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.

I have written earlier of how some visitors just would not understand that her condition was a medical problem, and would egg her on or say hurtful things because they assumed she was being lazy or lacked willpower. Read the post here:  Ignorance is not bliss.

Another thing that agitated my mother was watching TV, becasue she was unable to distinguish between the TV world and our “real” world, and often carried over snippets heard on TV as accusations of what the attendant had said to her–typically melodramatic statements that were frightening.

The situation was challenging, and the attendants were uncomfortable and tense in handling it.

I tried to train the attendants. I tried to explain to these visitors what my mother’s problem was, and how to talk to her to calm her. Often, they would respond to her agitation or confusion in ways that aggravated the situation, and I explained to them why their way of talking was making things worse. They also saw how I would manage to calm my mother–well, on most days😦

One point of intervention I was unable to use was removing the TV. My mother was addicted to watching TV. And the attendants wanted to watch TV, too. In fact, they would put on Kannada programs after she slept, and the noise would reach her in her sleep, dramatic talk in a language she could not understand. I would tell the girls to not watch TV, or at least keep the volume low, but they did not listen to me.

Sometimes, people tell me that I should be more assertive with hired help. The point is, if the attendant feels I am being unreasonable, on whom would the anger and frustration be “taken out”? I had to convince the attendants rather than impose rules they considered arbitrary. Besides, my mother wanted the TV in the room.

I finally solved the TV problem by removing it when in-between attendants. The new attendant did not know there had been a TV there. I admit I used a bit of trickery to convince my mother that the TV needed repair; she actually looked relieved to see the TV go; I think, though she did not admit it, because she was tiring of the tussles over TV programs with every attendant. I don’t think she enjoyed the programs, either–definitely, she did not understand anything in them.

But TV was only one problem. There was this overall problem of how to communicate with my mother and handle her agitations while remaining calm. My explanations, my setting examples, worked when things were almost okay, but failed otherwise. And my mother often got agitated because of the visitors who egged her on. Again, she wanted the visitors to continue, and would get agitated when I said I could tell them to stop coming. One particular lady was a real problem, because of the way she ended up hurting my mother time and again.

I just didn’t know how to alter the situation. I almost reached burn-out because in spite of my best efforts, I and my mother were often paying the price for the ignorance and inconsideration of visitors, and the problem was worse because of the inability of the attendants to help diffuse the situations.

Then, around 2007,  I faced some very critical comments from an elderly gentleman who assumed me to be evil because he did not understand dementia and assumed I was torturing my mother.

As this man ranted at me with the sort of harshness elderly men in India use on persons they consider “bad”, as his face twisted in contempt and anger, I watched him in horror, unable to find the words to explain anything to him. I’d told him in detail of my mother’s problems in the past, but clearly he had not believed me. He had spent an hour with my mother just the previous day; what had he told her about me? His opinion of what he considered my “neglect” and “callousness” and “torture” of my mother must have reflected in his tone and words…What would she be feeling? Had she, at some level, believed him? The whole situation seemed so overwhelmingly unfair.

That proved to be a turning point for me.

I realized that I’d really have to get more proactive about making sure that people who interacted with my mother understood dementia. If they, for whatever reason, did not understand, I would not let them interact with her. It was my responsibility to provide her with an environment where she was safe and felt competent and fulfilled, and if that needed harsh steps, so be it.

One angle I thought carefully about was how to make the attendants actually understand my mother so that they naturally treated her in ways that suited her situation.

In my first few years in Bangalore, girls would get tired of the assignment in a few months. Some lasted a year, but they would leave totally burnt-out. Over their service here, they’d been accused by my mother of too many things. Like, she ate my food, she didn’t give me food. Or, if a girl grabbed her arm to stop her from falling, my mother only remembered the abruptness of the grabbing, and would point out to the bruise, and say, she hit me. I would explain to the girls how to talk to her to reduce her agitation, but they would keep forgetting to use the techniques I rehearsed with them.

The way I figured it, the attendants did not really believe that dementia was different from old age. Though I’d prepared a detailed briefing note, and used it to train and retrain these attendants on how to talk to my mother and things like that, they were not able to get rid of the idea that when my mother accused them of something, she was doing so out of confusion. They took my explanations as academic explanations or as excuses for my mother’s “bad behavior.”

For example, I had clearly told these girls that if my mother complains about them to me, they should leave the room rather than start protesting and explaining, because if my mother saw me side with them she’d feel insulted and only make things worse. My mother was confused, and complaining out of her confusion. I could handle it better if the girl left the room. But the girls would forget my instruction as soon as my mother started her complaining. Hurt by her words, they would start defending themselves and producing evidence to support the “truth”. No amount of taking them aside and assuring them that I believed them worked. They just had to prove their innocence in front of my mother.

One girl used to get so agitated, she’d yell at my mother and say “Ma jhoot bolti.” (Mother is lying). Well, that didn’t help any, and my mother was (understandably) very upset and wanted that girl thrown out of the apartment😦

I had already tried enough rational explanations and training; now I took on the task of making the attendant understand dementia really deep, at an emotional level so that she would not forget.

One, I showed the current attendant pictures of Alzheimer’s brains where the damage was visible. I chose dramatic pictures, left them prominently in the apartment. Instead of just explaining to the attendant, I gave her pamphlets of material from Alzheimer’s sites. She  did not know English well enough, but she began feeling the problem was genuine. She was able to read a few sentences here and there. I began using the word Alzheimer’s instead of dementia. She’d heard that word before, even if she didn’t know what it meant. When the newspaper printed an article on it, I cut it out for her.

Another thing that happened around the same time was that I started playing games with my mother. As I played the same game every day, the girl watched my mother fumble and get confused over things that were very simple. She saw how my mother struggled over the same six-piece jigsaw every day, sometimes twice a day. She saw how my mother could not place rings properly on the rod in the toy. It struck her that my mother had a real problem. That if my mother claimed she had not eaten her food, she could be doing so because she had genuinely forgotten. The girl began listening more to me when I explained how to communicate, and why sudden movements and loud noises disturb my mother.

As the understanding of dementia began touching the attendant girl at her heart level, she naturally developed more patience. She did not see my mother as a liar, but as a confused person. Not a “mad” person, either (in India, people are really contemptuous of mental problems) because of the pictures of the shrunken brain.

So far, I had spent a lot of time training attendants and their replacements but the training had not percolated. My changed approach, which was to make them emotionally understand the problem was a surprising success. When this girl (who had been really abrasive to begin with) started changing her attitude to my mother, I realized that the girls so far had not applied the training because they considered the training unnecessary and felt that nothing was wrong with my mother except for a walking problem.

When this satisfactorily-trained attendant left and a replacement arrived, I added one more part to the training.

Before the new attendant met my mother the first time, I made hubby take her to the city’s dementia day care centre so that she could see many such  patients and talk to the volunteers and trained professionals providing care. By the time this new girl arrived to take over her duties, she already knew that my mother’s problems were a genuine medical condition, and not an attitude problem. She was very receptive to the training I gave her, and has been able to do her job competently and compassionately. Within a few weeks, she even started playing games with my mother herself, and would chat with her in a gentle way, or just sit with her in the balcony as they watched people downstairs.

The other problem–that of visitors who hurt my mother because they refused to understand her problems–required more drastic action. I am referring to the sort of insensitive neighbors and relatives I described in the blog entry: Ignorance is not bliss…

After visits by such persons, my mother would sometimes take out her frustration by blaming me or the attendant. But sometimes, after crying helplessly or ranting/ blaming me for all her ills, would slump into a depressed mode, and repeatedly ask: Why is this happening to me? Why do people talk to me like this? I would then try to explain what dementia was.

My mother could not accept the word “dementia.” Or “ataxia.” With a post-graduate in psychology, and having worked for a few projects in the mental hospital at Ranchi several decades ago, my mother had her own impressions/ prejudices about such patients and their odd behavior. She found it abhorrent that her behavior was now categorized the same way. I was in a fix. I could not think of a way of explaining that she would accept, and would often get frustrated facing the same question every day, every time I met her. My own agitation/ helplessness probably aggravated her worries.

Sometimes I would get insistent while trying to explain to her, which obviously backfired.

But at other times, I would speak against the persons who had been inconsiderate and abusive to her, and say, why do you want them to come when they speak like this to you? She would get agitated even at that, saying I should not stop them from coming, because they were her friends, and she liked talking to them. I would tell her to ignore anything negative, but of course, even normal persons have problems ignoring hurts. A dementia patient has lower control over her emotions.

Over time, as my mother’s confusion and inability to converse reduced visibly, visitors reduced, too. My mother was no longer good company, and they were not desperate enough to talk to someone who was obviously not understanding what they said, and could remember nothing the next day.

But the lady I’d talked about earlier continued her visits, and I was helpless because my mother forbade me to stop her visits.

At that time, I just couldn’t understand why my mother wanted to meet a lady who was obviously hurting her every day. I can see now that my mother didn’t want the lady to stop coming; she wanted me to “fix things” so that the lady became the sweet and considerate friend my mother craved for. My mother wanted to be understood and liked– – who doesn’t? She could not grasp the idea that this lady was not going to change. My  mother could not face the idea that this lady would never be ready to appreciate and like my mother as she was now.

We all want the world our way, but know (hopefully) it is not always possible. It was not surprising that my mother wanted things her way, too. And, given her dementia, she could not accept that some things are not possible…

I wasted time trying to talk to the persons who were troubling my mother by their insensitivity; to me, that talk was like taunting a helpless woman, but they claimed they were talking to encourage my mother to “try harder” and as proof pointed out that my mother got restless when they did not visit for a few days. I kept trying to explain, barely managing to remain within the bounds of politeness that our society expects us to exercise when interacting with elders.

I went over to talk to the family of this lady, too. Her husband clearly told me he would do nothing because his wife was a heart patient and he did not want to upset her even a bit. He forbade me to stop his wife from doing anything because any heart attack she got then would be my fault. I approached the son, hoping he would understand and help me, but he threw up his hands saying his mother could not be told anything or she would get hysterical. She wouldn’t change, anyway. Instead, I should convince my mother to ignore anything this lady said.

It was clear to me that I and my mother were collateral damage as far as this family was concerned. Why would they care?

Now that I think of it, they expected my mother, a dementia patient, to show more understanding and adaptability that they expected of this perfectly normal (brain-wise) lady😦

I finally solved this problem by taking a very tough decision: telling this visitor to stop coming. A blanket ban. Told her she was not welcome.

The lady cursed me and spread bad vibes about me. She still holds a grudge and we avoid each other even now. Equally tough on me, my mother went through an agitation akin to withdrawal symptoms. She cursed me and raged against me. Again, I had to put up with it. My mother took a few weeks before she started showing a sense of relief that she didn’t have to talk to that lady and forgot that she had been angry with me for stopping the lady (ah yes, dementia memory loss had its plus points at times).

Another thing that I did was make sure that the ocassional visitors who came saw the graphics I’d used to explain my mother’s problem to attendants: showing a shrunk brain juxtaposed with a normal one. These were dramatic enough to make the point about the brain disease behind my mother’s problems. I used these to reinforce to my mother that her problem was not “mental” or “psychological” but “physical.” I left the pictures at a place where they’d be visible to any visitor, too, so as to remind them of what I had told them.

By now, I was blocking all visitors who seemed to have an attitude problem about accepting dementia as a medical problem. I’d make sure anyone who met my mother understood at least some basics of her situation.

With my mother relieved and safe, the time I spent with her started getting more interesting and relaxing. We were able to talk about things she did remember (even if patchily or wrongly) or do things she enjoyed.

Sometimes there are no easy solutions.We want one thing, we have to give up another.

To give my mother a space where she was not made to feel inadequate about her problem, I have had to cut off from people who refused to understand, and have been criticized and isolated by them. Given the already isolating nature of the caregiver role, this became very tough on me. Before I managed to find alternate ways (mostly online) of company, I faced long stretches of days where I was unable to talk to any peer/ normal intelligence person because my husband was out of town.

It was very lonely.

But the alternate was even less acceptable.

Basically, I made these harsh decisions that turned around the situation because I took upon myself the full responsibility of ensuring that anyone interacting with my mother understood her condition well enough to interact suitably. Earlier, when I explained, I’d explain with precision, academically correct, give procedures and tips. I assumed people would believe and change their behavior with her accordingly. But at this junction, close to burn out, I assumed the responsibility of making sure people understood things deeply enough, at an emotional level so that they didn’t see me as someone “setting rules” on them. When someone new visited, I stayed present throughout, smoothening out any glitches, making sure my mother was not agitated, and that the visitor was also comfortable. And if a visitor did not understand, or was not willing to understand, and ended up hurting her, I examined whether I needed to explain again or to stop further visits by that visitor.

The resultant major shift in my mother’s moods and condition was visible within weeks. The entire environment around her changed. The attendant now understood and handled the situation better. And my mother was no longer defensive about her memory loss and she began openly admitting her problems.

For example, she’d say something accusatory, then soften and say, “maybe I am mistaken. I get confused sometimes.” If I told her she may be mixing up things, she’d say, “yes.” If she got depressed about her state, I could sit with her and tell her it is a medical state and not her fault, and that she is doing the best she can, and isn’t that all any of us can do? All we can do is try our best.

Sometimes I think of how much easier things would be if we were in an environment where there was enough of a critical mass of people who understood problems like dementia, because then individual caregivers would not have to take on the task of educating and screening people around the patient to provide him/ her a safe and fulfilling environment.

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India. I have also been a dementia caregiver for well over a decade, and am deeply concerned about dementia care in India; on this blog I share my personal caregiving journey, my experiences as a resource person for dementia care, and musings on life, aging, dementia in India, and such sundries. More about me and the work I do for dementia care. For structured information on dementia, for discussions, tools and tips on caregiving issues, for resources in India, and for caregiver interviews, please check my website http://dementiacarenotes.in (or its Hindi version, http://dementiahindi.com). For videos on dementia caregiving (English and Hindi), check the youtube channel here.

8 Responses to The turning point, and becoming proactive

  1. Suneetha says:

    Swapna, I wish I could give you a hug and kiss for this love and patience. I will make sure my daughter reads this and my mother too, that I have a role model and a guidance ahead of me.. No, the situation is in constant flux and you are trying every second, I know; but I think this now gives me a sense of how to treat a family member who has some medical-related issues psychologically at a very young age… I have been angry, patient, harrassed and aloof in turns but I feel guilty I never tried so much, he is someone I grew up with and share lovely memories…Please keep writing and sharing…btw, I hope u remember me from the SF group..:).. Cheers and let the wagon move…

  2. Jay says:

    No words to describe for your dedication,persistence,patience and devotion to your mother Swapna!
    I bow to you!

  3. Pingback: Trained attendants for dementia home care: sharing experiences « Swapna writes…

  4. Gowri says:

    It was a revealing article,now that I have started caring for my mother who is in an advanced state of demetia.

    • swapnawrites says:

      Thanks, Gowri. And if you ever want to connect with me to talk about caregiving, please do not hesitate; I am always happy to meet other caregivers.

      • Gowri says:

        I appreciate your gesture of connection with warmth. I would very much love to,Swapna, since I have found that getting to know about dementia is like trying to measure the ocean, and it is funny that I thought it is just another minor discomfort owing to ageing.The facts have just started to blow in full force on my face, and at least now I want to be a little ahead of things to come..

  5. Anupama says:

    Swapna,

    I commend all the efforts you are taking towards dementia. My grand mother has been suffering from dementia for the past 5 years. I wanted to ask you, what is the eventual condition that we can expect. Is there any chance of them recovering at all? Or is it a downhill path for ever?

    Thanks
    Anupama

    • Thanks for dropping by, Anupama.

      I assume your grandmother has been diagnosed with some irreversible dementia like Alzheimer’s Disease. To answer your question, I’m sorry to tell you that irreversible dementias, are, well, irreversible. The damage done to the brain cannot be corrected, and the patients deteriorate over time. The deterioration pace varies from person to person and there are also differences across the various types of dementia, but there is no return to where they were before dementia. All we can do is help them stay connected and happy to the extent possible. The last stages can be particularly difficult to see, as they become fully dependent.

      Let me know if you want to understand this in more detail (email me at cyber.swapnakishore@gmail.com) and I will send you some links you can read up.

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