It's times like this that having an engineer's mind is a terrible thing. Just when I think the post-mortem review of my caregiver performance has finished, I start all over again. The good. The bad. The difficult choices. It always ends with a big dose of humility. BR wasn't mine to save. My job wasn't to keep him alive. It was to give him the best life I could. And as much as I wish I could have done both, it wasn't meant to be.
So with that in mind, I'm saying goodbye to The Wheel of Fortuna. BR and I had an amazing life together. If what we shared here was of any use to you, well then the blog has served its purpose. I will be sticking around the MS blogging world to share in your joys and lend support when you are down. To those who have supported BR and me through this blog, you have my eternal gratitude.
Friday, May 21, 2010
Friday, May 14, 2010
Amsterdam Postcards
Wisconsin and Illinois Postcards
Rain and construction made for extended hours on the road
Breakfast with KimmieG and Mike
In front of their Christmas Tree home
Shut your ...
BBQ and commentary
Thursday, May 6, 2010
Riding the grief roller coaster
It started out with tears of joy. BR and I finally found a way to take away his pain that worked.
The week that followed was full of family and friends. Laughter through tears. I told Jordan she was welcome to stay, and we would work out the details later. She's now putting down roots, buying a scooter and looking for a job nearby. I'm glad for the continued company, but I worry that I'm being a big downer. There are times in the afternoon when I need to go to my room, close the door, and pretend to sleep. Sleep actually found me today, and I'm grateful for that.
Then there are times when I become exceptionally productive. Bought a new battery for the minivan and had the electrical system repaired. Had both mine and my neighbor's sprinkler system repaired. (I mowed over one of her tree bubblers.) Started an inventory of the leftover medical supplies. Looks like I'll have to donate them to a charity that sends them overseas due to US and Texas law.
And then I'll go to make dinner. "What do you... hmm. What do I want?" I have to admit, there is more cheese in the fridge than ever before.
The feelings I have right now are similar to those I had when I spent my junior year in college studying abroad in Paris. I was alone, with limited contact to my familiar support system. The difference is that now, BR is gone. Back then, I still had one more year of school back home. It hurt like hell, but I became a better person for it.
Even disabled, BR was the glue that held so many parts of my life together. Now that he's gone, I feel like I have to do it all myself. But I can't. That's the whole point of marriage -- two people coming together through love to do more than either one could do on their own. So right now, I'm focusing on the immediate. The bills are on autopilot. The people I see get first shot at a smile. Everything else may have to wait.
In this big-ass world, though, there are people important to me who were unable to attend the memorial service. So I've booked some travel to see them. First up is KimmieG and her husband Mike in Wisconsin. She was my one and only girlfriend in high school, and no matter how far apart we are, we will always be connected. Then I'll head to Chicago to see Joy. I met Joy while participating in the first Texas AIDS Ride -- a 7 day bicycle ride from Austin through Houston to Dallas. A similar bond formed. Next, I'll spend Mother's Day and the day after with my parents in Belvidere, Illinois. From all accounts, Mama is doing really well since being discharged from the nursing home.
From there, I'll be hopping a flight to Boston with a connection to Paris, followed by a train to Amsterdam. After some sleep, I'll be meeting Herrad and Richie for the first time in the flesh, and letting them know what their online friendship has meant to both BR and me. They are the only other couple we'd discovered who have lived through the same rapid progression of MS. Just knowing that we were not alone made all the difference during the difficult times.
Upon returning to Paris, I plan to sit by the Seine in the early morning, reading a book and conversing casually with passers by.
The week that followed was full of family and friends. Laughter through tears. I told Jordan she was welcome to stay, and we would work out the details later. She's now putting down roots, buying a scooter and looking for a job nearby. I'm glad for the continued company, but I worry that I'm being a big downer. There are times in the afternoon when I need to go to my room, close the door, and pretend to sleep. Sleep actually found me today, and I'm grateful for that.
Then there are times when I become exceptionally productive. Bought a new battery for the minivan and had the electrical system repaired. Had both mine and my neighbor's sprinkler system repaired. (I mowed over one of her tree bubblers.) Started an inventory of the leftover medical supplies. Looks like I'll have to donate them to a charity that sends them overseas due to US and Texas law.
And then I'll go to make dinner. "What do you... hmm. What do I want?" I have to admit, there is more cheese in the fridge than ever before.
The feelings I have right now are similar to those I had when I spent my junior year in college studying abroad in Paris. I was alone, with limited contact to my familiar support system. The difference is that now, BR is gone. Back then, I still had one more year of school back home. It hurt like hell, but I became a better person for it.
Even disabled, BR was the glue that held so many parts of my life together. Now that he's gone, I feel like I have to do it all myself. But I can't. That's the whole point of marriage -- two people coming together through love to do more than either one could do on their own. So right now, I'm focusing on the immediate. The bills are on autopilot. The people I see get first shot at a smile. Everything else may have to wait.
In this big-ass world, though, there are people important to me who were unable to attend the memorial service. So I've booked some travel to see them. First up is KimmieG and her husband Mike in Wisconsin. She was my one and only girlfriend in high school, and no matter how far apart we are, we will always be connected. Then I'll head to Chicago to see Joy. I met Joy while participating in the first Texas AIDS Ride -- a 7 day bicycle ride from Austin through Houston to Dallas. A similar bond formed. Next, I'll spend Mother's Day and the day after with my parents in Belvidere, Illinois. From all accounts, Mama is doing really well since being discharged from the nursing home.
From there, I'll be hopping a flight to Boston with a connection to Paris, followed by a train to Amsterdam. After some sleep, I'll be meeting Herrad and Richie for the first time in the flesh, and letting them know what their online friendship has meant to both BR and me. They are the only other couple we'd discovered who have lived through the same rapid progression of MS. Just knowing that we were not alone made all the difference during the difficult times.
Upon returning to Paris, I plan to sit by the Seine in the early morning, reading a book and conversing casually with passers by.
Wednesday, May 5, 2010
Bobrobert's Memorial Service
When I woke up the day after BR's death, I put iTunes on shuffle and hit play, figuring that if I didn't like the song, I could always skip it. The first song it played was Barry Manilow's One Voice. BR often told me how much he loved this song. I tried to sing along, but kept falling apart with tears. I promised myself I would find a way to work it into the memorial service.
A few days later, I decided on two additional pre-recorded songs. The first was Sandi Patty singing Upon This Rock. One of BR's secret guilty pleasures was inspirational religious music, and Sandi Patty was one of his favorite artists.
A few days later, I decided on two additional pre-recorded songs. The first was Sandi Patty singing Upon This Rock. One of BR's secret guilty pleasures was inspirational religious music, and Sandi Patty was one of his favorite artists.
If in a simple carpenterThe second song was To Me, a duet by Lee Greenwood and Barbara Mandrell. I know, not the Barbra most of you were expecting. BR's friend Fran Kinman introduced him to this song long before I met him. While we were dating, it became clear that this was the kind of love he was looking for, and wasn't going to settle for less.
You see the Son of God
If you would choose to lose
When you could win
If you would give your life away
For nothing in return
Then you are where
My kingdom will begin.
To meReverend Emile was lined up to do the service and scripture readings, and Gail and Mary Katherine to play the prelude and postlude organ and piano. And as the day of the service neared, I realized that I needed to deliver BR's eulogy myself. But no matter how hard I tried, the things I wrote just didn't do justice to the life we shared together. I decided to focus on how he was always able to build and maintain a circle of friends no matter where he was, and on how much he loved those friends. With my sister Cindy by my side for support, I spoke of the dinner parties on Martel Avenue, the ex-boyfriends, and the neighbors -- many of whom were present in the Gilliam United Methodist Church that Saturday.
You are the hand that I reach for
When I've lost my way
To me
You are the first star of evening
The sun that warms my day
Just as sure as
I'm sure there's a Heaven
This was meant to be
No road is too long
As long as you belong to me
To me
You are the truth I've been living
Girl, I believe in you
To me
You are the love I have looked for
My whole life through
Just as sure as
I'm sure there's a Heaven
This was meant to be
No road is too long
As long as you belong to me
Just as sure as
I'm sure there's a Heaven
This was meant to be
No road is too long
As long as you belong to me
If I had to pick a message to highlight from Bobrobert's life, it would be to hold the ones you love close and tight, and to never stop looking for people to love.The service closed with One Voice. I sang the first verse solo.
Just one voice, singing in the darknessMy family joined me for the second verse and bridge.
All it takes is one voice
Singing so they hear what's on your mind
And when you look around you'll find
There's more than one voiceThen we moved out into the congregation, hugging anyone who would have it. Standing in the aisles, we finished the song.
Singing in the darkness
Joining with your one voice
Each and every note another octave
Hands are joined and fears unlocked
If only one voice would start it on its own
We need just one voice, facing the unknown
And then that one voice would never be alone
It takes that one voice
It takes that one voice
Just one voice, singing in the darkness
All it takes is one voice
Shout it out and let it ring
Just one voice, it takes that one voice
And everyone will sing
Sunday, May 2, 2010
Celebrating Bobrobert
I'll be writing more about the wonderful memorial service and celebration when I return to Austin. But this was just too good not to share right away.
Hazel Vickery was BR's fifth grade social studies teacher. Back then, she taught BR how to dance the Charleston. At the memorial celebration, she entertained the crowd with a couple numbers at the piano. Guaranteed to bring a smile to your face.
Hazel Vickery was BR's fifth grade social studies teacher. Back then, she taught BR how to dance the Charleston. At the memorial celebration, she entertained the crowd with a couple numbers at the piano. Guaranteed to bring a smile to your face.
Friday, April 30, 2010
Belcher Postcards
These last two photos are of Dede's place of work. She is nicknamed the "Dumpster Diva" for her ability to rescue discarded items and beautify her surroundings.
Wednesday, April 28, 2010
Tuesday, April 27, 2010
BR's brother preaches about love
In this sermon, BR's older brother John talks about how important love is, and how he wishes he had been able to more fully open up his life and his heart to his brother.
John - Bobrobert was so incredibly proud of you and all you have accomplished. And although he sometimes said you were being "made for TV," he never once doubted that you loved him with all of your heart.
John - Bobrobert was so incredibly proud of you and all you have accomplished. And although he sometimes said you were being "made for TV," he never once doubted that you loved him with all of your heart.
Sanctuary | Apr 18 | 11:00 from White's Chapel UMC on Vimeo.
I get by with a little help from my friends
I wasn't there.
I had come home to shower and meet the housekeeper, and was getting ready to walk out the door when Chad and David came in and told me that BR had passed. I think he didn't want me to see it happen.
They drove Jordan and me back to Christopher House, where I was able to say my final goodbye to the body that loved, protected, and supported me for so many years. In his final moments, he was surrounded by people he loved, and I will be forever grateful to them for that. We packed up our stuff, and with one final sniff, we left it behind.
There is no way to fully describe how my friends and neighbors came together to give BR a transit night like no other. The days that followed have been full of laughter, tears, memories, food, and OCG (obsessive-compulsive gardening).
Today, the arrival of my sister Terri and her daughter Hope will mark the beginning of the run up to the memorial service on Saturday. I've started to pick out the music. Beth and Dede are coordinating the celebration that will follow. People who loved BR will be traveling from far and wide to Belcher to share their grief and memories.
It's the sharing of BR stories that is sustaining me right now. Most I've heard. Some are brand new to me. He's touched so many lives.
I had come home to shower and meet the housekeeper, and was getting ready to walk out the door when Chad and David came in and told me that BR had passed. I think he didn't want me to see it happen.
They drove Jordan and me back to Christopher House, where I was able to say my final goodbye to the body that loved, protected, and supported me for so many years. In his final moments, he was surrounded by people he loved, and I will be forever grateful to them for that. We packed up our stuff, and with one final sniff, we left it behind.
There is no way to fully describe how my friends and neighbors came together to give BR a transit night like no other. The days that followed have been full of laughter, tears, memories, food, and OCG (obsessive-compulsive gardening).
Today, the arrival of my sister Terri and her daughter Hope will mark the beginning of the run up to the memorial service on Saturday. I've started to pick out the music. Beth and Dede are coordinating the celebration that will follow. People who loved BR will be traveling from far and wide to Belcher to share their grief and memories.
It's the sharing of BR stories that is sustaining me right now. Most I've heard. Some are brand new to me. He's touched so many lives.
Sunday, April 25, 2010
Saturday, April 24, 2010
Bobrobert's Obituary
This will run on Friday in Dallas, Shreveport, Baton Rouge, San Francisco, and Austin.
Robert Ray McKellar passed away on Friday, April 23rd, 2010 at Christopher House in Austin, Texas from complications due to multiple sclerosis. He was 49 years old. A memorial service will be held at the Gilliam United Methodist Church, in Gilliam LA on Saturday, May 1st, 2010 at 2 PM. Officiating will be Reverend Emile Rousseau. A celebration of his life will follow at the home of Beth and Mickey McDade in Belcher LA.
Born on December 27th, 1960 in Shreveport, Louisiana to Diana Meares McKellar and Benny Ray McKellar, Bobrobert was raised in an extended family so full of love, it's frightening. An artist and educator by trade, he was also looked to as a trusted friend and counselor by those who were blessed to know him.
On October 10th, 1992, Steven Landherr joined Bobrobert in climbing a waterfall in the Appalachian Mountains, where they exchanged vows of eternal love and commitment between themselves and God. Their love for one another was ridiculously strong, weathering the unfathomable stresses and pain of MS as it quickly stole many of his abilities and eventually his life. During their time together, they lived in Dallas TX, Baton Rouge LA, San Francisco CA, and Austin TX.
Bobrobert is preceded in death by his father Benny McKellar, his maternal grandparents Doris Pearce and John J. Meares, and his paternal grandparents Leveda and Lyman McKellar. He is survived by his husband Steven Landherr of Austin TX, his mother Diana McKellar of Belcher LA, his brother John McKellar and wife Debra of Keller TX, his nephew Jay McKellar of Little Elm TX, his niece Chandler McKellar of Keller TX, his aunt and uncle Beth and Mickey McDade of Belcher LA, his cousins William McDade and wife Kelly of Belcher LA, Paige McDade and husband Frank Hendrick of Belcher LA, and Eric McDade and wife Hillary of Shreveport LA.
Memorials may be made to Equality Texas at http://tinyurl.com/eqtexasbr, or The McDade House, 1825 Warrington Place, Shreveport, LA 71101.
Friday, April 23, 2010
Thursday, April 22, 2010
The next phase
BR just got a beautiful batik scarf from Gina in some of the new colors she is using. Makes a lovely IV pole drape!
I didn't get much sleep last night. BR was very restless, but it was a different kind of restless. I could tell he wasn't in pain. The doctor told us this morning that she is pretty sure he is experiencing "terminal delirium" during which he gets restless, has conversations with people who aren't there, and can even try to get out of bed. So we have moved on from treating his pain, to treating the physiological issues that cause the dying brain to be restless. He will continue to receive his pain medications, but they won't be adjusted going forward.
I asked the doctor if we should be encouraging him to "let go and pass on." She said that at this point, he is probably hearing what we are saying, recognizing the voices, but not necessarily catching the intended meaning. She recommended that we tell him we wish he wasn't going, but it is OK that he does. She also recommended giving specifics about how we are going to continue on once he is gone. Not just that I will continue my relationship and care for his mother, but that I will call her regularly and still celebrate holidays with her. Basically, we should put ourselves in his helpless position and imagine the things we would want to hear.
He has received a lot of voice messages from friends that I play for him each evening. With each voice that he hears, he seems to recognize the person speaking and to enjoy what they say. I feel the same way about the comments left here. Thank you!
I didn't get much sleep last night. BR was very restless, but it was a different kind of restless. I could tell he wasn't in pain. The doctor told us this morning that she is pretty sure he is experiencing "terminal delirium" during which he gets restless, has conversations with people who aren't there, and can even try to get out of bed. So we have moved on from treating his pain, to treating the physiological issues that cause the dying brain to be restless. He will continue to receive his pain medications, but they won't be adjusted going forward.
I asked the doctor if we should be encouraging him to "let go and pass on." She said that at this point, he is probably hearing what we are saying, recognizing the voices, but not necessarily catching the intended meaning. She recommended that we tell him we wish he wasn't going, but it is OK that he does. She also recommended giving specifics about how we are going to continue on once he is gone. Not just that I will continue my relationship and care for his mother, but that I will call her regularly and still celebrate holidays with her. Basically, we should put ourselves in his helpless position and imagine the things we would want to hear.
He has received a lot of voice messages from friends that I play for him each evening. With each voice that he hears, he seems to recognize the person speaking and to enjoy what they say. I feel the same way about the comments left here. Thank you!
The business of dying
Sorry I'm not much for words right now.
Tuesday, BR had a bit of a rally, charming his guests during his moments of clarity.
Wednesday has seen him sink deeper into the illness. I can count the number of true interactions with him on one hand, and they were no more than a single back and forth. His heart rate is hovering around an unsustainable 120 bpm.
I made a list of the number of accounts and possessions that are in BR's name -- there are only 4. I deposited his stock certificate into his brokerage account, and hope I can liquidate it soon. Then I will be able to close it, his bank account, and his credit card. His mother will be given the meager proceeds, as we had planned.
I also spoke with the hospice social worker, who put me in touch with a nearby funeral home that will handle the cremation. After discussion with his mother and aunt, we have decided to buy a magnolia tree, and plant it on their property in Louisiana, using his ashes as fertilizer. That way he will always be close to his family, and his story can be passed down to future generations.
His aunt also generously offered to host a memorial party at her home in Belcher, and I have accepted. I want to make it one they will talk about for decades to come. Tastefully, of course. :-)
Tuesday, BR had a bit of a rally, charming his guests during his moments of clarity.
Wednesday has seen him sink deeper into the illness. I can count the number of true interactions with him on one hand, and they were no more than a single back and forth. His heart rate is hovering around an unsustainable 120 bpm.
I made a list of the number of accounts and possessions that are in BR's name -- there are only 4. I deposited his stock certificate into his brokerage account, and hope I can liquidate it soon. Then I will be able to close it, his bank account, and his credit card. His mother will be given the meager proceeds, as we had planned.
I also spoke with the hospice social worker, who put me in touch with a nearby funeral home that will handle the cremation. After discussion with his mother and aunt, we have decided to buy a magnolia tree, and plant it on their property in Louisiana, using his ashes as fertilizer. That way he will always be close to his family, and his story can be passed down to future generations.
His aunt also generously offered to host a memorial party at her home in Belcher, and I have accepted. I want to make it one they will talk about for decades to come. Tastefully, of course. :-)
Tuesday, April 20, 2010
Calmer nights, busier days
"Turn that off. I don't think I can handle this and Barbra Streisand." BR's mother, Dede had arrived with tears in her eyes, followed by her sister, Beth.
BR has slept peacefully now for two nights in a row. At the first sign of restlessness, I have been calling the nurse for breakthrough pain medication, but I've only had to call once at night. I'm very happy with the progress keeping his pain down.
We are now in full visitor mode here at Christopher House. In addition to Dede and Beth, our neighbors Cindy, Damaris, and Suzy have made and delivered dinners. BR's brother John, niece Chandler, and John's associate pastor Todd drove down from Keller for the day. Scot, Cathy, and Sharon are here from Dallas. Chad and David have flown in from Colorado, and Jay from Miami. Their presence is a great comfort. There's nothing like laughing with family and friends to take the edge off.
BR was awake, but not totally alert for most of the day yesterday. Most of what he says is unintelligible, and we treasure the moments when he is able to clearly express his feelings. For example, when I told him Jay was coming, he let out a long "oooh, Lord!"
Yesterday morning, it looked as if BR was down to his last hours. His heart was racing. His blood pressure was very low. His hands, feet, knees and elbows were purple and splotchy. After a full day of company, his vitals stabilized. I'm guessing that he refuses to be left out of a good party.
The doctors added IV Ketamine to BR's pain med cocktail. Yes, Bob Duff -- BR is now mainlining Special K. And it seems to be working. There was no restlessness at all last night, and he woke up this morning asking for "happy coffee." Nevermind that he doesn't drink coffee. I'm trying hard not to get my hopes up, and instead I am just living in the present and letting the future take care of itself.
I need to wrap this up, but not before thanking Herrad, Richie, Anne, Stephany, and Patrick, for rallying the MS blogging world to our support. It's a strange and marvelous community, and I'm glad to be a part of it.
And finally, I've set up an online gallery for people to share their favorite photos of BR. If you have some to share, just go to http://gallery.me.com/bobrobertmckellar/100173, and click the "Upload" button in the toolbar.
BR has slept peacefully now for two nights in a row. At the first sign of restlessness, I have been calling the nurse for breakthrough pain medication, but I've only had to call once at night. I'm very happy with the progress keeping his pain down.
We are now in full visitor mode here at Christopher House. In addition to Dede and Beth, our neighbors Cindy, Damaris, and Suzy have made and delivered dinners. BR's brother John, niece Chandler, and John's associate pastor Todd drove down from Keller for the day. Scot, Cathy, and Sharon are here from Dallas. Chad and David have flown in from Colorado, and Jay from Miami. Their presence is a great comfort. There's nothing like laughing with family and friends to take the edge off.
BR was awake, but not totally alert for most of the day yesterday. Most of what he says is unintelligible, and we treasure the moments when he is able to clearly express his feelings. For example, when I told him Jay was coming, he let out a long "oooh, Lord!"
Yesterday morning, it looked as if BR was down to his last hours. His heart was racing. His blood pressure was very low. His hands, feet, knees and elbows were purple and splotchy. After a full day of company, his vitals stabilized. I'm guessing that he refuses to be left out of a good party.
The doctors added IV Ketamine to BR's pain med cocktail. Yes, Bob Duff -- BR is now mainlining Special K. And it seems to be working. There was no restlessness at all last night, and he woke up this morning asking for "happy coffee." Nevermind that he doesn't drink coffee. I'm trying hard not to get my hopes up, and instead I am just living in the present and letting the future take care of itself.
I need to wrap this up, but not before thanking Herrad, Richie, Anne, Stephany, and Patrick, for rallying the MS blogging world to our support. It's a strange and marvelous community, and I'm glad to be a part of it.
And finally, I've set up an online gallery for people to share their favorite photos of BR. If you have some to share, just go to http://gallery.me.com/bobrobertmckellar/100173, and click the "Upload" button in the toolbar.
Monday, April 19, 2010
Trying to find comfort
What a difference a year makes. Last year, friends joined BR and me in cheering in the MS150 riders. This year, we had to cross the line of riders to bring BR to Christopher House.
As we start our third night of what the hospice nurses call his body "actively dying," I'm trying to find comfort in the outpouring of support from our friends. Comfort in having Dede and Beth and Jordan by our side. Comfort in the many glimpses of memories that flash across his iPad screen. But for some reason, all they do is make me cry. Not a very comfortable emotional state.
Comfort is found in the ordinary. This is anything but. So I've put the Hello, Dolly DVD into the laptop, and I'm singing along -- just like BR and I have done with friends so many times before.
As we start our third night of what the hospice nurses call his body "actively dying," I'm trying to find comfort in the outpouring of support from our friends. Comfort in having Dede and Beth and Jordan by our side. Comfort in the many glimpses of memories that flash across his iPad screen. But for some reason, all they do is make me cry. Not a very comfortable emotional state.
Comfort is found in the ordinary. This is anything but. So I've put the Hello, Dolly DVD into the laptop, and I'm singing along -- just like BR and I have done with friends so many times before.
Sunday, April 18, 2010
Another rough night
BR didn't sleep well at all last night. In addition to moaning and yelling, he started forming sentences. "Honey, please help me" was repeated for six hours straight. Unfortunately, this was a monologue, and I couldn't get him to give me any instructions on what needed fixing. So I continued with the Ativan until morning.
Then around 9am, I asked him how he was doing, and he responded, "my legs and feet are killing me." I pushed my luck and offered him some water through a straw, which he eagerly drank. Not knowing how long this swallowing opportunity would remain, I quickly gave him his oral meds hoping they would reduce his leg pain. Before long, he was finally sleeping.
I called the hospice nurse to ask for more help keeping him comfortable. He called the doctor and they recommended checking BR into Christopher House for in-patient pain management. BR is now comfortable in a private room -- one that has that has Willie Nelson as its generous benefactor.
Saturday, April 17, 2010
Soul crushingly painful decisions
Sitting alone in my living room, listening to a spring thunderstorm. BR has always loved thunderstorms. It has been raining most of the past few days. I'm not the only one crying.
The combination of Ativan and Methadone has BR resting comfortably once again. In consultation with his mother and brother, I have decided to discontinue the antibiotics. This beautiful, charming, light soul doesn't deserve to be weighed down any longer by a body that has betrayed him. It's so hard to take myself out of a decision like this. But when I do, I know that he has been looking for an escape from his body for a while now, and I can't deny him this chance.
Benny, come take your Bobrobert by the hand and show him where to get a good, stiff drink.
The combination of Ativan and Methadone has BR resting comfortably once again. In consultation with his mother and brother, I have decided to discontinue the antibiotics. This beautiful, charming, light soul doesn't deserve to be weighed down any longer by a body that has betrayed him. It's so hard to take myself out of a decision like this. But when I do, I know that he has been looking for an escape from his body for a while now, and I can't deny him this chance.
Benny, come take your Bobrobert by the hand and show him where to get a good, stiff drink.
Rough night
BR hasn't regained consciousness since 8pm last night. He was moaning and yelling off and on most of the night, but since I couldn't get him to swallow anything, there wasn't much I could do. When the hospice nurse came out this morning, she told me to give him the methadone rectally, and to dissolve his Ativan in 1/2 cc of water, then use a medicine syringe to put it between his lower lip and gum. He's now resting comfortably again.
The hospice doctor offered two options: admit him into a hospital for a full battery of tests and treatment, or keep him at home and comfortable. I chose the latter -- it's what he wants. We will continue with the IV antibiotics, and the next 24-48 hours will be make or break.
Light a candle and say a prayer for him, please.
The hospice doctor offered two options: admit him into a hospital for a full battery of tests and treatment, or keep him at home and comfortable. I chose the latter -- it's what he wants. We will continue with the IV antibiotics, and the next 24-48 hours will be make or break.
Light a candle and say a prayer for him, please.
Friday, April 16, 2010
His worst pain
BR is hurting something awful today. When the hospice nurse came out this morning to check on him, he was running a low grade fever and sweating profusely. Despite drinking quite a bit of water, he's not putting out much urine, and what's there is turning brown. Also, like two years ago when he had the abscess in his mouth, he is beginning to struggle to comprehend his surroundings, and he is repeating even the most simple of thoughts dozens of times.
The urine culture taken earlier this week showed only the colonized bacteria, not anything growing out of control. His lungs are clear. His skin isn't yellow. So where on earth is this infection hiding? The doctor has decided to take the "big hammer" approach and start IV antibiotics this evening -- twice a day for 10 days. Since hospice is administering them, he will be allowed to remain at home. Nothing drives home the fact that BR is really sick like 20 IV balls in the fridge.
The PICC line nurse just left after an 80 minute procedure to insert the IV catheter. He also got a peripheral IV line, which will be used until an X-ray can confirm the catheter placement. She also taught me how to flush the catheter -- really pretty easy. The hospice nurse should be here any minute to draw blood and start the first antibiotic ball.
The urine culture taken earlier this week showed only the colonized bacteria, not anything growing out of control. His lungs are clear. His skin isn't yellow. So where on earth is this infection hiding? The doctor has decided to take the "big hammer" approach and start IV antibiotics this evening -- twice a day for 10 days. Since hospice is administering them, he will be allowed to remain at home. Nothing drives home the fact that BR is really sick like 20 IV balls in the fridge.
The PICC line nurse just left after an 80 minute procedure to insert the IV catheter. He also got a peripheral IV line, which will be used until an X-ray can confirm the catheter placement. She also taught me how to flush the catheter -- really pretty easy. The hospice nurse should be here any minute to draw blood and start the first antibiotic ball.
Tuesday, April 13, 2010
I'm desensitized to all but his worst pain.
"It really hurts when you put on my socks."
"All the stops and starts in the car really hurt."
"I've got to get out of this chair. I'm burning up."
"I've got to get out of this bed. I'm burning up."
These are some of BR's primary daily issues affecting his comfort. None of them are new. We've seen doctor after doctor. We've tried many changes in routine. Still, these complaints linger.
Even remaining open-minded to suggestions from others on how to better manage his symptoms is a struggle. After so many failures, I've become numb. I do what's worked best to minimize his discomfort, and try not to beat myself up that the solutions aren't complete. I no longer believe a complete solution exists.
BR isn't in the same place, and rightfully so. He's the one in pain. In his eyes, there is always something I could be doing differently to make him feel better. I feel like a defective life preserver around a person who is never going to be rescued.
Despite my resignation on the daily discomforts, we are still fighting the occasional waves that overtop us. BR swallowed a crown a couple weeks ago, and is scheduled for a permanent replacement on the 19th. In the mean time, the temporary crown has fallen off twice. Thank goodness he hasn't swallowed it as well, and Jordan has been able to handle the multiple visits to the dentist.
Then, as I had previously suspected, BR body temperature spiked over the weekend, hitting 102.7 before I called the weekend hospice nurse. We agreed that Percocet would both reduce the fever and relieve his skin pain, and after the first dose, his temperature came down. It has spiked back up a few times since then, and is responding well to pills. His case manager came by on Monday to check on him and collect a urine sample. Until we get the results, I'll keep him as comfortable as I can.
"All the stops and starts in the car really hurt."
"I've got to get out of this chair. I'm burning up."
"I've got to get out of this bed. I'm burning up."
These are some of BR's primary daily issues affecting his comfort. None of them are new. We've seen doctor after doctor. We've tried many changes in routine. Still, these complaints linger.
Even remaining open-minded to suggestions from others on how to better manage his symptoms is a struggle. After so many failures, I've become numb. I do what's worked best to minimize his discomfort, and try not to beat myself up that the solutions aren't complete. I no longer believe a complete solution exists.
BR isn't in the same place, and rightfully so. He's the one in pain. In his eyes, there is always something I could be doing differently to make him feel better. I feel like a defective life preserver around a person who is never going to be rescued.
Despite my resignation on the daily discomforts, we are still fighting the occasional waves that overtop us. BR swallowed a crown a couple weeks ago, and is scheduled for a permanent replacement on the 19th. In the mean time, the temporary crown has fallen off twice. Thank goodness he hasn't swallowed it as well, and Jordan has been able to handle the multiple visits to the dentist.
Then, as I had previously suspected, BR body temperature spiked over the weekend, hitting 102.7 before I called the weekend hospice nurse. We agreed that Percocet would both reduce the fever and relieve his skin pain, and after the first dose, his temperature came down. It has spiked back up a few times since then, and is responding well to pills. His case manager came by on Monday to check on him and collect a urine sample. Until we get the results, I'll keep him as comfortable as I can.
Friday, April 9, 2010
We now return you to your regularly scheduled blog ...
When we last left you, BR had entered hospice in an effort to bring his pain levels down. The hospice doctors had taken him off Fentanyl and put him on Methadone, with a modest reduction in pain.
Over the last two months, we have been gradually increasing the Methadone, but aren't seeing further benefits. I'm sure the next steps will include trying a different medication, and we've asked the doctors to start looking into alternatives.
BR's skin sensitivity is really hurting him. This is usually a sign of an infection, but I'm at a loss as to where. He just finished a suite of Levaquin to clear a Cipro resistant UTI. After reading up on Levaquin, it seems an odd antibiotic choice given the potential negative affects it can have on BR's already compromised central nervous system.
At the peak of the UTI, he was passing blood clots in his urine. Pretty frightening at first, but some online research shows it to be a fairly common occurrence among long term suprapubic catheter users. Once the UTI cleared, the clots stopped.
So the increased skin sensitivity remains a mystery. I'm going to start monitoring his body temperature today. Without a secondary sign of infection, like a temperature or cloudy urine, we have to treat the sensitivity as yet another mysterious and disabling MS symptom.
I feel bad saying this, but I've been feeling disappointed in hospice. I heard from so many people that they would swoop in and take care of everything, but that just hasn't been the case. BR's biggest needs are prescription maintenance and counseling. Before hospice, I was able to refill his non-triplicate prescriptions 24/7 at the local Walgreens. Hospice requires 24 hours notice, the refill requests must go through the case manager who isn't always available, and the pharmacy is only open M-F 8-5. Given how easy it is to predict when BR will run out of a refill, I asked the case manager to put a reminder in their computer to automatically order refills, but that request was denied. Given that hospice refills in 2 week increments, the burden on me has more than doubled.
As for counseling, hospice provides chaplains. Now BR takes a while to warm up to a person before he opens up, and just as he was getting to that point, the chaplain fell ill. After three weeks of missed appointments, BR requested a replacement chaplain. I hope we get one soon.
So that's where we stand. Trying to ignore the pain. Trying to keep pushing for what we need. Trying to savor the moments of joy.
Over the last two months, we have been gradually increasing the Methadone, but aren't seeing further benefits. I'm sure the next steps will include trying a different medication, and we've asked the doctors to start looking into alternatives.
BR's skin sensitivity is really hurting him. This is usually a sign of an infection, but I'm at a loss as to where. He just finished a suite of Levaquin to clear a Cipro resistant UTI. After reading up on Levaquin, it seems an odd antibiotic choice given the potential negative affects it can have on BR's already compromised central nervous system.
At the peak of the UTI, he was passing blood clots in his urine. Pretty frightening at first, but some online research shows it to be a fairly common occurrence among long term suprapubic catheter users. Once the UTI cleared, the clots stopped.
So the increased skin sensitivity remains a mystery. I'm going to start monitoring his body temperature today. Without a secondary sign of infection, like a temperature or cloudy urine, we have to treat the sensitivity as yet another mysterious and disabling MS symptom.
I feel bad saying this, but I've been feeling disappointed in hospice. I heard from so many people that they would swoop in and take care of everything, but that just hasn't been the case. BR's biggest needs are prescription maintenance and counseling. Before hospice, I was able to refill his non-triplicate prescriptions 24/7 at the local Walgreens. Hospice requires 24 hours notice, the refill requests must go through the case manager who isn't always available, and the pharmacy is only open M-F 8-5. Given how easy it is to predict when BR will run out of a refill, I asked the case manager to put a reminder in their computer to automatically order refills, but that request was denied. Given that hospice refills in 2 week increments, the burden on me has more than doubled.
As for counseling, hospice provides chaplains. Now BR takes a while to warm up to a person before he opens up, and just as he was getting to that point, the chaplain fell ill. After three weeks of missed appointments, BR requested a replacement chaplain. I hope we get one soon.
So that's where we stand. Trying to ignore the pain. Trying to keep pushing for what we need. Trying to savor the moments of joy.
Thursday, April 8, 2010
2010 Birthday Guilty Pleasure Finale
As the end of my birthday draws near, I have to admit that in the last 12 months, I've discovered the joy of Family Guy. I didn't think I would like it. But I did.
There has to be a better way to end this polluted stream of infantile guilty pleasures than a fart joke, but I can't think of one.
There has to be a better way to end this polluted stream of infantile guilty pleasures than a fart joke, but I can't think of one.
2010 Birthday Guilty Pleasure #13: Blonde Jokes
Stolen shamelessly from a friend's Facebook notes:
A vicar books into a hotel and says to the blonde receptionist,Feel free to donate your favorite in the comments.
"I hope the porn channel in my room is disabled."
"No," she says, "It's just regular porn... you sick bastard."
2010 Birthday Guilty Pleasure #12: Train Wreck TV
I fell asleep one morning with the TV on. When I woke up, there was a large, mannish black woman on my screen heating a Slim Jim with a cigarette lighter. I've been hooked ever since.
2010 Birthday Guilty Pleasure #11: Artisanal Chocolates
With the demise of Joseph Schmidt Confections last year, I've been in the market for another artisanal chocolatier. So when the new tenant at the storefront on 16th street in San Francisco turned out to be Saratoga Chocolates, it piqued my curiosity. We asked our friend Jeanne to bring a box with her on her visit last week, and I have to say I'm really enjoying the variety of flavors packed into the box. The chocolates themselves are old-school sized -- not the giant rounded mountain that was the Joseph Schmidt truffle -- which is fine by me.
2010 Birthday Guilty Pleasure #10: Easter Chapeaux
Just like the Texas Bluebonnets, the Easter Chapeau party is a welcome sign that Spring has arrived.
2010 Birthday Guilty Pleasure #9: iPad Games
I got BR an iPad because he really likes his iPhone, but sometimes struggled with the small keyboard. With the optional case that keeps it from sliding all over his lap, the device seems to be a perfect fit.
Then I discovered the game apps. Up until now, I've only dabbled into a couple brain games for my Nintendo DSi. The iPad games are amazing in comparison. The big, bright, beautiful touch screen seems made for gaming.
I started out slowly, playing some games BR had purchased for his iPhone. Flick Fishing didn't play very well, but Skee Ball, Enigmo, and the Moron Test worked great in 2x mode.
Then BR's niece Abby suggested we try Tap Tap Radiation, a free app designed for the iPad. Think Dance Dance Revolution for couch potatoes. The music is fantastic, and the higher levels are very challenging. Even BR enjoys tapping to the beat.
I then took a chance on a for-pay app called Flight Control HD. I think I spent five hours playing it that first night. A perfect game for someone who is used to keeping a lot of plates spinning.
Then I discovered the game apps. Up until now, I've only dabbled into a couple brain games for my Nintendo DSi. The iPad games are amazing in comparison. The big, bright, beautiful touch screen seems made for gaming.
I started out slowly, playing some games BR had purchased for his iPhone. Flick Fishing didn't play very well, but Skee Ball, Enigmo, and the Moron Test worked great in 2x mode.
Then BR's niece Abby suggested we try Tap Tap Radiation, a free app designed for the iPad. Think Dance Dance Revolution for couch potatoes. The music is fantastic, and the higher levels are very challenging. Even BR enjoys tapping to the beat.
I then took a chance on a for-pay app called Flight Control HD. I think I spent five hours playing it that first night. A perfect game for someone who is used to keeping a lot of plates spinning.
2010 Birthday Guilty Pleasure #8: FarmVille
This one is really embarrassing. BR's mama is so farm-proud. Her Facebook profile is filled with "I fertilized this" and "I found these eggs." My initial reaction was, what do you get out of it? Produce? Money? Prestige? Notoriety? The last two seem to be the primary motivators.
BR started a farm, but it soon became clear that he wouldn't be able to keep up with it on his own. Crops wilted. Gifts languished unopened. I reluctantly offered to check on it a couple times a day to help keep it moving forward. Big mistake. My name is steve, and I play FarmVille.
Our big thing is to delete everything from time to time and completely rebuild from scratch. The feeling of a virtual purge is very therapeutic.
BR started a farm, but it soon became clear that he wouldn't be able to keep up with it on his own. Crops wilted. Gifts languished unopened. I reluctantly offered to check on it a couple times a day to help keep it moving forward. Big mistake. My name is steve, and I play FarmVille.
Our big thing is to delete everything from time to time and completely rebuild from scratch. The feeling of a virtual purge is very therapeutic.
2010 Birthday Guilty Pleasure #7: The Simpsons
20 years and they still make me laugh. Who hasn't had this argument with their spouse?
2010 Birthday Guilty Pleasure #6: Tacky T-Shirts
Austin's 6th Street provides many opportunities to purchase t-shirts which appear innocent, yet have an off-color hidden message.
2010 Birthday Guilty Pleasure #5: Alphabeat
I saw Alphabeat last month at the South by Southwest Music Conference here in Austin. It's got a good beat and it's easy to dance to.
[there may be an initial commercial]
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[there may be an initial commercial]
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2010 Birthday Guilty Pleasure #4: Drunk History
This is what happens when you get a person drunk and ask them to explain an historical event.
2010 Birthday Guilty Pleasure #3: Angry Lesbian Poetry
From the BBC, I present Rosie Lugosi, the Lesbian Vampire Queen performing her poem "Angry."
2010 Birthday Guilty Pleasure #2: South Park
South Park is back again for another appearance this year. In this clip, Cartman has turned to crime to get his KFC fix, while the men of South Park have given themselves testicular cancer to gain access to medicinal marijuana.
2010 Birthday Guilty Pleasure #1: Mutha Chucka
We kick off this year's birthday celebration of guilty pleasures with my favorite drag queen that I know in real life, Mutha Chucka. Here she is performing Kate Miller-Heidke's Are You F@#ing Kidding Me? (Facebook Song).
More YouTube videos of Mutha Chucka here.
[EDIT 2016] OK. That video is gone. Here's a live performance from Kate herself.
More YouTube videos of Mutha Chucka here.
[EDIT 2016] OK. That video is gone. Here's a live performance from Kate herself.
Wednesday, April 7, 2010
It's coming ...
WARNING: At the stroke of midnight (UTC-5), this blog will be taken over by 24 hours of political incorrectness, embarrassing admissions, and decadent indulgences. Please do not adjust the vertical. Please do not adjust the horizontal. Please protect the children.
Wednesday, March 31, 2010
BR's iBOT takes a licking and keeps on ticking.
The iBOT repair man arrived on the 22nd to assess the damage to the iBOT after BR's fall down the front steps. I had noted that the headrest was bent, and that a cast aluminum panel that held the right leg rest in place had cracked, leaving the leg rest usable but unstable. After describing the incident to the repair man, he gave the chair a once-over. To his surprise, the two items I noted for repair were the only things he could find wrong as well. Whew! That thing is really built like a tank! He ordered the parts and returned the following Wednesday to make the repairs -- just in time for us to load up in the minivan and head to Louisiana for Nanny's memorial service.
BR with Sarah-Beth in Belcher.
Jordan and Steve on the couch.
It was great to spend the weekend with family. Jordan joined us for the road trip, and got to experience first hand the brand of love grown only in Belcher. Food and drink were plentiful, and I took time to perform some routine maintenance on BR's mother's and uncle's computers. Uncle Mickey's had gotten into a state where antivirus protection failed to start, and Windows patches failed to install. I found the solution in Microsoft's knowledge base, and after a few hours of downloads, ACL resets, and Service Pack installations, the computer rebooted without any errors and protected with antivirus.
When we returned to Austin, we were greeted by our friend Jeanne. She had flown in from Oakland to spend some of her spring break with us. We love Jeanne, and hadn't seen her since her 50th birthday celebration at Jazz Fest in New Orleans last year. She was a delight as usual, and we took advantage of the beautiful weather by spending Tuesday walking in the neighborhood park, and eating a Polynesian-Mexican meal at the Hula Hut on Lake Austin.
Jeanne and BR at the greenway waterfall
I return to work tomorrow, so I spent today planning our Easter Chapeau party on Sunday. I also made a run to the Home Depot to pick up a 6"x6"x8' post to protect BR from the front steps when he's on the porch. With the post in place, BR will be able to spend time unsupervised on the porch once again. Yippee!
Front steps before ...
... and with the post in place.
BR with Sarah-Beth in Belcher.
Jordan and Steve on the couch.
It was great to spend the weekend with family. Jordan joined us for the road trip, and got to experience first hand the brand of love grown only in Belcher. Food and drink were plentiful, and I took time to perform some routine maintenance on BR's mother's and uncle's computers. Uncle Mickey's had gotten into a state where antivirus protection failed to start, and Windows patches failed to install. I found the solution in Microsoft's knowledge base, and after a few hours of downloads, ACL resets, and Service Pack installations, the computer rebooted without any errors and protected with antivirus.
When we returned to Austin, we were greeted by our friend Jeanne. She had flown in from Oakland to spend some of her spring break with us. We love Jeanne, and hadn't seen her since her 50th birthday celebration at Jazz Fest in New Orleans last year. She was a delight as usual, and we took advantage of the beautiful weather by spending Tuesday walking in the neighborhood park, and eating a Polynesian-Mexican meal at the Hula Hut on Lake Austin.
Jeanne and BR at the greenway waterfall
I return to work tomorrow, so I spent today planning our Easter Chapeau party on Sunday. I also made a run to the Home Depot to pick up a 6"x6"x8' post to protect BR from the front steps when he's on the porch. With the post in place, BR will be able to spend time unsupervised on the porch once again. Yippee!
Front steps before ...
... and with the post in place.
Saturday, March 27, 2010
In Memorium: Doris "Nanny" Pearce (1920-2010)
Nanny was BR's maternal grandmother. I first met her in the early 1990s at BR's cousin Billy's wedding in Dallas. She was energetic, observant, outspoken, and as BR warned me, somewhat judgmental -- a warning I had managed to forget as I sped from work to their hotel on my motorcycle, still wearing a "Sorority Girls from Hell" t-shirt. Not one minute after greeting her, I heard her read the t-shirt out loud, and then let out a laugh that at the same time was warm and welcoming, and yet said "can you believe what this idiot is wearing?"
Nanny was a picture of southern gentility. She had high expectations of her family, which occasionally lead to awkward secrets. In the early years of our relationship, BR was adamant that Nanny was not to know that he was gay. After about the second time I joined him on a trip home to Louisiana, Nanny decided that I would be a perfect boyfriend for his cousin Paige. This matchmaking continued until shortly after BR and I married in 1992, and he decided to come out to her. Paige, however, continued to refer to me as her "backup boy" for many years to come.
Nanny was frequently concerned with BR's appearance. The years when he would grow his hair long, she would encourage him cut it to a respectable length. This prompted a Christmas present one year containing nothing but his hair.
In the years after the passing of her second husband, Frank, Nanny became increasingly introverted. BR's mother Dede moved into a home built on Nanny's property to be close by. Between her, her sister Beth, and their families, Nanny was lovingly cared for through her passing Thursday morning.
I think I'll get a haircut today.
Nanny was a picture of southern gentility. She had high expectations of her family, which occasionally lead to awkward secrets. In the early years of our relationship, BR was adamant that Nanny was not to know that he was gay. After about the second time I joined him on a trip home to Louisiana, Nanny decided that I would be a perfect boyfriend for his cousin Paige. This matchmaking continued until shortly after BR and I married in 1992, and he decided to come out to her. Paige, however, continued to refer to me as her "backup boy" for many years to come.
Nanny was frequently concerned with BR's appearance. The years when he would grow his hair long, she would encourage him cut it to a respectable length. This prompted a Christmas present one year containing nothing but his hair.
In the years after the passing of her second husband, Frank, Nanny became increasingly introverted. BR's mother Dede moved into a home built on Nanny's property to be close by. Between her, her sister Beth, and their families, Nanny was lovingly cared for through her passing Thursday morning.
I think I'll get a haircut today.
Wednesday, March 24, 2010
We are uncles yet again!
This time it's figurative. Another neighborhood couple just had their first baby, a beautiful little girl named Josephine. We've made up another batch of custom onesies to welcome her to the neighborhood.
Wednesday, March 17, 2010
BR's world just shrank a bit
I was upstairs in a teleconference for work, when I heard a whole lot of commotion and yelling from down stairs. BR was down there with some friends making dinner, so at first I just assumed they were having a good time and "getting happy." In the second wave of shouts, I could make out my name and a sense of urgency. I stuck my head out the office door to see what was going on. "Bobrobert has fallen off the porch! Get down here quick!" A choice expletive and a quick good-bye to the conference, and I was flying down the stairs.
BR was laying on the sidewalk at the foot of the porch stairs, his iBOT on its side and partially on top of him, sounding the all too familiar "red alarm." I powered off the chair, and tried to lift it out of the way, but it was good and wedged on the railing. So I turned my focus to BR.
"Are you OK?"
"Yes." He sounded a little shaken up.
"Did you hit your head?"
"No, sir." Whew. I felt around his scalp just to make sure.
There was no blood and only a few noticeable scrapes on his elbow. At this point, I wanted to ask, "How did this happen?" but realized there would be plenty of time to play Monday morning quarterback later.
Given BR's recent osteoporosis diagnosis, we were all a bit concerned that he may have broken some bones. Without moving him too much, we got him comfortable on the sidewalk with a blanket and the wheelchair cushion for his head, then called the hospice after-hours nurse for help. He took our information, then advised us to call 911, because BR would likely require x-rays in the ER. While a neighbor called, I had Jordan gather all his medication, and I grabbed his DNR. The ambulance arrived and soon he was on a stretcher and on his way to the hospital.
BR hates the ER. His medications give him intense dry mouth, and he's never seen without a bottle of water. So it irks him to no end that from the moment the EMTs arrive until he's seen by the ER doctor, he's not allowed a drop of water. But that doesn't stop him from asking, begging, and pleading. All told, he was without water for a little over an hour, and very happy when he was finally given some.
The doctor ordered some x-rays and a Dilaudid injection. We just laughed, as previous experience with Dilaudid has shown it to have absolutely zero effect on BR. He got Demerol instead.
They took the x-rays, which didn't show any fractures. The doctor wanted to order a CAT scan, but we decided against it. All told, we were in the ER for three hours and left with peace of mind that his bones were still intact.
But things won't be the same. The front porch was BR's place to be social with the neighbors -- one of the few daily social opportunities he has apart from Jordan and myself. He will now require supervision when on the porch. An extra set of eyes to make sure this type of thing doesn't happen again. A little less independence.
BR was laying on the sidewalk at the foot of the porch stairs, his iBOT on its side and partially on top of him, sounding the all too familiar "red alarm." I powered off the chair, and tried to lift it out of the way, but it was good and wedged on the railing. So I turned my focus to BR.
"Are you OK?"
"Yes." He sounded a little shaken up.
"Did you hit your head?"
"No, sir." Whew. I felt around his scalp just to make sure.
There was no blood and only a few noticeable scrapes on his elbow. At this point, I wanted to ask, "How did this happen?" but realized there would be plenty of time to play Monday morning quarterback later.
Given BR's recent osteoporosis diagnosis, we were all a bit concerned that he may have broken some bones. Without moving him too much, we got him comfortable on the sidewalk with a blanket and the wheelchair cushion for his head, then called the hospice after-hours nurse for help. He took our information, then advised us to call 911, because BR would likely require x-rays in the ER. While a neighbor called, I had Jordan gather all his medication, and I grabbed his DNR. The ambulance arrived and soon he was on a stretcher and on his way to the hospital.
BR hates the ER. His medications give him intense dry mouth, and he's never seen without a bottle of water. So it irks him to no end that from the moment the EMTs arrive until he's seen by the ER doctor, he's not allowed a drop of water. But that doesn't stop him from asking, begging, and pleading. All told, he was without water for a little over an hour, and very happy when he was finally given some.
The doctor ordered some x-rays and a Dilaudid injection. We just laughed, as previous experience with Dilaudid has shown it to have absolutely zero effect on BR. He got Demerol instead.
They took the x-rays, which didn't show any fractures. The doctor wanted to order a CAT scan, but we decided against it. All told, we were in the ER for three hours and left with peace of mind that his bones were still intact.
But things won't be the same. The front porch was BR's place to be social with the neighbors -- one of the few daily social opportunities he has apart from Jordan and myself. He will now require supervision when on the porch. An extra set of eyes to make sure this type of thing doesn't happen again. A little less independence.
Sunday, March 14, 2010
Jordan's first motorcycle lesson
Saturday was Jordan's 20th birthday. When I asked her what she wanted to do to celebrate, she said she wanted to learn to ride the motorcycle. She was quite successful.
Friday, March 12, 2010
One project down
18 months ago, I forgot to remove the casters from BR's hospital table before the movers took it. For 18 months, it hasn't rolled properly. Last night, I finally pulled out the drill and box of miscellaneous fasteners, and fixed the damn thing.
Wednesday, March 10, 2010
Regaining focus
Spring has arrived here in Austin. Highs will be in the 70s all week. BR and I even slept with the windows open last night. Very refreshing.
Spring also means the end of the cedar allergy season. For me, cedar allergies are not only a runny nose and blocked sinuses and persistent cough, but also a lethargy that I find difficult to overcome. Pseudophed is just about the only thing that gets me through. Thank goodness I won't have to deal with that again until November.
I got a letter from my employer about a week ago. They are switching insurance carriers. Anthem Blue Cross has made headlines lately for outrageous rate hikes, prompting my employer to take their business to Aetna. I'm going to take this change as a sign that it is time to move BR to Medicare and a supplement plan. The main thing holding me back before was inertia, and this was just the push I needed.
BR and I have been struggling with a lot of negativity lately. The word "no" seems to flow out of his mouth very easily, expressing a contrary opinion over even the silliest of things. When I have the strength, I can laugh and let it slide. When I don't, it leads to some pretty heated arguments. I even find myself taking advantage of his sedation, allowing him to sleep longer than I know he would like in order to put off having to deal with the inevitable stream of criticism. This isn't one of my prouder admissions, and I'm taking it as a clear sign that it is time for both of us to seek some counseling.
I'm also taking it as a sign that it is time to stop working from home so much. My employer just moved into new offices on the edge of town with magnificent views of the Texas hill country. My hope is that the daily trip into the office will create some perspective on life that is impossible to maintain when I only leave the house to make groceries. I'm thinking of it like mini trips to California.
Spring also means the end of the cedar allergy season. For me, cedar allergies are not only a runny nose and blocked sinuses and persistent cough, but also a lethargy that I find difficult to overcome. Pseudophed is just about the only thing that gets me through. Thank goodness I won't have to deal with that again until November.
I got a letter from my employer about a week ago. They are switching insurance carriers. Anthem Blue Cross has made headlines lately for outrageous rate hikes, prompting my employer to take their business to Aetna. I'm going to take this change as a sign that it is time to move BR to Medicare and a supplement plan. The main thing holding me back before was inertia, and this was just the push I needed.
BR and I have been struggling with a lot of negativity lately. The word "no" seems to flow out of his mouth very easily, expressing a contrary opinion over even the silliest of things. When I have the strength, I can laugh and let it slide. When I don't, it leads to some pretty heated arguments. I even find myself taking advantage of his sedation, allowing him to sleep longer than I know he would like in order to put off having to deal with the inevitable stream of criticism. This isn't one of my prouder admissions, and I'm taking it as a clear sign that it is time for both of us to seek some counseling.
I'm also taking it as a sign that it is time to stop working from home so much. My employer just moved into new offices on the edge of town with magnificent views of the Texas hill country. My hope is that the daily trip into the office will create some perspective on life that is impossible to maintain when I only leave the house to make groceries. I'm thinking of it like mini trips to California.
Monday, February 22, 2010
I wanna be sedated
BR's been under hospice care for a bit over a month now, with the primary goal of getting his pain under control. They took him off the Fentanyl patches and percocet, and put him on Methadone and liquid morphine. Initial indicators were good. The pain immediately changed to something more tolerable, but still painful -- 4-6 instead of 7-8 on the pain scale. Since then, they have been gradually increasing the methadone, and he's now consistently a 4-5. With the last increase, though, sedation has started to rear its ugly head. He slept for a large part of the day yesterday. We'll have to wait and see where this new dosage settles, but there's a good chance we won't be able to increase again without compromising his ability to take his other oral medications on schedule.
When he is awake, though, he's in a much better frame of mind. And for that, I'm thankful.
When he is awake, though, he's in a much better frame of mind. And for that, I'm thankful.
Saturday, February 20, 2010
Ready for the next round
What a refreshing bit of travel. With BR safely in the care of Jordan, I was able to focus on work in California for a week and family in Illinois for a weekend. However, as the time grew closer to head back to Austin, the call from New Orleans grew stronger and stronger. "Carnival." "Carnival."
Adding those extra two days to the trip was the best idea. Two days for myself without worrying about BR or family. I came home happy and ready to continue providing care and comfort to BR, ready to tackle more of the overdue household tasks, and ready to face whatever MS decides to throw at us next.
Ring. Ring.[Note to T-Mobile: Add extra 3G capacity to the French Quarter during Mardi Gras. It's frustrating to get an unusable 3G signal.]
BR: Hello?
Steve: Hi Bobrobert! Everything going OK?
BR: Fine. How's the family?
Steve: Great! Mom's doing so well, She spent the night here last night, and thinks she'll be out by next week.
BR: And Hope? How cute is she?
Steve: Adorable. A little fussy today, but that's probably just because she's not used to having so much commotion around her. Hey, I've got a question.
BR: The answer is yes.
Steve: Yes? You don't even know the question.
BR: Yes, you can go to New Orleans. But for every dollar you spend on this side trip, I get to spend one on myself.
Steve: Deal!
BR: And be sure to text me lots of pictures.
Adding those extra two days to the trip was the best idea. Two days for myself without worrying about BR or family. I came home happy and ready to continue providing care and comfort to BR, ready to tackle more of the overdue household tasks, and ready to face whatever MS decides to throw at us next.
Bonus round: New Orleans Postcards
Last minute change of plans
Landing at Louis Armstrong International Airport
Orpheus Parade
She won first prize
Running into old friends
Bead toss
Lunch with Karen
The party's over
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