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.
Wednesday, April 18, 2007
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.
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.
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.
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.
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.
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.
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!
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.
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.
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.
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.
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!
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.
"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.
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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