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….

I slipped into “what if” thoughts: If my mother hadn’t got dementia, she would have remained the sort of person she had wanted to be. My life wouldn’t have centered around giving to her, and ensuring her well-being. There’d have been a more “normal” me who did not feel so isolated and alienated from the mainstream, who had time and energy to do stuff considered normal. I would not be a person identified with and measured by how happy or not my mother is, and how cared for or not she is. My life wouldn’t be an account book of what I do or don’t do or could do or cannot do for her; I would be there also for I, me, myself. Maybe she’d even have continued making pooris for me once a month as she used to do. Maybe we could have debated philosophy as we used to. Or she would have shared stories of her tyrannical grandfather.

And while I was mourning for all these years which have aged me and will never return…

…I remembered something else.

I remembered something about the days when my mother had been normal, getting older and facing some problems, and how others who were more “normal” wanted her to hide her problems so that they could feel good and positive about ageing and continue to believe age does not cause any deterioration to those who are strong-willed.

One incident…

This happened back when my mother was an active and positive person who had started facing “balance” problems while walking and was determined not to let that make her home-bound or sedentary. Cognitive decline, if any, was mild and not visible to us. My father, on the other hand, had taken his retirement to mean serious retirement, and had reduced his overall activity and social life and walks and so on.

My mother has always been very fond of walking. She was a fast walker. When she was in her mid-fifties, she and I had gone for a short vacation to Nainital and there we were walking down one of those touristy hills and we easily overtook a number of honeymoon couples. Walking with my mother was not for the indolent or faint-hearted; her pace was intimidating, especially when she was doing the walk as “exercise.”

Then she started having balance problems, and her walking alone became dangerous, because her body would sway or list and she would have to grab something so as not to topple. That something she grabbed was just about anything she saw, whether a co-walker or a child or a barbed fence, and so she felt that her walking alone would be silly. I concurred.

We began taking morning and evening walks together in the apartment complex compound, and she would grip my wrist while walking (she refused to let me support her by holding my hand under her elbow; she wanted to control, to grip, because that made her feel safe). So there we would be, two very thin women, one a tall, elderly woman and the other her short daughter, the tall one walking fast, gripping the wrist of the shorter one and the shorter one trying to walk along while also adjusting herself constantly to absorb any weight imbalances.

Our apartment complex was peopled with friends we had known for years, including retired colleagues of my retired father, some of whom I had called “Uncle” since way back. Some people would stop to say Namaste to my mother, and she would lurch, stop, let go of my hand and join her hands into a reply Namaste while I would remain attentive to make sure this changed stance was not going to make her fall (and in the bargain forget to do my own Namaste, which usually earned me a scolding from my mother later).

But many people would avoid us, and I assumed it was out of consideration because they did not want to disturb my mother’s obviously precarious balance. I saw some people hesitate, as if they wanted to say something, and then not say it, and some people would call me aside later and ask me why I did nothing to solve my mother’s problems.

One “Uncle” would, however, often stop us and tell my mother to try and walk without catching me. I explained to him that she had a balance problem, but he would keep saying that she should try, and imply that she was not trying hard enough. I could see that his remarks hurt my mother, who had the caliber of willpower that could beat anyone hollow, and had faced and solved all sorts of severe problems single-handedly at various stages of her life.

She was not rude to him, though. She would only press her lips tight, and say nothing.

One day, this gentleman approached us with the air of someone steeling himself to say something important. He told her, आपको ऐसे चलते हुए देखकर अच्छा नहीं लगता. (It does not feel good seeing you walk like this).

I explained again, that walking was an important exercise and this was the only way she could walk.

He repeated the sentence a few times, then elaborated to the effect that he came down for his walk and seeing her problem depressed him and he wished she would walk on her own, without support, so that he didn’t feel bad. He even said, आप तब नीचे घूमने आइये जब आपकी प्राब्लेम ठीक हो जाए, ऐसे देखना अच्छा नहीं लगता (you come down for a walk after your problem is solved, it does not feel good seeing you like this).

My mother’s face became hard like stone and she gripped my wrist even harder to a point I feared my circulation would stop, and she turned her face away from him and said to me, चलो (let’s go).

I felt dirty, intruded, angry. This was a family friend, my father’s colleague, someone I had known and respected since childhood. He should have been there with us, with my mother, helping her stay and feel normal and active in spite of her problem. That was what she was doing, right—- staying determined, positive, active?

Instead, this man wanted her to be taken away from public view because he did not want to accept that some people face problems as they age, and not all is hunky dory. He had the temerity to tell her that, without possibly sparing a thought of how hurt and betrayed she would feel to hear such things from a “friend”.

This incident occurred ages ago, and I often had to meet this gentleman after this because I continued to live in that apartment complex. My mother and I continued to walk, but we would (without saying so to each other) avoid this person if we could, and he avoided us. Over the years, as my mother’s balance problems worsened, and her cognition problems increased, such intrusive comments increased. People would either tell my mother to show more independence and willpower, or tell me to do something about it, scold her, scold me, or avoid us altogether.

I can imagine how uncomfortable it is for people who are growing older to hear about or see their peers who are facing problems. Probably people who are ageing well and remaining active and hoping to continue to do so want no reminders that their peers may not be faring that well along that age curve. They may, therefore, be tempted to dismiss off people facing problems as people who are not determined enough, positive enough, and they may not want to connect with the less-well people or even see them unless they are “success stories” who have overcome a problem.

But shouldn’t a peer group be supportive of people who are facing problems instead of telling them to get out of sight? Shouldn’t they be matter-of-fact about problems, and accept that some problems remain and don’t vanish? Shouldn’t they embrace all paces of ageing and accept the diversity of ageing experiences?

I sometimes suspect that there is a lot of pressure on people to remain visibly positive and to “age well”. At some level, this boosts the determination to cope with problems and be successful in spite of them. But at another level, this pressure possibly drives away those who don’t match the societal expectations, and forces them into hiding so that they are not seen as a disgrace to proper ageing.

And I wonder…is that set of those cheerful, active elders we see outside a filtered-out set of elders? Are they those elders who are confident and active and can (at least for some hours) hide their problems (if they have any)? Maybe we do not get to see people who have problems which they cannot hide or overcome, people who retain their need to be part of the community but whom the community does not want to see. How many homes have withdrawn, hidden, tucked away elders who have withdrawn because their family or friends have indicated disapproval and implied they do not meet the standard of good ageing?

Thoughts like this make me reconsider my grief at a sense of loss of what could have been, as I start suspecting that what I see outside may not be widespread enough to be “normal”.

As I ponder about my own pending “ageing”, these issues concern me more and more. I have no way of knowing how age will affect me, and while I may do things to stay active and all that, the fact also is that problems happen, and not all can be overcome, and I would like to stay as involved and active as I can without being apologetic about any disabilities or problems I acquire; I would like to remain matter-of-fact rather than twist myself silly trying to hide problems others don’t like seeing.

I wonder, though, how enabling society is about realistic ageing across all spectrums of increasing disability and dependence.

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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.

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