Hold on Tight...

Thanks all and yes Lori, I did talk today about the very fact with the Dr and he ordered a multivitamin and mineral complex and IV hydration plus drinking water.

The last thing we need is a dehydrated Brian!

Lenore I’m happy to hear they are getting him well cleaned out. I hope he can stay that way.

Buckhorn, I’ve always had to do Brian in bed, no other option for us. Not pretty, but it gets done. I also use a lot of massage on the lower abs while doing so.

Hugs

The hospice plan appears to be making his still loose enough where this does not happen again. I did not appreciate the lecture from hospice yesterday that with the looser stools he would need more care coverage because “ if he is in stool for two hours it increases his chance of bed sores”. Well yes but I can tell you right now that while I am increasing coverage (time to wave goodbye to another $1200 a month ) I do sleep all night because I work all day, so there may well be times of having a messy Depends on for a few hours. My xperience in home care from the provider end tells me that is typical -and long term care is usually even worse.

Brian is dropping the regular morphine and going with Oxy for occasional use only. It has effected his mood, really messed with his bowels ( in addition to the inactivity and diet situations). I got the feeling Hospice was not pleased with that when we spoke. Well, so WHAT? I feel like they have been allowed by me to take too much control and I’m a bit weary with that. They started morphine too soon and mismanaged this bowel situation from the start. Don’t even get me started on the Hoyer Lift mess, finally got that straightened out.

Tillie, Sue, Buck your stories are heartbreaking. Lori I love how you always have the most practical advice ( and the best car avatar ever!). With the work combined with all the complicated emotions, we as CALS sure do go the distance.

I corrupted a friend’s niece this week. She and her fiancé are paying for their wedding, no parental assistance. They both have good jobs ( he is finishing his MD residency, she is a Director with a non profit). Her dad lectured on being frugal and saving for a house. I told her that was great financial advice and practically speaking he was right. I also told her that hopefully you only have one wedding and you should have what you want unless you will impoverish yourselves/ go deep in debt. We had a splashy wedding and no regrets. My friend called me up laughing. She asked what I said to their daughter. They booked our football stadium ( new, fancy stadium) for the wedding and reception and a lavish European honeymoon after having talked about being economical. The bride told her mom they want good memories when hospice comes knocking.

Ahh, many jobs these days. Wife, daughter, friend and now corrupter of the youth

Lenore - please don’t forget, if this particular Hospice is not working with you, you have every right to leave them and choose someone different. We as CALS have a better handle on our loved one than those only there a few hours a week.

Cute story about the young couple.

Hope your day only continues to go up.

Brian is doing better this morning, Best he has sounded in weeks. I would actually like them to keep him
Another day or so, see how the new bowel problem works out, make some more progress against the UTI. His white blood counts and blood sugar are back to normal.

I feel better because last night he talked about getting to spend some more months with me. I realized that he felt more and more like “the patient” and last night and this morning he felt more like my husband again.

As I sit in this house though the past two days alone though, I see all the more how it’s our house, this is where our life together happens. This is where ALS has happened. I don’t think I will want to keep it indefitely after he is gone.

Happy to hear Brian is on the mend and doing better.

I agree with your thoughts about the house. I feel pretty much the same way about ours. Tough part is I love the layout of this house, but memories not so much.

Hugs

Glad to hear Brian is feeling better. Hope the little upswing continues.

Sounds like you both are in a better place today!

Oh no he has a UTI as well, or did I miss that earlier?

I'm so glad he is feeling so much better, and I hope you can kind of regroup internally a bit as well so you can make the most of things when he gets back home xxx

Sigh... Brian is okay but still trying to straighten out the bowel program. I’ve been saying and saying that he gets major constipating effects from opiates.

Wellll, lo and behold they try Night one of the Senakot S dose and he has 7 bowel movements during the night. No opiates since Friday and it now seems every time they give him a laxative type drug his bowels go wild.

On opiates, we were throwing max dose of Senna and. Daily Miralax at him and it still was not breaking the impaction cycle. Every time I said “opiates” hospice blamed ALS. I realize that ALS can stop the ability to move stool but what Hospice staff consistently failed to see was that just because it CAN does not mean it DID.

At this point, I am going to bet that sans opiates Brian will barely need a bowel program for the time being. It’s also true that in the hospital he started being fed more fiber foods like oatmeal instead of just all liquid diet.

Anyway, he may be in today still while they work more with the bowel “program”.

Lenore I found that the problem is that while we are not doctors, therefore have no 'authority', we know our PALS better than anyone and should be part of the decision making team!

Just a thought, Lenore, but can the opiates be replaced with something else? My husband uses medical marijuana and experiences no significant side effects. It helps with not only his pain, but also his mood.

Not sure if it's legal in MN.

Just a general reminder that 1) as someone else pointed out, you can bail any time on any hospice, or bag the concept entirely and 2) they work for you. Your best instincts are typically a more reliable guide than the hospice playbook.

Oh, and keep corrupting those youth, Lenore!

Yes, Lenore - is there an option other than opiates that Brian could use? What is he on them for - I am assuming pain, but how intense/where, etc? Opiates are known to cause constipation (severe at times) even in "normal" healthy/active people. If your hospice team does not know that or is denial of that fact, then, - wow - ditto what Laurie said!

Medical marijuana is available in MN. It is expensive from what I've read and not covered by insurance.

I'm glad that things are getting sorted. I agree. If your hospice doesn't understand that opiates cause constipation - just wow. Is there another hospice option?

Please excuse me because I don't know what was posted before. That said, perhaps this web site can help. https://www.medicalnewstoday.com/articles/313416.php?sr

* I'm not proscribing - just presenting information.

*There are various sections on different subjects: laxatives: type; how they work, side effects, cautions; safety; natural alternatives; poop; etc.
*There are lots of helpful sections on MANY OTHER digestive concerns and health related to them. (I learned the time it takes to digest food: male/female comparisons.)
* I found the site very helpful - saving it for the future. (Watch out for ads.)

THEY SAID: *Extra Virgin Olive oil, dark Karo syrup, apple or pear juice, pureed prunes; over-the-counter stool softeners can help prevent constipation. There's old fashioned Castor Oil, but stimulating bowel contractions for very long can increase dependence.
*The fats in olive oil can help make the insides of the bowel smoother, making stools easier to pass. It can also help the stool hold in more water, keeping it softer.
*One tablespoon of olive oil, taken on an empty stomach in the morning, may relieve constipation for many healthy adults. Taking more than this amount can lead to diarrhea and cramps and is not recommended.
*Dark Karo Syrup: (Don't use if you object to genetically engineered corn). The American Academy of Pediatrics recommend a small amount of apple or pear juice, Karo syrup, or pureed prunes for infants. (Wouldn't hurt to try for adults. Just increase the quantity.)
*For some people, coffee can increase the urge to go to the bathroom. This is because coffee stimulates the muscles in your digestive system (36, 37).
*A recent review found that probiotics seem to treat functional constipation by increasing the frequency of bowel movements and improving stool consistency (48).
*To include probiotics in your diet, try eating probiotic-containing foods. Examples include yogurt, sauerkraut and kimchi, which contain live, friendly bacteria.
*Alternatively, a probiotic supplement, taken daily for at least 4 weeks to see if it has any beneficial effects (49)....(And so on.)

*All of you present helpful information, questions and suggestions, especially pro-actively for new members. I'm very sorry you have these trying experiences. I wish no one did. I hope they can be quickly resolved. B.