Human costs of concealing a dementia diagnosis

Sometimes, even after a doctor has confirmed that a patient has an irreversible dementia, the doctor may not tell the patient or family about it, thinking there is no cure, so nothing can be done, why upset the family unnecessarily? The note below expresses my view on this. (I am not talking of situations where diagnosis is delayed because some doctors do not know enough about dementia, which is a vast topic of a different nature)

Doctors sometimes debate on whether or not they should inform patients / their families that the patient has an irreversible dementia. Some feel that since there is no cure for dementia there is no point in communicating the diagnosis (they feel it would be disheartening, or pointless). Others are confused on what is right (to tell or not tell).

Here’s a fact worth considering: knowing a diagnosis doesn’t just enable a patient to get medical treatment; it also helps everyone concerned to see the patient’s behaviour and deterioration in the proper context and make changes to improve the overall quality of life.

The fact is that the patient may be worried about what is happening to his/ her memory, abilities, emotions; the patient may be scared, isolated, angry, unable to cope.

The fact is that the behaviour of dementia patients, if not understood, often also bewilders and hurts people around the patient. Families undergo emotional pain and conflict. They sometimes even split up or fight legal cases because the patient misunderstands/ forgets things, says wrong things, flings accusations, takes wrong decisions, gets violent, or even acts in an uninhibited or “vulgar” way. Such painful situations could have been avoided if family members had realized that the behaviour was because of a dementing disease. Family fortunes are sometimes squandered because families, unaware of the dementia, let the patient take major decisions.

Essentially, not knowing that the patient has dementia means that families continue their old ways of interacting with the patient, which often makes problems worse for everyone concerned.

Many families feel very upset when they realize later that their doctor had known about, but chosen to conceal the dementia diagnosis. Family members deeply regret years wasted in bitterness and bewilderment which knowledge about dementia would have reduced; they continue to feel guilt about things they said or didn’t say, things they did or didn’t do, for years after the patient’s demise.

On the other hand, families aware of the diagnosis are able to change their ways of talking to and helping the patient. They are able to arrange things so that they and the patient can enjoy what is still possible rather than only notice the reduction in capabilities. All this improves the quality of life of the patient and the family, even if the underlying dementing disease cannot be cured.

Families aware of the diagnosis are also able to re-arrange their lives to minimize the impact of dementia caregiving on their other responsibilities. They can plan for the caregiving required across years by rearranging business and personal commitments, relocating their home, changing jobs, deciding how to share work with siblings, etc.

Then, of course, let us consider the patients’ right to know, especially as they may be worried by what is happening to them. A lot of patients diagnosed early have talked of the sheer relief of knowing that there was a reason they were facing the problems, that merely knowing a diagnosis reduces their stress and makes them more capable of handling things, even if there was no medical relief possible for their form of dementia. They feel better off knowing the diagnosis though they may not always remember it (thanks to dementia).

I believe the debate on whether doctors should reveal the dementia diagnosis is not confined to India, it exists in other countries too. Perhaps some doctors don’t understand the human cost of their silence about the diagnosis; to these doctors, if there is no medicine, there is no point telling people of the problem. Their concern centres on only the medical aspect, and they view the debate of whether to tell or not as “academic.”

Currently, even if the doctor has figured out that a patient has an irreversible form of dementia, the doctor may or may not tell the family; the concealing or revealing of the diagnosis depends on the individual doctor’s conviction about revealing the diagnosis, and how knowledgeable and sensitive the doctor is about problems beyond the ones medicines can solve. The problems of living with dementia, so to say. Not just the academic listing of symptoms, but the facing of the problems in real life. Currently, go to one doctor and you will get appropriate information and support; go to another, and you may hear something wishy-washy about how such problems happen to some people when they age.

Ideally, it would be great if patients and families were confident of some sort of minimal level of information and support from doctors, regardless of the doctor’s personal convictions.

From what I remember, some decades ago, there was a similar reluctance amongst many doctors regarding revealing a “cancer” diagnosis. That has changed, possibly because cancer has been “de-demonized”.

Regarding dementia: maybe if many patients and families describe how knowing the diagnosis improved their quality of life significantly (even though dementia cannot be cured), more doctors will appreciate that patients and families are stakeholders who need to know what is happening. They may evolve appropriate ways to convey the diagnosis and related information, discuss these, refine them. And maybe even create, as a community, suitable guidance that all doctors will conform to.

Definitely the patients and famililes would be better off for it.

This is my opinion; I’d love to hear your views.

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The turning point, and becoming proactive

Thanks to Internet, by the time I moved along with my mother to Bangalore, I was reasonably informed about how to communicate with my mother, and how to help her. I was also lucky that I’d managed to get a full-time person for her in Bangalore; I had not managed to do so in Delhi. As I described earlier, the one-bedroom apartment for my mother and the full-time attendant was set up specifically so that it was both roomy and safe and exactly met all that my mother and her attendant could need. There was some language problem because attendants here were not that good in Hindi, but I’d created a phrase book of sorts, and would supply each attendant with a couple of Kannada-Hindi books like Rapidex. I also made sure that the attendant had enough to read/ amuse herself.

Yet, things were still not working out. There were episodes of rages and accusations by my mother, and attendants were unhappy, too. I would spend hours with my mother, and most of these went listening to her unhappiness and complaints about the attendant, about me, about what visitors said, or things she imagined because of what she’d been told by visitors or had imagined in her deluded, jumbled-up reality. I would end up spending most of my time calming her, but soon after, she was back to her agitated state. Sometimes, she was depressed because she did not understand why she was not “normal”. There were days she seemed happy and calm, and I noticed these were days when she spent a more structured day with less interactions or stimulus.

A new place, a new start

A major event had been scheduled in 2004; it was the year we moved from Delhi to Bangalore.

All my childhood, I’ve been on the move. I changed eleven schools by the time I completed schooling, and changed far more houses. School friends were made and dropped as I moved from place to place. Most of my store of books, gathered lovingly from saved pocket-money, had been lost in one such move. My school certificates and papers of the “less important” nature (that GK quiz prize, that nice class 8 report card, those mementoes from one school, those letters from school friends) had similarly been lost. Moving could hurt. I knew that.

I belong to Delhi. I’ve lived there bulk of my life, and I love it, smog, smoke, fogs and summer loo (hot winds) and all. My college friends were based here, and I had precious little friends left anyway. I knew no one in Bangalore except for some relatives. I’ve never lived in South India, I do not know the language, I am a roti-eater, not a rice- eater. If I had a choice, I’d have stayed on in Delhi myself.

Reshaping career and identity

Things did not improve after the initial adjustments and it slowly dawned upon all of us that the responsibility of looking after my mother was not going to be that simple, solved with shrinking-out-of-her-view and take-an-episode-at-a-time. This was an ongoing project.

My husband’s work involving a lot of travel. My son was in his critical years of schooling (close to the board exams state). It therefore seemed natural to me that I should assume more of the work required to cope with my mother’s situation. Besides, I knew her better than hubby and son. I was her closest relative, and had lived most of my life with her or near her, and was best tuned to understand her.

I was working from home anyway…

Paring down to essentials

The process of adjusting life to cope with my mother’s situation began when her confusion and memory loss started becoming visible in longer interactions, well over a decade ago. She had not been diagnosed at this time (though we had been visiting neurologists) and we made these adjustments in response to her strange behavior and our failure to reach her through reason and negotiation.

My main focus of adjustment at this point was to create an environment that minimized her rage or frustration cycles. This was, I confess,  not as part of some well-thought out, compassionate and caring strategy, but a form of self-preservation. There was an air of helplessness and frustration. We had no idea she was suffering from a medical condition. Her “unreasonable” and “dictatorial” methods seemed parental meanness, of the sort movies depict, and I was trying to stay safe and sane.

For example, if she wanted her food served hot and got agitated otherwise, I tried my best to be around to make it and serve it hot.

Care for everyone but a dementia patient…

Time to start writing about the changes I tried to make in my life to handle caregiving better. This is going to be another set of mistakes laid bare on the page, sigh, braided together with spots that worked…

But before I start examining and describing what I did,  let me step back to look at some basic premises.

A lot of people I meet say that everyone makes adjustments to take care of elders, and I think what they wonder is why talk/ write about something everyone does–surely, it could not be that different for dementia patients.

So I’ll start this phase of my blogging by describing my caregiving experience for my father, who was absolutely sharp mentally right to the end. Sharp, articulate, and very aware, even on the last day of his life.

Hurting herself without meaning to

One of the most worrisome part of the situation of my mother in those-mid-stage dementia days was how she would keep harming herself.

In the Delhi summer, with the sun shining at its hottest in a patch of the walkway in front of our apartment, my mother would dash out of the house and stand exactly at the spot where the sun lit up her scalp. (This was before I’d placed a lock on her door to prevent such outbound dashes from the apartment). Some time would pass before I checked her room and find her missing. When I would realize what had happened and rush out to fetch her back inside, she would sometimes agree easily, but need persuasion at other times. I would try explaining about heat strokes, but she would say she didn’t feel hot. “See, I don’t sweat,” she’d point out. To me her not sweating only meant the heat would hit her worse, and it did. She’d get fever, she’d shiver, she’d get incoherent.

In winter, the cold Delhi winter, she’d throw off her quilt and peel off her woollens and then sit on her bed, curled tight, till I spotted her. She would get upset if I put on the heater. Curled tight into a ball because she was cold, she would refuse to relax enough for me to slip her cardigan on. I’d have to use blankets, hot water bottles, gentle massaging of her body, to make her loosen up enough to wear her woolens back.

She doesn’t cook for me

I had started working from home before my mother’s dementia-related problems became prominent. We moved in with her after my father’s death, when none of us suspected that those tiny problems we saw could have a medical reason. She seemed normal enough, except for her growing balance problems. I would do the cooking because I wasn’t comfortable with her working in the kitchen because she could sway at any moment, and would grab whatever she saw. Sometimes one would find her on the floor, a chair fallen on top of her–ouch

I handled all the cooking with some help from my husband. Most of the time I cooked food the way my mother had cooked for me, using the same spices, cutting the veggies in the same shape and size, making dishes as close to the ones she had cooked. I did this so that she was comfortable with the food and could eat well.  Except that now my mother wanted food the way her grandmother cooked for her…

Because I worked through the day, I would finish off cooking in the morning. Daal, veggies, roties, all would be placed in hotcases, so that anyone could eat whenever he/ she wanted without my having to interrupt my work. This was something my mother herself had done for years now–finishing off the cooking early to have the day free for whatever she wanted to do.

But my mother had changed now. Her standards of “proper homes” had become more traditional, reverting to her grandmother’s days. She began complaining at this early morning dispose-off-the-cooking method, and I had to start making the rotis fresh in the afternoon, as is common in North Indian houses, because, when she was a child, she used to eating fresh rotis. I tried to get my maid to come at noon for making roties, but didn’t manage.

Murderers, thieves, and an old woman amidst them

Fear that she’ll be cheated or attacked were one common thread my mother showed, often based on things totally ordinary, or on imagined events or projections.

I remember I was once doing my strength exercises and lifting a barbell with some effort (okay, a lot of effort). As I lowered it with obvious relief, I noticed my mother at the door of the room, watching me. “Yeh kya mujhe maarne ke liye practice kar rahi ho?” she asked me. (Are you practising this to be able to hit me?). I was totally nonplussed, and could not even mutter a “No.”

Beginning to understand the reality of “memory loss”

Here are a couple of incidents that made me register the fact that my mother was facing genuine problems that were totally disorienting her and contorting her perception of reality. That her abilities had deteriorated to a point where she was unable to understand things we all assumed to be simple.

One incident was during her evening walks. I had managed to get a maid who would take my mother for a walk every evening. After a few days of trying to take her down to walk the compound’s roads, and narrowly missing falling because my mother walked in too fast and too imbalanced a way, the venue of this evening exercise was moved to the relatively safe corridor with its even floor and grab rails.

One day, the maid told me that Mataji had asked whether it was morning or evening, and not believed the maid when she said evening. Sure enough, a few minutes later, my mother called me and asked me the same question. I was in a sort of fog of disbelief as I told her it was evening. “Are you sure?” she asked. “Yes,” I replied. “How do you know?” she asked.

That was quite an unexpected problem.

Learning from our experiences…

 Over the past few days, I  have forced myself to think about the far past of my mother’s situation, when there were hints I missed, and fears she hid by blustering through and raging, and the distance and the pain. It seems such a waste in this harsh light of hindsight; why am I forcing myself to look at it?

After all, it hurts to remember those things and write them out and expose them. So why?

The answer is simple: I may be at a safe place now, in relative peace, bridges repaired, connections forged, but there are so many others who face today problems similar to what I faced then…

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.