Living with Dementia, awareness, images, stigma, quality of life: a perspective from India

Every September, those of us whose lives have been changed by dementia find ourselves introspecting about the environment around persons with dementia and their caregivers. We find ourselves building up hopes that in future, the dementia and care situation will have more dignity, an improved quality of life, and more support. Years of being the main caregiver for my mother has made me deeply concerned about dementia awareness and care in India, and I, too, ponder on these issues.

A few weeks ago, I saw a report that discussed how many existing “frames” used to depict dementia are negative/ unproductive and how alternate frames should be used to depict a positive picture and convey the nuances. Then, as I was still piecing together my thoughts on the matter, I realized that the theme for World Alzheimer’s Month 2012 is “Living together”. Alzheimer’s Disease International also plans to release a report on the stigma aspect. I look forward to seeing that report.

(BTW, for those who unsure of the relationship between dementia and Alzheimer’s : dementia is the name given to a group of symptoms, and Alzheimer’s Disease (AD) is the most common–but not the only–disease that causes dementia. Most dementia-related work is done under the Alzheimer’s umbrella by associations with names that include the word Alzheimer’s (but may not include the word dementia), a nomenclature that sometimes confuses and ends up excluding those non-AD dementia caregivers who assume the material/ advice will be AD specific 😦 )

Meanwhile, I’d like to share have some thoughts, mainly on how dementia/ care experiences are influenced by the culture and images around dementia, how countries differ, and some lessons for the concerned persons, especially my peers in India. These are just my personal thoughts, not an expert opinion nor a “report” based on any “study”…

…and I’d love to hear your thoughts, too.

I see persons with dementia as major stakeholders in any dementia-related strategy. We already have millions of persons with dementia who try to navigate their lives in spite of the disadvantages dementia imposes, and we have millions of caregivers who try to understand and support them (but don’t always manage to). Medicines and research are also important, of course, and must go on in parallel, but medical research cannot be the sole focus. A world without dementia is pretty far off, because hey, we have millions with dementia already here amidst us, right? Also, current medications are few, not applicable for many diseases that cause dementia. These treatments work on some persons but not others, have side-effects for some persons, and do not reverse dementia. It will take years of intense and sustained research to create enough effective and safe cures adequately tested on humans.

In the meantime, many people continue to “Live with Dementia”.

So I really like this year’s theme: Living with dementia. I like the fact that it focuses on people, on their situation and surroundings, and shows sensitivity to the discrimination and stigmas they may be facing. Living with dementia seems like a wholesome focus. Not struggling with dementia, trying to “defeat” it, or “surrendering” to it or “giving up” or being seen as “negative” or “lacking faith.” Instead, accepting what is there, working with what can be done, focusing on improving quality of life, retaining connections, leading enriched lives to the maximum possible extent.

Dementia care cannot depend just on medical support. It cannot even depend solely on the institutional infrastructure available; most of dementia care occurs in home settings. The care therefore depends a lot on the environment around it: the combination of images and stories around dementia, such as how society perceives the symptoms, the conventions for interacting with people showing such symptoms, the available body of caregiving knowledge, perception of the role of doctors and medication, and so on. Published caregiver manuals and guidelines are only a fraction of the environment around dementia care; the overall environment combines multiple factors like culture and religion, information available in articles, credibility of sources, newspaper depictions, depictions in fiction, mythology and movies, the history, and the societal conventions of how elders and people behaving strangely and differently are treated.

Oh, and also on whether that society even acknowledges such persons openly or whether it expects families to hide them away 😦

Let’s consider the dementia journey, which typically spans years, even a decade or two.

Read the full post here

Keeping her happy: Challenges of late-stage dementia care

My mother has slipped down some more on the incline of deterioration in her late-stage dementia, a slipping so gradual it is difficult to register it as it happens. But it was just two months ago that she enjoyed the story I was telling her every day and then the frequency tapered slowly, and now it has been several days since she indicated she’d like to hear the story. She sleeps most of the time, often not opening her eyes even when we feed her.

Around two months ago, when asked a question, my mother sometimes nodded or shook her head, or turning her face away. Once in a while (if the question was very simple, like, “Are you feeling cold?”) she’d even say a word or phrase (Haan) in response while nodding. She would nod vigorously if I asked her whether she wanted me to talk or to tell her a story, but sometimes she’d shake her head to indicate she wanted to rest instead.

We deciphered (hopefully correctly) her choices and her moods by asking simple questions and watching her body language.

When not sleepy, she enjoyed company and people talking to her , though it was often clear she did not fully understand the content of what was being said. For example, I don’t think she understood the details of the story (and it was always the same story), but she understood that someone was telling her a story, and showed her liking for that companionship and affection.

Now, it is increasingly difficult to understand her desires because most of the times, she does not respond (through words or even body language) when asked a question.

After her last round of blood tests and checkup, the doctor told us she is doing well as far as the physical parameters are concerned, and that the minor imbalances (the sort she has often had before) were within acceptable range and not sufficient to explain the change we were seeing. He agreed that she is declining in terms of her responding. “What can we do?” I asked. He explained that such gradual deterioration was natural given her dementia, and there was nothing to be treated as such. “Keep her happy,” he said.

I don’t think we human kind are very good at being happy. Or keeping others happy.
Read the full post here

Being the Wind, being the Sun

I read a story long ago of the Sun and the Wind arguing about who is more powerful.

Then they spot this man walking on a road below, wearing a cape, and decided that whichever of them could make the man take off his cape was the more powerful one. Wind took the first turn, and blew a gale hard on the man, hoping to force the cape off him. The man only drew it close around him, gripping tightly like his life depended on it. The harder the Wind tried, the tighter the man clung to his cape. Then the Sun took his turn, and shone gently on the man, and the man relaxed and took off his cape.

Of course, the story doesn’t make all that much sense if we factor in that the Wind did the only thing it could, and so did the Sun. But I always think of this story when I remember my years of caregiving for my mother.
Read the full post

The unexpected quality of openness

One of the loveliest parts of starting “fun” time with my mother was the way I began looking forward to that time slot with her. I didn’t have to be competent all the time, or keep trying to improve things. My need to “preserve and protect” my boundaries dissolved, too.

Strange how, after decades of establishing a boundary with the parents to define oneself as an individual, it is only when those boundaries dissolve that one finds  the best of oneself….

Care is often not seen as related to fun. I definitely did not think of “fun” for years. Oh, I would try to talk to my mother sometimes, but it didn’t quite work out. For one, I lacked the skill to orient with and feel comfortable with her view of reality. And another, I always had a agenda, even though I wasn’t aware of it myself, and that agenda was to make her accept her situation and improve.
Read the full post

Enjoying fun time with my mother

Here’s my mother’s favorite story: There were four young Brahmins who had spent years studying in an ashram, and finally their guru told them they were ready to go out into the world and use what he’d taught them. Use with caution, of course. And as they walked across the forest they saw the bones of a lion scattered on the grass, and decided to try out their skills on it, taking turns. And then, stuff happens.

This is a story from the Panchatantra. It has a moral. It has a lot of great graphic pictures in the large-print version of the story I have.

Have you heard the story? How many times?

Ever so often, I ask my mother whether she wants to hear it. If she is sleepy, or unwell, she shrugs or ignores me. If she is awake and happy, she nods her head with the sort of eagerness one expects in kids hearing their bedtime story. And I begin talking…
Read the full post

A year later: One year of care for a bedridden mother

Last October, my mother became bedridden, a consequence of the progression of her dementia. Frankly, I had always dreaded the possibility of taking care of someone so fully bedridden, and everyone I knew dreaded such a state, too. With a year over, I guess it’s time to share how she reached the bed-ridden state and how home care for this has been this last one year.

Looking back to the months before she became bedridden, I am surprised we didn’t realize how much she was deteriorating. She was facing obvious problems while walking; she would not lift her legs, even on being prompted. She would drag a leg only after a lot of coaxing, not lift it. Sometimes she would move the same leg twice; for example, she would move her left leg twice while the right leg stayed back, and we had to yank her upright or she’d have fallen. Every trip to the bathroom was an ordeal for her and for us, and soiling became common. She reduced speaking, and barely showed any interest in anything. We hoped she would improve, and kept trying to talk to her, playing games, and so on, telling ourselves that she was tired.

On a day in late September, while sitting in a chair she fell sideways at a strange angle and bumped her eye on the chair’s arm in a contortion a circus performer would have envied. The eye turned alarmingly bloodshot; frightened, we called the doctor who prescribed eye drops to start on and then came for a visit. She examined the eye with her torch and told us she didn’t think there was any deep injury, but recommended we get my mother checked up the next morning by a specialist who would have the right equipment to do a proper check. So next morning, there we were, at a hospital, my mother in a wheelchair, flanked by us.

Everyone at the hospital was very nice to us. The attendant who pushed the wheelchair talked sweetly to my mother, the receptionist talked sweetly, the nurse, the doctor, the doctor’s intern, all were extremely helpful. My mother looked piteously at them and held out her hand; by turns, they took her hands and squeezed it reassuringly.  We confirmed that the injury was superficial, and that nothing needs to be done, and came back.
Read the full post

Ramblings on love, hate, and a life worth living

February has been a mixed month for my mother, the most painful part being when she went down with fever but could not tell us where the pain was. Being a dementia patient in an advanced stage, she cannot communicate her problems to us, which means we have to be detectives. Much investigation and deduction was attempted, without success, medication given to control the fever. Two days into the problem, she broke and swallowed a tooth–ouch! She broke another tooth again, the next day. Ergo, a tooth infection. Fever’s under control, and a dentist was requested to make a home visit to assess her dental status 🙂 A major project is now to be planned–a trip to the dentist to remove another tooth that is tethering on a breakdown, and to clean up the stuff left behind by the two not-so-neatly broken teeth. That she is fully bedridden makes the challenge more, well, challenging. Ah, well.

But what’s prompted me to write this blog is something quite unrelated, actually, a few unrelated things, that happened these last two weeks.

Firs, I’d like to share a memory dating around seven years ago. Seven years ago, I was still naive about dementia and how it affects people, still thinking increased memory loss was like losing ten keys a day instead of one. My mother was in her own denial mode, unwilling to admit to any memory loss. The world around her (as I can see in retrospect) bewildered her, and she was not going to tell anyone that. She was a fighter, she was. Often I saw her writing with a fierce concentration in a diary, and snap it close when I entered her room. One day, she left it open near her breakfast tray, and there it was, written with a red pen, written so angrily that the pen had torn through the paper. There were many broken sentences on the page, and I stopped short when I saw my name. She had written that she hated me, written it again and again and again, and written about others she hated, and at the end, there was: I hate hate hate the world.
Read the full post

Caregiving, identity, impermanence

As caregiving has occupied a chunk of my timeshare, mind-share, emotion-share, my sense of identity has become bound with this role. I find it affecting all my other roles, and it remains in my mind like a persistent buzz, even when I am not handling any related work.

For a while now, this has puzzled me.

First off, there is nothing unique about handling multiple roles. All of us juggle roles, and cope with it. Even a school-going boy balances between roles: student in class, boy playing cricket, participant in a painting competition, fond (or not so fond) son, polite son of colleague at his father’s office party, and so on. When older, the balance moves to balancing job roles (boss, subordinate, colleague), family (parent, child, sibling, spouse), participating in community activities, and so on.
Read the full post

Palliative care in dementia

In a support group meeting I attended in December 2009, I was introduced to the concept of Palliative Care and how it may be applied to a patient with dementia.

The thrust of palliative care is ensuring the patient’s quality of life, and keeping that in focus while taking decisions such as how aggressive medical treatment should be.

A few years ago, I had assumed that medical intervention is a must. If one has an infection, an antibiotic course is inevitable. Last year, in September, my mother’s lab results showed a urinary infection, and the doctor started her on an antibiotic, based on the culture report. It did not work. Again, based on the fresh culture, a new antibiotic was given. Again, no effect.  Medication for the infection was discontinued finally, on advice of the specialist, after confirming that my mother was not exhibiting any symptoms of the infection (asymptomatic infections are often not treated).

While we were lucky that the infection was asymptomatic and treatment was not necessary, the incident still left me shocked. I had not envisaged a situation when, despite the sensitivity report showing the antibiotic was suitable, the medicine would not work. It had not occurred to me that medicines worked only because the body processed them in a way that allowed them to work…that the body can reach a point where it cannot use the medicines fed to it. Suppose, I thought, the infection had not been asymptomatic? Would the treatment have become increasingly aggressive? What is the trade-off between suffering symptoms of a disease as against the stress on a tired, aging metabolic and excretory system which is plied with stronger and stronger medication?

As my mother becomes frail, I can see a number of such trade-offs that will need to be made. She already has swallowing problems, and these are going to increase. Aspiration pneumonia is likely to occur. She is bed-ridden, and though we are using an alternating-pressure air mattress, we are apprehensive about bed-sores. Then, there are other infections, like chest infections, that can occur however well we guard her. There may be a stage when she cannot swallow enough food to sustain her. For all these situations, there are aggressive approaches,but these do not always work, and sometimes they worsen the situation by introducing other problems.

As a lay person I know very little of the trade-offs, but I am keen to understand enough so that when a doctor suggests something I can ask the right questions and understand how the treatment helps, and how it may not help. The concepts of palliative care as applied to dementia seem relevant and worth studying, and I am searching for comprehensive documents that discuss these.

My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes


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!

Moving forward as a caregiver, accepting new realities

I use this blog as a means of introspection, mainly with respect to my caregiving role and its impact on my choices and attitude. As January draws to its end, so does my month-long one-blog-a-day exercise it is time for me to consolidate my thoughts and get ready for the year stretched in front of me.

A number of my blogs so far have described the current status, and examined the past to see what  I did, and what in hindsight), I would do differently if life pressed rewind. And it now makes sense to see what lies ahead to incorporate all I discovered about myself into my future.

One lesson I have learned is that there are no easy answers for what is right or wrong, but being better informed about the various option, and their pros and cons, will allow me to make choices I remain comfortable with, even in hindsight. So yes, I will read up more on topics that are relevant now.
Read the full post

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.
Read the full post

there and yet not there

Nowadays, my mother sleeps for most of the day, and the rest of the time, she looks sleepy. I have tried holding her hand and talking to her, she smiles lazily, sometimes utters a word or phrase, and then closes her eyes.  If I ask her whether she is sleepy, she nods her head.

This is not a sudden change, but it took me a while to register this new ‘default’ state. I realized yesterday that we had not played games with her for a number of days, because whenever I suggest a ‘game’, she shakes her head. I have managed to make her count my fingers, or identify colors and objects, but even that seems to tire her, and so I have to stop after a short while.

A year ago, she would do small jigsaws, place rings on a rod, and play games where  she recognized or matched colored pictures. She saw albums and commented on them. We used picture charts. She even read a few phrases from a large-print Panchatantra book.  She could read aloud letters from her grandson (written in simple sentences, printed out in large font). She practiced her signature every day, and sometimes managed it almost correctly.
Read the full post

love, without the trapping of a gift

A very interesting part of sharing experiences through blogging is that I get to connect with other caregivers, many of whom I would never have met otherwise.  On one of my recent blog posts, for example, I got a comment from Lori, who blogs about her own experiences as a caregiver at Alzheimer’s Speaks, and, while going through that blog, I found my way to a few other interesting blogs, such as the blog of Laura Bramly. They have recently been sharing their perspective on giving gifts for dementia patients.

Reading their blogs made me think of how my own gift-giving habits have changed over the years, with respect to my mother.

When I was young and in school, I would save my pocket money to buy a gift for my mother’s birthday. The gift was always a cotton sari that I would choose myself, and often it cost me the pocket-money of two or three months. I used to feel very great when she wore the sari I had presented to her (and told people that the sari was a gift from her daughter).

Once I began earning, and was living away from home, the occasion for the gift-giving became my visits home. It was still saris, sometimes more than one, handpicked to match her tastes. But sometimes, instead of a sari, I would buy her an embroidered shawl, or a special type of handbag.
Read the full post

A new phase of caregiving: a bedridden mother

I find myself strangely shy as I try to act out on my intention to blog every day through this month; as part of my attempt, I am wondering how I managed it last year, and I am surprised to find how very different my life is now.

My overriding mindshare, both last year and now, is caregiving, but the texture has changed completely.

Last year, I was busy accepting that dementia had altered my mother’s way of talking and responding, and that the changes in her memory and abilities (and the frustration they caused) were the main reason her behavior required a new paradigm of interaction. My focus was two-fold:  one, creating a method of interacting that took her reality into account; two, introducing whatever was possible in her days to stimulate her mentally within the bounds of her abilities, while making sure she had enough ‘successes’ to enthuse her to keep doing her best.

Over the year, on the plus side, we found that the behavior problems most caregivers face (and that I faced earlier), vanished and everyone was, consequently, more content and less stressed.

However, dementia is a progressive disease without a cure, and progress it will, whatever you do. The pace may vary, and the specific of the sequence of deterioration may vary, but the direction is the same: downhill.

And so, by the end of the year, my mother reached a completely bed-ridden state. She barely talks, and while we are trying to see whether any medical/ nursing approach can help, the overall thrust of caregiving has changed. While earlier, too, we were focused on making sure she is comfortable and feels secure and loved, this is now a major part of the approach. That, and trying to ensure we understand every clue about what she wants or whether she is in any discomfort.

For example, while feeding her (food has to be spooned in her mouth), we have to make sure she is swallowing it properly, and sense whether she wants to eat more or not (check facial expression, check burps, check that turning away of the face or the opening of the mouth).  She does not tell us when she is cold, thirsty, or in pain — again, body language is all we have.  She sometimes nods or shakes her head if asked very simple questions, but most of the time, she looks somewhat blank. For bulk of the day, she sleeps.

Yet, despite this significant deterioration, this extreme helplessness, she responds to affection, and is is both easy and fulfilling to given her the emotional company she wants. Sometimes I find myself just holding her hand, not speaking, for several minutes, without thinking (as I would have earlier, and as an observer may feel) that I am ‘wasting’ my time. She cannot eat her food herself, but when I put my hand in hers, she grasps it back with a strong grip and sometimes even pulls my hand to touch her lips, as if for a kiss.

I have not fully re-adjusted to this new phase of her dementia, but it is not as difficult as I thought it would be. Possibly, she is being productive in a meaningful way, because all of us around her find ourselves more able to give and accept love, at least while we are with her.

My blog entries of my experiences of looking after my bedridden mother(she is in late-stage dementia) are available here: Late stage care (Caring for mother).

Resources to understand late stage care are available here: Late-stage dementia care page of Dementia Care Notes


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!

ups and downs as part of caregiving fun

At the toy shop, as I looked around for board games I could play with my mother, the shopkeeper was most helpful. Chess? Scrabble? Err…no. Ludo…hmmm… I couldn’t figure how I’d explain the rules to my mother…so, thank you, but no.

The game had to be simple enough in terms of its rules and visually, and it should work well with two players. Finally, I got us a Snake and Ladders.

My misgivings began soon after I left the shop. Snakes and Ladders is not exactly a high-skill game (a plus), and progress depends on luck (could that be a minus?). I could end up winning, or I would have to be very careful not to win. She may find the sinuous snakes alarming if her token had to slide down to a lower square.
Read Read the full post