Friday, April 30, 2010
Wednesday, April 28, 2010
Tuesday, April 27, 2010
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.
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
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.
Thursday, April 22, 2010
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!
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
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
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
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
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 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
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
"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
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
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.
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."
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.
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.
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More YouTube videos of Mutha Chucka here.
[EDIT 2016] OK. That video is gone. Here's a live performance from Kate herself.