Tuesday, January 19, 2010

Just breathe

I've had a cough since November. At first it was non-productive, but very annoying. By the end of the holidays, I'd developed full blown bronchitis. Combined with my annual cedar allergies, and I have only been capable of life's bare essentials for several weeks. A suite of antibiotics, Benedryl, and some codeine cough syrup later, and I'm back to the living.

We had a hospice assessment interview about a week ago. The intake nurse was as nice as nice can be, but she didn't hold out much hope for hospice. Based on what she'd seen, BR's prognosis didn't fall within the six month life expectancy. However, she did offer to have their palliative care doctor consult with the Which doctor on BR's pain management.

Oh, did I forget to tell you that we are staying with the Which doctor? After the Prialt trial failed in early December, we met with a new pain management doctor here in Austin that was recommended by MD Anderson. We were told that he would be open to helping BR through the transition to palliative care. Nothing could have been further from the truth. This doctor took one look at BR's medication list, and decided that he could not continue down that path. Being as open minded as we could, we asked what he recommended.

"You need to come off of these meds so we can see how much pain you are really in."

That didn't sound like much fun.

"What level of pain do you consider acceptable, Doctor?"

"So much of pain is how the mind perceives it. Consider if you won a million dollars in the lottery, and then I came up and hit you on the thumb with a hammer. You'd be pissed off with me, but you'd get over it. Now consider if you lost your ability to walk, and then I came up and hit you on the thumb with a hammer. You would likely fall into self pity that would only make the pain worse."

"Could you just not hit me on the thumb with a hammer?"

The whole time we were with the doctor, nurses and PAs were interrupting every five minutes or so to get his signature on different forms and prescriptions. After about 30 minutes, BR had had enough.

"Thank you for your time, Doctor. You obviously have more pressing things that need your attention."

As we left, the receptionist asked if we needed to make a follow-up appointment. "I don't know," I honestly responded. We now had a neurologist recommending hospice and palliative care, and a pain doctor wanting to take away all pain medications to see how painful it would be. My head was about to explode.

It takes about 30 minutes for us to drive home from the doctor's office. About 15 minutes into the drive, BR's cell phone rang. It was his neurologist. The pain doctor had called him to discuss BR's case. The neurologist basically laid it out like this: "You can either continue looking for alternate pain therapies that may or may not bring relief, or you can move on to palliative care. I will support either decision."

&$%$%&%^*#@%$^#!@#

When I look at BR, I can see how tired he is of all the pain. It's been over two years and he has only experienced relief a handful of times, most of which ended with him falling asleep for extended periods of time. Now, I'm no sadist. I'd rather he be comfortable and sleep a lot than spend the rest of his life in pain searching for a cure that may not exist at all.

Yet BR has been having a hard time choosing a course of treatment, even after some very helpful discussions with his family over the holidays. So far, he's agreed to have the hospice assessment, which, as I mentioned, took place last week. Well the call came this morning, and they want to start hospice services today. The reality of it all has me winding my butt and scratching my watch, as Truvy would say.

12 comments:

Cranky said...

Steve - are hospice services delivered in the home? And, will they essentially be the means for delivering the palliative care, presumably making the quality of BR's life the key objective?

Have I said lately that MS sucks?

steve said...

Hi Cranky - Fantastic to hear from you. Hope the new routine building is progressing nicely!

Hospice is going to be taking over all of BR's medical care, and he gets to stay at home. They pay for supplies, medications, and comfort care. They don't cover any curative care.

I'm being told that they will be more aggressive trying to manage BR's pain. Medications will be adjusted more frequently in an attempt to arrive at the best balance between pain relief and alertness. If they can find a balance where he has pain relief and is expected to live longer than six months, he will be discharged from hospice, but we are pretty sure he will be able to continue seeing the hospice's pain management doctor.

MS is lollipops with a delicate coating of crap. How many licks does it take to get to the center? The world may never know.

Anonymous said...

MS does suck, and you can know you have searched for all the curative care that is available for over two years!!It is my prayer that he finds the "sweet spot" of pain relief.Love you bunches, Dede?Mama

Herrad said...

Hi Steve,
Soon as I saw your comment about BR going in to hospice care I thought oh no he has to leave home.
What a relief to hear he will be at home being cared for by the team from the hospice.
Is there always someone from the team present?
Here in the Netherlands you get three months in a hospice and if you are not dead after three months they put you in residential care.
Hope the news team of carers are good folk and look after BR very well.
Thinking about you all the time.
Big hug to you both.
Love,
Herrad

Cranky said...

Steve - thanks for your explanation about the hospice care routine. It sounds like the best thing possible, since they will look to achieving the balance you speak of, without trying to "cure" anything. Here's hoping he gets thru the 6 months with the best balance possible, still alive and can transition over to the pain management doc for continuing treatment.

kmilyun said...

Steve,
I am glad that BR gets to stay home.
I hope for both of you that this results in a better quality of life for both of you,

The strength, care, love, and concern you have for BR reminds me how lucky I am to have KRP and it scares me what my having MS brings to her plate.

MS does SUCK.

Jan

B ILL said...

What to say...
I can't quite grasp it all either Steve.

MS isn't really my cup of tea.
I don't like my tea with a big piece of shit in it!

Patrick@Caregivingly Yours said...

Hey guys! Even though a MS Caregiver I myself have suffered through Cluster Headaches for 20 years. While Patti has been fortunate to have no MS associated pain, I on the other hand have experienced new dimensions of pain with Cluster Headaches. ... I can soooo relate to the frustrations of your pain management visit. And more so understand that pain eventually dwarfs everything. Isn't hospice care when focused on pain more about 'quality' of life?

Caregivingly Yours, Patrick

Z said...

1. Cedar Pollen Sucks
2. Well, Doctor. Give me the $1 million and then we will talk.
3. Great news on the hospice care!!!

mabith said...

Doctors suck more than the disease half the time, I think.

I've been following your blog for a while. I've been suffering from two chronic pain conditions (one nerve based and one muscle based) for six years and let me say that I know how it goes. I'm primarily in a wheelchair or bedridden and I'm 24 years old.

That doctor has obviously never been in long-term pain. If you're in a wheelchair and dealing with constant pain and get hit with a hammer you're way more likely to shrug it off faster than a non-pain-filled person because you know it's SHORT-TERM pain and will be gone soon enough.

In any case, I know I am a stranger, but I think of you both often, and I hope you can find a balance with the stronger meds that will allow you to really enjoy all the time you have, hopefully longer than six months... I know this battle all too well but it breaks my heart when I hear about others going through it too.

steve said...

Dede/Mama - One week on and no sweet spot yet. The best we've achieved is a 4 on the pain scale, at which he becomes really out of it.

Herrad - I'm really thankful to have the hospice team looking after BR. Everyone is quite nice, and very concerned for his comfort. A far cry from the non-hospice pain doctor's we've been seeing.

Cranky - Since the move to Austin, I've come to realize that six months can go by in the blink of an eye when you are focused on the daily routine. As Jan mentions, I hope to find balance and quality of life for both of us.

Billy - It really isn't as grave as it may sound. We are just pushing BR a bit more into La La land to see if relief can be found there. Lord knows we've looked everywhere else.

Patrick - Yep. We are using hospice as a kinder, more sensitive way to manage pain. The absence of any rapid deterioration in BR's current physical state is unusual for them, but not unheard of.

Zelda - How can cedar chests smell so good, yet cedar pollen makes me so miserable?

Mabith - Thanks for following along and decloaking with your support. Nice insight on short-term pain on top of chronic illness. You've got me thinking about why so many doctors are the way they are.

Have Myelin? said...

Hospice took care of my father as well as my grandmother. They did not have MS but we still had to use their services. My daughter was also a caregiver for them and THEN she died.

My point is, don't forget to take care of yourself.

I know it has been some time since you posted this but as I said I am catching up.