Hold on Tight...

Well, Brian pretty immeadietly experienced loss of appetite, constipation, and nausea on tiny little does of morphine. We are taking .125 just twice per day. Yup I know the drill about adjustments, meds to counteract, and do on but geez that’s an intense reaction to a tiny amount.

He had maybe three tiny does in two days and his body just wacked out.

There are similar medications that are not morphine that he can try.

I usually talk about morphine with Chris but he was actually on Oxycodone liquid which is a synthetic rather than an opiate. I'm sure hospice will help you work out the right regime?

Come to think of it Brian took
Some Oxy in the hospital with the appendicitis and did not have these side effects.

yeah Chris hated morphine, but found the oxy worked better and he was far clearer in the head on it.

Hugs Lenore as you work through what is best at this point for Brian.

Hugs,

Sue

Lenore, my heart is with you. Thank you for sharing this thread--your questions and the answers they generate are educating many of us who will face this in the future.

You are doing a wonderful job. I wish for peace for you and Brian as you travel this road.

Becky

Becky said it better than I feel like I probably can. Thank you, Lenore. Take care, and hang in there. You are amazing. Big hugs. -Tara

Thanks everyone. It’s a relief to be on hospice regardless of if this ride is 6 months or 18. I was going to call for some more re Home Health coverage, expecting to private pay and they jumped in with nope, Medicare covers more hours than you are getting under hospice we can totally pick up with 4 with Medicare weekly.

Since I’m addition to all the other hellishness ALS is a cash pit, it’s nice to hear we DON’T have to pay for something.

Bonus round, Hospice Home Care has so far been idiot free. I have not yet met anyone I want to gut punch

hooray for bonus rounds!

Lenore, I'm happy to hear that hospice has been such gift. Looks like more realness is the biggest cost so far.

Not wanting to gut punch anyone is a fine thing. I know how it feels to deal with bloody amateurs on a salary and am lucky to report that the last weeks were idiot-free with our nursing service. It takes away soooooo much pressure to know your beloved in good hands.

I communicate some with a CALS in Holland, and she said she is blessed in their system to have basically all costs covered, but some of the Caregivers drive her nuts. I know we will get there but doing great with people for now.

Lenore that is wonderful news!

Hugs,

Sue

That's pretty much what we have in Germany, too. ALS here is not equal to financial ruin just lots of burocracy. I find the emotional side hard enough to deal with and have the highest of respect for CALS in other countries who have so much more to deal with.

Last fall I wouldn't have dreamed about stopping to work to care for my boyfriend. I thought we'd have it covered with nursing services. Well, turns out that's not really how life works. At the beginning of the year I got out of work to care for him, reading social benefits but no salary for six month. Now I have quit my job and will be unemployed. I'm not too scared because there is a safety net here and I tend to be lucky. I feel like someone will create a job for me once I need one. Bit of naivety never hurt.

It feels weird to even think about working. The beast makes your head spin more than once.

I'm so glad that it's working out, Lenore. Big hugs to you.
Becky

Thanks Becky. I think of you and your husband’s vent situation often. Hope all is going more smoothly.

I’ve been reading other posts here that give me even more respect for the things my husband wants to avoid. ALS is not “staged”, it’s to complicated for that but
Definitely understand not everyone wishes to be Steve Gleason.

In other random notes, does it bug anyone else to hear it called “Lou Gerhigs”? The man was one of greatest baseball players, some stats still unbeaten or even equaled and he is known for a disease? Seems wrong.

Lastly, in another thread I read about Wish’s mashed potatoes with a little mustard and nutmeg. It sounds Very German, and I must try it