Thursday, March 29, 2007
Honeymoon on Kaua'i
Chris and I enjoyed a long weekend on Kaua'i at the end of March. We played tourists all over the island, visiting my favorite Lumaha'i Beach, going to the Kilauea Lighthouse, Wailua Falls, Waimea Canyon, Hanalei, Hanapepe Art Walk, and taking in beautiful sunsets at our condo in Poipu.
Wednesday, March 28, 2007
Working Together To Make It Work
Wednesday, 28 March 2007
After a week of alternating who's sleeping out on the living room couch with Dad during the night, we've figured out some things to make our lives easier with Dad being a permanent fixture in the middle of the living room:
1) Cut a hole in the egg crate cushion on the bed, so that we can strategically place the urinal in just the right place so that it will not tip over during the night. That way, we can get a little more sleep instead of waking up a couple of times during the night to get up and pee Dad. (We tried a condom catheter, but it leaked and Dad was too anxious about sleeping with it through the night.)
2) Put a bed pad underneath him just in case.
3) Put fancy nightlights around the living room so that we don't trip over the surge protector and all of his cords from the bi-pap machine, and also one in the hallway so that we don't accidently slip and fall while walking in the middle of the night with a urinal of pee to dispose of in the bathroom.
4) Use every sofa cushion and rolled up towel, with one and two pillow options available, so that he is comfortable throughout the day, and so that his head doesn't remain cocked to the right.
5) Put daily pills into a pillbox to make it easier for dispersion.
6) Leave the extension cord outside and the hose hooked up to the hot water faucet so that it is ready for setting up the bi-pap and showering Dad on the lanai.
6) Make a handy binder with important contact numbers and range of motion pictures and descriptions of Dad's needs (ie. How to Feed Him, How to Set Up The Computer For Him, How to Set Up and Operate the Bi-Pap, etc.) for volunteers that come to help Dad throughout the day.
Jay and I work well as a team to tend to Dad's needs, and Uncle Gary has been helpful as well as he learns and helps me with Dad's routines when it comes to bathing, changing, transferring, eating, and his general idiosyncracies. Chris and I have planned to go to Kaua'i from tomorrow through Sunday for a little honeymoon getaway, and Uncle Gary has already offered to help Jay watch Dad during certain times over the next few days. Several friends have called and emailed that they will stop by and visit to watch the Final Four with Dad or bring lunch by. Our plan is to set up a website with calendars so that friends and volunteers can check the calendar and sign up for times available when they would like to visit and help Dad with his care.
Life is so much better when it's organized and you have a team that you can work together with towards the same positive cause.
After a week of alternating who's sleeping out on the living room couch with Dad during the night, we've figured out some things to make our lives easier with Dad being a permanent fixture in the middle of the living room:
1) Cut a hole in the egg crate cushion on the bed, so that we can strategically place the urinal in just the right place so that it will not tip over during the night. That way, we can get a little more sleep instead of waking up a couple of times during the night to get up and pee Dad. (We tried a condom catheter, but it leaked and Dad was too anxious about sleeping with it through the night.)
2) Put a bed pad underneath him just in case.
3) Put fancy nightlights around the living room so that we don't trip over the surge protector and all of his cords from the bi-pap machine, and also one in the hallway so that we don't accidently slip and fall while walking in the middle of the night with a urinal of pee to dispose of in the bathroom.
4) Use every sofa cushion and rolled up towel, with one and two pillow options available, so that he is comfortable throughout the day, and so that his head doesn't remain cocked to the right.
5) Put daily pills into a pillbox to make it easier for dispersion.
6) Leave the extension cord outside and the hose hooked up to the hot water faucet so that it is ready for setting up the bi-pap and showering Dad on the lanai.
6) Make a handy binder with important contact numbers and range of motion pictures and descriptions of Dad's needs (ie. How to Feed Him, How to Set Up The Computer For Him, How to Set Up and Operate the Bi-Pap, etc.) for volunteers that come to help Dad throughout the day.
Jay and I work well as a team to tend to Dad's needs, and Uncle Gary has been helpful as well as he learns and helps me with Dad's routines when it comes to bathing, changing, transferring, eating, and his general idiosyncracies. Chris and I have planned to go to Kaua'i from tomorrow through Sunday for a little honeymoon getaway, and Uncle Gary has already offered to help Jay watch Dad during certain times over the next few days. Several friends have called and emailed that they will stop by and visit to watch the Final Four with Dad or bring lunch by. Our plan is to set up a website with calendars so that friends and volunteers can check the calendar and sign up for times available when they would like to visit and help Dad with his care.
Life is so much better when it's organized and you have a team that you can work together with towards the same positive cause.
Monday, March 26, 2007
Adjusting To Life At "Home"
Monday, 26 March 2007
After going to Costco over the weekend and stocking up on groceries and medical supplies for the week, we're transitioning into full-time care of Dad. It's a good thing I've been on Spring Break last week and this week. Yesterday, Jay piggy-backed and carried him up the 85 stairs from our house to the car, and off we all went to Aunty Rose's 90th birthday party. It was a nice buffet with distant cousins and relatives. Chris got to meet the extended Mau side of the family, and they all congratulated us on our recent marriage and my little growing belly. I even ran into friends from Seattle who happened to be in the same hotel and noticed me at the top of the escalator. Random! My happy hour buddy Gregg and his wife Jenn are also expecting another baby the day before we're due. It was cool to, literally, run into them.
This afternoon, Dad and I worked on the crossword puzzle while watching Oprah...His friends, Bob and Leo (my dentist actually, and his good friends from college days), brought us Hawaiian food for lunch and hung out for a couple hours, watching CNN. I did two loads of laundry. Uncle Gary came down to help me bathe Dad in the afternoon sun. Now, part of my bathing routine is putting on bug spray so that I don't get eaten alive by mosquitoes like I have the past couple days of bathing. We also took care of my dad's financial business and we'll have to figure out how to have him sign his name.
I arranged for a home health aide from Hospice to come on Tuesdays and Thursdays to sponge bathe dad although it'll be in the mid day, not his normal routine. We'll see how it goes. He still prefers a head-to-toe shower of course. But, we'll just try this out. I haven't been able to do my report cards or taxes or work on anything of my own yet. Now, a Hospice volunteer, Paul (who decided to become a volunteer after he had a relative in hospice) is here from 6 - 9 pm tonight. So, hopefully I'll be able to get some of my report cards done. I had to explain to Paul what ALS is, as he thought my dad didn't have his mental faculties. I showed him old photos of Dad in his athletic days, the sports article written about him in the newspaper last year, and most importantly, how ALS is a disease which never affects your mental capacity, but merely drains the patients' muscles and ability to move, and eventually speak and breathe. Paul and Dad watched 'Bizarre Foods' on the Travel Channel, read the newspaper, and he fed Dad dinner. The volunteers are all nice and generous with their time. Dad let Paul go an hour early (wait, did I okay that, although I think he only let him go because he had to pee?!) and Paul said he could come on other days sometimes if Mondays don't work.
I told Chris this is practice for sure for getting ready for a baby in the house. As with my dad, I always have to be on-call 24/7! Another volunteer, Phil, comes on Saturday mornings and has offered to scan Dad's pictures onto a cd. He has been visiting Dad for awhile now, so he knows the drill with flipping the paper for Dad and even will pee him with the urinal if necessary. It's nice to have volunteers that will sit with Dad and keep him company so that perhaps Chris and I can have some private time together or I can get my own chores or work done (even though I do find my maternal instinct working if I'm still sitting in the same room to make sure everything is okay...or perhaps that's my teacher wandering eye multi-tasking like I do at work?).
What's nice about Dad being here at home is that I get to share with him my growing belly. Although I've put his hand on my tummy when 'Junior' is kicking, he has a hard time feeling it (but, that's okay, because Chris has a hard time feeling the pitter-patter little kicks too, after all the little guy is only 3/4 of a pound in weight at this point in time.)
Sunday, March 25, 2007
Watch "Frontline" on April 3rd!!
Award-Winning Documentary About A
Family’s Response To ALS Now On DVD
TUCSON, Ariz., March 16, 2007 — “So Much So Fast”, a new film by Oscar-nominated directors Steven Ascher and Jeanne Jordan, focuses on Stephen Heywood -- a designer and builder who learned at age 29 that he had amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease).
MDA has led the fight against ALS for more than 50 years.
“As we approach ALS Awareness Month this May, our hope is that people will see this film and come away with a greater understanding and appreciation of the devastating consequences this disease has on the lives of everyone it touches,” MDA President & CEO Jerry Weinberg said.
The documentary premiered at the 2006 Sundance Film Festival and was released to critical and audience acclaim in theaters nationwide. Critics have called it “triumphant,” “gripping, intimate and dramatic” and “filled with unexpected humor.”
It will be aired on the PBS program “Frontline” on April 3.
Filmmakers Ascher and Jordan, a husband-and-wife team, first encountered ALS when Jeanne’s mother was diagnosed with it. Heywood’s story provided them the opportunity to examine the ways in which ALS takes hold of the lives of those who have it and their families.
Obsessed with finding a cure, Heywood’s brother James started the ALS Therapy Development Foundation, a nonprofit, fast-track research program dedicated to developing treatments for ALS in as short a time as possible.
In January, the foundation joined with MDA in an historic $36 million partnership, creating the largest ALS drug discovery project to date, called the ALS Therapy Development Institute.
“So Much So Fast,” which runs 87 minutes, is available at a special price of $24.95 for those
Family’s Response To ALS Now On DVD
TUCSON, Ariz., March 16, 2007 — “So Much So Fast”, a new film by Oscar-nominated directors Steven Ascher and Jeanne Jordan, focuses on Stephen Heywood -- a designer and builder who learned at age 29 that he had amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease).
MDA has led the fight against ALS for more than 50 years.
“As we approach ALS Awareness Month this May, our hope is that people will see this film and come away with a greater understanding and appreciation of the devastating consequences this disease has on the lives of everyone it touches,” MDA President & CEO Jerry Weinberg said.
The documentary premiered at the 2006 Sundance Film Festival and was released to critical and audience acclaim in theaters nationwide. Critics have called it “triumphant,” “gripping, intimate and dramatic” and “filled with unexpected humor.”
It will be aired on the PBS program “Frontline” on April 3.
Filmmakers Ascher and Jordan, a husband-and-wife team, first encountered ALS when Jeanne’s mother was diagnosed with it. Heywood’s story provided them the opportunity to examine the ways in which ALS takes hold of the lives of those who have it and their families.
Obsessed with finding a cure, Heywood’s brother James started the ALS Therapy Development Foundation, a nonprofit, fast-track research program dedicated to developing treatments for ALS in as short a time as possible.
In January, the foundation joined with MDA in an historic $36 million partnership, creating the largest ALS drug discovery project to date, called the ALS Therapy Development Institute.
“So Much So Fast,” which runs 87 minutes, is available at a special price of $24.95 for those
Friday, March 23, 2007
Come Visit Dad!
Friday, 23 March 2007
Dad would like to see you, and we welcome your visits and any assistance you may be able to offer him and the family to provide respite for his care from time to time.
Please let us know if you are interested in any of the following...
* MEALS (either cooking for him, picking up prepared foods, feeding him, or eating with him)
* SOCIAL VISITS (talk story, watch TV - sports, movies, Oprah, etc., do crossword puzzles with him, help him flip the newspaper as he likes to read it daily)
* CREATIVE PROJECTS (help organize John's two Xerox boxes worth of photos into an album ...anyone that knows Dad knows he loved to take pictures!..He needs help labeling them and putting them in order while he can still tell us who is in the picture and where it was taken.)
* LIGHT HOUSEKEEPING and ERRANDS (Now, with my pregnancy, I really cannot lift a lot of things and carry heavy things up and down our 85 stairs.)
DAYTIME, EVENINGS, and WEEKENDS anyone is welcome to see John "up the heights"!
If interested, or if you just want to drop by to say hi to John, please contact his children Jason (jmau808@yahoo.com) 358-4435 or Tanya (tanya_mau@hotmail.com) 375-5414.
4308 Sierra Drive (about half-way up Wilhelmina Rise...Please call ahead for specific directions...and remember, it's not the first house, not the second house, but the third house down 85 stairs from the driveway!) You can also call the house phone at 737-2301.
Mahalo! And, he hopes to see you soon!
Thursday, March 22, 2007
A Spring Break Full of Changes
Thursday, 22 March 2007
After finishing a lot of our spring cleaning last weekend (cleaning the screens in the windows and dusty, dusty rooms), we had to make room again (another excuse to clean the living room in about one hour's time)for my Dad and all of his medical supplies. Yes, he's here at our house now, and it should be a permanent move. My brother and I can now manage his care how we want, with his best interests in mind, making sure he is comfortable and can have his friends visit whenever they want.
Although bathing (which took place on the lanai today with the dog at his heels and a race to finish before the cold rain fell) is not as comfortable as a roll-in shower, and now he is not as accessible to go places (as my brother already had to carry him down on his back....down our 85 stairs from car door to front door...and I don't think he will be carrying him back and forth unless absolutely necessary), his brothers are close by and hung out at the house today, and he gets to be in his own house....the house he raised us in, the stairs which he built with his own two hands (which, by the way, he had no problem commenting to us on which stairs needed to be fixed as he stared at them from Jay's shoulder as he came down the stairs yesterday), and the yard which....well, let's just say the yard is not in its landscaped condition it used to be when he lived here five years ago. But, it's still there.
The only thing that sucks right now is that I'm dealing with an awful cold that has me peeing in my pants everytime I sneeze and cough (a symptom of being pregnant, not being incontinent). Also, I can't really lift and help out with heavy things, although I sure was exhausted yesterday when we had to move all of Dad's necessary belongings and things up and down to our house.
It'll be good though. It's good to have Dad home.
After finishing a lot of our spring cleaning last weekend (cleaning the screens in the windows and dusty, dusty rooms), we had to make room again (another excuse to clean the living room in about one hour's time)for my Dad and all of his medical supplies. Yes, he's here at our house now, and it should be a permanent move. My brother and I can now manage his care how we want, with his best interests in mind, making sure he is comfortable and can have his friends visit whenever they want.
Although bathing (which took place on the lanai today with the dog at his heels and a race to finish before the cold rain fell) is not as comfortable as a roll-in shower, and now he is not as accessible to go places (as my brother already had to carry him down on his back....down our 85 stairs from car door to front door...and I don't think he will be carrying him back and forth unless absolutely necessary), his brothers are close by and hung out at the house today, and he gets to be in his own house....the house he raised us in, the stairs which he built with his own two hands (which, by the way, he had no problem commenting to us on which stairs needed to be fixed as he stared at them from Jay's shoulder as he came down the stairs yesterday), and the yard which....well, let's just say the yard is not in its landscaped condition it used to be when he lived here five years ago. But, it's still there.
The only thing that sucks right now is that I'm dealing with an awful cold that has me peeing in my pants everytime I sneeze and cough (a symptom of being pregnant, not being incontinent). Also, I can't really lift and help out with heavy things, although I sure was exhausted yesterday when we had to move all of Dad's necessary belongings and things up and down to our house.
It'll be good though. It's good to have Dad home.
Friday, March 16, 2007
Hospice? Or Home?
Friday, 16 March 2007
Figuring out where you want to spend your last remaining days is never an easy task.
My stepmom wants to re-evaluate our current caregiving schedule and situation. She is burnt out physically and emotionally taking care of my dad. The hospice respite we had Dad in for one week was fine, except that we can only access that service every 30 days.
Dad says that he feels like he is sleeping a lot more lately, which could mean he is lacking oxygen, which could mean that the bi-pap machine is not working as effectively as it should. There is one more level it can be pumped up to, which in essence would force more air into him. But, then after that...that would be it. He would need to survive on that until he is no longer able to.
For long-term stays, hospice will consider each patient on a case by case basis. Although they don't typically accept the bi-pap machine, they do see it as comfort care and can re-evaluate him if he is ready to consider long-term care with hospice as an option. Dad talked to my brother and I today about his options. If my stepmom can no longer care for him, then he will either come home with us or go into a hospice. We all know that he prefers to die at home, not in a hospice facility. Our door is always open, but it is logistically difficult, since we live on the side of a mountain, 85 stairs from the car and driveway. It would mean my brother would have to carry my 160 pound, 6 foot one dad down the stairs. It would also mean that Dad would pretty much be stuck at our house 24/7 and not be able to leave the house to go out to restaurants or to watch his stepdaughter play varsity basketball. And it would mean that my brother and I would be responsible for his care, 24/7.
This week, Dad wanted us to send away for price lists for mortuary fees. We've always known he wants to be cremated. He joked before (or perhaps he wasn't joking) that when he gets cremated, we can each take some; Jay can throw some on the golf courses and in the ocean, and then I can keep some for myself. We got the first list of prices today, and I joked with Dad that the cremation container costs range from cardboard ones for $75 to cherry ones for over $3,000. He said, "Well, I'm worth it aren't I?". I replied, jokingly of course, "How about a Rubbermaid tupperware I can get from home for free-99?"
Even though we have to confront difficult issues during difficult times, it's important that we do, and that we know what Dad wants. We are fortunate that Dad has all of his mental faculties intact so that he is able to communicate to us what he really wants.
Still, there are many implications for any decision that we make as a family. In any case, it is not an easy task.
Figuring out where you want to spend your last remaining days is never an easy task.
My stepmom wants to re-evaluate our current caregiving schedule and situation. She is burnt out physically and emotionally taking care of my dad. The hospice respite we had Dad in for one week was fine, except that we can only access that service every 30 days.
Dad says that he feels like he is sleeping a lot more lately, which could mean he is lacking oxygen, which could mean that the bi-pap machine is not working as effectively as it should. There is one more level it can be pumped up to, which in essence would force more air into him. But, then after that...that would be it. He would need to survive on that until he is no longer able to.
For long-term stays, hospice will consider each patient on a case by case basis. Although they don't typically accept the bi-pap machine, they do see it as comfort care and can re-evaluate him if he is ready to consider long-term care with hospice as an option. Dad talked to my brother and I today about his options. If my stepmom can no longer care for him, then he will either come home with us or go into a hospice. We all know that he prefers to die at home, not in a hospice facility. Our door is always open, but it is logistically difficult, since we live on the side of a mountain, 85 stairs from the car and driveway. It would mean my brother would have to carry my 160 pound, 6 foot one dad down the stairs. It would also mean that Dad would pretty much be stuck at our house 24/7 and not be able to leave the house to go out to restaurants or to watch his stepdaughter play varsity basketball. And it would mean that my brother and I would be responsible for his care, 24/7.
This week, Dad wanted us to send away for price lists for mortuary fees. We've always known he wants to be cremated. He joked before (or perhaps he wasn't joking) that when he gets cremated, we can each take some; Jay can throw some on the golf courses and in the ocean, and then I can keep some for myself. We got the first list of prices today, and I joked with Dad that the cremation container costs range from cardboard ones for $75 to cherry ones for over $3,000. He said, "Well, I'm worth it aren't I?". I replied, jokingly of course, "How about a Rubbermaid tupperware I can get from home for free-99?"
Even though we have to confront difficult issues during difficult times, it's important that we do, and that we know what Dad wants. We are fortunate that Dad has all of his mental faculties intact so that he is able to communicate to us what he really wants.
Still, there are many implications for any decision that we make as a family. In any case, it is not an easy task.
The Toileting/Bathing Routine
Although it has changed in little details from him reading the paper and looking at the crossword puzzle while on the can, to now needing almost two people to efficiently move everything in time, this is pretty much the toileting and bathing routine we go through on a daily basis. Believe me, there is a reason for the madness....And, if you miss a step, Dad will tell you!
Toilet (Bowel Movement) Procedure (Around 4:30 - 5:00 pm Daily) Make sure he has had his warm mug of Metamucil about 1 hour prior to toileting and that he has been on the bi-pap for at least an hour so that he has enough energy to enjoy the shower procedure.
1. Recline the chair all the way down. Take shorts off by lifting knee up one leg at a time.
2. Put commode chair perpendicular to the recliner chair, leaning against bookshelf, and put the brakes on the front. Transfer him to shower commode chair.
3. Make sure his torso is straight, then recline chair back a little before you push him to the bathroom. Make sure his head is in head rest. Make sure toilet seat is lifted up.
4. If it’s hot out, set up small fan on the edge of the sink, so air is blowing on him. Otherwise, just pull away the curtain away from the window and open the window behind him.
5. Make sure he is far back on the chair, push chair back to the back of the toilet. Put brakes on.
6. Set up bi-pap machine on the stool (put stool in corner of shower wall/sink) and put it on him immediately and press white bar to turn on. You may need to hold his head back and watch/listen to the mask to make sure he is getting air efficiently.
7. Push stomach in slow, rhythmic motions with the base of two palms.
8. When finished, release brakes and pull commode away from the toilet. Wipe okole and flush toilet.
Shower Procedure (Immediately following toilet procedure)
1. Roll into shower backwards so head is near the faucet side. Make sure the right arm of the chair is about a few inches away from the shower wall.
2. Tilt back commode chair a little bit.
3. Remove feet stands of chair and place outside in the laundry basket. Feet will probably be suspended a bit from the ground.
4. Turn water on so it is warm, but not too hot. Check the water temperature first, then put on his legs to check with him. Adjust the temperature as necessary. When he okays the temperature, wet hair first. Only use water to a minimum. Try not to drown his face. Leave water on and put shower head on his lap so it is spraying on his stomach.
** IMPORTANT: Time is of the essence as he cannot be without the bi-pap for long! Use this as a rule of thumb (as a maximum!): 1) Rinse hair – 5 seconds
2) Scrub, scratch scalp and wash hair - 10 sec
3) Rinse off shampoo & wipe excess water from face – 5 seconds
4) Soap cloth and wash face and scrub behind ears – 5 seconds
5) Rinse off soap from face – 5 seconds
6) Dry face and hair and put bi-pap mask on and turn on – 10 seconds
5. Put a quarter-sized amount of Heads & Shoulders shampoo and scrub hair, massage, and scratch the sides and top of head. When he okays it, rinse off hair. Again, try not to drown face by washing the sides first, making sure you rinse ears and rinsing hair down the back.
6. Warn him when you are going to rinse his face. Only rinse for about 2 seconds! Soap the pink towel and scrub his face. Make sure to scrub behind the ears. Rub lightly over any sores on forehead and nose and eyes.
7. Warn him when you are going to rinse his face. Tell him when you are rinsing the sides first, then the front. Make sure to only rinse for 2 seconds at a time. Wipe the makapiapia from his eyes. He may want water in his mouth to drink.
8. Rinse entire body with water and then turn the water off and put shower head on the ground.
9. Soap pink towel and scrub underarms and arms and hands/fingers.
10. Lean him forward from the shoulders and scrub back and neck.
11. Scrub thighs and under each thigh.
12. Scrub between legs and okole.
13. Scrub feet and under feet.
14. Turn water back on and adjust temperature. Rinse off entire body completely. Make sure you rinse under the chair to get okole and lift each thigh to rinse underneath.
15. Shave if he wants. Use the shower gel and razor to shave cheeks, chin, and neck. Rinse as necessary.
16. Use towel from the top left rack to dry hair and face first. Dry off upper body, arms and chest, then lean body forward to dry off back and lay towel behind back, so he is sitting against it when you lean him back on the chair.
17. Use other towel from the bottom left rack to spot dry on the legs. Lay towel on his lap and pull commode chair out of the shower and onto the mat so he is facing the door. Tilt chair back as necessary for comfort.
18. Finish drying off the rest of the body. Make sure to dry off between the legs and under thighs. Dry off moustache to finish.
19. Warn him first that you are going to take off the bi-pap to clean his nose. Use rolled up toilet paper to clean inside of both ear canals and ear wax in ears. Make sure not to poke too deep inside ear.
20. Coil up toilet paper and clean inside of each nostril until clear. Promptly put mask back on and turn on bi-pap.
21. Dry off the commode chair by using rag or shirt from laundry basket.
22. Ask him if he’s ready. Remove the bi-pap, turn machine off and bring it back and set up near his recliner.
23. Tilt commode chair back and go backwards into the living room.
24. Transfer him from shower commode chair onto recliner chair. Make sure there is a pillow on the chair for neck support. Support back of neck during transferring to the chair.
25. Move shower commode chair and Recline chair all the way back. Put bi-pap on if he needs it. Otherwise, put white v-neck t-shirt on him first since he is still sitting up. Then put bi-pap mask on and turn on machine.
26. Recline him so he is laying down. Get boxer shorts and put them on him. Make sure they are up on the back by lifting one leg up and bending at the knee, then putting his same arm on his stomach and pushing his shoulder and knee over. Put lotion on his excema on the left cheek of his okole.
27. Offer a drink of water.
28. Reseat him by wiggling him back or lifting him and sitting him back all the way so he is upright in the chair.
29. Make sure chair is reclined all the way and make sure pillow behind head is comfortable.
30. Fix his arms and hands so that they are either on the arms of the chair, fingers flat, and/or arms are by his side with thumbs up. (He will tell you what he wants.)
* Around 5:30 pm daily, he takes 1 Rilutek pill with water. Make sure he is slightly sitting up when drinking water.
Thursday, March 15, 2007
Wednesday, March 14, 2007
Dave visits Dad
Wednesday, 14 March 2007
You know a true friend when.......
"Uncle" Dave, who took pictures at my wedding, came over to drop off "The Secret" (the new controversial book/seminar/phenomenon recently featured on Oprah, Larry King, and many news stations for its positive thinking...If you think good thoughts, you can get what you want. Some argue that it's dangerous for people who think they may not get a serious illness or get better from one if they only think good thoughts. What if they DO get sick? They may feel guilty for thinking wrongly and get pushed into negativity instead. Dad has yet to watch the DVDs Dave copied for him.)for Dad. Dave shared his love of photography with dad by doing an impromptu photo shoot of sorts, taking black and white pictures as we continued with our routine of things: drinking water, Dad navigating the internet with his stick mouse in the mouth, and toileting and bathing. He wanted merely to document pictures for dad and the family.
Most importantly though, Dave talked to Dad for over an hour, about everything from politics to family life to living with ALS to not taking things for granted. He said that he hopes his own kids will take care of him as well as my brother and I do if he ever gets stricken with an illness like Dad's. Dad reassured him that they would, for "They have to learn that life comes with good and bad. You have to know how to deal with the bad, too." Dad looked at me when he said that and told me to remember that statement for his eulogy.
Before he left, Dad told Dave that he loved him, and when I looked at him, he had watery eyes. After I wiped his eyes, Dad told me that he always knew that Dave would be a good friend. It was 40 years ago that they first met, when Dad was designated as Dave's mentor and Dave was a new pledge for the college fraternity my dad belonged to, Peng Hui. Dad told me how they both shared similar values, outlooks on life, and the love of photography. They listened to each other, and Dad always knew that he would have Dave's support throughout his life.
You can't find a better friend than that. Thanks for everything, Uncle Dave!
Saturday, March 10, 2007
Another One Bites The Dust
Saturday, 10 March 2007
My brother's friend came to get the pig around 10:30 am after his kids' soccer games. He had to lasso it first before disabling it and carrying it upstairs. It was about 60 to 65 pounds, bigger than the last one. We had to hold our dog Kaliko back as she was barking a lot when Mitch carried it up. He said we could have meat if we want, as he would debone it for us. He still has some from the last pig. My dad said he would like to try some. And, like my cousin said, I guess it's organic. The photos tell all.
My brother's friend came to get the pig around 10:30 am after his kids' soccer games. He had to lasso it first before disabling it and carrying it upstairs. It was about 60 to 65 pounds, bigger than the last one. We had to hold our dog Kaliko back as she was barking a lot when Mitch carried it up. He said we could have meat if we want, as he would debone it for us. He still has some from the last pig. My dad said he would like to try some. And, like my cousin said, I guess it's organic. The photos tell all.
We Caught Another Pig!
Saturday, 10 March 2007
Last weekend, we caught a pig with the snare trap my brother's friend set up in our yard. It was about 40 to 50 pounds, and his friend had to come and kill it before carrying it up our 85 stairs to the driveway, leaving behind a trail of blood all the way up. None of us were home the last time, so my brother, his girlfriend Shelly and Chris and I were all upset that we missed the excitement (after all, these pigs have been quite a nuisance over the past few months.)
Last night, looks like another one got caught in the snare trap, perhaps around midnight. It's 10 am now, and although it struggles every now and then in the bushes, it's still stuck. After the hard rains last night, Mitch may need some kleets to climb down the mountain and get it without slipping and sliding in the mud. His sons had a soccer game, so he'll come afterwards to get it. He said we could keep it, but us "city folk" don't know how to kill, clean, and butcher a wild pig ourselves, so that's okay, although it would be nice for some kalua pig. But, we'll just stand by for the photo op. I've been up since 8 am taking pictures of it and hoping it doesn't get loose. It played dead at one point, gasping for air about ten times, and then stopping and laying down. But, after my uncle went to go take a closer look at it, the pig got agitated again and moved a little farther down the hill. He thinks this one is meatier than the last one. We'll see how it all goes down. The last time, he had to throw rocks at it before slitting its throat. Should be interesting. Our dogs are going to go crazy. So, since we missed it the last time, I know where I'll be sticking around this morning. Can't miss the action!
Tuesday, March 06, 2007
News Alert
Last week, as I was teaching my second graders, I must have been rubbing my belly from indigestion.
My inquisitive student "A" asked me: "Do you have a baby in there or something?"
Me: "Why yes I do."
A: "Oh, well it's a good thing that you got married huh!"
Gee, kids can be so blunt! But, yes it's true, and kids often can tell those kinds of things. Nothing is secret or can be kept secret with them, that's for sure!
Weird thing is, the night of my wedding, my friend Linh had gone to her aunt's house for dinner. Her aunt is a famous local psychic here in Hawai'i. Aunty Lanh told her that she went to a friend's wedding this morning....a friend that is pregnant with a baby boy. Strange thing is, my friend Linh never even knew that I was pregnant and had to call my friend Miya to confirm that fact. Plus, I have never even met Aunty Lanh before, but have heard a lot of stories about how accurate she is from friends and family alike. She also said that my father is very sick, has "water in the lungs", but may wait and hold on to see the baby. Really amazing. So.....I waited until my ultrasound appointment this past Friday to find out the big news.
Well, I am due August 2nd, and the big ultrasound last week revealed that it is a baby boy we're expecting. And, the first thing Chris said (well, after a cheerful "Woo hoo!") was, "Wow....she was right!"
I have to take it easy this week because I the ultrasound also showed that I may be prone to pre-term labor. So, no exercising..........Geez. Just when I was getting back into Bikram yoga again!
Well, now I have no excuse for not cleaning and organizing the house!
And organizing photos as well. If you haven't checked out our wedding photos, you can view them at www.tanyaandchris.shutterfly.com for a chronological album compilation of wedding events.
Enjoy! (and yes, now you know why there haven't been as frequent a post on the blog as usual...I've been a little (tired and) busy!)
My inquisitive student "A" asked me: "Do you have a baby in there or something?"
Me: "Why yes I do."
A: "Oh, well it's a good thing that you got married huh!"
Gee, kids can be so blunt! But, yes it's true, and kids often can tell those kinds of things. Nothing is secret or can be kept secret with them, that's for sure!
Weird thing is, the night of my wedding, my friend Linh had gone to her aunt's house for dinner. Her aunt is a famous local psychic here in Hawai'i. Aunty Lanh told her that she went to a friend's wedding this morning....a friend that is pregnant with a baby boy. Strange thing is, my friend Linh never even knew that I was pregnant and had to call my friend Miya to confirm that fact. Plus, I have never even met Aunty Lanh before, but have heard a lot of stories about how accurate she is from friends and family alike. She also said that my father is very sick, has "water in the lungs", but may wait and hold on to see the baby. Really amazing. So.....I waited until my ultrasound appointment this past Friday to find out the big news.
Well, I am due August 2nd, and the big ultrasound last week revealed that it is a baby boy we're expecting. And, the first thing Chris said (well, after a cheerful "Woo hoo!") was, "Wow....she was right!"
I have to take it easy this week because I the ultrasound also showed that I may be prone to pre-term labor. So, no exercising..........Geez. Just when I was getting back into Bikram yoga again!
Well, now I have no excuse for not cleaning and organizing the house!
And organizing photos as well. If you haven't checked out our wedding photos, you can view them at www.tanyaandchris.shutterfly.com for a chronological album compilation of wedding events.
Enjoy! (and yes, now you know why there haven't been as frequent a post on the blog as usual...I've been a little (tired and) busy!)
Adjusting Others To Routine
Tuesday, 6 March 2007
Picked up some lunch and went to visit Dad at the hospice home. By the time I got there, Uncle Gary and Uncle Ray had just left from visiting and bringing some sushi for lunch for Dad. I stayed until the evening, often adjusting Dad's bi-pap machine and trying to clear his nose of mucus and helping him to surf the internet and write emails when the stick control for his mouth would get frustrating.
When it came time to bathe and toilet, Dad wanted to be flipped over on his stomach so that he could spit out his mucus stuck in his throat. But, he got frustrated with me and the nurses as he couldn't communicate his needs clearly. Throughout the sponge bath, he continued to remind me about how I should know and should have told them. Yes and no. I don't want to step on their toes either. They are nurses after all. They should have an idea of what to do to take care of their patients. It's their job.
ALS can be a frustrating disease though. Not only for the patient, but for the caregiver as well. My dad's mind is fully functioning and he knows exactly what he wants. He just cannot physically do what he wants to. So, he tends to become very bossy (but he probably was before the disease too); though I can also understand that when you have lost all control of your body and your independence, if all you can control is your voice and your mind, it tends to lead you to use that to control others. It's a pretty common trend among patients who have progressive ALS, and can you blame them? Caring for him over the past year, I've noticed that if we're not actively "doing" something (crossword puzzle, reading the paper, etc.), he will be more demanding and find things for us to do (fix his mask, move his legs, change the channel on the TV, etc.)....It's almost as if more interaction and stimulation is better, which makes sense. I mean, who wants to sit in the same position in the same place all day and be bored with nothing to do??
After he was sponge bathed and situated back in bed, he "let" me go to get some fresh air, and the nurses invited me to eat some food they had barbequed in the backyard. The nurse Marina, who worked closely with my dad today, reminded me that a lot of times the illness makes patients act as they do, frustrated, etc. It was reassuring to hear. The hospice staff was having a monthly meeting with all of their nurses and volunteers. I got to meet one of the family members of a patient. She is here from Boston, visiting her sister who has been in the hospice home with an incurable lung cancer. We talked about our loved ones' illnesses and how they are both young (her sister just turned 58) and how they are both frustrated with their inability to communicate clearly (as her sister's cancer has left her without a voice).
It is sad, yet it is nice to be in a "home" vs. a hospital. It doesn't feel like there are sick people all around. The nurse put a bird feeder outside Dad's window so that he can watch the different birds come by. We brought Dad's telephone from home so now he has a speaker phone he can talk on when people call. Although I'm still coming here everyday after work and perhaps it's not quite respite for me, it's kind of neat to be in a different atmosphere (and an air conditioned one at that). Besides, I have been restricted from exercise this week and have to take it easy, so it's not that bad to come and visit Dad and meet new people.
After I fed Dad dinner (he enjoyed the salmon and mashed potatoes and broccoli they had made for him), I showed the nurse on the next shift how to adjust his mask and when she asked about his pills, I said, "Don't worry, he'll tell you what he wants or needs." Then, the 'third shift' showed up....my dad's friends Frank and Sharon and my stepmom Bernice. So, I left around 8:30 pm and headed home to the husband.
Picked up some lunch and went to visit Dad at the hospice home. By the time I got there, Uncle Gary and Uncle Ray had just left from visiting and bringing some sushi for lunch for Dad. I stayed until the evening, often adjusting Dad's bi-pap machine and trying to clear his nose of mucus and helping him to surf the internet and write emails when the stick control for his mouth would get frustrating.
When it came time to bathe and toilet, Dad wanted to be flipped over on his stomach so that he could spit out his mucus stuck in his throat. But, he got frustrated with me and the nurses as he couldn't communicate his needs clearly. Throughout the sponge bath, he continued to remind me about how I should know and should have told them. Yes and no. I don't want to step on their toes either. They are nurses after all. They should have an idea of what to do to take care of their patients. It's their job.
ALS can be a frustrating disease though. Not only for the patient, but for the caregiver as well. My dad's mind is fully functioning and he knows exactly what he wants. He just cannot physically do what he wants to. So, he tends to become very bossy (but he probably was before the disease too); though I can also understand that when you have lost all control of your body and your independence, if all you can control is your voice and your mind, it tends to lead you to use that to control others. It's a pretty common trend among patients who have progressive ALS, and can you blame them? Caring for him over the past year, I've noticed that if we're not actively "doing" something (crossword puzzle, reading the paper, etc.), he will be more demanding and find things for us to do (fix his mask, move his legs, change the channel on the TV, etc.)....It's almost as if more interaction and stimulation is better, which makes sense. I mean, who wants to sit in the same position in the same place all day and be bored with nothing to do??
After he was sponge bathed and situated back in bed, he "let" me go to get some fresh air, and the nurses invited me to eat some food they had barbequed in the backyard. The nurse Marina, who worked closely with my dad today, reminded me that a lot of times the illness makes patients act as they do, frustrated, etc. It was reassuring to hear. The hospice staff was having a monthly meeting with all of their nurses and volunteers. I got to meet one of the family members of a patient. She is here from Boston, visiting her sister who has been in the hospice home with an incurable lung cancer. We talked about our loved ones' illnesses and how they are both young (her sister just turned 58) and how they are both frustrated with their inability to communicate clearly (as her sister's cancer has left her without a voice).
It is sad, yet it is nice to be in a "home" vs. a hospital. It doesn't feel like there are sick people all around. The nurse put a bird feeder outside Dad's window so that he can watch the different birds come by. We brought Dad's telephone from home so now he has a speaker phone he can talk on when people call. Although I'm still coming here everyday after work and perhaps it's not quite respite for me, it's kind of neat to be in a different atmosphere (and an air conditioned one at that). Besides, I have been restricted from exercise this week and have to take it easy, so it's not that bad to come and visit Dad and meet new people.
After I fed Dad dinner (he enjoyed the salmon and mashed potatoes and broccoli they had made for him), I showed the nurse on the next shift how to adjust his mask and when she asked about his pills, I said, "Don't worry, he'll tell you what he wants or needs." Then, the 'third shift' showed up....my dad's friends Frank and Sharon and my stepmom Bernice. So, I left around 8:30 pm and headed home to the husband.
Monday, March 05, 2007
At Hospice in Kailua
Monday, 5 March 2007
Today, my brother and stepmom dropped my dad off at a hospice home in Kailua (Enchanted Lakes area). A bed opened up in this five bedroom house, and my dad came here to give my stepmom respite. He will be here all week, and then go back home for the weekend. They spent 4 hours orienting the nurses with my dad's care. They had to show them how to lift and transfer him, how to operate the bi-pap breathing machine, and tell them his basic routine as far as bathing and toileting goes. I came after running errands (getting copies of the marriage certificate and changing the title from my Uncle Ray's Ford Explorer to my name). Dad was sitting in the recliner watching ESPN. There are two nurses on duty. The patient next door to my dad has been here for awhile, as she has photos and things all over the room. Dad's room just looks like a hospital room, with a view of the Ko'olau Mountains and the street. He likes the shades to be open so he can watch the neighborhood traffic go by.
I came just in time to show the nurses how to transfer him from the chair to the wheelchair and then to the commode. It took a long time though, and those extra minutes caused him to be very anxious and short of breath by the time they got him on the commode chair to toilet and sponge bathe. Noticing the expression on his face, I quickly got on the bi-pap mask and he was visibly upset. He explained to the nurses why he needs the air and why we need to move quickly and efficiently when transferring him.
I don't think the nurses are used to having to move people that are physically incapacitated. There are about two other patients here. Not sure what their illnesses are, perhaps cancer and such. Yet, my dad has still full control of his mind and has no problem telling them how he likes things, when he wants things, where he wants things, and how you should do them. The nurses admitted that this is a learning experience working with him. Although my dad may have to adjust to their cooking here, not having his remote control with the big buttons to change the channels, and getting used to having sponge baths instead of full showers daily, he has an air-conditioned room and the staff is really nice here.
Today, my brother and stepmom dropped my dad off at a hospice home in Kailua (Enchanted Lakes area). A bed opened up in this five bedroom house, and my dad came here to give my stepmom respite. He will be here all week, and then go back home for the weekend. They spent 4 hours orienting the nurses with my dad's care. They had to show them how to lift and transfer him, how to operate the bi-pap breathing machine, and tell them his basic routine as far as bathing and toileting goes. I came after running errands (getting copies of the marriage certificate and changing the title from my Uncle Ray's Ford Explorer to my name). Dad was sitting in the recliner watching ESPN. There are two nurses on duty. The patient next door to my dad has been here for awhile, as she has photos and things all over the room. Dad's room just looks like a hospital room, with a view of the Ko'olau Mountains and the street. He likes the shades to be open so he can watch the neighborhood traffic go by.
I came just in time to show the nurses how to transfer him from the chair to the wheelchair and then to the commode. It took a long time though, and those extra minutes caused him to be very anxious and short of breath by the time they got him on the commode chair to toilet and sponge bathe. Noticing the expression on his face, I quickly got on the bi-pap mask and he was visibly upset. He explained to the nurses why he needs the air and why we need to move quickly and efficiently when transferring him.
I don't think the nurses are used to having to move people that are physically incapacitated. There are about two other patients here. Not sure what their illnesses are, perhaps cancer and such. Yet, my dad has still full control of his mind and has no problem telling them how he likes things, when he wants things, where he wants things, and how you should do them. The nurses admitted that this is a learning experience working with him. Although my dad may have to adjust to their cooking here, not having his remote control with the big buttons to change the channels, and getting used to having sponge baths instead of full showers daily, he has an air-conditioned room and the staff is really nice here.
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