pain management and further progression

pookabera · March 12

Hi friends,

Things are progressing over here (as they always are).

We have a low dose of morphine on board now. My dad's legs are extremely stiff and causing him pretty consistent pain, it appears. Brought this up to his hospice nurse when he visited last week and he said we should start morphine now, because once the pain starts it will only get worse/continue. And whew, he was not kidding. Already thinking I need to call to discuss how we know when we need to ask for the dosage to be increased.

I'm working from my parents' house today, so my mom and I are keeping track of my dad's discomfort/grimacing/agitation to see if he's making it between each dose without the pain coming back full force.

He's still eating. We think the morphine is causing dry mouth, which is helping him drink more. But he's not urinating much.. I did read that morphine can cause decreased urination... but not really sure how that works functionally (where is the urine going...?)

He's back to not sleeping through the night, which is not good for my mom. We also have removed his top dentures because they stopped fitting again and the looseness of them was agitating him. We've been telling him we had to send them out to be fixed.

The pain is new and definitely puts me on edge. I just want him to be comfortable.

So, as always, taking it a day at a time and trying to keep everyone afloat.

I got see my husband's band play last weekend, which was fun. I (as you could guess) am not getting out much apart from work and the occasional errand. I'm also waiting to hear back on a job I applied for within my department - being a realist about it, but would really like to get it.

SusanB-dil · March 12

On, my pookabera - You've sure had the ups and downs this week.

None of us want our LO in any pain.

Glad you got to get out and see the band, though. Hope you get the job you are after.

Cosmic · March 12

My wife, early stage 7 has spinal stenosis, had it for years and doctors refuse to operate. she is on 1200mg Gabapentin and Percocet along with Celebrex. None of them seem to do much good anymore, She has a difficulty walking, shuffling and always complaining about leg pain and it hurts because there's nothing I can do to help. At what stage/condition is morphine called for? Would it help with bladder control/less urination? Going through several "depends" a night and Hospice says she's not ready for care. They never have seen her, just read her doctor annual checkup(s) online. Total frustration with the medical community at this point.

pookabera · March 13

https://alzconnected.org/discussion/comment/201902#Comment_201902

Thank you so much! Doing my best to be cautiously optimistic.

pookabera · March 13

https://alzconnected.org/discussion/comment/201928#Comment_201928

I don't know much at all about pain management - my dad hasn't experienced pain until the past week or so. When we mentioned it to his hospice nurse and told him we'd been giving him 500mg of tylenol, his nurse told us to get the morphine on board because once the pain starts at this point it's not going to get better. I'm not sure if the answer was different for us because my dad may be further along in his progression (I'm guessing he has up to a month left to go, if that, but that is totally a guess).

For context though, he's been prescribed the lowest dose of morphine. I looked up to see what the equivalent of that is, and I read that it's equivalent to about 1 vicodin - so not a very high dose of morphine at all.

I'm not sure that it would help with her bladder control. My dad is already dehydrated and refusing to drink fluids, so his decrease in urination is coming from a couple different places.

mommyandme (m&m) · March 13

https://alzconnected.org/discussion/comment/201928#Comment_201928

My mom had chronic back pain well before this disease took hold, surgeries etc…ensued. She even moved states with me thinking that we’d find a new dr here to help. Didn’t happen, she got depressed, Cymbalta helped with that. Her new neurologist prescribed 5% Lidocaine patches which did seem to help. In time, something she’d complained about for decades simply vanished, unlikely due to the patches or any other medical practice. She took pregabalin until hospice removed it (suddenly started to make her very sleepy) and I gave her over the counter analgesics proactively but I wondered if her disease progression might have just wiped it from her memory.

Maybe patches might help (you can get 4% over the counter) even if psychologically? Not really sure what perfect storm took her pain away. I empathize with you as you contend with yet another aspect of this grotesque disease, truly sorry.

pain management and further progression

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