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.

advertisement

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.

Judith Graham & Deborah Graham
The author, left, with her sister Deborah in November 2014, a year and a half after Deborah’s diagnosis. Courtesy Judith Graham

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.

Judith Graham & Deborah Graham
Deborah and Judith Graham in the memory care facility, a few weeks before Deborah died. Courtesy Judith Graham

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.

Leave a Comment

Please enter your name.
Please enter a comment.

  • Powerful compassion
    Honesty
    Situations grappled with
    Love
    Thank you. Beautifully respectfully perceived and written God bless

  • Such a wonderfully written and terribly sad story. My is in the 11th year of his FTD diagnosis and still at home. We struggle with all of this all the time. I am blessed to have wonderful caregivers but will also have him moved to a facility when the time comes. I would like for people to also know that there are support groups available for FTD, but are very difficult to find. FTD IS NOT ALZHEIMER’S! Anyone caring for someone who has been diagnosed with FTD or who thinks they have FTD should go to THE ASSOCIATION FOR FRONTOTEMPORAL DEGENERATION web site (www.theaftd.org) to get information to get information. You will find the Support Groups which will give YOU the support you need. No one understands except others going thru the 24 hour care. God Bless You All for sharing your experiences.

  • Unless one experiences being the primary caregiver for someone with FTD they do not know what it is like and the the ongoing challenges that need to be confronted. For almost 9 years I was the primary caregiver for my wife who had FTD. She passed away at home 6 years ago this month. Practical caregiving resources for caregivers of FTD patients that are at best minimal today were almost nonexistent when I was caring for my wife. In my opinion FTD is much worse and presents caregivers with different and often times more difficult challenges than Alzheimers disease. Furthermore, in the earlier stage of the disease each FTD patient can present different specific behavioral challenges that are very difficult to manage. With my wife I had the challenge that she was unable to effectively communicate and comprehend any communications to her the last 7 years of her life. She began to first gradually lose her ability to speak 12 years before she passed away until she became mute the final 4 years of her life. Each situation, each person is different but while I cared for my wife I had plenty of time to think about how I would handle any life prolonging or end of life decisions for her, since she was unable to do that herself, I thought likely lay ahead. I do not believe in prolonging life artificially with feeding tubes and other equipment, especially for dementia patients who are in the end stages of the disease. My wife, when healthy, did make out a health care directive which stated similar beliefs. However, prior to that when the person is in middle to advanced stages of the disease, still physically capable but no longer having the mental insight or ability to feed, bathe, toilet, etc. themselves, it is not so clear as to what to do. What would I do if she caught pneumonia or some other normally very treatable illness? For other much more serious life threatening illnesses such as cancer I was much clearer in the direction I would take. In the final 9 months of my wife’s life her physical health precipitously declined and she eventually lost her ability to swallow without choking. Fortunately I had sought out the support of hospice service during this time. It was a very long journey for me but I knew it was time to let her go. She passed away 6 days after I stopped feeding her.

    • Your letter should have been the article. Your letter could have ended before you decided to let her go.
      You took care of your wife. You agonized over the what ifs- and you stated the ‘what ifs’, unlike the featured article. You challenged people to think. I do not think that any decision was easier for you because you are male. I also feel that you really understood what was happening to your beloved.

      Thank you for sharing so much agony.

  • This may sound harsh but a lot of this article sounds a little to me like it was written by a person who saw what she wanted rather than following her loved one’s wishes. I am appalled at the though of becoming disabled for myself. I would not want to suffer through a long decline.

    • I agree with you. It’s not as though anybody is saying euthanize the sister, but we are being shown a slow decline and neglect. The thought of being allowed to injure myself repeatedly causes fear.

    • Disagree, totally. If her sister was happy and she appeared to be, why cut her life short? She did everything possible to keep her at home and then found her a good place to live. If her sister showed obvious distress about her illness and its symptoms, maybe she would have done things differently. My husband has had frontotemporal degeneration since some time in mid-2010, although he wasn’t diagnosed until September 2012. Judith, you are my hero. God bless you.

    • This is directed to your detractors below. I have a neurodegenerative disease myself and have carefully worked out “plan B.” I pray that I have the mens rea to put it into practice before most of my marbles go down the drain and I burden loved ones and lose my dignity. Pseudobulbar affect and lack of insight are symptoms of the later stages of this disease, which scares the h*ll out of me. I still work 50 hours a week, and most of the people I work with do not know that I am sick. My QOL has declined quite a bit, with a heavy dose of anxiety-but at least I have insight into my predicament. I also have no energy, frequent urination, difficulty swallowing, but live by myself. I won’t presume to speak for this woman’s sister, but having accomplishments myself similar but not so impressive, I feel like I died a bit when I got dxed, and she was no longer the same person. And, she didn’t want to live that way.

  • Thank you so much for writing this article and sharing your sister’s story. You have an amazing way with words and you’ve so helped me. Your sister sounds a lot like my husband. He had such an outgoing personality and wonderful way with words. Last year at 56 he was dx with FTD after a year of me not knowing why he was changing so much. Just found out he may also have ALS. I so want to keep him at home but after reading your article I feel better if he did have to go to a facility some day. I have also found that although he’s changed so much and is much quieter he is so sweet and seems happy. I think for the same reasons you mentioned about your sister letting go of worries and living in the moment. Thank you again for sharing. I was sad to see some judgmental comments from people who haven’t been on same journey. My husband has lost so much insight into others but I swear he still can feel judgement and when he does he retreats. When people just love him where he’s at he’s happy. Your sister was so fortunate to have you.

    • A simple amen. Unless one is a part of a very similar situation there is no way that one can even somewhat accurately judge it.

  • For those talking about neglect-Would you want to ask for help whenever you needed to use the bathroom? I wouldn’t . Most people wouldn’t . My mother didn’t want to ask for help,despite the fact that she frequently fell. She expressly stated that she did not want assistance and would not ask for help. To the inspectors, it looked like her assisted living facility was falling short of it’s safety standards, as she was falling almost every day. So, what do you do? How do you ensure personal autonomy and dignity and safety at the same time? Is allowing someone to make their own decisions neglect or respect?

A roundup of STAT’s top stories of the day in science and medicine

Privacy Policy