My sister made her end-of-life wishes clear. Then dementia took hold

Before my sister was struck by frontotemporal dementia, her wishes were very clear.

No feeding tube or breathing machine if she became profoundly incapacitated, without the prospect of recovery. No aggressive life-sustaining measures.

And she wanted to stay in her home, all the way through.

But that was then, when the prospect of becoming infirm was abstract. When illness descended, my sister changed. And I found myself wondering whose wishes we should respect. My sister, as she had been? Or my sister, as she was now?

My sister-before-FTD was one of the most verbal people I’ve ever met. Hum a tune from a musical comedy, and she’d merrily sing every verse. Her memory for lyrics was encyclopedic.

She was proud of her Ivy League degree, gratified by her professional accomplishments, and effusive about her three children. Generous and sensitive, volatile and argumentative, she liked to be the center of attention.

The type of dementia that overcame her strikes the brain’s frontal lobes, which regulate behavior, putting a brake on impulses and allowing reason to moderate emotion.

This part of the brain allows people to plan, think ahead, put things in context, have insight. Without these abilities, my sister didn’t understand that she was ill — a condition known as anosognosia.

Nor could she appreciate her limitations. She’d stand in front of the coffee pot holding a bag of coffee, uncertain how to proceed. Opening the cabinet to find a filter, putting the filter in the top of the coffee maker, pouring in water, pushing the “start” button — these were steps in a sequence she could no longer follow.

But hand my sister a cup of coffee from Starbucks and her eyes would light up. Her taste for a cup of Americano never diminished.

She was there — and not there — at the same time. Herself, yet entirely different.

When did dementia begin poking holes in my sister’s mind? I started suspecting something was wrong in 2012, after several disconcerting incidents. But the diagnosis didn’t come until the spring of 2013.

She was 56 years old.

It was inconceivable. My sister, the youngest in our family, had long feared that she would develop an incurable neurological illness — as had my mother, who had multiple sclerosis.

It’s why she insisted that if incapacity enveloped her and hope fled, she wanted her life to end.

Yet as my sister’s illness progressed, something entirely unexpected happened. Her demanding nature softened. She seemed to enjoy life more.

Was it because she could no longer remember the experiences that had troubled her for years? Or had she let go of the past?

Was it because she had become apathetic — a symptom of FTD? Or had she learned how to live, happily, in the moment?

It seemed she had entered a different dimension of human experience — the world of dementia, where a different set of rules applied. But how were those of us who lived outside that dimension supposed to follow her? How were we to know what she was really feeling, what she really wanted, in her altered state?

I’d come to my sister’s house and find her in a sweater covered with coffee stains. Because her swallowing wasn’t reliable, liquid would spill out of her mouth, onto her chest.

She didn’t seem to mind. I did.

She used to be picky about her appearance. Bright colors, bold patterns, jingly bracelets, nice necklaces, striking earrings — that was her signature style.

I knew it was time to let go of the way things were and take my sister as she was: often messy, sometimes unkempt, yet almost always smiling.

This was a small adjustment, all things considered. But it meant learning to suspend judgment — that impulse to exclaim, if only internally, “You’re not the same!”

I knew enough about dementia to know that even if I didn’t speak the words, she might perceive a flash of judgment cross my face. Even when reason fails, intuition remains.

Still, it was hard to let go. If my sister put on a blouse inside-out, I’d have her put it on again — the right way. I’d take her out to get her hair washed and her nails done. Or I’d coax her to take off the parka she wore around the house and throw it in the laundry.

As if trying to ensure she was presentable would fend off disaster. Which it didn’t.

What my sister needed most from me, I felt, was reassurance that things were OK and she wasn’t being judged.

That became harder as her dementia progressed and a terrible new problem — amyotrophic lateral sclerosis, or ALS — emerged.

My sister began to fall when she went out to walk the dog. Unaware of the need to protect herself, she’d land on her face, nearly knocking out some teeth.

She couldn’t be relied upon to shut the gas off after she’d taken a pot from the stove.

She forgot how to turn the key in the back door and let herself in.

Worrying about my sister’s safety became an obsession. Would she make it down the stairs of her home without taking a tumble? If she lit up a cigarette, would she remember to snuff it out?

Would she wander off and get lost and not be able to ask for help?

Her voice had been getting softer and sometimes I couldn’t understand her. Two years ago, just around this time of year, she stopped talking altogether as her vocal cords stopped functioning.

My impulse was to protect her. Her impulse was to do her own thing. What was the right balance? None of us knew. No one could tell us.

We were flying by the seat of our pants.

My precociously verbal sister became mute. Another step into a new dimension of being.

We communicated as very young children communicate with their parents. We smiled. We held hands. We walked side by side under trees that were turning yellow and red in the brilliant fall sunshine.

For a while, my sister could write. Every now and then, she’d use a word that reminded me of her prodigious vocabulary. Was it possible that her keen intelligence remained intact at some level?

One day, she wrote that she didn’t want to be seen as disabled. I was so flummoxed, I wrote out “you aren’t” followed by an inappropriate series of “ha ha ha’s .”

I wanted to keep things lighthearted. I didn’t want to scare my sister or let her see how scared I was.

Mostly, she remained sunny. Sometimes, I felt that a lamp inside her had been lit and was shining through her being.

It was as if everything inessential was being stripped away. And as that happened, a kind of simplicity and purity emerged.

For my sister, being safe wasn’t a priority. Her foremost concern was retaining some degree of control over her life.

But there came a point when she couldn’t be left at home, alone, any longer.

An aide was hired; she didn’t last after my sister made it clear she wanted nothing to do with her.

Another aide came and stayed longer. But my sister didn’t want to be supervised. Tensions grew. The situation became untenable.

It was a crazy time. My sister didn’t know why she needed someone to take her to the store, or walk with her on the street, or check on her when she was in the bathroom.

And yet, the list of things she couldn’t do kept mounting. She would grab a candy bar, tear off the wrapper and stuff it into her mouth. I’d have to rush up to her and pull it out to keep her from choking.

The conflict was wrenching. I wanted to protect her. But I could only do so by saying, “no, don’t do that,” over and over. She could only be safe if she sat hands folded in her lap, doing nothing.

Which wasn’t what she wanted.

But it was past time when my sister could call the shots. She needed attending to, whether she liked it or not.

We foresaw a string of aides who would come and leave when my sister’s hostility proved unrelenting. Her cherished wish, to be cared for at home, was becoming impossible.

We who spent time with my sister during her final months may have thought, “this is horrible, this loss of capacity.”

But my sister was glad to be alive.

It was as if her super-ego had disappeared. The internal critic that had bothered my sister for much of her life was gone.

I suspected that this critic had a part in the wishes my sister had expressed before her illness. It couldn’t tolerate the prospect of severe impairment. Or dependency. Or exposure. Or vulnerability.

Yet my sister had reached that state, all those states, and she was calm. She seemed happy.

We will never know what my sister thought during that time. She couldn’t talk and she didn’t write much. When she did, it was clear she wasn’t a reliable narrator.

By then, she’d moved to a memory care center. I had dreaded that decision, put off for as long as possible. I was sure my sister would be miserable in this facility, surrounded by frail men and women several decades older.

She wasn’t.

She high-fived the staff as she walked up and down the halls for hours every day. She danced with a male aide she seemed to like. She became so well-known so quickly, she was named resident of the month not long after she moved in.

Was the quality of her life what she had imagined as acceptable? No. Did those of us who knew her best think she was remarkably well-adjusted and content? Yes.

I never would have predicted this. Which goes to show how little we know of what the future may hold. All we can do is guess.

The last months of her life, my sister seemed to become smaller and even more childlike. She’d lost more than 50 pounds over the course of a year and was almost entirely unable to swallow.

The day before she entered inpatient hospice, I was with her as she choked at lunch and her eyes flooded with terror. No, I thought then. She cannot go this way, feeling out of control and terrified.

But what was the alternative? Would she want a feeding tube to keep her alive?

The medical literature recommends against feeding tubes for people with end-stage dementia. My sister’s wishes before she became ill were clear.

And yet.

Her life had value, of that I was sure. That idea that value is erased by disability — that was clearly wrong.

And yet.

There was no course forward. A feeding tube would only prolong an inexorable process that was clearly underway.

And yet.

I had learned that the light of my sister’s spirit was stronger than her illness. It would survive.

In inpatient hospice, we gave my sister liquid with a dropper, squirting it into the back of her mouth. Sometimes, she could take a bit of applesauce on a spoon. We’d wait to hear a gulping swallowing sound. And then, after giving her time to rest, we’d try again.

She was fading. Family surrounded her day and night.

We never sat down and talked about my sister’s wishes. But they informed what was happening along with another set of wishes, which we all understood but had never been articulated: “Treat me with respect. Be there by my side. Love me. Remember me.”

In the end, the feeding tube was a side issue. My sister was dying, one way or another, and nothing could change that trajectory. Her husband and children decided against artificial nutrition or hydration. It was what she’d said she wanted. They don’t regret it. Neither do I.

And yet.

We didn’t turn away from the feeding tube because of the wishes my sister had laid out earlier. We were honoring both the person she had been and the person she had become by making sure she didn’t suffer unnecessarily. Every step of the way, we let her know her life had value. And when the hard times came, we didn’t duck. We were fully present.

My sister passed peacefully last November, surrounded by people she loved. She was 58.

When I think of her now, I think of a romantic girl, an exhilarated college student, a striving 20-something, a passionate wife and mother, and a person with dementia whose lust for life and inner light shone all the way to the very end.

That light has become a beacon, deepening my sense of what it means to be human and what’s possible at the end of life. I carry it with me to this day.