Learning to Live: 2006

Thursday, December 28, 2006

Being Courageous

Thursday, 28 December 2006

I came across this comment on the "Living with ALS" chat room today, and it is a great follow-up to the previous post on "The Perils of Mute Communication" written by Dov Wisebrod. As we continue our daily routine with Dad and focus on making him comfortable, it is important to remember how courageous Dad has been with this horrible disease over the past two years.

"ALS has taught me patience in all things - with other people, with
myself, and especially with my body. I've become accustomed to my
mind racing ahead of my body's ability to catch up and put in effect
all my ideas. I've learned to think, reason, and plan before
beginning a project like writing or programming. So I knew what I
wanted to write before I started.

I initially wrote an article that was about half the final size, and
it was rejected by one paper. (Boo-hoo, but I've had legal articles
accepted and rejected by law journals, and I was executive editor of
a law journal, so I'm used to rejecting and rejection.) So I beefed
up the article, constantly edited it, and when I was finally
satisfied, I submitted it to a better newspaper. They did a wonderful
job, giving it a full page on the front of a section with an
excellent illustration.

I don't feel courageous, though I've been called that by almost
everyone who wrote to me after the article was published. In fact, I
think anyone who accepts a diagnosis of ALS is courageous. It is
irrelevant to me whether the person chooses to live with the aid of
machines and medications, as I have, or not. The very act of
consciously choosing to live or die (whether assisted or unassisted)
is courageous in and of itself. After making that inherently
courageous decision, all that follows isn't courageous at all. It is
simply the consequence of that single courageous choice.

That is my opinion."

Dov Wisebrod
wisebrod.com

Wednesday, December 27, 2006

Calling on Hospice

Wednesday, 27 December 2006

Now that Christmas is over, it's back to the grind. But this time, I can sleep in later, wake up later, and finally clean the house (hopefully!). Today, we had a family meeting with two people from Hospice Hawai'i. Since Dad has decided not to get a feeding tube or to get a tracheostomy/ventilator, we have called on Hospice to help us make him comfortable. His ultimate wish is to die at home, not in a hospital or nursing home.

A social worker (who is actually a friend of Jay's, his age) and a nurse came. They will provide social support for the family if we need someone to talk to and nursing assistance. They even provide respite care for caregivers if needed, as they have volunteers that can do 4 hour shifts. The nurse will be the main liasion between doctors now. The bi-pap is seen as "comfort care" so he can still use that, but typically patients do not see doctors once they sign up for hospice or get any procedures done as that would revoke hospice. They will be helpful. In the end, they will aid with pain medication and such so that he can die with dignity in the home. So, we don't call 911 in an emergency. We call hospice. They will even help with funeral arrangements and such. Both Joy (the nurse) and Joanne (the social worker) will check in with us weekly or as needed.

Dad can eat better and has more energy to talk and breathe with the bi-pap, so he uses it often. Still, he chokes easily when eating and cannot cough or rid his body of the mucus. But, he managed not to get sick this Christmas, so that is good. I got him the Magic Bullet for Christmas, so perhaps that will help to blend his food.

Hope everyone was able to spend time with their loved ones this Christmas. As for us, we take each day as it comes.

Do I look like I'm tired of making popcorn or what?

What could this be?! You're looking at Chris' creative wrapping job..........using all masking tape!

The sailor statue must be a collectible because it was the gift in contention at the Christmas party.

Kimi, Peggy's daughter-in-law, hides the wanted sailor statue and carries it like a baby.

Peggy Chun and Tanya

The lit tree at Peggy's house looks like it goes through the roof. That's why she puts a little one on her roof as well.

Peggy Chun, a well-known local painter who has had ALS for 4 years now, communicates using her eye transfer board, with her husband and nurse by her side.

I led the white elephant exhange game at the ALS support group Christmas party at Peggy's house.

Divina, the party hostess and wife of an ALS patient, welcomes everyone, including Ken, another ALS patient on the right.

Warren, another ALS patient on the left, and family caregivers from the support group hang out at Peggy's house.

Gary pushes Dad into the house.

The Parks & Rec Gang with Dad.

Keora, the director of Kahala Rec, where Chris and I grew up going to Summer Fun, says bye to Dad.

A popular local grocery store called Daiei just got remodeled and taken over by the Japanese chain Don Quijote. Although the fire department made them take away the jungle like furnishings hanging from the ceiling, the store still remains a "jungle", with confusing aisles and products arranged in small, crowded spaces. It makes for an entertaining visit.