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.

If in a simple carpenter
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.

The 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.

To me
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

Reverend 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.

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 darkness
All it takes is one voice
Singing so they hear what's on your mind
And when you look around you'll find

My family joined me for the second verse and bridge.

There's more than one voice
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

Then we moved out into the congregation, hugging anyone who would have it. Standing in the aisles, we finished the song.

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

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.

Self portrait postcards

BR took these photos of himself on my birthday. I found them in his iPhone.

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.

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.

He's gone

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!

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. :-)

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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."

Ring. Ring.

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.

[Note to T-Mobile: Add extra 3G capacity to the French Quarter during Mardi Gras. It's frustrating to get an unusable 3G signal.]

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.