Sunday, April 29, 2007

A Celebration of The Life of Johnny Mau


Sunday, 29 April 2007

After staying up until 3 am (Jay stayed up until 5 am) writing the eulogy, and going to set up things at Nu'uanu Mortuary at 1:30 pm, we estimated about 600 people were in attendance and/or came by to pay their respects throughout the afternoon.

Many city folks, city council members, friends, family, fraternity and sorority members, came to pay their respects.

It was an emotional draining event, with lots of stories, from Dad's Parks & Rec friends to his fishing buddies from the "Kapahulu Fishing Club" to his caregiver Pauline singing tearjerker songs, Dad's favorite "Follow Your Road" (which he said reminded him of me) and "His Eyes Are on the Sparrow". Jay and I made it through our eulogy, with tears of course, but there were funny moments of course. It was a nice tribute to Dad.

There was tons of Hawaiian food afterwards. Many people took home leftovers and enjoyed visiting with each other, looking at the slideshow and filling out stories and memories to add to the scrapbook I made.

We didn't leave until after 8 pm. Although it was exhausting, it was definitely a beautiful celebration of Dad's life.

We took apart the flower bouquets given by the Parks & Rec, Peng Hui Fraternity and others. I took some flowers to our house, and others to my grandparents' grave the next day, telling them to watch over Dad.

Open Mic Sharing From Friends

To Those I love and Those Who Love Me
(Read by Dept. Parks & Recreation coworker/sports buddy, Bert Fishman)

When I’m gone, release me. let me go-
I have so many things to see and do.
You mustn’t tie yourself to me with tears.
Be happy that we had so many years.

I gave you my love. You can only guess
How much you gave to me in happiness.
I thank you for the love you have shown,
But now it’s time I travel on alone.

So grieve a while for me, if grieve you must.
Then let your grief be comforted by trust.
It’s only for a while that we must part
So bless the memories within your heart.

I won’t be far away, for life goes on.
So if you need me, call and I will come.
Though you can’t see or touch me,
I’ll be near.
And if you listen with your heart,
You’ll bear
All my love around you soft and clear.

And then, when you must come
This way alone,
I’ll greet you with a smile and
“Welcome Home”


Remembering John: A Eulogy by Dept. Parks & Recreation coworker, Garry Loo

I first met John when I was a Recreation Director at Kahala Community Park many years ago. We enjoyed playing Volleyball and Basketball together and became close friends, going out after games or tournaments. We played in many HGEA Basketball and Volleyball Leagues, even going away on trips to the neighbor islands. We competed together in several Haili Volleyball tournaments and even roomed together. A group of fellow employees enjoyed going to each other’s houses monthly, and that group included Rodney, Howard, Dexter, John and me. In addition, John enjoyed practically any sport.

His career began as a State Employee at the Boys home in Kailua. He then transferred to the Parks & Recreation Department, making $2.06 an hour in 1969 at Palolo. He continued to work at various sites including Manoa, McCully, ‘Aina Haina, Kualoa, Kalakaua, Kapio’lani Park and ended his career at McCoy Pavilion.

I first found out about John’s condition over two years ago from a mutual friend of ours, Clyde Ching, who, like John, played on the Men’s VB team at the University of Hawaii. At that time, John was pretty secretive, and did not want everyone to know about it. Upon visiting him after he contracted the disease, I focused on renewing our friendship that had been dormant for so many years. Together with Shelton, we set up an opportunity for him and his family to meet the UH Wahine VB team and enjoy snacks with them in the hospitality room. It was touching, since anyone who knew him, knew he had season tickets for the Wahine I vowed to help in any way I could, forming a bond with former and current Recreation staff that included Keora, Todd, Rodney, Howard, Barbara, and Roger. We continued to see him at least once a month, at first, taking him to different restaurants, a movie, and even to see Christmas lights: finally ending up taking food over to the two different houses. About 2 months ago, we split our group up, trying to provide more visits to the house. The last several weeks, Keora and I kept in touch with him much more frequently & when she was unable, I kept spending my lunchtime at the house.

He was amazing at remembering so many things from the past, and always put himself in a position to, while watching Sports, Coach while talking to the TV or anyone else that was in the room who would listen!

It was on a Saturday, and after our complex Easter Egg hunt, that we decided to drop by the Sierra house, since it was a little early to go to a VB Tournament that my daughter was playing in. Unfortunately, the rest of the team stopped by McDonalds and my daughter was saddened and grumpy by the fact that she could not join them. Nevertheless we went & visited for awhile. Just before we left, John stopped them and said to my wife Sherrie and daughter Tani, how thankful he was to them for sharing me with him. He further told them how very grateful he was for all the things that I have done for him and wanted to let them know how much it really meant to him. Needless to say how touching that moment was for all of us. The 85 steps up to the road seemed so difficult with all those tears in our eyes trying not to hang on to those loose handrails, for fear the we would fall back downward, starting the trek up again! At the top of the stairs, Tani turned to me to say that she was so sorry for being selfish. What a lesson in life that was…for ALL of US !
Thank you to Bernice, Tanya & Chris and Jason for allowing me to be a part of the family and say a final farewell to John on that fateful Tuesday evening and Wednesday morning. It has been a long journey.

John’s favorite song was Follow your Road, by Seawind, featuring Pauline Wilson, whose lyrics read:
"So many roads it seems that lead down to the sea,
I wonder which road will be the right one for me
Have you wondered where your road will lead you?
Maybe to the bright day of sunshine, or a starry night in heaven
Or it might be you’re afraid to go, afraid to go
But you’ve got to follow your road, or you’ll never know, never know."

May you take with you the love, strength and courage that you have shown us all and how these characteristics will continue to touch so very many of our lives forever, May this last road be a very peaceful one for you amd your family.

With Love from all of your fellow recreation 'ohana…… Me ke Aloha Pumehana

"Follow Your Road"


My stepmom told me that "Follow Your Road", sung by a local artist named Pauline Wilson, was my dad's favorite song. I had never heard it before. She said that Dad liked the message in it, and that whenever he heard it, he used to think of me. Now, when I hear this song, it brings tears to my eyes. After all, I was always Daddy's little girl, and he was always supportive of whatever journey I took in life. Dad's caregiver, Pauline, a young college student, sang this song beautifully at his memorial.

“Follow Your Road”: By Pauline Wilson of Seawind
Sung by Pauline Taumolo, Dad’s caregiver, accompanied by Steve Min, Parks & Rec


So many roads it seems that lead down to the sea.
I wonder which road will be the right one for me.
Others may fall away, they’re ending left and right.
But there is this one road, the journey’s far out of sight.

Have you wondered where your road will lead you?
Maybe to the bright day of sunshine,
Or a starry night in heaven.
Or it might be you’re afraid to go,
Afraid to go.
But you’ve got to follow your road,
Or you’ll never know,
Never know.

We are all but travelers,
Living in a foreign land.
Just trying to find our way,
The best as we can.
Looking for an answer,
Trying to find some light.
Though we have journeyed far,
It’s not quite far enough.

Have you wondered where your road will lead you?
Maybe to the bright day of sunshine
Or a starry night in heaven.
Or it might be you’re afraid to go
Afraid to go
But you’ve got to follow your road,
Or you’ll never know,
Never know.

You’ve got to follow your road
Follow your road,
Follow your road.
You’ve got to follow your road
Follow your road,
Follow your road.
You’ve got to follow your road
Follow your road,
Follow your road.

And maybe someday your road will take you far away…

JOHN’S STORY: EULOGY BY TANYA & JASON




Sunday, 29 April 2007

T:
While putting together this story, Jay and I marveled at the fact that Dad raised us differently, told us different things, and had different expectations from us. Even so, Dad loved us unconditionally, supported us through everything, and always wanted us to be the best people we could be. So we thought we’d share some of the lessons we will carry with us for the rest of our lives and hopefully pass on to our children….as a reflection of what a wonderful man our father was.

(Growing Up Phase)…
T:
Growing up in a household of boys, our lives pretty much revolved around Dad’s and Jays sporting activities. Although I didn’t quite turn out to be the athletic daughter that he’d wanted, he did get that later in life with Whitney and Lindsey. However, he was able to pass along other valuable skills, like driving stick up and down our hill in our old VW bug, or learning how to tie a pretty good fishhook. He even convinced me to take up kayaking in high school, another of his leisurely activities. Maybe he was just trying to groom me so that I could paddle the kayak, while he sat on the back and fished.

Dad was always protective of me, as a father would be for his daughter. From the time I was 11 and Jay was 9, he single handedly raised us both. No matter how late it was, I would walk by his room quietly, after a night out, and I would hear, “Hi Tanya.” This lasted from high school through college. Raising us single-handedly, he had to go through all the teenage things with me. But the best was the time was one night when I discovered I had gotten my period. Through the bathroom door, I told Dad, “I think I got my period.” All flustered, he said, “Uh, okay. I’ll be right back.” And he rushed down to 7-11,, knocked on the bathroom door later and passed me a bag. I remember he had bought me these huge super duper pads, not knowing what to buy. I used them anyway, but those were just the beginnings of raising a teenage daughter.

J:
Well I also remember my dad always waiting up for me, although I think I came home a bit later than my sister. And I know a few times I was probably out doing some things that I probably shouldn’t have been doing at my age. He’d call me into his room to talk, and I thought for sure I’d be in trouble, but he never did question me about what I was doing, he’d was just tell me that he was happy that I was home safely. But that’s how he always was with me, just there being supportive about everything. I think we shared a kind of free spirit, and he wanted me to experience life for myself, and figure it out along the way.

T:
Dad wanted me to become more independent, more assertive, and come into my own. Though he let me play hooky from school a few times when I was stressed out over writing a paper or project, he encouraged me to go away to school, to meet new people, to travel the world…..but to come back home afterwards too. Dad always supported me exploring the world, sending me off to Kamehameha to explore my Hawaiian culture, camping in the summers, sending me to Europe with my World History class in high school (even though he had never been to Europe himself), and sending me away to college. I remember that he encouraged me to go away to school, and when I did, he reminded me not to only hang out with Hawaii people, but to meet others. When all my friend’s parents were calling them and telling them they hoped they were home studying, Dad was telling me, he hoped I wasn’t just studying, but going out partying and enjoying college life. I stayed in Seattle for 11 years, a little longer than he expected, and he kept sending me news clippings about all the teaching jobs available in Hawaii. I soon went off to travel Southeast Asia and then live and teach in Thailand. By that point, I think he had accepted that I wasn’t coming home for awhile (but soon enough, when I found out Dad was diagnosed with ALS, I moved home to spend time with him and help take care of him). During my time away and even today, I still shared my love of photography and meeting new people. Whenever I captured a beautiful sunset or a lighthouse like my dad loved, or different cultures and people, I shared it with Dad. After all, I got my eye for photography from Dad. And, now I’ve turned into him, carrying a camera with me everywhere I go.

J:
He always liked collecting quotes and doing crosswords. When we were growing up, he cut out the “Today’s Thought” and, along with the dinner recipes, he had them all over the refrigerator. He was either trying to inspire us through Rev. Osumi, or trying to get us to cook more at home. Well either way it worked, cause now my sister likes to collect quotes, and we both like to cook…and after the past few years of writing down the letters for him in those boxes, we both enjoy doing crossword puzzles too and would revel when we could get more clues than him. A couple of months ago, Dave Au came and visited and commented on how he hoped his own kids would take care of him if he ever got sick like Dad. Dad reassured him, saying “They will. You’ve got to share the good and share the bad.” Then, he looked over at my sister and said write that quote down for my eulogy.

(Caregiving Phase)…

T:
From the day he sat us down to tell us about his ALS diagnosis, Dad was strong enough to say that he’s had a good life. He had done the research already, and knew what the disease involved. He briefly explained to us what was going to happen, and said that he was happy that we were both grown up, and that he didn’t have to worry about us. But, we began to worry about him because this meant losing all the active things he so loved to do.

J:
This is the point in our lives where everything got flipped around on us, and our family roles changed a bit. We went from having our smooth babies butt cleaned by him to cleaning not so smooth butt. From being carried down our stairs to carrying him down our stairs. Although he was a bit heavier then either of us ever were. Yet through all of this little role reversal, still managed to be a father, and find ways to teach us things, or comment about how we should be doing things. Because he was a very proud stubborn man, it took a lot for him to accept the way his life had changed. But he made the change, and accepted what life threw at him. And was just beginning to teach us some of the best lessons in life any person could teach.

T:
Although Dad was laid back and always had a sense of humor, he was still a realist. When I took Dad to the Academy of Arts for the monthly Art After Dark event on a Friday night last July, he wanted me to take a picture of the Four Noble Truths on display, which stated that one must suffer, which is caused by craving and desires. "To end suffering completely, one must remove desire, ill will and ignorance." I know we often wondered why such a healthy, strong athlete like Dad had been afflicted with ALS. But, he always remained generous and kind to others, never wanted any sympathy, and was very humble throughout.

Eight months ago, as his condition was worsening, Dad told me, "I'm not afraid of leaving this earth." But, he did tell me that he wished he could see me get married and have grandchildren. He even payed for a dating service, hoping to speed the process up, but that plan didn’t work out, I am so glad that a couple months ago, I got to hold my father’s hand as he led me down the aisle to my new husband Chris. And, although I had hoped he would hold on a little bit longer to see the baby, it always brought me great joy, even in his last few days, to put Dad’s hand on my belly so he could feel his first grandchild move. In fact, he recently joked that I should call the baby “Butthead” since it always tends to stick its butt out, but like a true Mau, the baby moves around mainly during and after I eat! That always made Dad smile.

J:
Although we both were raised differently, based on our personalities and being a boy and a girl, we both learned important values and lessons from Dad, which we will proudly carry with us for the rest of our lives.

1) Be humble, be positive.
2) Always remember where you came from and cherish your family.
3) Live life day by day to the fullest, never taking the little things for granted…….

T:
Things that used to matter just didn’t matter so much anymore. And the things and people that DO matter in my life, I am ever so grateful for. Living life to its fullest (and knowing what makes it full) has never been so important to me than it is now.
Never forget what's important in life, and remember to cherish the moments and tell those people that you care. Everything happens for a reason, and sometimes things don't turn out the way you plan or envision them, but your heart will always guide you through.

So, my father and I share with you this quote (author unknown)...

"Yesterday is already a dream,
And tomorrow is only a vision.
But today, well-lived,
makes every yesterday
a dream of happiness,
and every tomorrow
a vision of hope."

(Thank You’s)

T:
Dad always told me that in his eulogy, he wanted me to thank the people that visited him and supported him during his illness. Thank you to Bernice for being there as his wife and caretaker for the last couple of years, through all the difficulties and struggles, you filled a void that we could never fill, and to all of bernie’s family for taking him in with open arms. He also wanted to thank the Parks and Rec gang (Garry, Keora, Barbara, Howard, Rodney, Todd, and Roger) who came and brought him lunch once a month, sharing his favorite treats, like won ton min and dim sum, and talking shop or watching the Final Four. When Dad took a turn for the worse, Keora and Garry still came by and visited with Dad, even if his voice was failing and he couldn’t eat as much, just to see him smile. Thanks to Don Akiyama for taking him out to cruise around in his wheelchair and get a good tan. Thanks to Uncle Gary who has always been there for Dad, also sharing his love for food with different plate lunches and who helped take on the role of caregiving when I needed help to lift and transfer Dad. Thanks also to Uncle Jimmy, who shared his love of sports with Dad, and spent much of the past year with Dad to reminisce, eat pho, and just hang out. Thanks to Pauline for taking such good care of my father and for singing such beautiful songs today. And to Phillip and the other hospice volunteers for spending time with Dad, whether doing crossword puzzles with him or flipping the newspaper for him. Thanks to Dave Au for always providing us with wonderful pictures to remember our father.

T:
Thank you to the girls at MDA, and the ALS support group. The caregivers who shared information and support, and to the clients who spent time and shared thoughts with Dad, as they watched their bodies deteriorate. 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 few years, 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 TV show (Dad and I watched a lot of TV together the past few years) a character asks, "Why do people have to die?" and the main character responds by saying that it's "so others know the importance of life". Most important to me, Dad taught me HOW TO LIVE.

J:
Thanks to everybody who came out today to help celebrate my father’s life. My father can be described as many things, an athlete, a good father, a loving husband, but I think the best way to describe him is as a person filled with aloha. He always had a smile on his face. Whether at work, at home, or out at a game, he treated everyone with kindness and respect. He always taught us to treat others like we would want to be treated. And, he never asked for anything in return. Even in his last days, when his face muscles got weaker, somehow he‘d still pull off a smile. He wasn’t a person who ever needed the glory or the spotlight, yet throughout his life, he was recognized and thanked for his many good deeds, from work to being the mau club president, to UH alumni games, and even in the paper a couple of times. I think the most important thing my father taught me was to just be a good person, and enjoy life. He didn’t necessarily tell me how to do it, but he showed me through his character, and the way he treated everybody. Fairly and equally no matter what. The last couple of years when my father was stricken with ALS, many of these wonderful qualities were even more apparent. Not only did I see the incredible strength and courage in him while living with a horrible disease. I got to see the meaning of friendship from others, in the way people took time out of their lives to spend some time with my father. And when they came, they came to just to be there, and be around him, and sort of repay him for all the kindness and loyalty that he’s shown them over the years.

Some people pass quickly and suddenly, and other people pass slowly. I’ve always wondered which way is a better way to go. And although the end of my father’s life was three years of a slowly degenerating disease, it was also three years of time well spent with loved ones and friends. Time well spent cherishing every little moment we had left with him. And as much as it hurt to see him slowly lose the ability to move, we all got to spend more quality time with him than ever before. He told me once that your life is summed up in different stories, well we knew how his story would end, but we just didn’t know when. So here we are, celebrating the final chapter in a life well lived…..And, we will always be proud to call him our father.

Aloha, Dad!

Friday, April 27, 2007

Getting Ready For Dad's Memorial

Friday, 27 April 2007

Jay and I have spent all week scanning, editing, cropping, and putting together a slideshow for Dad's memorial, by going through his two huge boxes of pictures, photo albums, and our own personal collections. Went back to work this week as well, but as soon as I come home at 1 pm, I've been working on the slideshow, the program, etc. Plus, friends from Seattle, Marissa and Nate, arrived enroute from Japan to back home to Seattle this week. I picked them up from the airport on Tuesday and Marissa caught up with Kai when I went to her house to work on the slideshow. Chris let them borrow his car today to sightsee. We'll hopefully meet up with them tonight and do something.

"Junior" has been busy moving and kicking and growing, making me really tired and exhausted all week. My kids had fun watching my tummy move today when he was doing some kicking action. It's been hard to get to bed early this week, but I'm managing to take long afternoon naps after lunch. Dad would be proud, as I am still keeping with our routine of napping after lunch.

Still trying to write the eulogy. Going through all my blogs and journals to help create some insight. My brother Jay and I will present the 'Ohana Aloha - John's Story, together.

The personal obituary was published in the Honolulu Star Bulletin on Wednesday of this week. Go to www.starbulletin.com to look up Dad's name and sign the guest book. Feel free to visit the website and leave some thoughts. A beautifully designed and colorful obituary was published in the Honolulu Advertiser on Thursday, though it is not viewable with its fancy background online (www.honoluluadvertiser.com).

Tuesday, April 24, 2007

Dad

Tuesday, 24 April 2007

Took the day off from work today as we had to meet with the reverend to talk about Dad and discuss the program for Sunday. I had emailed a sportswriter, Kalani Simpson, on Sunday night to let him know that Dad passed away, as Dad had me write him about a month ago.

Looks like he wrote an article printed in tonight's Honolulu Star Bulletin.



Sidelines
Kalani Simpson


--------------------------------------------------------------------------------


Mau sticks around long enough to say good-bye

JOHN MAU died last week, late at night on April 17, surrounded by family and friends. He was 59. He would have been 60 on May 23.
He was an athlete all his life.

Mau is the man who is known for receiving the first scholarship in the history of University of Hawaii men's volleyball. Mau would later smile at this, and explain that volleyball coach Larry Price -- yes, that Larry Price, this was 1970 -- had hustled up one "tuition waiver" and split it between Mau and Steve Kop. Mau got $116.25 for one semester, Kop got the same for the other semester, and they were in the history books.

Mau loved the UH men's volleyball program, loved the alumni matches. Last week, after the news broke, Bob and Linda Nunokawa brought over the shirt they'd saved for him from the last alumni match, the one Mau at last hadn't been able to make. He'd loved those shirts. He wore them all the time.

Services will be Sunday, at Nuuanu Memorial Park and Mortuary. It was picked partly because they needed a place that would be big enough.

"He was well loved by everyone," friend Clift Chee said.

It turns out the mortuary director knew him from his park basketball days.

He was an athlete all his life.

MAU DIED FROM ALS. He was diagnosed with the neurodegenerative disease in October 2004.

First his 3-pointers fell short, then his golf drives, too. Then his back hurt. Then there was numbness. Then he couldn't walk.

At last, not long before he died, he couldn't speak.

That's the cruelest part about ALS. Your brain works just fine, as all around you, your body fails you. Inside, he was the same person.

He knew 40 years ago he and his fraternity brothers would be close friends today, and they are. He wanted to be cremated so he wouldn't take up too much space. Friends are working on putting a plaque in his honor at McCoy Pavilion, where he was the manager at the end of his 30-year career with City parks and rec. One of his nicknames was "Two and a Half Beers Mau."

HE WAS SO giving of himself, "As a wife, it can be frustrating at times," his wife, Bernice, once said.

He decided not to go with a ventilator, or a feeding tube. He knew the inevitable. He knew what was coming. About a year ago he held a huge party, while he was still "good," so everyone could sing and tell stories and laugh and cry.

He was an athlete all his life.

He told his daughter that if she and her sweetheart were thinking about a wedding, they should probably get to it. In February, his son pushed a wheelchair and a car battery-powered BiPAP machine and his daughter held his hand. He walked her down the aisle.

She's hapai with his first grandchild.

Friday, April 20, 2007

Contact Information

Some of you have been asking where to send things to. I plan to have a scrapbook available at the memorial service on Sunday, April 29th so that people can write down their stories, memories, and thoughts on Dad. People have been sending such nice emails and even sharing funny stories that I never heard of during their visits with Dad. I would like to memorialize those and keep those in a scrapbook so that I can share them with my children one day so that they will know what a wonderful man their grandfather was. So, keep thinking of those stories and be ready to write them down and perhaps share them with everyone during our "Open Mic" period that day.

Mahalo for all of your love and support to Dad and our family........Tanya

Nuuanu Memorial Park & Mortuary LLC
2233 Nuuanu Avenue
Honolulu, Hawaii 96817
(808) 537-5255

Bernice Mau, Whitney & Lindsey Wong
3513 Pakui Avenue
Honolulu, HI 96816
(808) 739-1372

Tanya & Chris Halsall, Jason Mau
4308 Sierra Drive
Honolulu, HI 96816
(808) 737-2301

Muscular Dystrophy Association
Attn: Jennifer Li
1221 Kapiolani Blvd. #220
Honolulu, HI 96814

(* Any monetary donations can be made to MDA Hawai'i in honor of John Mau. MDA's ALS support group was very helpful to Dad and our family in providing resources, networking, and support over the years.)

Thursday, April 19, 2007

Going Through Memories

Thursday, 19 April 2007

Today was spent at Bernice's house, figuring out the program (by going through Dad's programs of funerals he recently attended), the food, and going through Dad's closets and drawers to box things up and bring things home. Whatever clothes we do not keep we may give away to his homeless friends at the parks he used to work at. Of course, I am keeping most of his things for my children and just for my own memories (but, shhh, don't tell my brother). As my brother will tell you, I inherited my Dad's packrat and sentimental gene.

Among those things I found a stamp of his signature, which gee, I wish Dad had realized he had earlier, or else I wouldn't have had to practice forging his signature all this time! We also took home his collectible fishing reels he bought on EBay (and we may give to his fishing buddies), found some other paraphrenalia he had in his little fishing tackle boxes, and took some of his clothes that remind me of him, especially those Riggers shorts and his UH Alumni volleyball shirts he always wore.

We ate pizza and reminisced about Dad, while Jay poked fun about certain things (proving that guys just are not as sentimental as girls). Bernice gave both Jay and I keys to the house because she still wants us to come and go as we please and be a part of the family. She asked about my maternity leave plans and offered to help out whenever she can.

Dad's Parks and Rec friends Keora and Garry called to let us know that they are in the process of trying to get a plaque made with Dad's name on it to recognize him and have as a permanent fixture on the wall of McCoy Pavilion, his last work post for the Department of Parks and Recreation before he retired due to his diagnosis, at Ala Moana Park. That is really a nice gesture, and Dad would really appreciate it.

When I got home, the Nunokawas (UH Booster Club organizers - basically major volleyball fans over the years) were in the driveway talking to Uncle Gary. They had stopped by to drop of this year's UH Alumni Volleyball game t-shirt for Dad. Even though he couldn't make it this year, they saved one for him. They said they should have dropped by earlier, now that they know he is gone. They only make 50 shirts each year, and they wanted Dad to have one, as he was very helpful in organizing and providing names of past UH alumni that played volleyball over the years, which really helped to get the Alumni games started in the first place. They said that they knew him better as a wonderful man more than an athlete on the court and that he would be missed. I told them how Dad, while he was staying in a Hospice facility a couple of months ago, had me write an email to Kalani Simpson, the sportswriter who wrote a story about him last year. He reminded him about the alumni game and thanked him for writing such a great article about him. He was such a devout and proud University of Hawai'i athlete, and volleyball and sports were his life. I told Bernice tonight, and she said she wishes Dad could have seen their kind gesture before he went, as he really would have appreciated it to know that they still thought of him.

It sure is nice to get emails of stories and kind words from the many people who knew Dad. Tonight, I stopped by Bernice's to borrow Dad's laptop so I can work on the program, and she said that Lindsey (my stepsister) was crying because they (Kamehameha) lost tonight's basketball game to Punahou. She was crying because she said she let John down. Dad was proud of Lindsey, as she was the tomboy athlete daughter he never had. I'm sure Dad's still smiling, looking down on Lindsey, and looking down on all of us.

My Pregnant Belly at 25 Weeks

Thursday, 19 April 2007



Wednesday, April 18, 2007

Memorial Service

Wednesday, 18 April 2007

We spent the day receiving and returning phone calls. In the afternoon, we went to Nuuanu Mortuary to take care of arranging services.

Services for our beloved father, John Mau, will be held on the afternoon of Sunday, April 29th at Nuuanu Mortuary. Casual attire.

Dad wanted to be cremated (as humble as he was, he never wanted to take up space in the ground). There will be a visitation period from 2:30 - 4:00 pm. Dad always told us he wanted to spread around the ocean and golf courses, and then for us to each keep some for ourselves.

The service and program will take place from 4:00 - 5:00 pm.

Hawaiian food will be served following the program.

An obituary will be printed next week. He wanted a personal one done, so we expect to have that along with the regular one they print.

We are asking that all monetary gifts be in the form of donations to the Muscular Dystrophy Association (MDA) of Hawai'i, to honor our courageous father, John Mau.

Thank you to Garry Loo for connecting us with Derwin and helping us arrange things at the mortuary. It's neat to know that the mortuary director knew Dad from his basketball/Parks days at McCully. Thanks also to Keora and Garry and the other Parks & Rec staff for recognizing Dad this morning in a memorial. He would have appreciated seeing all the sports memorabilia around his pictures and being mentioned as the "epitome of a Recreation Director" for his 30 years of service to the City and County of Honolulu. Thanks also to Keora for spreading the word and alerting everyone in the department about the memorial services, even before I had time to write this. (And perhaps we may take you up on the offer to fix our railings again one day!) Thank you to Uncle Gary for washing my truck (Dad would be happy that you are helping me take care of his car.), and Emily and Michelle, my Kahala coworkers, who brought over Costco groceries this afternoon. Thanks to Chris Otake for bringing over Chinese dinner to enjoy with us. Dad shared many years and memories with you. Thanks also to Dave Au and Al Chang who were supposed to visit Dad tonight, and still came over to pay their respects. Thanks Uncle Dave for taking care of the picture of Dad for his memorial, and thanks to Al for making all those DVDs and cds for Dad. We'll enjoy them for him.

The calls and emails and support have been overwhelming. Mahalo Nui Loa. I know Dad is smiling knowing that there are so many friends and family coming together. He would not want this to be a somber event, but rather a celebration of his life.

Thank You

Wednesday, 18 April 2007

We got to bed about 2:30 am (after I sent an email and pseudo sub plans to the school secretary), and although it was hard for me to sleep, I managed a few hours, with Dad's blanket and my Thai pillow he used to lay his head on, by my side. The phone has been ringing off the hook, and I got up early to call people, those friends who have just recently visited, and others who were planning on visiting but never got a chance. Got up at 7 am to eat something and noticed the rain outside. Took a picture of a beautiful rainbow over the valley. Minutes later, another one appeared over Kapi'olani Park. It continued raining all day today, like tears over the earth.

I frantically looked for a cassette tape I had. When I was two years old, my parents had my newborn baby brother Jason, and so they sent me off to California to spend the summer with my relatives. They had made me a cassette tape, my mom and dad each taking turns talking about me and Jason, talking about building the house, talking about their jobs, and even hearing me sing while proclaiming my stubbornness (which I get from my father) and hearing Jason cry and drink milk. I played some of it for my brother because I don't think he ever listened to it. Dad glowed about the then newborn baby, who looked more like his mother, while the eldest (me) looked more like her father. It was neat to hear Dad's voice, although a much younger Dad, and a not as gruff voice (must not have smoked much back then). I only have this tape now of Dad's voice. This, and the other tape I made a few months ago, of Dad reading my favorite children's book, "Where the Wild Things Are". I will always hold these in a special place and share them with our children.

My brother, Shelley, Chris, and I all slept in and got a late breakfast at Covenant House. The rest of the day will be spent calling people and receiving calls. We will meet Bernice and Dad's friend Garry Loo at the Nuuanu Mortuary this afternoon to discuss things and figure things out for Dad's service. I hear that this time can be chaotic and that there are a lot of little things to plan and think about. Kinda like planning a wedding, only it's not such a festive occassion. Dad would want this to be a celebration of his life though, and he's been telling me little things along the way, so we'll definitely make that happen.

Thank you for your many phone calls, thoughts and prayers, and words of support during this difficult time.

Dad's Passing





Tuesday, 17 April 2007

Just short of his 60th birthday (He would have turned 60 on May 23rd), and two months to the day after I held his hand as he walked with me down the aisle, Dad passed this evening at about 10:45 pm.

Although we knew he was dying when he was diagnosed with the terminal illness ALS (also known as Lou Gherig's Disease), two and a half years ago in October 2004, his death was sudden and a shock to us all. We knew he did not want any invasive devices, no feeding tube, no trach, no ventilator, to help prolong his life, even as his mind was fully functioning throughout this entire disease. You can accept it and live life to its fullest and enjoy each moment you have with your loved one, but you're still never fully prepared for the day, or even the moment, that loved one passes.

Around 10:06 pm, Bernice called my cell phone and home phone to say that Dad was getting ready for bed. She had given him his usual pills, then he asked to be massaged. He asked for the bell under his finger(which she only figured out because he spelled it out using his eyes on the board I just made a few days ago to help with communication since losing his voice). She massaged his shoulders and turned him on his side to rotate him. When she turned him back, his eyes kind of rolled back and he was taking really deep breaths. She got scared and called Hospice.

The on-call nurse said to give him his anti-anxiety pill and some morphine we had in the fridge. Chris and I were already ready to come down, and Bernice called again at 10:17 pm, because based on his symptoms, the nurse said he was probably passing. She advised Bernice to give him a little bit more morphine. I told my stepsister Lindsey we were on our way.

When we got there, Bernice was by his side, crying, holding his hand. I hugged him and kissed him and started bawling. His hands and his feet were still warm and I told him to be strong and hang in there. His mouth was a little open, and the bi-pap machine and oxygen were still flowing.

Over the next twenty minutes, Uncle Frank and Aunty Sharon came, Uncle Gary and Aunty Stevi, Jay, Shelley, Whitney, Garry Loo, and later Miya and Junji. Everyone talked to Dad and held his hand and gave him hugs and kisses. Some were more emotional than others. Aunty Sharon was convinced that he was just sleeping. Chris helped call people and keep the Hospice nurse informed. Eventually, it didn't really sound like Dad was taking any breaths in. Jay checked his pulse and said there was none. He took the mask off at one point, but I got upset and asked him to put it back on. Dad's hands and feet started turning white and pale, getting cold. He simply stopped breathing, his body too weak to take in the forceful air from the bi-pap machine anymore....But he looked at peace. Jay turned the machines off around 10:45 -10:50 pm.

There were many calls to my mom and close friends, waiting for the Hospice nurse, and then giving her information, trying to figure out where to have Dad's service (since we hadn't figured out those details with Dad), filling out paperwork, and then she threw any narcotic medicine of his away. We thought about Diamond Head Mortuary because that's where his parents are, but we also remembered he was first interested in Nuuanu Mortuary because it had a large gathering area. Dad was very concerned about the food and having a big celebration with friends and family. So, we settled on Nuuanu, since he is going to be cremated, and we know we will need a large gathering place because he was so loved by many. His friend Garry Loo contacted his friend, who was a coworker of Dad's as well, about helping Dad out since he works at Nuuanu. Not only would Dad like that because he is frugal, but he would also appreciate it because it is a friend.

Many people left at 12:30 am, leaving the family there with Dad as we waited for the mortuary. We talked about how he had wanted a shower that afternoon and how he had just peed prior to going to bed. He had drank an Ensure earlier, even though he only ate a couple bites of dinner. The Hospice nurse said that it was unusual that he ate anything. Perhaps he was preparing himself. I recalled how recently he had me take a sample of his hair "for DNA purposes". He was always so logical and practical sometimes about things like that.

1:30 am The guys from Nuuanu Mortuary came to pick Dad up. We each took a minute or so to say goodbye. I am glad that I came by earlier this evening to visit him. I feel bad that my brother didn't visit him earlier, but I know that we all did the best that we could in caring and loving him the way that we did. This time, Jay DID help carry Dad onto the stretcher, and into a white van. We'll meet with the mortuary tomorrow.

So, perhaps attaching the car battery to his machines wasn't the plan after all. Perhaps it wasn't a plan about how to strategically move him up our stairs and transport him safely to Bernice's house. Perhaps this is why Dad was so hard-headed and didn't want to tell us "the plan" on Sunday night before he made the big move. At least some people have been telling me this....that perhaps he wanted to come up to his house, where he spent most of his life singlehandedly raising me and Jay, to spend time with us, to be near his family. Perhaps this is why, over the past year, he had me slowly bring things of his from Bernice's house back up to our house, making sure his financial things were in order. Perhaps this is why he was so adamant to rush the move back to Bernice's house on Monday, even in his debilitated condition. Perhaps this is why he mentioned to the care agency that "it is bad luck for Chinese to die in the house." Perhaps he loved us so much that he didn't want to burden us anymore. Perhaps he loved us so much that he wanted to spend time with us, and then go back to spend time with Bernice and die. Although I already miss him so, and as much as I wish that he could have held on to see his first grandchild in a few months, at least I know that he is not suffering with this dreaded disease anymore. He was a very strong, loving, humble man. And, in some way, perhaps THIS was Dad's "plan" all along.

Tuesday, April 17, 2007

Checking Up And Checking In

Tuesday, 17 April 2007

I had doctor's appointments today. Got ultrasound pictures of "Junior" with his legs crossed, but he was facing downwards today, so didn't get a look at his face. At one point, his hands and feet were over his head. Must be the yogi in him. His heart rate was 124 beats per minute, and he is a healthy 1 pound 9 ounces at today's 24-25 week checkup. My cervix measurements are still fluctuating, and I'm still able to handle the "abundance" of fluid (must be all those Nalgene bottles I drink daily), so my cervix may not be "incompetent" as they have thought. In any case though, I've still been advised to do light to moderate exercise, which means walking. I am still prone to pre-term labor because of a uterine septum and my cervix issues, so they're just being cautionary and saying I should hold off on major exercise for another month. Over the next month, I'll have a string of appointments at the hospital each week, including ultrasounds, a routine glucose test for diabetes, a tour at the hospital, and we'll start a 4 week series of birthing classes.

Went to visit Dad and drop off some stuff they left at the house, like the catheter, a pair of shorts, and his board to look at the newspaper. Bernice was getting ready to go to Lindsey's basketball game, and Uncle Frank was coming over to stay with him for a few hours. I showed Dad the ultrasound pictures and explained to him what the doctors said, then put his hand over my belly so that he could feel the little guy move. I asked him how he had been since he got back to Bernice's house. He said he was tired, fell asleep at 5:30 this morning, which has been his usual trend this week.

I told Dad I was going to take one of his financial folders, friends' addresses, and two boxes of photos that we have been meaning to sort through for some time now. His clothes were in a garbage bag on the lanai. Dad asked me if I got the new checks yet and kept reminding me to tell Jay to check on them. I told him I still had his wallet and money at home. He told me it was okay and to hold onto them.

Dad was very lethargic, had no voice, and was straining to breathe the whole time I was there. I took off his shirt because he was hot, bent his legs, and then later he got cold. He's been fluctuating in temperature a lot this past week. He asked me to check with Bernice about the schedule, about caregiving for him. I told him and Bernice that I may just visit for now, but he wanted Uncle Gary to come by tomorrow and he wanted Jay to check in with Bernice. I told him to be strong and that I loved him, then gave him a kiss.

Uncle Frank had gotten there and would be with him for a few hours, to feed him dinner and hang out with him for the evening. I was exhausted, as I think Junior is going through a growth spurt, so I went home around 6:30 pm, ate dinner that Jay picked up for me, and then went to bed early at 9:30 pm.

Monday, April 16, 2007

The Move

Monday, 16 April 2007

Bernice took him back to her house in Palolo today. We (my brother and I and the Hospice staff and his doctor) were not in agreement with moving him at this point in time because his condition has left him in a weakened state. So, we all refused assistance in moving him. And, so she got friends and ambulatory services to help move him and his things. The move was suppposed to take place around 11:30 am, but when I called Jay, he said they were assessing the situation and trying to figure out how to move him up our crazy stairs up the side of the mountain. Jay just knew it would be a problem. He usually just carries Dad on his back, and can do it in half the time it would take three or more people to carry him up. But, he wasn't about to help today and stood strong to his convictions.

I haven't seen Dad yet, but will check on him later to see how he is. I hear he is really exhausted and tired from the move. Apparently, as Jay watched, they had a hard time carrying him along with his oxygen and bi-pap up our 85 steps to the driveway. It took 3 big guys carrying him in a bedsheet, a couple friends helping to carry his oxygen and bi-pap and car battery to make it all run. They hit all the railings down on the way up (Sorry, Keora and Garry, but looks like all of your recent handiwork was ruined!), and two guys were climbing up the side of the hill at one point where the cement stair width only allows for one person. Jay told me that someone slipped and they sort of dropped Dad, but he maybe just hit his shoulder on the ground. By the time the guys got to the driveway, they were huffing and puffing like crazy.

A couple of Dad's Parks and Recreation friends helped settle him in the house as everyone split after they dropped him off. He was super exhausted from the move so he slept. The company came to pick up and disassemble the hospital bed in our living room, and then I cleaned and swept and rearranged our furniture back to normal. Uncle Gary and Uncle Ray came down to hear what happened and get the scoops on how the move went. They both stayed away during the action.

We'll see what happens. Bernice took a leave of absence from work. My brother and I are not happy with the way Dad's care has been handled in the past and as of recent, so we are not going to caregive in the same capacity as we did before. But, we will be there for my Dad for sure.

Last night, Chris and I had some private time with Dad as we fed him dinner while Bernice went out with her friend. Chris made Dad laugh when he told him that I always fall asleep when we try to watch a show or movie on TV, and then I bug him in the middle of the night to find out what happened. And, everytime that "Junior" moved and made my belly button look funny, I grabbed Dad's hand so that he could feel him moving and kicking. It was nice to see a big smile on Dad's face. It's been a tough journey. But, we're all hanging in there. I hope Dad is doing okay, and, even though it's been quite a week of turmoil, I will visit him soon just to see that smile on his face again.

Moving Day

Monday, 16 April 2007

Bernice started moving Dad's things yesterday. I gave her a list of questions and requests that I needed for her to address to reassure me that Dad's care will not be compromised, from financial things to medical contacts to his will. She has planned to move Dad today around 11:30 am. I talked to Dad about my concern about moving him, and how we should do a test run and see if he can last without his bi-pap for about 5 minutes because it should take at least that long to transfer him from the house up 85 stairs to the car. He was stubborn though, and did not want to do a "test run". He said he has a "plan" although he would not tell me or my brother what his plan was.

Since his doctor and the Hospice staff are concerned that this move could weaken him further and be detrimental to his condition, thus refusing to provide assistance in moving him or his supplies, my brother (although off of work today) is refusing to help as well. He will go by, as will the social worker, to ensure that things are done safely, but not to help carry him or any of his things up the stairs.

When I left the house for work this morning, I told him I loved him and to be strong. We'll see what happens.

Sunday, April 15, 2007

An Afternoon Visit


Sunday, 15 April 2007

Spent the day doing wedding thank you notes (I've been a little busy and preoccupied as of late), and stayed home all day with Dad. Bernice went out a couple times today, so I fed him and talked to him, trying to keep him awake so that he won't be up all night.

His fraternity brother Joe Chang visited him in the afternoon and brought over a pie. He ran into my aunt and uncle yesterday, and they updated him on Dad's condition and told him to visit Dad. Referring to him by his nickname, "2 1/2 Beers Mau", in reference to his inability to drink alcohol, which I also inherited, and "John Thomas", referring to a high jump athlete in college because Dad was the most all-around athlete in their Peng Hui college fraternity, it was quite funny to hear all the old college stories about him and friends who I now call "Uncle".

He said next time, he'll relive the band days (just like the Peng Hui Five that used to entertain at all the frat parties back at UH) and have the other guys come over and have a little jam session with their ukuleles and such to entertain Dad.

We told him to visit soon.

Friday, April 13, 2007

Friday the 13th

Friday, 13 April 2007

Friday the 13th....Should have expected craziness to happen. The kids at school finally finished a grueling week of state testing and SAT testing. My poor kindergartners died in today's section called "Environment" where they were expected to identify who was in the armed forces, how oil travels, who Abraham Lincoln was, and where water for rivers and streams come from, etc. Even the swift kids didn't do too well. Having a full week of testing though made this week low-key as far as planning goes, which was nice because it was a draining week at home.

Came home to talk to the Hospice social worker and Bernice and Dad. She acted as a mediator this afternoon. Apparently, this morning, Bernice had requested ambulatory services to move Dad and his belongings from our house down to her house. Although my brother and I don't think he should be moving in his weakened state and condition (and after we have already changed all of his accounts, address, mail, and informed medical staff of the change in his primary care providers), and after a lot of discussion, arguing, and tears this afternoon, Dad is moving back (yes, again...and even though this last time was supposed to be permanent, this next move REALLY is supposed to be permanent) to the house in Palolo at 3513 Pakui Street probably early next week. Dad merely listened, as his voice and energy is weak. Though, before he started to go downhill last week, he did mention that he doesn't want to burden me and Chris and my baby, in our new beginnings. I reminded him today that it is not a burden and that we all prefer to have him here at our home with us, that we just want to make sure he is comfortable and at peace and not see his care being compromised. The Hospice nurse and social worker and Dad's doctor also have concerns about him moving in his weakened state, and Hospice is refusing to provide assistance in transferring him or his medical supplies to the other house. Ultimately, after two and a half years of caregiving, and after two hours of intense discussion yesterday between me and my stepmom, it was my Dad's decision. And, I must respect his decision.

I'm not certain to what capacity I will be caregiving, but I will still maintain the calendar on google.com for visits and such, and I am requesting a caregiving plan be put in place and be presented to us in writing so that I am assured that his care will not be compromised again. Throughout our conversation this afternoon, Bernice apologized for mistakes made in the way she handled situations in the past and asked for forgiveness, stating that she has now come to accept that Dad is dying and that she just wants to be with him for his remaining days. She knows that she needs to prove it to me and my brother so that she will gain our trust. The social worker told me "Sorry" before she left, and she told me that it is part of her job to make sure she does not put Dad in an unsafe environment, as her license would be on the line too. Although the nurse and social worker stated it is a possibility that he could get weaker as a result of the move, it is ultimately his decision.

Please call Bernice (home 808-739-1372/cell 808-223-1926) if you would like to visit and/or help out at the house. Dad's condition, although he is still weak and lethargic, has improved since earlier this week. We got oxygen delivered yesterday, and although he still does not have his voice and it probably won't come back (though his audible voice does come and go, and we have been reminding him to limit his phrases and words to save his energy and breath), he is eating a little better and is trying to catch up on sleep.

Dad still wants to die at home (vs. a hospice facility) and would appreciate visitors (as long as you can lip read!). I know he has many friends that would like to see him.

Thank you to those who brought groceries over, did errands, fixed our railings, and brought over lunch and dinner and spent quality time with Dad over the past few weeks he's been with me and my brother Jason. We really appreciate your care and concern. Thanks for all of your love and support through all of this. It's been a tough journey, and I hope he goes in peace.

My friend Teresa just sent me a beautiful quote:
"It is by suffering that human beings become angels."
Victor Hugo

Thank you, Teresa. I hope that I will be able to develop trust and forgiveness so that I will be able to comfortably spend time with Dad, for the rest of this precious time he has left.

Thursday, April 12, 2007

Oxygen

Thursday, 12 April 2007

Dad seems better today. We got oxygen delivered in the form of a box-like contraption that is not pure oxygen, but separates the oxygen from the nitrogen and is almost 98% oxygen. It hooks up by tube to his bi-pap machine. We checked his pulse and noticed that his oxygen level was higher (climbed up to 100) when the oxygen was connected, and hovered around the mid-80s when not connected. Normal oxygen levels are in the 90s. So, we will keep him hooked up to the oxygen as he probably needs it. They also delivered a huge backup oxygen tank in a Christmas stand, in case the electricity goes out. And, we have four little tanks for portable use in the car. We were trained on how to use them, but it is good to know that my brother and cousin are firemen, so they know how to operate them too.

Dad still has no voice (although we had hoped the flow of oxygen would bring his voice back like the bi-pap used to, but at this point, I think his voice is just weakened from his body shutting down due to ALS progression). He is eating a little bit more, but is still sleeping a lot during the day and hardly getting any sleep at night.

Wednesday, April 11, 2007

Dad Doing Better

Wednesday, 11 April 2007

Dad is doing better today. Although still lethargic and tired, he is more alert than he has been the past couple of days. He has eaten a little more, and he definitely can hear and knows what's going on around him. You can still make him laugh, and he could still feel the baby (when I put his hand on my stomach) and smiled this afternoon when "Junior" was busy moving around in my tummy. Bernice stayed with him all day, and Uncle Gary will come to relieve her this evening. I know he's "with it" because, when he wanted to watch a DVD today, he had me put in the burned copy instead of opening the brand new DVD of the same title that someone bought him. I said, "What? Are you going to sell this other one or something?" His pake blood still runs through.

We still want to give him time to rest though, and since his voice is still not audible, we don't want a whole bunch of visitors coming at once. But, do please call in advance if you think you are interested in visiting in coming days...as long as you can make him laugh!

Holding Off On Visits



Wednesday, 11 April 2007

My dad has taken a turn for the worst as of this past weekend, as he had difficulty breathing and sleeping for two nights in a row, even after the bi-pap level was pumped up. He is now pretty disoriented, as his body seems to be "shutting down" and not responding to the air pumped out from the bi-pap. He is having difficulty breathing, and has lost his ability to speak audibly. It's been a long week so far, but we're hoping he hangs in there.

This could be just the next stage of the disease, as most ALS patients do eventually lose their speech. But, we are worried about his ability to breathe and respiratory failure. He has been lethargic for the past few days, not eating much, and was in and out of consciousness all day and night yesterday.

The Hospice nurse will check him this afternoon. But, due to his condition and the challenge in him trying to communicate with us, we are asking that people not visit right now so that he can rest and so that we can make sure he is comfortable.

Thank you for all of your love and support during this difficult time.

Tuesday, April 10, 2007

In and Out

Tuesday, 10 April 2007

10:15 pm

Uncle Frank came over tonight to stay with Dad and visit, as his usual Tuesday and Thursday visit. He was having difficulty understanding Dad, so even though he told me that I could go to the ALS support group meeting, I decided to stay at home with them. I was worried he wouldn't understand Dad's needs. I'm so used to his little idiosyncracies, that I felt it was better if I stayed. Uncle Frank asked if we've considered putting him in a Hospice facility, that other visitors might not know how to communicate with him. I got sad thinking about the inevitable, and he comforted me. I've been staring at the list of warning signs of death (given by Hospice) all night. Does Dad have these signs? I hope not.

But, Dad was in and out of consciousness all day today. I gave him a drink of water, and he asked for his pills. I told him it wasn't time yet. It was only 6:50 pm, and he takes his pills at bedtime. He asked for S & S Saimin (That's what he usually eats at home, but I told him we didn't have any here, but I could make him cup of noodles.) Then, ten minutes later, after I made it, and I woke him up, he said he didn't want it. He ate a couple spoonfuls, but he wanted fruit instead - bananas. He ate one apple banana. That may have been all he ate all day.

This evening, we had about 11 people in the house, with Frank, then Cori and Steve visiting, Uncle Gary and Auntie Stevi and cousin Geoff, then Bernice, Jason, and Shelly coming home after watching Lindsey's basketball game, and Chris coming home from work. It was like a party in the living room, as they watched the video of Lindsey playing basketball - Kamehameha beat first-ranked Iolani tonight.

Dad's voice came back in spurts, but he slept most of the night and struggled to exhale. He would ask what time it was and would mumble things here and there, but they were pretty random comments, and he seemed disoriented most of the time. I talked to the Hospice nurse about his condition, and she said to call the on-call nurse if anything drastic happens during the night.

Bernice will stay the night tonight on the couch. The crowd of people have now left, and it's quieter in the house now. Dad's inhale is apparent through the drone of the bi-pap machine, and you can hear him grind his teeth when he's in a deep sleep. I hope he gets some rest tonight and that his day is better tomorrow. He has a full day of visitors tomorrow as well.

Figuring Out His Needs

Tuesday, 10 April 2007

As I got ready for work this morning, I could hear Dad mumbling. Not quite sure if he was talking in his sleep or trying to tell me something. A few times his voice would get louder, and I would go out from the bathroom to see what he wanted. I moved his head, changed his pillow to mine (which he soon spit up all over, along with his face and neck because I didn't hear him soon enough), gave him sips of water, and wiped his face down. I thought he asked for mouthwash at one point, but when I showed it to him and asked "Do you want this?", he just fell back asleep. Jay, according to his constant grinding of teeth, was fast asleep on the couch. I'm sure he had a long night.

When I got home from work at 1:30 pm, Bernice was visiting with him. He was complaining of being hot, but we took his temperature, and it was fine. I think it's just the weather. It's very humid and muggy, inside and out. So, even I took a nap. Another friend, Don, tried to visit, but Dad was so out of it, that he just dropped off manapua with us and will try for another day. Uncle Gary and Auntie Stevi visited for about an hour. Every once in awhile, amongst grinding teeth (it runs in the family), Dad would open his eyes and mouth something, looking for me as far as his eyeball will go. I'm pretty good at deciphering and reading his lips. But, it took the three of us to finally figure out that he didn't want to be turned over completely, but just wanted to be turned to the right for a moment, then laid back down, with the pillow removed from under his head.

He needs to catch up on his sleep the rest of the day, since last night was a pretty restless, difficult night for him. The respiratory therapist adjusted the level of his bi-pap today and taught Jay how to adjust it in the future so we can do so to make Dad comfortable. He simply was not able to breathe and get air properly last night. His body is getting weaker and not able to trigger the exhalation he needs, even with the added pressure.

Although his face was scrunched up in a frown most of the time when he was frustrated with me not understanding what he wanted, at one point this afternoon, he grimaced. He realizes it is hard for us to understand him without a voice. I told my aunt and uncle, "Well, at least he still has his sense of humor." It's going to take some adjustments and time for us to figure out his needs from now on.

Monday, April 09, 2007

Without a Voice


Monday, 9 April 2007

Garry, Dad's coworker from the Parks, came over and visited during lunch with Dad. Cione, the respiratory therapist, came over to adjust the bi-pap setting. He spent awhile trying to adjust the inspiration (inhale) and exhalation (exhale). He changed it from 16/8 to 20/7 so now the range is larger now, which means Dad's lungs will be expanded more. But, Dad had virtually no voice all day since last night.

Even after the setting was changed, Dad still had trouble all night getting used to the pressure and communicating with us. It's a good thing that I'm sured to reading his lips and his expressions and his eyes. Even when Chris sit next to him and help him with the crossword puzzle, I would glance at Dad's face from afar when he seemed frustrated and "translate" for him. 'He wants 114 down,' or 'He wants you to move his head to the right and put the towel under the pillow so his head won't lean to the left.' Even Paul, the Hospice volunteer, who came from 6:30 to 8:30 pm, had trouble understanding Dad tonight.

Jay helped set up the voice computer program. We had first played around with it months ago, when we were first introduced to it, but now we'll have to rely on it more if Dad's voice stays like this. Occassionally, his voice will be audible, but usually it's only a word here or there. Perhaps he's still getting used to transitioning from a lower pressure to a higher pressure on his bi-pap, or perhaps his lungs and his muscles just don't have the strength anymore. Often, I tell him to not worry about speaking in complete sentences as I don't want him to strain his voice and his energy. We'll need to turn to other devices now.

The tricky part is sleeping now, not only for him, but for us. Jay slept out on the couch near him. I woke up a few times during the night when Dad depressed the doorbell, but most times, Jay would be up, with the living room light on, trying to read Dad's lips and figuring out what he wanted. We need to look into getting a better signal device, like a head buzzer I know of that some ALS patients have.

Caregiving and visiting with Dad may get a little trickier now, as he'll have to rely on technology and lip reading to communicate his needs.

Sunday, April 08, 2007

Breathing Difficulty




Sunday, 8 April 2007

Since the beginning, my dad has felt like he doesn't want to burden us. But, I moved home to take care of him. I made that choice, as I was living away overseas at the time. And, I knew that it was my choice to do that. I don't regret my choice, as it has given me valuable time to spend with my Dad. Even now, I know he feels bad that I am newly married and pregnant, and he doesn't want to put undue pressure on me or my marriage/relationship. But, Chris is very supportive and understanding, and knows what we are doing is best for my father. I always try and tell my dad that he is not a burden, even though the day to day frustrations may sometimes convey otherwise. It's a reality that 24/7 caregiving is emotionally and physically draining, especially when you don't have a lot of help. But, it's bittersweet really, as I feel like it also gives us valuable time, time that I otherwise might not have spent getting to hear my dad's stories from the past, seeing his old friends stop by and reminisce, and looking through old photos and recalling fond memories. Time is precious. So, I try my best to remember that, and to not take things out on my dad if I've had a long day at work, etc. because I know that he never asked to get ALS, he never expected to lose his independence so young...I figure it's okay to be selfless for awhile and give time to my dad, because it's that precious time that I'll never get back later. And, I'm grateful that he's still here with us.

Today was spent waking up late since I went out last night for Stacy's bachelorette party. Chris and I made waffles and bacon for a late brunch. Dad's former coworker Bert brought over a DVD for Dad and visited for a bit. All the boys soon fell into naps, so I napped out on the couch near Dad. It was so hot and muggy in the house, that it just turned into a lazy afternoon. Chris and I were able to get away for a quiet Italian dinner at Verbano for about an hour, while reflecting on my stepmom's recent request to return to her house. Right now, we just want him to be comfortable where he is, without any stress or anxiety.

2:37 am Dad woke up and was anxious as he didn't feel the air from the bi-pap was strong. His voice was definitely not as strong, and he was having difficulty talking. He said he could not suck the air in. I checked all the hoses to make sure they were properly connected (as sometimes in the night, they have come loose before). He wanted me to switch the hose directly from the machine to the mask, instead of from the humidifier to the mask. After checking for leaks in his mask, and assuring him that everything was okay, he still did not feel right. He said the machine wasn't working. I woke up Jay to reassure him. I pulled the hose out of the machine for a couple of seconds so that he could hear the forceful air being pushed out, the loud drone sounding like that of a vaccuum cleaner. But Dad still felt uneasy.

At 7 am, I called the respiratory therapist and asked for the bi-pap level to be pumped up, as due to Dad's lethargy all weekend (I nearly had to wake him up for meals because he was sleeping all day) and his anxiety and voice, I don't think the current level is working efficiently for him.

Saturday, April 07, 2007

The Doorbell

Saturday, 7 April 2007

The wireless doorbell under Dad's finger worked last night. I slept in my bedroom (vs. sleeping on the couch) and left the door cracked, just so I could hear the loud bong above the fan and TV noise. Like clockwork, from 3 - 3:30 am, the echoing "DING-DONG!" went off. I jumped up, and Dad wanted me to empty the urinal. Then, I turned on the TV and set the timer for an hour or so. I managed to go back to sleep for a couple hours....until, "DING-DONG" at 5:30 am. This time, I didn't quite 'jump up', but more like walked like a zombie and said, "I'm coming," while mumbling "I'm tired" under my breath.

Dad wanted me to empty the urinal, then do range of motion with his arms and legs, take away the doorbell from his index finger, then fix his mask. Give him a sip of water. Finally, fix his blanket around him so that it is just so.

Before I walked away, he told me "Sorry. I know. I read your blog." I sauntered back to my room and cried. Cried because my body is so tired. Cried because this is hard. But, most of all, I cried because I don't want Dad to feel like he's burdening us with his care.

I managed to go to sleep for a few more hours without dreaming of doorbells.

Thursday, April 05, 2007

Getting Used To "The Dad" Chores

Thursday, 5 April 2007

Perhaps it's due to pregnancy hormones, or just due to the stress of 24/7 caregiving, or probably a combination of both, but I've noticed that my patience often runs thin with Dad. We've (me, my stepmom, brother, and uncle) all known that he is pretty demanding, especially being trapped in his own body. He knows what he wants, but he simply can't do it himself, so he will describe to you every step of the way how he wants something done, whether it be flipping him over the bed on his stomach so we can physically pound the mucus out of his throat (while one person holds the bi-pap mask in his nostrils, the other holds his torso and taps, and the other makes sure his arms are not squished and he is perpendicular on the bed with his toes not harmed) or how he wants his stomach rubbed when he's having a bowel movement, or how he wants his head scratched (and for how long) when he's being bathed.

After I feed Dad and get myself fed and showered, my late nights (when Jason is working) are spent brushing Dad's teeth (and I've already been properly trained on how to brush without his complaining), washing his face with a hot towel (not too hot, and not too cold, about 20 seconds in the microwave is fine), giving him his ten different pills (remember that he can take two small ones at a time, and one big one at a time), changing his bi-pap mask and his tubes, washing them in vinegar and water solution and airing them out, filling the humidifier up with water, and connecting all the correct tubes so that they won't snag during sleep, setting up the urinal in the bed with the bed angled so it won't spill its contents during sleep, putting the layers of blankets on him (and remembering he likes them tucked around his shoulders and toes, but not around his neck - also making sure his t-shirt is not close to his neck), pulling his left elbow out a little bit, setting up the wireless doorbell under his right index finger (just at the edge so he can push it, but not right on the center so that it depresses and makes the loud echoing bong throughout the house), situating a rolled up towel under the pillow to the right of his head so his head is straight, laying out his fingers flat so they are not curled, and then setting the timer on the TV for about an hour and a half, and finally changing the channel to his channel of choice.

After all of that is done, he probably will ask for the channel to be changed about two or three times, after Jay Leno, and he probably will have to pee once before bed. I usually get to bed on the couch next to him a little after midnight. Then, about 3 or 3:30 am, he wakes me to empty the urinal again.

Although I'm a light sleeper, I've gotten use to the drone of the bi-pap machine blowing air into his lungs, and well, I'm still trying to get used to the TV being on.

Needless to say, I don't get a lot of REM sleep. And sometimes I've even decided to eat something at 3 am because my stomach is empty. This first week back at work was tough though. I was yawning and exhausted from the moment I walked into my classroom at 7:30 am, and after eating and feeding Dad lunch, I often pass out for a nap (if I can get one in) in the afternoon. Chris is good about helping me with the dishes and laundry and is getting used to preparing his own dinner if I don't have the time or energy to cook (as often he gets home close to 9 pm from his two jobs and I'm often just fine with leftovers myself).

I have to admit though that I am getting cabin fever, and my brother and I now have to schedule our social plans around each other's schedules to make sure we have coverage for Dad. Just found out that Dad's friends Frank and Sharon are going to come and bring dinner tonight, so that's good. That means Chris and I can perhaps go out and spend some time together. It might be spent going grocery shopping, but at least I'll be getting out of the house, and it'll give me a couple hours' break from "the Dad" chores....until bedtime that is.

Thank goodness for Good Friday tomorrow.

A Ha's

Thursday, 5 April 2007

Everyday now, students come up to me and ask me about my growing belly.

R: Is the baby still inside there?
Me: Yes
R: Do you have to go the hospital?
Me: I go to the doctor's so they can make sure the baby is doing okay.
R: Are you having a boy or a girl?
Me: A boy.
R: How do you know?
Me: The doctor can check to see if it's a boy or a girl.
R: Oh. Why didn't you tell us before?!
Me: It was to early to tell. Are you going to help me think of names?
R: I was just thinking of them last night!

Tuesday, April 03, 2007

Moving Around

Tuesday, April 3, 2007

"Junior" (as he is affectionately known as since we don't have a name chosen just yet) has been busy kicking (often when Mom is eating.....mmm isn't nourishment a good thing?) and moves around a lot, often sticking his butt out so that my belly looks lopsided (He always has favored hibernating on the right side of my belly the entire pregnancy.), and it sometimes hurt because he's stretching my skin so much. Hence, my dad thinks a good name for him would be "Butthead" (affectionately named of course).

Since I'm showing now, more of my students are noticing my belly and asking if there's a baby in there. One of my first graders wanted to touch my belly and asked if the baby's warm or cold inside. They're all very excited.

I'm still getting over my cold that I had the entire two week Spring Break vacation. Probably not helping that I'm not getting as much sleep as I usually do, getting Dad ready for bed and getting him situated with the bi-pap and the television.

Plus I'm still behind on doing my report cards and taxes and wedding thank you notes. I simply have not had any uninterrupted time to do them.

It's been nice to have Dad's friends call and visit. Yesterday, he had people in and out all day, with his coworkers from the Parks & Rec bringing lunch by, and then a couple guys watching the Final Four in the afternoon, and then others staying for dinner. I took the afternoon and evening to totally dismantle my closet and reorganize. Productive (and yes, probably procrastinating on other things I need to do, but that needed to be done too.)

We had someone from Health Care Alternatives come by this afternoon to talk to us about the services they provide for home care, including everything from skilled nurses to ordering bulk medical supplies to post-mortem care. It's expensive (the cheapest nurse is $22 an hour), but could be very helpful. Plus, they're very familiar with working with ALS patients, so that's good.

Speaking of which, Dad wants to remind everyone not to forget to watch "Frontline" tonight (from 9 - 10:30 pm Hawai'i time) on PBS (Channel 10 in Hawai'i) for an ALS story.