugged off follow-up visits, but his manner had been so unsympathetic and the information he gave so scanty that we were not sure we’d done enough for the situation. On the other hand, the whole experience had also left all of us–and especially my mother–reluctant to go to another doctor. My mother felt insulted, and probably was shaky inside because she was experiencing more cognition problems than were obvious to us. Now she did not feel she could talk to a doctor…

It took my mother a while to agree to consult another doctor. Her walking problems were alarming by now, and her memory loss quite obvious within the family. We finally narrowed down to a hospital that specialized in neurology, and where every doctor was a superspecialist. Surely my mother would get suitable attention there.

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Our first consultation with a specialist

My mother’s initial problems were mainly related to balance, though her memory loss had also started by the time we reached our first neurologist. Her balance and coordination problems (ataxia) were visible, while problems such as memory loss, disorientation, and inability to do things were in a very initial state.

I was only peripherally involved in her health at that time; I did not see myself as someone responsible for her health and helped out when she asked for help. My parents were independent, and would have resented any “interference” and I was engrossed in my life. Most of us do not get involved in parental health unless pulled into it, which often happens only after symptoms have crossed a threshold of alarm.

My mother complained of minor dizziness problems in 1991/ 1992. As she had a medical history of cervical problems, and the dizziness seemed minor and very occasional, she was not too concerned. In 1992,when I’d gone out of town for a trip, my mother drove to Pallika Bhawan, then visited an emporium on Baba Kharagh Singh Marg, where she swayed when climbing one of those arty spiral staircases. She fell, hurt her head. There was plenty of blood. A good Samatarian rushed her to a hospital where they stitched up in her head. She managed to remember the home phone number, and my father was contacted. The doctors did a CT scan which was normal,and their report mentions no “age-related” anything in it.
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On diagnosis, on doctors who may not know or care

One thing that bothers me is this whole business of diagnosis of dementia and how often it gets delayed and how different specialists say different things and confuse us and delay us in getting started in adjusting our lives to this reality…

…and the problem continues even after diagnosis, because when we take the patient to doctors for other ailments, many doctors and medical staff do not understand how having dementia may affect the patient’s ability to communicate problems or explain what happened.

The Dementia India Report 2010’s foreword by Dr. K Jacob Roy states:

It is estimated that over 3.7 million people are affected by dementia in our country in 2010. This is expected to double by 2030. Despite the magnitude, there is gross ignorance, neglect and services are scarce for people with dementia and their families.

Dementia diagnosis is often delayed for multiple reasons.
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Returning with a brief update, and thoughts on brain bank

So, it’s been three months since my last blog entry. This, after I started the year with a daily entry for one whole month! Ah, well. In software project management, there is a saying: How does a project get to be a year late? One day at a time. That’s what happened here, too.  And after the gap crossed a month, I told myself every day, what difference will one more day make? So it crossed two months, and almost crossed three months.

The last three months have been hectic for me, but dementia and caregiving have continued to form a major part of my life. If anything, the share of my time and energy in these has gone up. It’s just that I could not gather my thoughts enough to make a blog entry.

Let me start with one major event in dementia, the World Alzheimers Day, observed world-wide on September 21. The events included a memory walk, presentations on dementia, and an interactive session with doctors who talked about dementia and answered questions. And Dr. Shankar gave a presentation on Brain Bank and its importance in research.
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When families need attendants to help them care for dementia patients (India)

One common problem caregivers face in India is finding nursing attendants who will take care of the dementia patients. Such assistance is needed when the dementia patient is in the middle or later stage and cannot be left alone because the patient may need help with activities of daily living, or is otherwise prone to wandering, and the family members cannot do this kind of care giving full-time.

In India, people employ a untrained maid in the beginning for such help, but once the patient starts getting incontinent or otherwise difficult to handle, we usually get a nursing attendant from a home nursing agency.

The problem is, even ‘trained’  attendants are rarely trained to care for dementia patients. Most attendants have undergone a week or two of training, and while they know about first aid, home nursing and bed sores, they do not know about dementia. So, faced with a dementia patient’s difficult behavior, they take every frustration, every anger, as a personal insult. When the family members say this is a disease, they do not believe it. They get upset and this comes out as either agitation with the patient, or depression, and the situation escalates. Most stints by attendants are short-lived and end with sorrow and bitterness as the attendants cannot cope with the situation.

Based on my experience, and experience of other caregivers I have talked to, here are some suggestions for family members who need attendants to care for dementia patients:

Gather resources: Every city has some resources that can help: To get information on support groups, societies, nursing agencies that can help you understand caregiving better and know where to locate attendants, or equipment and supplies you need to caregive, you can:
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Medical Research on Dementia, Brain Banks

A slight diversion from the main theme (dementia and caregiving) that I am exploring–this is about the brain, and how doctors need brains to study and what we can do about this.

We all expect doctors to cure our health problems, or at least treat them and make them bearable. We go to clinics and hospitals hoping that medical professionals will have solutions for problems our bodies throw at us. We expect them to be gods.

How do these gods get their toolkits? How do they know what a set of symptoms means in terms of what our body is doing and why? How do they create drugs and decide on surgery and other interventions to resolve these?
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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, 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 the local dementia 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 the coordinator 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.
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