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.

Or, if she wanted to be taken out for a walk (she had balance problems), morning and evening, I’d do that, even if it meant adjusting all my own outings so that I was at home at that time. I’d rush back after a meeting to make sure I was home by 6:00 in the evening, when she wanted to be taken for her walk, or I’d trade in that turn with my son if he was home.

Basically, we twisted ourselves out of shape to do whatever she wanted because that was easier than hearing her complain. We did try negotiation and discussion but gave up soon, because even if she seemed to understand or agree, she denied it later, and claimed we were lying about seeking an exemption for one day from our “duties.”

This posed problems. For example, I could only go for meetings short enough to fit into the small available slots, and also build in margins for traffic jams. Once when I was caught in a major traffic jam and reached back too late for her walk, I tried explaining that Nizamuddin bridge had been jammed because of a broken truck. She claimed I was lying because a neighbor coming back from office had reached in time (that the neighbor’s office was in Noida, which was the opposite direction, was something she did not consider pertinent).

Then, there was the aspect of social life.

I am, by nature, not a very socially active person, but even I did have some friends and colleagues who’d drop in. This became a problem for my mother, who apparently thought she was the only person who mattered. She would monopolize the conversation, not allowing the visitor to interact with me, and keeping on expecting attention from them, keeping on talking to them. Often, she would say awkward things that hurt them.

Here’s one incident from back then:

A young girl we knew had got a job, and came to tell us. I think she expected congratulations and blessings and good wishes.

My mother asked her how she managed to get the job, because “Why would anyone give you a job? Your father must have fixed it for you.” She repeated it a number of times, and the girl looked hurt and embarrassed. I tried to say, “Of course she can get the job, she’s articulate and good at her subject,” but my mother then proceeded to mock at the girl even more. “This girl, get a job without her father’s recommendation?” It was very nasty.

There were other such incidents, too.

I can see now that my mother’s “inhibition” circuits did not work well, so she said things people often think but refrain from saying. But whatever the reason, I didn’t want to invite people over if they were going to be insulted.

I started avoiding inviting people. If they offered to come home, I made excuses (without mentioning my mother, as that would only make me sound petty). I ended up seeming antisocial and “snooty.”

If my mother’s problems had been easier to explain, easier to understand, maybe people would be more “forgiving” but we are supposed to “respect” our elders and never talk of such problems. I knew that if I tried to explain, that would backfire, making me seem not just a liar but also a disrespectful daughter. My mother seemed hale and hearty, and coherent enough when interacting socially (even if she sounded mean at times).

I am sure there are enough families where an elder has dementia, or where people have a relative with dementia. That people are aware that some elders behave like this. But they probably do not know that this behavior is the result of a medical condition, and that there is no need to be ashamed. People hide such behavior. Somehow, we all manage to behave like this problem does not happen.

In those initial years, the net result of my mother’s strange behavior was that I kept reducing my social interactions.

For one, if we cannot invite people, we cannot accept too many invitations outside. There is a quid pro quo in such stuff.

Also, there is a ripple effect; you refuse two invitations, and you don’t get invited a third time. You say I can’t come out for a chaat party late in the evening, and they assume you cannot come out for anything at any time. A “friend” once told me, “What’s the point even telling you about anything; you will always say no.”

Then, because you are not part of their “fun” activities, not part of their “invite list”, they forget you even for other things. You drop out of their social radar.

My social life, never too active, slipped in those initial years to near zero, pared down to essentials, with every outside interaction being one that just could not be avoided. Meetings were refused or avoided to the extent possible, because that was simpler than handling the aftermath of either being absent from home, or risking a visitor getting hurt/ insulted because of my mother blurting something.

Family outings suffered, too.

While my going for an evening walk in the compound was not a problem with my mother, and shopping for veggies just outside was okay, too, anything that involved going to a distant place needed planning. We could not all leave home without telling her if she would be alone at home, and she was often critical if told we were going out. She felt “fun” was wrong, and was even critical when I went out for “work” (which she considered a form of greed because it involved getting paid for work).

She’d say, “You should stay at home instead of going out”, and it was only a great deal of persuasion and heated arguments that made her concede that a once-in-two-weeks outing was not a downright decadent life 😦

In the beginning, we tried to solve this by including her into outings to have fun together. She’d refuse. Once she did agree, and we went out for snacks to a place I knew served snacks of the sort she liked. She seemed to enjoy it, and said it was good to come out and see the market.

An hour after we returned, she called me to her room. She was very agitated.  “Promise me you will never ever make me go out like you did today,” she said. “Promise me.”

I was stunned. “But you agreed to come! You said you enjoyed it!!”

“I don’t want you to ever even ask me again,” she said.

Well, I just couldn’t figure it out. She made it sound like I’d forced her to go out, and like it had been a torture. I never did ask her out for those evening snack outings.

Hubby, son, and I continued to go for occasional snack-type outings, leaving after my mother had taken her evening meal and was settled for sleeping. But those outings lacked a sense of carefreeness. We would only go to places close to home, and while there would be a sense of relief to get out, there was also a sense of tension that we shouldn’t get too delayed. The “outing,” much looked forward to, would typically last two hours, including the drive to and fro. The frequency dropped.

There was no spontaneity left in any activity requiring going out. Every occasion involved a clear evaluation–is it really needed? Will things remain okay at home if we went out? Who will tell her? Who will explain why we want to go out? What if she says, “No“? Sometimes we’d stand outside her door, each of us telling the other–you tell, I told her last time. Your turn.

It became simpler to not have outings or take turns so that one person stayed at home. That way, we didn’t have to tell her, because one person was at home.

This paring down of everything, this loss of spontaneity and fun, happened in the initial years of our involvement in her care, before any diagnosis or before we knew we were caregivers.

Adjustments continued to become more sweeping over the years, and it is not well over a decade since I’ve reshaped every aspect of my life to do what her situation demands. More tomorrow, on the next phase of adjustments…

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About Swapna Kishore
I'm a writer, blogger, and resource person for dementia/ caregiving in India, and deeply concerned about dementia care in India. On this blog I share my own 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 in this set of pages:

One Response to Paring down to essentials

  1. Pingback: Reshaping career and identity « Swapna writes…

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