My lowered social immunity, unsolicited pity people have for my mother, my wanting to curl away and hide: I need a break

The last six months have been hectic, and I’ve got this exam-end hysteria coming on so this will be a rambling personal post on life, on things that never seem to change, on my sense of futility that probably indicates that I need a break. And no, I’ve never claimed to be an out-and-out optimist; I just keep doing stuff and hope I don’t get tired, but sometimes I do get dejected and need to step back for a few days, maybe a week or two.

Let’s talk about this sense of futility….

Just a few days back, as part of some link checking, I found myself re-reading a post I’d written over two years ago (here: Ramblings on love, hate, and a life worth living). I got this sinking feeling that things have not changed since then. I’d written about the same topic again, in less detail around two months ago, and things have not changed since then either. And I realized this was one of the reasons I have been withdrawing from even the few physical contacts with persons I have.

I do not socialize. But I bump into people on my walks, or elsewhere, and more than half of these stray conversations end up making me feel utterly disconnected with others. I don’t mention my mother’s state unless someone explicitly asks me about her. When I answer, I note that most persons seem unsatisfied; they seem to expect something to have “moved” since the last update–a miraculous recovery, or a death, something different and perhaps more interesting. The “she’s stable but deteriorating slowly” perhaps sounds like a boring movie. Maybe that is the reason they stop registering what I say, because they often repeat questions I have answered several times earlier (yes, she is still bedridden, no, she cannot walk even to the bathroom, no, she still cannot talk, but she seems happy, she is healthy given her state).

Unfortunately, not many persons listen and respond in a matter-of-fact way to what I describe. Very few persons accept my reality and my mother’s reality as just something that is, as a fact.

I appreciate it when people understand, or try to understand. Or if they knew my mother, we can sometimes share a sense of loss for what could have been, though we all know regret and sorrow are futile. But yes, we can share that. I could do with a hug sometimes, too.

Sometimes, people express surprise that we are caring for my mother at home given her state, and someone may say, “I don’t know how you handle it!” I understand that surprise. Before I was thrust in this caregiving situation, I too hadn’t realized this work could be handled by ordinary persons

But hardly anyone I meet nowadays knew my mother when she was alert and active. Very few of them know me other than as a neighbor/ fellow-stroller/ other casual acquaintance they sometimes bump into.

I am not surprised or upset when people can’t understand or remember the specifics of my ,mother’s state; I don’t expect them to be that interested or attentive–why should they, it is not their direct concern… (I keep forgetting the status of their various grandkids, don’t I?)

My problem starts when people ask questions, and then on getting answers, they show their discomfort by implying I am being “negative” or lacking “faith” (how is that relevant?) or that I am complaining about what is “my duty”. Hey folks, all I did was is factually describe my mother’s current state in response to your explicit questions. To label statements of facts as “negative” or “complaining” seems unfair to me.

What really disconcerts me is when people shudder, show revulsion, and then express pity.

I don’t like people thinking of my mother with revulsion and disrespect. I do not like people pitying her. I don’t like being told, “How awful, I would rather die than be bedridden” or worse, “Wouldn’t she be better off dead?”

When I say pity, I mean the pity tinged with a vague contempt and a keep-the-distance air. Genuine empathy, or just acceptance and companionship is welcome, most welcome. But facing contempt and revulsion and pity upsets me.

Two years ago, when I wrote that blog entry , I despaired about people who told me they thought my mother would be better off dead. I still feel upset when people talk like that, and now such interactions make me shrink away from contacts even more that they did two years ago.

I do not like it when people compare my mother’s situation with a vague standard of “normal” and “acceptable” and find my mother “lacking.” Such judgment creates a distance that makes me alien.

I don’t want to feel an alien.

I sometimes wonder how tough it must be for people who are differently abled and must be facing this subtle (and not always subtle) gap all the time. One shouldn’t have to work hard at being including in mainstream humanity. Everyone should be naturally a part of it…

My mother is bedridden: that is a fact. If hearing about it is uncomfortable, people can simply say, “This makes me uncomfortable. I do not know how to absorb or respond to such information, sorry. Can we talk of something else?” That would be a more honest and considerate response than comments that are either critical or pitying.

Pity and revulsion are very different from understanding and empathy. The former chills the heart, belittles and distances; the latter warms the heart and provides companionship and solace. I think the difference would be easy to understand if people placed themselves in the other person’s shoes…

Some decades ago, I was clueless about caregiving and death and such stuff. I never knew how to handle situations where, in response to my social question on what was XYZ doing, I got an answer that said XYZ was involved grave illness, extreme caregiving, a fully dependent person, an impending death I would wish I had never asked that question. I would wonder what to say without being rude. It was not that I was devoid of concern or sympathy, it was just that all words seemed shallow and flat at such a time.

Luckily for me, I am not a very talkative person, and silence, nodding, a few hmms often sufficed.

Speaking now from the other side of such interchanges, I still feel silence, true listening, and showing acceptance work well enough.

On the other hand, well-meaning people who find silence uncomfortable may try to fill it by blurting out advice that they have not thought through, or by passing comments. They may end up sounding insensitive. I mean, did they really want to convey contempt and revulsion? They probably did not pause long enough to think how it sounds to people on the receiving end.

As for talking about dying…

So okay, awareness of what a bedridden person may want is not common knowledge. People typically assume that a bedridden person must be preferring death to such dependence; they have not examined the possibility that a bedridden person could have a life as worthy of living as anyone, and he/ she may want to not die. Or that a bedridden person could be happy.

Do people living non-ideal lives always want to die when things are not perfect for them?

I know that I definitely don’t want to die. I want some things to change, yes, and plenty of stuff makes me unhappy, but whether these things change or not, I want to live. I suspect that is true of most people.

Of course, people often say, “Oh, I would rather die.” I think that has become a way to express that something is very unacceptable. I think the “would rather die” is a desensitized sentence that ends up being judgmental and presumptuous and insensitive if there is someone nearby who is currently in the position to which death is “preferred”. People routinely use the “rather die” clause when faced with quadriplegics, bedridden persons, or anyone differently-abled. I think sentences like “I would rather die” are insulting to them.

I don’t think people who say “I would rather die” intended to insult.

I think when people say “I would rather die” or “I wouldn’t want to live like that” or “I will never be like that“, they may be trying to distance themselves from imagining the state of the other person. Perhaps what they are saying is, “I don’t want to know or hear of people like that; it makes me very uncomfortable. And I do not want to even remotely think I could be like that. ” Perhaps they are saying, “The situation, the person is alien. ” Perhaps they are even saying, “Anyone in this position is less human, less worthy of life than we are“…

…and I don’t think they are registering what it may sound like to the person on the other side. They are probably busy processing their own emotions regarding a situation they wish they hadn’t encountered, and expressing their discomfort using words they often hear others use

The “would rather die than be xyz” statement is possibly a word pattern adopted without examination.

But I do not like to be the person hearing those statements. When someone talks like that about my mother, I get trapped into a mental loop of thinking: I did not volunteer any information, I did not ask them for anything, I did not complain. They have to do nothing for me, then why heap bad wishes on me? And now they expect me to agree and be grateful for their “concern”!

I cannot understand what sort of response to make, so I do the diffident smile and topic-change instead.

Such interactions drain me.

As you might have guessed, I had some such unpleasant experiences even in these last few months. They had a downward effect on my happiness quotient

I must also admit that my social interaction immunity levels are currently low, or I may have weathered the comments better.

This is because for these last six months I’ve been pouring myself all-out into project after project. I figured out how to make screen-recording videos and made some. I created a complete Hindi dementia website. Wrote and introspected for my month-long blogfest. Redesigned my personal site to create a section to share stuff with volunteers. Plus, back-end maintenance of my websites, caregiver support through email and phone, new caregiver interviews, stuff like that. Exhilarating, but also tiring.

I need a break away from high-paced, self-imposed work, and a break away from interactions that could go awry and sap my already-low funds of good cheer. I need the comfort of a closed supporting circle for some days where I don’t have to conform to being “positive” by denying facts or hiding them, where the people I interact with understand me or are frank enough to state they do not understand me. I need a break from preachy talk, critical talk, unsolicited pity.

For a week or two therefore, I plan to stick to simple work, talking to caregivers who contact me, responding to stuff, but hold back from starting anything new or massive. I may catch up with emails to friends. Or work on a jigsaw or read a fantasy novel. My wishlist folder shall remain unopened, ideas on hectic projects shall remain on the shelf. And then, after a week or two of this break, I will peer at my wish-list and ask around for ideas, and figure out how to prioritize between the various ideas…

Maybe I’ll even venture out socially and say hello and risk being asked questions.

Post referred to in this blog entry: Ramblings on love, hate, and a life worth living

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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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Forcing caregivers into a one-dimensional care role

While it takes time for people around a dementia family to accept that dementia is being caused by a disease, an interesting (read: sad) effect is that when people accept the importance of the caregiver role, many also assume that the primary caregiver’s life should revolve around care, and that he she should not and cannot do anything too different from caregiving.

To explain what I mean, let me share some things I have been asked/ told when seen outside home by people who knew my mother had dementia:

• Oh, you are here, but what about your Amma? Is she alone? Who is with her? Who is taking care of her?
• I know you have offered to help me, but I don’t want you to neglect your Amma to do my work.
• I don’t understand how you can go out when your mother is so unwell. You should be with Auntie.

Typically, these statements come from persons who do not know my mother at all/ have never met her, and to whom I have explained the care arrangements around my mother umpteen times and so they know that I spend quite a bit of time with my mother. But that’s not enough for these caregiving purists.

Though I remain polite when subjected to such statements, I do feel unhappy at such comments.

Active, visible elders, and inactive, tucked away, hidden elders

This is about some thoughts triggered by a senior citizen event I attended, where the hall was full of articulate, well-dressed, energetic elders (some came with younger relatives), all animated and social. My first response was a general happiness, but that feeling was short-lived as I was swept away almost immediately by a tremendous surge of loss because I thought of my mother, who had been such an intelligent and energetic person, and I wondered how our lives would have been if she had not developed dementia. Some weeks have passed since that function, and I have had time to mull over that experience and my response to it…

As I shared with some online caregiver friends immediately after that incident, I was so swept away by the sense of loss that day that tears prickled my eyes and I had to blink them away. I could not concentrate on watching those senior citizens accept prizes and sing and all that; I could only think of my mother and the past several years. I remembered how she (as my re-examination of past clues shows) had started experiencing the dementia gaps and setback well before the diagnosis, and had started withdrawing, hiding, covering up, raging, suspecting she was going crazy and therefore blaming everyone….trying to view those years as they would have been for her was terrifying.

I left the function early and could not get rid of that horrible pit in my stomach for a few days. I thought I could then understand why so many people have problems understanding that my mother’s problems are genuine; they have seen “normal” ageing, and want to think everyone ages that way, and I wished I could slip back into that comfort of normality but alas…

The sadness I felt for was not just for my mother, it was also for myself, and for everyone who experiences this loss as patients, as family….

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.

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.

A common loneliness…

For the last few days, I’ve been recalling some of the challenges posed in caregiving because of my mother’s condition. These were places where her memory loss and confusion resulted in her saying and doing things that hurt her and people around her. They caused me repeated embarrassment and anger and frustration, they made me withdraw from people around me and effectively isolated me, and they made her fall ill and hurt herself. Most of the time, though I had begun to register that she was acting out of confusion (and not because she wanted to be mean), I had no effective way to reach out to her or to explain to others or generally make things better. There was an overall sense of helplessness and inevitability that I experienced.

I’d like to wrap up this part of my recollections by sharing her obvious sense of insecurity and isolation.

There were many incidents in those difficult years that showed how insecure my mother had started feeling. In addition to making me promise again and again that I would take care of her, she made it a point to complain to everyone about me, and when they talked tough to me, she’d tell me, “See, did you see what he said? You must do your duty properly.” Essentially, she was using these complaints to make sure I didn’t forget or neglect my duty. Earlier, I’d seen it as manipulation done out of dislike for me, but over time I realized this to be a twisted thinking of hers to get what she wanted.

She felt that if others were always telling me what my duty was, she would be safer.

Ignorance is not bliss…

After making yesterday’s post, memories have been flooding me. Memories of how people I knew well, good, well-respected, educated and informed, religious people would say things that could only be called cruel to my mother, because they refused to understand my mother’s ataxia and dementia, and how these affected her. People whom I repeatedly requested to change the way they talked to her, but they refused, claiming I was exaggerating things or just exercising “control” over my mother. That I was not doing enough to make my mother okay…

I could probably exhaust a month’s worth of entries over these memories, but I’ll select just a few and write of them today.

Take this elderly gentleman in our neighborhood, who was mentally sharp even though in his eighties, and he loved meeting people. He could remember everyone’s name and face and life history and hold interesting (well, almost) conversations with people. He would drop in to meet my mother sometimes. For some reason, it bugged him to see that she was not socializing with people, and stayed in the apartment all the time.

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.

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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behavior of concern

A few days ago, I had the opportunity to discuss “Understanding Challenging Behaviour” with a number of professionals involved (or about to be involved) in dementia caregiving.

It got me thinking

There is, of course, no shortage of difficult/ challenging behavior when you are caring for a dementia patient. The nature of the disease keeps the patient disoriented about time and space, keeps memories disjointed or wrongly connected, affects even basic aspects like identity and interpreting the surroundings. A patient may not recognize a close relative, let alone a carer he/ she sees every day. Everything to a patient can be a challenge, and in response to this, the patient may react with withdrawal or aggression or any of the range of ‘challenging’ behaviors.

Then, there is this concept of  “behavior of concern” which is rather simple:  not every strange/ not-normal behavior of a dementia patient needs to worry us. Every model on dementia caregiving tells us we need to focus on behaviors with serious/ unacceptable consequences. Simply put, a behavior of concern is one that upsets or harms the patient or the persons (or community) around the patient. The rest of strange behaviors can, well, be set aside