Trying to Communicate

Thursday, 30 November 2006

As we search for methods and techniques for my dad to communicate, I came across this article posted on the Yahoo! Groups chat room. We must figure out how Dad will communicate and how he wants to communicate while he still has his voice.

THE PERILS OF MUTE COMMUNICATION

By Dov Wisebrod

Like characters on the original Star Trek and, more recently, South
Park, I often communicate only by indicating "Yes" or "No."

I have Lou Gehrig's disease (amyotrophic lateral sclerosis or ALS), a
disability in which motor neurons die, muscles atrophy, and complete
paralysis ultimately occurs. I have had ALS for more than 12 years,
and I rely on machines and tubes for eating and breathing. ALS rarely
affects higher brain function, so although I can't move my limbs or
speak, I can still be creative and manage my own care, as long as I
have a way to communicate.

Communication is exceptionally difficult, yet essential, for people
like me. Maintaining the ability to have a conversation and interact
socially is vital to quality of life as my body deteriorates. There
are a wide variety of means for alternative and augmentative
communication (AAC), including technical devices (like Stephen
Hawking's computer) and non-technical methods (like following a
person's gaze on an alphabet board). I use one of each type of AAC to
communicate.

I operate my computer using a single sensor taped to my toe. When I
bend my toe, a signal is sent to accessibility software that I
created, and my software allows me to operate my computer. I can
communicate reasonably well by typing slowly and having the computer
speak what I type. But there are times when my computer is
inaccessible, for instance, when I wake in the morning, when I am in
a hospital, or when the computer inevitably crashes. Without my
software, I resort to facial expressions that signify "Yes" (raised
eyebrows) and "No" (eyes, mouth, or head moving slightly side to
side).

I can spell words, letter by letter, by answering "Yes" when the
letter is spoken by another person. I don't use an alphabet board
because I often need to communicate at night when my eyes are closed;
I can still communicate with my eyebrows but not with my gaze on an
alphabet board. Instead, I memorized a simple letter grid in which
the alphabet is divided into five numbered rows, with each row
starting with a vowel:

1 - A - B - C - D
2 - E - F - G - H
3 - I - J - K - L - M - N
4 - O - P - Q - R - S - T
5 - U - V - W - X - Y - Z

The person to whom I'm "talking" slowly counts, "1 2 3 4 5, 1 2
3...," until I say "Yes," by raising my eyebrows, to select one of
the five rows. The person then recites the letters on the row I
selected until I raise my eyebrows to select a letter. By repeating
this process, I can spell words and sentences.

Whether I use my computer or my eyebrows, these restrictive, tedious,
and slow communication methods are frustrating and present unique
challenges to me and the people I talk to.

First, without my computer, I can only answer questions to
which "Yes" and "No" are the only possible answers. I can't answer
multiple choice questions. "Do you want water?" is good. "Do you want
food or water or anything else?" will be answered with my
expressionless face. When I do answer, the questioner must repeat my
answer, and I will respond "Yes" if it is correct, to confirm that my
slightest facial expression isn't misinterpreted.

I also have a problem answering questions posed in the negative, as
in, "Don't you want water?" If I do want water, the syntactically
correct answer is "No," but many people expect "Yes," as if the
question was, "Do you want water?" (Actually, I've found that people
whose second language is English expect "No," and native English
speakers expect "Yes.") Again, I must remain expressionless or
patiently and methodically spell, "No negative questions."

Helpful people sometimes attempt to speed up communication in several
ways that almost always fail. One, asking many questions too quickly,
so by the time I can answer, my answer to the first question is
misinterpreted as my answer to the second or third question. Two,
asking questions with implied answers and not waiting for me to
answer, such as, "You need water, right?" Three, assuming they know
the word or concept I'm typing or spelling and not waiting for me to
finish, for example, assuming the letters "sl" will be the
word "slow" and not sleep, sleeve, or slide.

I choose my words carefully and with curt efficiency to convey the
most meaning with the least effort. This is crucial when I have an
urgent need, but it also minimizes the time and frustration of
communicating. When possible, I use short synonyms instead of longer
alternatives, so that "strange" and "weird" become "odd." Also, I use
American spellings to avoid the extra "u" ("color" instead
of "colour"). I don't have the luxury of using "please" and other
pleasantries. I trust the listener to recognize that my brevity is
not impolite but just efficient.

Sometimes, however, I need to be verbose to be understood. When I
have a conversation with more than one person, the others often
proceed faster than I can type and speak my contribution to the
discussion. I need to include in my comment a reference to the topic
that the others have passed and hope they recall the context to which
I'm referring.

If I want to inject tone into my speech, such as sarcasm or optimism,
I need to be abundantly clear or exaggerate. Even people who know me
well can misunderstand and take my words at face value or, worse,
interpret what they are predisposed to. In the right context, on the
other hand, humour is relatively easy. During my latest hospital
visit, I waited in agony in triage while I watched several gunshot
trauma victims pass me and receive priority treatment. I
spelled, "Shoot me."

--
Dov is online at wisebrod.com

Happy Birthday x 2

Wednesday, 29 November 2006

Breakfast delivery at school: Jamba Juice, bag of my favorite junk food snacks and a yoga magazine

Got home after spending the day with dad at 6 pm running down the stairs to get ready for my pickup at 6:30 pm, and when I got down the first set of 20 stairs, there was a brown paper bag on the step. I picked it up and yelled "Hey, who left their trash on the stairs?"

Then, I ran down another 20 stairs, only to stumble upon another bag. This time I noticed writing on it. I got down the next set few stairs and collected another bag.

When I got in the house and rushed in to get ready, I looked more carefully at the bags. The first one said "Happy", the next one said "Birth", and the last one said "Day"...Inside individually wrapped ziploc bags (in case it rained) were more gifts. That was definitely a sweet surprise!

The Halsalls picked me up at 6:30 pm and we headed off to our swanky dinner spot, and no it wasn't the frigid McDonald's they were talking about, but it was Ruth's Chris Steakhouse. We enjoyed our steak dinner and Chris' dad and I got bread pudding desserts with candles for dessert, which we shared of course!

Went back to their house to open gifts and get surprised with more desserts, but this time cake with magic sparkling candles...those sneaky buggers!

Stayed at their house opening gifts until after 11 pm. It was a fun evening indeed.

Guess I must change my blog description now, as I am 31 years old today. Or perhaps I'll just keep it at 30.

Craft Fair Recruit

Sunday, 26 November 2006

I've been recruited to be "Senior Packer-Upper" at the Bad Ash Pottery station. Helped Chris and his parents clean up and pack up at the craft fair after a long three day weekend of selling at the Neil Blaisdell's Center huge craft fair (over 400 booths!). I did some shopping of my own, and Chris' mom and Chris slyly went off and shopped for us as well.

As helpers, we ended the night with dinner at Big City Diner, courtesy of Chris' mom.

Happy Thanksgiving!

Thursday, 23 November 2006

A caregiver/friend from the ALS support group sent this email today: "May we all find the blessings behind the problems brought by illness and be ever thankful for life, hope and each other."

The day started out with my butt-kicking yoga class at 9 am. Wiped me out! Not to mention there were about 45 people in class, so it was crowded...as it always is on holidays.

Came home to Jay and Shelley cooking as I prepped my salad. Chris helped wash dishes while we flipped channels between football, the Macy's Thanksgiving Day parade, and took time for some napping. Chris and I headed to his parents' house in the afternoon. We helped prepare the meal, which they had ordered from the Hyatt Regency, so it was just a matter of reheating everything. We enjoyed a nice dinner by candlelight, and enjoyed the company of Chris' best friend Vince, who came over for a late bite to eat. He must have taken funny pills because he was a riot!

Chris and I left to head to my Aunty Sandy's house in Kailua for round two. We "talked story" with Dad as he lay on the couch with the bi-pap machine. Nowadays, he needs that machine to help him breathe and to talk. We enjoyed desserts and listened to my Uncle Greg's story about catheters. Helped Bernie load Dad in the car and then we left...probably got home by 11:30 pm. When we got home, Jay was shredding up the kalua turkey we had left in the oven all afternoon. We were stuffed and exhausted, just as a successful Thanksgiving ought to be.

It was a wonderful day, spent with family and friends, celebrating life and each other. Hope yours was just as special.

As the Disease Progresses...

Tuesday, 21 November 2006

Dad had his massage this morning. Only now he cannot turn over on his stomach, as he has difficulty breathing, so he does the whole hour massage while laying on his back. It's not as enjoyable as a full body massage, but it's what he can handle.

My stepmom and I talked last night about the compounding issues as of late:

- To vent or not to vent
- Choosing a hospice
- Needing respite on the weekends
- My dad being stubborn
- Not leaving my dad alone
- Augmentative communication devices

It can be a stressful time, especially around the holidays. But, we're trying to give each other respite when necessary. Dad has important life changing decisions to make as well.

Recording Memories

Sunday, 19 November 2006

During 7 am yoga, Alexis, the owner of the studio, started taking pictures of everyone in poses. She showed me the pics after, commenting on my bow pose and camel pose, and said that the pictures are for a Japanese tourist magazine. I've never seen myself doing poses in pictures before so it's cool to see what the poses look like.

Chris and I went to his house to eat breakfast, and soon after, my dad called to see if I could watch him today to give my stepmom a break. So, Chris dropped me off and I watched Dad. Helped him read the paper by flipping the pages for him, as I started dozing off in between "flips". Fed him, watched bull riding on TV and we finally taped one story.

For months now, we've been meaning to tape record his voice. Now that he's losing his voice, as a result of his respiratory problems, I thought we would not get to tape him. But, we tried today, and it worked out okay. He recited my favorite story book, Where The Wild Things Are by Maurice Sendak.

My stepmom and stepsister came home in the afternoon from a day of shopping. Bernice had bought me a wallet as a thank you for coming on such short notice. She didn't have to, but it was a nice gesture.

Chris' parents took us out to dinner tonight at Big City Diner. We had some good laughs about the fact that the manager has been calling his mom by the wrong name for years. But, it's too late to correct him now. We talked about Thanksgiving Day dinner plans and birthday dinner plans (since Chris' father and I have the same birthday coming up next week.).

Off to the Circus (and no, it's not my house)

Friday, 17 November 2006

Chris and I took his friends to the airport and then we had dinner at Anna Miller's, a good 'ole homecooking restaurant. I probably hadn't been there since high school!

Saturday, 18 November 2006

Yogacised in the morning, tutored, went grocery shopping, and then had a surprise visit from friends Kai and Jason who were driving by my house. We chatted about houses and then, about ten minutes after they left, I waved at them with a surfboard as they searched for me from across the way, at the other ridge, St. Louis Heights, while they tried to find me and my house. Tonight, Chris took me to the circus.

The Circus was a blast! Circus Oz, a troupe from Australia, performed at Hawai'i Theatre downtown. It was very child-oriented, but with enough adult humor to keep the adults entertained. I walked away with a greater respect for the athleticism and strength of acrobats. The most impressive act was when these acrobats jumped up on a pole and climbed up the pole like a bunch of monkeys. They would turn around and hold their bodies in poses while hanging sideways, just hanging on by their ankles, fifty feet up from the ground. It was more exciting than it sounds. The hula hooping, contortionist squeezing herself into a box, and the same woman bouncing and juggling balls, were my other favorite acts. There were only about ten performers, but they all did a multitude of things. Probably the most bizarre things were the strong woman (who could hold a 220 pound guy on her stomach along with six other people balancing on her simultaneously, as well as have cement cinderblocks broken on her stomach with a sledgehammer while she was in a backbend), and that same 220 pound guy (who had an awful mullet wig I might add) doing tricks on a BMX bike.

Throughout the performance, I thought of SCATS of course and wondered if Ms. T has seen this Australian troupe. They're quite talented, and it's a totally different show from Cirque du Soleil. It reminded me of a more authentic circus experience, minus the animals of course.

Rub My Belly

Friday, 17 November 2006

Rubbing my father's belly while he's sitting on the can has become a daily routine for me, as his Metamucil cocktail is not quite enough to do the trick. It really works though, and although it sounds like a crazy task, we try and bring humor to the situation (and once in awhile figure out crossword puzzle clues while we're at it....Us Mau's are good multi-taskers!).

Dad: "Pretty good, eh, you can hear the piano playing?"

Me: "Huh?"

Dad: "You push the keys, and then music comes out."

(Laughter ensues)

Me: "Oh, yeah, but I didn't know it was supposed to stink...Smells like roses, huh."

This afternoon, the respiratory technician came by the house to adjust Dad's bi-pap machine, per the pulmonologist's prescription change. So now the pressure is 16/8, which doesn't really mean anything to me, except that the "16" has been upped from the previous "14". This means that when he inhales, there is more pressure or air going in his airway, but the exhale pressure of "8" will stay the same. I'm not sure at what point they determine that the numbers are too high to warrant transitioning to a ventilator, but the pulmonologist also recommended that he use the bi-pap during the day, so Dad's been using it for a couple of hours in the afternoon as well as sleeping with it at night.

Dad told me today that he and my stepmom are going to start researching hospices and see what services are available. My friend works at one of those, so I will ask her more about it.

Tonight, a bunch of his Parks & Rec coworkers are taking him to the opening night of "007: Casino Royale". Bernie is going with him because they haven't lifted him before and Dad doesn't want to make them responsible for him in case he has difficulty breathing throughout the night.

I commented to Dad that Jay hasn't bathed him in awhile, but when he told my brother, Jay responded that I haven't gotten Dad out of bed in the morning and made and fed him breakfast in awhile either. Okay, I guess we're even as far as physical labor tasks go.

I'd like to see if he would rub the belly though.

Five Wishes

Wednesday, 15 November 2006

Last night's ALS Support Group meeting was emotionally draining. A retired nurse/speaker presented information on Five Wishes, a form/booklet which should be filled out by all individuals before they need to face end-of-life decisions. The book acts as an advanced health care directive, and is a legal document meant for those who eventually will no longer have the capacitiy to make decisions for themselves. We watched video testimonials of those families going through such angst and stress when trying to decide what they think their loved one wanted because they didn't have anything in writing. We reflected on the controversial Terri Schiavo case and went through the booklet page by page, examining the statements that outlined what kind of care the individual wants in the hospital (from getting the soiled sheets changed to getting massages) to wanting a ventilator in order to be kept alive to wanting to be cremated or buried to whom should be designated having durable power of attorney.

The videos were powerful and I noticed some people crying. I held it together well until Lisa came over to say hi to my dad. After her stay in the hospital last month, her health continues to decline rapidly, she is losing weight, her mucous buildup is so great, and she now has to consider whether she wants to get a tracheostomy or not (which leads to a ventilator). My dad told me, in his faint voice, to put his hand on top of hers. Unlike my dad, Lisa still has movement in her hands and arms, though her respiratory condition is worse than his. She held his hand as my dad told her that they are here for each other and that "We...will...get...through....this...to..gether."

That's when I lost it and I felt the tears streaming down my face.

He joked about how my stepmom says he only wants to come to these support group meetings to see all of his girlfriends. I told Lisa that my dad always mentions her and how he wonders how she is doing. She said she always thinks of my dad and us.

As Lisa held his lifeless hand, her words struggling to come out clearly amidst her garbled speech and drool, my dad took every breath between his words to communicate with her.

He hardly ate anything tonight and needed to take a Tylenol for a headache (I think from the lack of oxygen), but he was happy to see his friends.

If I had five wishes right now, I think I know what they would be. But, hardly ever do we sit down and think about the five wishes we might need upon dying. Tonight's speaker emphasized that creating a document in writing helps to ease the stress and pain and conflict that often arises when a loved one becomes incapacitated and unable to make decision for him/herself. As ironic as it sounds, it actually helps you to focus on living and enjoying the life your loved one has left without having to worry about those huge decisions that will need to be made when one is on his deathbed.

Lisa, in her late 30's, and my dad, in his late 50's, may currently exist in dying bodies, but through their battles with ALS, they are learning how to live, how to cope with their bodies degenerating, becoming dependent on others for care, and learning to appreciate and enjoy every minute of their lives that they have left.

Ultimately, this is probably the best gift they could have given me...To see them comfort each other in times of physical weakness, yet to see them full of so much emotional strength. If I haven't already learned many lessons over these past two years of caregiving, I am certainly learning them now, learning how to value my friendships, family, and the people around me, learning how to forgive and let go of mistakes made in my past, learning how to live each day to its fullest...

In one of my favorite shows, "Six Feet Under," a character asks, "Why do people have to die?" and the main character responds by saying that it's "to make life important". Quite simply, I'm LEARNING HOW TO LIVE.

If you had five wishes, what would they be???

Taking a Deep Breath

Tuesday, 14 November 2006

Today was a Professional Development day full of meetings. Nancy Skerritt, from Maple Valley (Tahoma School District) in Washington state, came to do workshops with us on reading comprehension scoring. Tomorrow will be another day of workshops as well.

Dad's been using his bi-pap machine at night now while he sleeps, and he used it this afternoon during the day. The doctor advised that he use it during the day so that his neck muscles don't overcompensate and try to work so hard when he's trying to breathe during the day (as his neck really pulsates when he takes each breath). Today, he asked to use the machine, which is great since months ago, he was so resistant to using it. He has discovered over the past month that it works and helps him breathe ... Imagine that!

My stepmom and I are currently looking for additional speech devices to help Dad communicate. His voice is weaker and on some days, his voice is barely a whisper. As his muscles weaken, he eventually will lose his ability to speak with his voice. Because this disease never affects his mind, we will need to find a way he can still communicate his smartass remarks. And, we cannot always lug around the laptop everywhere and grease off his nose so that the sticker will stick to it.

So, as an additional device, we are going to try to make a communication board like we've seen other patients use. We can use plexiglass or a rectangular board with a hole in the middle (like a TV shape), labeled with letters of the alphabet. We'll have to train him now, while he still has his voice, to use his eyes and get used to it so that we caregivers are comfortable with it as well.

Tonight is the second Tuesday of the month, so ALS Support Group meeting. It will be good to see others and check on how Lisa, a young client with the Bulbar onset of ALS (which is more progressive as it affects the speech/respiratory first) is doing. Last month, she was unable to attend the ALS dinner banquet because she was in the hospital for respiratory issues. I hope she and her family will be there tonight. The support group has become something that my dad looks forward to going to. (Plus, we always potluck dinner!)

Welcome to the Grand Opening Gala event for Split Obsession! (which took place on Sunday, November 12th, from 6 - 8:30 pm) 

Split Obsession, located at Koko Marina Shopping Center near Papa John's and Zippy's, was actually opened in October...They already have regular customers! My high school friend Erica, a fashionista herself, loves trendy clothes and shops at boutiques. She and her boyfriend Bruce, who has always worked in the retail industry, wanted to create a store that was progressive for Hawai'i, but at reasonable prices for customers. Come check out what they have at Split Obsession! I know I'll be a repeat customer! 

Family members put on their "retail" smiles to help out for tonight's grand opening event. Erica and Bruce are exhausted, but grateful for everyone that came! 

Tanya and Erica at the end of a long, but successful evening for Split Obsession. 

"So, how about this hat?" 

There are many shopaholics out tonight! 

Browsing the racks of shirts near the baby Paul Frank tees and the men's t-shirts. 

Looking through the store window. Erica is wearing this dress on the mannequin. 

The store is bustling with customers inside! 

She says, "I really think you should buy this hat." 

Kahu from our high school chapel comes to give Erica a lei and congratulatory hug on her grand opening. 

Bubbies ice cream parlor next door sent over a tray of mochi ice cream for us to enjoy on this hot, humid evening. That was so sweet of them! 

Check out the long line within 45 minutes of the store opening! Hey, I bought that dress too! 

The news article that put Split Obsession in the paper. 

It's a shopping frenzy on the grand opening night of Split Obsession! 

Light action and the side wall of the store. 

He left, but ultimately came back to buy this poetree tshirt. 

Everyone browses the toy table at Split Obsession. 

Reflections of the store through the mirror....which became a favorite for customers trying on clothes throughout the evening! 

Mickey Mao sculpture...Could it be my namesake? 

The back of the store with cool lamps overhead. 

Nelly waves to the camera 

Purses, hats, and funky t-shirts from bread & butta (an LA company)...I bought one of the shirts! 

Split Obsession logo t-shirts...Spend $100 and get one free! 

This is the smoking rabbit collector's item that got Split Obsession a little blurb in the Sunday newspaper recently.