Category Archives: alzheimers

Tales of dealing iwth my dad’s adventure with Altzheimers & dementia

Remembering my dad, seven years gone

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: Look who showed up for dinner!

This was taken in December 1984.

Windfola was our first cat, and she was always the one in charge of the household. At this point she was already 15 years old, but not showing her age.

She had me well trained. When we sat down for dinner, she joined us. And I had been trained to share my meals with her, if she was interested (and she usually was). She was supposed to be polite and wait her turn. I suppose she sometimes did. At other times it turned into a battle of wills. Eventually I broke and then would carry her upstairs and close her in our bedroom, allowing the people’s meal to proceed in a somewhat civilized manner.

We did love that cat!

Dec. 1984

A public forum: Medical aid in dying

This is a topic that impacts all of us. We’re all going to face death, sooner or later. First through a loved one’s passing. Then facing our own mortality. Don’t we have the right to take control of this all important part of our lives?

Learn more, courtesy of Compassion and Choices Hawaii.

Medical Aid in Dying

Hawaii’s Journey
Tuesday, January 31, 2017 5:30 – 7 p.m.

Hawaii State Capitol Auditorium

WHAT IS MEDICAL AID IN DYING?

Medical aid in dying gives mentally capable, terminally ill adults the option to request a doctor’s prescription for medication they can take in their final days to end their dying process painlessly and peacefully, ending unbearable pain and suffering. Eighty percent of Hawaii voters want medical aid in dying as an end of life option (Anthology Research, December 2016).

• Hear from local doctors, patients and surviving family members about why an aid in dying option is so desperately needed in the Aloha State.
• Learn about the Oregon experience, where aid in dying has been legally practiced for 18 years.
• Find out how Compassion & Choices Hawaii is working to authorize the practice in Hawaii, via both legislation and the courts—and how you can help.

For more Information: msteiner@compassionandchoices.org

Hawaii Supreme Court hears case involving 2012 ballot problems

The Hawaii Supreme Court heard oral arguments this week in a case that stems from problems with the delivery and handling of ballots in the 2012 General Election by the state Office of Elections.

The case touches on both election law, and the rule-making requirements of Hawaii’s Administrative Procedures Act.

Law blogger Robert Thomas observed that it isn’t clear which set of issues triggered the Supreme Court’s decision to review the case.

Maui attorney Lance Collins filed suit against the state Office of Elections on behalf of the Green Party of Hawaii and several individuals as a result of the 2012 election problems. The plaintiffs argue that the Office of Elections should be required to adopt rules to cover the kinds of situations experienced in 2012.

The plaintiffs lost in proceedings in the Second Circuit Court, and that court ruling was upheld by the Intermediate Court of Appeals.

The Supreme Court was then asked to overturn those prior rulings. Its decision is pending.

Here’s a description of the election problems from the ICA decision:

This case arose out of the 2012 General Election. It is undisputed that mistakes were made. There was a shortage of paper ballots in English at a number of precincts across the State. In addition, when reserve ballots were sent out to the
polling places, there was a mix up of the ballots sent to two locations; this resulted in 57 voters casting votes on incorrect ballots. It appears, however, that: all voters in line at the close of voting received the opportunity to vote; if English language paper ballots were not immediately available at a particular polling place, voters could vote at an electronic voting machine or on an alternative language paper ballot; every voter who signed a precinct book cast a ballot; every voter who voted on the wrong paper ballot had his or her vote counted in every race in which he or she was entitled to vote; and, none of
the races that could have been impacted by the ballot mix-up were close enough to have been affected. Nevertheless, as widely acknowledged, Appellees’ execution of the 2012 General Election fell short of the electorate’s reasonable expectations.

It was in response to those problems that the Green Party plaintiffs filed suit, seeking to force the Office of Elections to formally adopt rules to govern its procedures.

Here’s a description of the issues from the Judiciary website:

This case involves an action by the Green Party of Hawaii and seven registered voters who voted in the 2012 General Election (Petitioners) seeking a declaratory judgment pursuant to HRS § 91-7 (2012) that certain methodologies and procedures used by Scott Nago, Chief Election Officer, and the State of Hawai`i (collectively “Respondents”) in the 2012 election are invalid under the Hawai?i Administrative Procedure Act (HAPA). Specifically, Petitioners contend that Respondents violated rule-making requirements for failing to adopt administrative rules pursuant to HAPA regarding the methodology and procedures used to determine the number of ballots to be delivered to the precincts, request additional ballots when a precinct runs out of paper ballots, and address the situation where a voter votes on a ballot that includes some races in which the voter is not entitled to vote.

I haven’t had time to listen to the recording of the Supreme Court session, which is available here.

Other background:

Decision of the Intermediate Court of Appeals

Plaintiff’s pplication to the Supreme Court

State’s response in opposition

Green Party reply to the state