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.


Cranky said...

Steve - disappointing to read of your experience from hospice. Do you think the tight rein on the drugs is typical of hospice in general because of the typical patient they're working with, with a very short life expectancy? Could they make an exception in your case due to BR's longer time horizon? If not, due to the impact on you, would it be worth going back to a non-hospice model?

steve said...

Hi Cranky - I'm reluctant to push for exceptional processes -- they end up being fragile and difficult to maintain. So I'm adapting by putting a reminder on my calendar every Thursday morning to call in the refills.

My criteria for BR exiting hospice is well controlled pain. We aren't there yet. Another option, though, is to change hospice providers. There are at least three that serve our address.

Have Myelin? said...

I have had that symptom as I mentioned on Herrad's blog but... I don't know if it would help for someone this advanced, Steve. Has he tried Lyrica? It helped a lot with my Shingles nerve/skin pain. I also take Topamax but that one requires time and and you start off slow to build up tolerance. He might not need a lot...but it might not work either. Or maybe I am off the wrong track!

I simply remember my skin feeling ARGHHHH...but not at all now? The pain from shingles was sort of the same way.

I am sorry...

steve said...

Hi Sherry - BR is on 200mg Lyrica three times a day, plus 100mg Topamax and 200mg Imiprimine at bedtime. If he misses a dose of any of these, the skin pain becomes unbearable without any stimulus at all. So you are right on track!

Herrad said...

Hi Steve,
Hope you can resolve the issues you have with the hospice.
Why don't you chat to the other hospices and see how they operate and how they deal with drugs and counselling.
Hope you can organise the best people for Br.
Thinking of you both.

Cindy said...

If BR's insurance has options of hospice providers, try to switch for sure. My dad's had meds delivered to the house and staff was very available. Your provider seems to have forgotten much of the mission of hospice. Good luck, and much love to you both.

Kim said...

How much of a pain would it be to switch hospice providers? It sounds like this group isn't interested in adapting their care protocols to the individual needs of the client-patient.

love to you both

Patrick@Caregivingly Yours said...

It takes time and guts to share, thanks. Others may have to walk this way. Knowledge or better yet experience is power.

Caregivingly Yours, Patrick