The unexpected quality of openness

One of the loveliest parts of starting “fun” time with my mother was the way I began looking forward to that time slot with her. I didn’t have to be competent all the time, or keep trying to improve things. My need to “preserve and protect” my boundaries dissolved, too.

Strange how, after decades of establishing a boundary with the parents to define oneself as an individual, it is only when those boundaries dissolve that one finds  the best of oneself….

Care is often not seen as related to fun. I definitely did not think of “fun” for years. Oh, I would try to talk to my mother sometimes, but it didn’t quite work out. For one, I lacked the skill to orient with and feel comfortable with her view of reality. And another, I always had a agenda, even though I wasn’t aware of it myself, and that agenda was to make her accept her situation and improve.

Improve what? Anything. Everything. Improve her ability to talk, to remember things, to express herself, etcetera. That agenda of mine (and I wasn’t aware of it except in hindsight) underlined every interaction and activity. It made me desperate when she didn’t respond as per my expectation schedule. And made my life quite frustrating because her decline was obvious on most days.

For example, there was this signature struggle.

Although I’d reorganized my mother’s finances in a way so that most stuff lay in either/ or accounts, there were still places that needed her signature.Her tax returns. Her life certificate for her pension. Her pension account, which could not be made joint.

Unfortunately, Mother had forgotten her name.

Mother could often remember her first name, but not the surname she assumed after marriage. She didn’t even remember getting married or anything about her husband (though she knew I was her daughter 🙂 but I wasn’t bothered about that–I wanted her to remember was her full name, because that was what she had to sign.

Every day, I used to spend a half-hour trying to make her practice her signature. I scanned her signature, magnified it, and stuck it at various places to remind her what it was. I had this diary that was used soleley for the purpose of her daily signature, so that she could see samples of her past work and get the confidence she could do it. I assumed that a signature is sort of automatic (like cycling?) and hoped that daily practice would get her motor movements ingrained enough to meet a sign-on-demand requirement.

Yet, often, she could not sign. She would scribble the first name in a moderately recognizable way, but blank out on the surname. Or do a couple of letters of the first name and then start writing out the surname. The diary filled up with all odd combinations of alphabets. On some days, she would sign in Hindi instead, which was quite a regression because she had not signed in Hindi for years. She didn’t even have an equivalent Hindi signature of her current full name.

I tried technique after technique to make her sign properly. Holding her hand to form that first “B” to get her flowing. Signing her name in her presence to show her how to form the letters. Asking her to move her pen over a magnified version of her signature. Making her practice straight lines and oblique lines and curves, just to get her used to a pen.

She wanted to sign. She’d get nervous, too, because she knew that a signature is important.  She had always been somewhat suspicious about handing people control of her money or goods, and in the troublesome phase of her dementia, this fear had hardened into a repeated stand that she would never “sign away” her money, and even a mention of a “power of attorney” had resulted in an explosion and abuse that showed how unacceptable this was to her. So she was scared what would happen if she couldn’t sign. But I dared not broach the topic of power of attorney.

The alternate to signing was using thumbprints under a doctor’s supervision, which would work for many things, but I hesitated to suggest this option, too. My mother, who had earned three post-graduate degrees, had always been so proud of her education and had looked down on illiterate “angootha-chhaps” who had to use thumbprints instead of signatures. Also, there was this problem of appearances, about others hearing of this. Visitors would egg her on by saying, “why can’t you at least sign?”

So while I was worried that she could not sign, and she was worried, we did not dare talk of alternate approaches.

Possible alternates to the signature problem was just one more topic we could not talk about, related to her situation. For many years, my mother had hidden her problems and denied them and accused me of “making her forget” by “keeping on saying” that she had a memory problem. She made it out like it was my fault. Whenever I tried to make her “aware” of her “reality” and “plan for it”, it backfired horribly. So we had already established a convention of avoiding mention of her “memory” problems because of years of denial and conflict, and it seemed natural not to talk of the signature problem, howsoever large it loomed before us..

In spite of shared concerns, we had boundaries.

Several things changed two-and-a-half years ago, when I felt so desperate I adopted a lot of counter-intuitive measures to tackle the situation. Amongst the new things I did was what I partly described yesterday–spending time with her relaxing or having fun. Time without any “improvement agenda” or any specific task…

Every day, we would sit down for a relaxed hour and I would talk about things that interested her. Read stories. Play. I’d watch out for her expression, and tuned the topic/ activity depending on her interest level.  Sometimes, I’d just sit with her in the balcony, looking out at the children playing below. Strangely, it unwinded me.

She relaxed along with me.

People often talk of dementia patients as people who are closed and unable to respond to others but what I noticed was that my mother probably sensed my inner shift, because her own boundaries softened in parallel. I suspect she was no longer so scared or so tense. Maybe she didn’t feel she had to prove her competence or hide her problems, but she started looking less wary. She no longer insisted that she was right and she went slower on the blame, too.

It was she who brought up one day this problem about her signature. “What about thumb prints?” she asked.

“Are you ready for that?” I asked.

She nodded. “I find it very difficult to sign,” she said. “No matter how much I try, it doesn’t happen.”

“I know you’ve really tried,” I said. I touched her hand lightly, and then moved back; it was the sort of tender gesture I hadn’t made often in the past few years because of all the tension created by her state and our joint inability to cope with it.

We sat quietly for a while, and then I said I’ll find out more about such options. And as I looked at her face, I noticed that wary tension was missing and there was some sadness instead. But there was also an openness between us, a sort of lightness.

It was not as if there were no more struggles or conflicts after that, but we had both glimpsed the possibility of opening up. Whenever things seemed difficult after that, I’d think of times like this, and the knowledge that I could connect with her in spite of her dementia always helped. And those hour-long relaxation slots became nurturing for me, too, at least on most days.

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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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