Category Archives: Aging & dementia

The death with dignity debate needs to continue

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In a March 1 post, I reprinted an earlier column expressing support for legal recognition of our right to choose how and when to die. The post was prompted by an upcoming vote on a limited “right to die” bill that subsequently passed the house. The bill has now been approved by the Senate health committee, and has one more committee hurdle to clear in order to get a vote of the full Senate.

The post drew a quick question, one which exposes the significant limitations of the bill now being considered in Hawaii. I’m posting here for those who don’t follow the comments.

Jim Wright | March 1, 2018 at 8:49 am
How would the change in the law have changed the care your parents received?

Ian Lind | March 1, 2018 at 9:12 am
It wouldn’t have. Neither of my parents had time to consider this kind of option while they were still all there mentally. So the restrictive nature of the bill limits its application. But once in place, I’m guessing it will be easier to amend as experience is gained. We already virtually require people to have a living will or medical directive in which they can select a “do not revive” option. A medical aid in dying bill should ideally allow someone to look ahead and give directions to others to relieve their suffering at a later time if they were then no longer able to make a clear, conscious decision.

A recent Washington Post article looked at the efforts to expand the scope of Oregon’s law (“In Oregon, pushing to give patients with degenerative diseases the right to die“).

Here’s an excerpt, which notes the unusual political twist to the issue.

Rep. Mitch Greenlick (D), chair of Oregon’s House Committee on Health Care, began looking into expanding the state’s Death With Dignity Act a few years ago, when a well-known 78-year-old lobbyist in the capital, Salem, fatally shot himself in the head after learning that he had Alzheimer’s.

“That really shook me up,” said Greenlick, a retired director of the Kaiser Permanente Center for Health Research. “I started thinking, people with Alzheimer’s should be able to have some control over how they die, rather than having to shoot themselves.”

His 2015 attempt to expand the terminally ill window from six months to a year failed. Next year he plans to float another bill that would open up the state’s Death With Dignity law to dementia patients by doing away with all stipulations about terminal time limits.

Some of the efforts have faced opposition from an unlikely adversary: the national right-to-die movement. In particular, groups such as Compassion & Choices, the nation’s largest right-to-die organization, and the Death With Dignity National Center, a main author of the original law, have little appetite for widening access to lethal drugs in the states where medically assisted suicide already is legal.

This can already be done, to some extent, with a combination (not unusual in hospice care) of a strong advance medical directive opting out food or fluids if not able to eat on your own, coupled with liberal doses of morphine after stopping food and water, while the process of dying is rolling on.

As the baby boom generation ages, there are obviously far more of us than ever before contemplating what’s ahead, and how we would each like to manage our final choices. It seems almost inevitable that laws will eventually bend to accommodate our demands.

A Throwback Thursday Thanksgiving

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It’s a Thanksgiving Throwback Thursday!

I wandered through various Thanksgiving memories, looking for something worth giving an encore reposting, and settled on this entry from 2009. My dad was in a Honolulu nursing home. He suffered from dementia, but he could interact and carry on a conversation, with a few unexpected twists and turns. So Meda and I went to join him for the Thanksgiving meal they were serving.

This is the story, retold.

But first, please have your own Happy Thanksgiving!

———————

The good news was that we arrived well before lunch and found my dad sitting at a table with three other men in the third-floor common room of his nursing home. Small paper turkeys decorated the walls, signaling that Thanksgiving had arrived. There was a little sign on the table in front of him, a single piece of heavy blue paper folded lengthwise into a triangle, resting on one side, with his name hand-written on the side facing him: “John Lind”, it said simply.

John LindHe was dressed in the Winnie-the-Pooh t-shirt Meda found recently in the Kaimuki Goodwill Store, and a pair of flannel pants from Costco that he enjoys.

He insists on t-shirts with pockets so that he has a place for his glasses, and Meda’s been on the prowl in the thrift stores she visits.

He was surprised to see us. We explained we were there to have lunch with him.

“Oh, lucky you found me here,” he said, as if he might have been out and about town instead of here at a table with several other men on one end of a big room with dozens of other elderly patients in various degrees of ill health.

He quickly asked if Bonnie, my sister, was also coming. We said she wasn’t expected. It didn’t sound quite as bad as “no”.

“And Helen?” he asked, referring to my mom.

I told him that her knee has been hurting and she hasn’t been getting around much. All true. I didn’t say that at age 95, she also finds visits to the nursing home to be a trial.

Then he asked if I had a pen. Nope, but Meda produced one from her purse.

“Write a 4 on the sign,” he said, pointing to the paper in front of him. Meda dutifully wrote “4” in small print next to his name, then asked what it meant.

“That’s so they won’t forget our reservation,” he said.

In his mind, we’re in a restaurant where he had a reservation.

After a few references to the holiday, we quickly figured out that he wasn’t making the mental connection to “Thanksgiving” and all it entails.

First, he told us that he was expecting an eight-course Chinese meal to be delivered.

“It’s all supposed to be arranged,” he said, a little friendly conspiracy in his voice.

“Do you like Chinese food?” Meda asked, surprised by the idea.

“Some of it,” he responded somewhat noncommittally. Actually, come to think of it, that was probably a very honest answer.

We explained that it was Thanksgiving, and that they actually would be serving a special turkey dinner. That’s why we were there, along with other residents of the third floor and a handful of their family members. Not as many visitors as I had expected. Perhaps some people took their old folks home for the occasion. We weren’t prepared for that.

I did tell him the good news that Bonnie would be cooking a pie or two.

He asked quickly: “What kind?”

“Pumpkin,” I say, realizing again that the Thanksgiving connection isn’t being made.

But, obviously, it could be a lot worse.

Then he was off about his car, a theme that returns, like the seasons but on a shorter cycle.

“I’ve lost my car again. Both cars,” he told me, somewhere between worry and anger. “I can’t find the keys. I don’t know if someone is playing games with me.”

To Meda, who was sitting over on his right: “How do I report a stolen car? Actually, I’ve got two cars that are missing.”

I don’t press for a description of the missing cars, because the last time he couldn’t remember anything specific about them, just the concept “car”, and I don’t like to lead him down the trails of dead-end memories.

“Maybe I’m better off without them,” he finally says. “I should just ride my bike.”

We encourage that line of thinking, and soon he’s forgotten that the cars were an issue.

He’s now anxious for lunch to be served, although it’s still early, only about 11 a.m.

He asks if I’ll go remind the waitress of his order.

Then he asks, “How was the weather in Waipahu when you left?”

He’s surprised when Meda says that we came from Kaaawa. Waipahu was where my mother’s parents lived when my folks were first married back around WWII. Does he think I look like my grandfather? Another chip away on the self-esteem front.

He posed for a few pictures, pleased by the attention, although he worried that he hadn’t shaved.

Somehow, in the midst of keeping small-talk going, Meda asks if he ever has trouble sleeping.

“I have trouble not sleeping,” he responds without a pause. “If I put my head down”–he acts it out, his head going down onto the table in front of him–“I’m asleep.”

Then he looks at me and asks: “Who’s paying for all this?” The bed, the “hotel room”, the food service?

“Oh, it’s covered by your insurance,” I reply, lying. “Don’t worry, it’s all taken care of.”

In fact, it’s an expense that is quickly draining the assets he built up over the past 95 years, including over 60 years in business. But he doesn’t need to hear that. He’s obviously got enough to worry about, what with missing cars, lost freedoms, unknown locations. The money part keeps me awake now. It’s our problem at this point, not his.

Luckily the food arrives. All attention goes there.

Meal served

He quickly observes that we’ve got small plates of turkey and gravy, while his plate has mashed pototoes, vegetables, and ground turkey on a bed of bread stuffing. We pointed out that his ground concoction was also turkey, just easier to eat. A nibble on the first fork full from his plate seemed to do the trick. He slowly dug in.

A bite of turkey. A few vegetables. Very soon he cut into his slice of pumpkin pie and took a bite, and I thought he would just fast-forward to dessert. But, no. He ate slowly but methodically. Meda shared her little container of cranberry sauce. His fork was a little unsteady, but he managed to eat through everything on his plate, then his pie, and then he asked about the pie sitting uneaten in front of Meda. She moved it over onto his tray, and he was happy.

Clean plateThe result: Meal declared a success.

We asked if he wanted to go back to his room for a post-meal nap.

“No, I think I’ll go home.” He started to look for his walker, which was parked just out of reach, to start the journey.

It’s another awkward moment, repeated quite regularly, but we still haven’t gotten practiced with a graceful reply.

At this point, “home” is a jumble of memories. He usually means the modest single-wall wood frame home in Kahala where he lived for over 65 years before finding himself in a single bed in a narrow room shared with three other aged men. Sometimes it’s the house on Vista Street in Long Beach, built by his father after the family moved down from the northern part of the state. It might be his childhood home in Berkeley. It might even be the bunk on his boat at the Ala Wai harbor.

Luckily, one of the nursing assistants sees him struggling to stand and comes over to take charge, tells him to wait for her to come right back. He wants to get going before she returns, but we keep him in check. She’s back in a few seconds to help him stand, then transfer his weight to the walker, then slowly make his way out of the room. We somewhat sheepishly say our goodbyes and slip out towards the elevator as she steers him back to his bed. He’ll quickly forget that he had intended to go “home”, wherever that is now.

But, just in case, we decide not to wait for the elevator and take the stairs instead.

It’s not a graceful exit.

Remembering my dad, seven years gone

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Today is the 7th anniversary of my dad’s death in 2010.

Looking through my blog posts from that period, I found one dated about a year before his death. He had already been in the nursing home for about a year.

I’m reprinting here in full.

You’ve got to read until the end to get the heart of it.

It’s one of those small moments when my dad surprised and amazed me, and continues to amaze me with his unexpected grace under such dismal and difficult circumstances.

Another visit: The third floor chorus. October 16, 2009.

Last weekend, I realized that I had been finding excuses to avoid visiting my dad. No time today, I think to myself. Of course I want to stop by, but this or that thing just popped up that “needs” to be done instead.

Visiting isn’t joyful, although there are, I suppose, small moments to be treasured. Walking into the nursing home is a reminder that this is a one-way trip we’re all on, each patient now only a fragment of a life lived, a family raised and scattered, hopes, whether fulfilled or not, now only fading memories, if memory by chance remains. Walking down the hall towards his room requires negotiating passage past men and women in wheel chairs, leaning on walkers, moving slowly, sometimes painfully, or sitting, some alert, some blank, past nurses managing medications or special care, past nursing assistants providing the nitty gritty hands-on support needed for so many simple tasks, getting up, sitting down, getting to the bathroom, getting out of bed, greeting a son or daughter. It’s an inescapable reminder of our own mortality, and I find myself mentally fidgeting, subtracting my age from his and wondering about how long it’s possible to avoid this collision path with aging.

One patient dies, another takes his place. That happened again recently in my dad’s room, and so there’s someone new in the next bed. He’s hooked up to a medley of electronics and tubes delivering oxygen, monitoring responses, dripping solutions or medications. There’s a curtain separating their beds most of the time, but some times of day it’s apparently pulled back and my dad can turn his head and see what’s going on over there.

The first day I visited after the new patient’s arrival, my dad pointed to the curtain, and whispered: “That man sleeps with his mouth open.” He imitates, opening his mouth, exaggerating the act of breathing. It bothers him, the open mouth in the next bed, although I’m not sure why he fixates on this among all the things he hears and sees each day.

Then there are the sounds. When I arrive, my dad again points to the curtain, asks me what’s going on. He can hear can hear one of the CNA’s at work, tries to hear what she’s saying.

“What’s going on out there,” he sometimes asks me, pointing generally towards the rest of the room and out to the hallway. “It sounds like they’re doing a lot of work in the hotel today,” he’ll say, his mind trying to make sense of the sounds beyond his own sheltered bed next to the window over looking the bus stop on Beretania Street and City Feed Store.

He listens to the beeping machines, sounds of heavy breathing. Then there are the occasional human sounds. Moans, shouted, seemingly requiring more accumulated energy than the wired-up man in the next bed could possibly muster. He groans loudly. Repeats. Once. Twice. Again. No real rhythm, no language. A strangled sound of frustration. The nursing assistant tries to shush him.

“Don’t make noise, Mister,” she calls. “Oh, don’t make noise.”

I can’t tell whether these are involuntary visceral outbursts or attempts to communicate. If it’s communication, I admit that I’m trying not to listen, as if ignoring the disturbance it will somehow shield my dad from it as well.

And I find myself not wanting to know what’s really going on. It’s hard enough dealing with my dad’s condition, and I draw a mental curtain around us. I know that I should extend my empathy to the others here in the room and on the floor, but I haven’t gotten into the space to do that. So I pretend not to pay attention to what’s going on behind the curtain. I know it’s distressing for me, and I’m only there for short periods. I worry about the toll it may be taking on my dad, who is there essentially 24 hours a day, all the while struggling to make sense of what’s happening in the next bed. Or, as he says, the next room. Next door. I want to pretend all is well, but the sounds of labored breathing, interrupted by urgent moaning, give the lie to my efforts.

When I arrived to visit one day earlier this week, made my way down the hall, stopping first for a squirt or two of hand sanitizer, into the room, past the other beds, past moaning man, then around the curtain, and found my sister, Bonnie, already sitting at the bedside. My father is on his back, sheet pulled up just above his waist, foot moving restlessly under the sheet. He’s awake, lucid. Bonnie finds the button to move the head of the bed higher so that he’s almost in a sitting position.

I look to sit down. The nearest empty seat was the portable hospital commode sitting in front of his bed, next to the closet. On the wall, two photos, one of my nephew’s daughters, one of my dad on his boat after a successful fishing trip. On a not so good day, Bonnie says that he looks at those photos and asks who the people are. On a good day, I point to the boat and he smiles gamely, not letting on whether or not he is remembering.

In any case, I select his walker, which has a built-in seat, move it over near the foot of the bed, sit down. We make conversation for a while, Bonnie’s good at that. After a while, the man behind the curtain started the loud groaning again. There’s nothing we can do about it. I flinch. It’s jarring, uncomfortable. I want to get away but can’t.

I watch for my dad’s reaction.

He looks to his right, then gestures at the curtain and beyond.

“Would you call that ‘disturbing’?”

We nod, yes, of course. The groaning from behind the curtain continues. I’m worried about my dad’s reaction.

Then he slowly raises his right hand off the bed, holding it out in front, palm down. The hand moves, slowly, up and down, left and right, and suddenly I see the twinkle in his eye and realize that his hand is moving with the sound from beyond the curtain. He’s no longer just enduring a disturbing sound, he’s directing it, leading the choir. Taking control of events, even in this small way, a big victory.

Live and learn.

Throwback Thursday: Letters on death and dying

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This is not my usual Throwback Thursday.

As regular readers know, I’ve been on a long voyage of discovery sifting through my parents’ papers and photographs since my dad was first hospitalized around Thanksgiving in 2008.

But I have just come across perhaps the most painful and most beautiful thing I’ve found to date. It’s a series of letters written by my mother, Helen Yonge Lind, to her brother and/or his wife over the five weeks before their mother’s death.

I think these are the originals, returned to her later. They are remarkable.

There’s a link to the letters at the end of this post.

In them, my mother describes the physical and psychological toll of caregiving, the trauma of dealing with the impending death of a parent, the incredible strength that people are capable of at these moments, the tensions within families dealing with this inevitable crisis, and more.

[text]They date from the summer of 1959. The cast of characters: My grandmother, Heleualani Cathcart Yonge. At the time, she was 71. My mother, Helen, then age 45. Her older sister, Marguerite Shipp, who lived in Nevada. Their younger brother, James “Jimi” Yonge, who sailed the Pacific on Matson’s ocean liners, while his wife, Ida, lived in San Francisco. My dad is conspicuous by his absence. I don’t think I saw a single mention of him. My sister and I appear only by reference to “the children.” I turned 12 that summer. My sister, Bonnie, was four years older.

The first letter, dated July 19, 1959, is to Jimi and Ida, in San Francisco. Actually, Ida was in San Francisco, but Jimi worked on the Matson cruise ships that sailed the Pacific, always heading in or out of port, just passing through.

In the first paragraph, she conveys the difficult news. Their mother was dying. She was in pain, going downhill medically, and needed more assistance than my mother was able to offer her. She tells of the emotional trauma she was experiencing dealing with her mother’s deteriorating condition, of living between two worlds, with a family and two children in Honolulu, and her ailing mother in Waipahu.

The greatest shock I have had to face is looking her in the eye and telling her as gently as possible that there is little help except drugs to ease the pain, and that she must soon face death. Of course she knew it, but where there is life there is always hope.

She writes about something we’ve now experienced, trying to convince a dying parent that it would be better to get care in a hospital rather than insist on staying at home. She understood her mother’s desire to die at home, but saw no way to provide the care she needed in order to remain in her Waipahu house.

Then there’s this long passage.

I know that you are thinking how stupid it was of her not to go for medical aid in the very beginning. Up until Tuesday night, those were my opinions too. But you cannot hear her story without admiring her. She noticed the first symptoms about 3 or 4 years ago. She knew exactly what it was because she had helped with the care of old Tutu Nawaakoa who had the same thing. So she sat down and figured out the different courses open to her. An operation to remove a breast is a serious operation at any age, but for a woman approaching 70 it can quite possibly mean certain death, of if successful, another 10 years or even 15 years as sort of semi-invalid. It meant she would become financially and physically dependent upon her children and in her mind she might as well be dead. So she made up her mind to spend the rest of her life traveling around. She enjoyed every minute of it and she is not sorry. Those memories sustain her. When she knew she could go no longer she went home to die. Of course, she was under the impression that in a couple of months she would be dead. But the months have stretched out to almost 7 and it is a great disappointment.

The second letter was to Ida, written just eight days later. My grandmother’s condition had worsened, and it was now difficult for her to get to the bathroom or to care for herself, even with assistance. My mother’s effort to get her to agree to move to a hospital intensifies.

She writes of her mother’s amazing courage and faith as she greeted a steady stream of visitors.

Most of the callers don’t know she is going to die very soon, nor do they know that she knows it. She never lets on or breaks down in any way. She has asked me to tell two of her most loyal friends, and the way they broke down, you’d think they were the ones going soon. She never comlains about her lot. The only thing closest to a complaint is that she “prayed for God to take her, but I guess he just isn’t ready for me yet.”

The final two letters carry the story forward, through Jimi’s short visit, and my mom’s difficult interactions with her sister, Marguerite, who had arrived from the mainland. She writes of the terrible tension between the sisters, the one just visiting, the other living with the situation for months.

In a long letter dated August 14, 1959, she discusses the uncertain financial side of hospitalization, and describes the problem of finding a doctor in Honolulu who would agree to admit her mother to the hospital with the understanding that treatment would be limited to what is now referred to as palliative care only. That’s certainly one area where medicine has come a long way.

I had to shop around to find a doctor who would come to terms with me because I feel it is cruel to deliberatley prolong that life. The doctor at Waipahu suggested a friend of his who might agree to just make her comfortable and let nature take its course. In medical circles it is called “calculated neglect.” There are no x-ray treatments, no intravenous feedings. Just drugs to control the pain, the uneasy stomach, and drawing off the urine to give comfort. On Monday before Jimi came, she refused all drugs because she was afraid she would be too groggy to see him and recognize him. It just broke me heart when she couldn’t hold out any longer and told him, “I think you’d better go now. I don’t want you to see me in pain.”

The last letter was written on August 24, 1959, just the day before my grandmother died.

It begins: “It is simply amazing to me what punishment the human body can take and still live on and on.”

And she writes about the near break with her sister, who she found was encouraging their mother to stay at home, while my mom had been working overtime to find a hospital and a doctor willing to admit her. In the letter, she describes finally losing her temper and saying that if Marguerite persisted, my mother “washed her hands of the whole thing.” She threatened to simply leave and let Marguerite stay to provide the 24-hour care. That was apparently a winning argument.

These letters echo through time. More than 50 years later, roles were reversed. My mother was now in her late 90s, in failing health. We tried multiple times to convince her to move into a setting where she could get the 24-7 assistance that she needed. She refused to budge. She now wanted to stay in her home. I wish I could have read her earlier letters back to her as we faced the same issues so many years later.

In any case, it’s a remarkable series of letters. Hard to read, for sure. But I’m so glad that I found them. I appreciate all these women more deeply as a result.

You can read the series of letters here.