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epkennedy

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Joined
Jun 25, 2011
Messages
111
Diagnosis
03/2010
Country
US
State
Maine
City
New Gloucester
The days blur with the nights. The hoyer lift is my latest dance partner as we glide around the bedroom. My PALS began liquid morphine yesterday. Thankfully he is finally pain free however he is faced with many side effects: moody/ down; unable to urinate; constipation (which has had for some time, has only gotten worse); decline in a speech; not enough muscle strength to open mouth, and on & on & on. :(

Any suggestions re: not being able to urinate?
 
Sorry, Ernesta, I have no suggestions. But I'm sending you a hug and wish you the best in handling this.
 
Thanks! Miss everyone. Been so busy and exhausted to post. Hugs
 
Jason takes morphene (roxonol) 5ccs every hour per as needed, subqutaneously. I normally give him muralax with a tall glass of water with his hydrocodone through his PEG tube. He has a hard time with constipation with the increased mesds, so every third day we give him milk of magnesium in place of the muralax. If that doesn't work then we do another milk of mag with a glass of apple juice. If that doesn't work, then they try enemas or suppositories. Jason strains to pee, and I think he honestly needs a cath, but he is fighing me on it with every part of his being. Not sure any of this helps, but I hope it helps some. *hugs*
 
Thank you becca! Josh is fighting me on cath too. :-/ thanks for responding. Very helpful.
 
My sister too does not want a cath and is opting for bedpanning....I certainly would think that the cath would be easier on her. Last night she woke up to urinate and also could not....is that a muscle issue with ALS?
 
you've got a bit of the poet in you with your writing... I sure hope you're keeping a journal for yourself and your kids to look at a later date... not that you have time for that I know. I wish there was something I could say or do to help you, but I know there's not. Only thing I can do is to send you a hug and prayers for you and your family.
 
Dear Ernesta, I'm so sorry you guys are at this point. I do have experience with not peeing, beginning a couple of years ago--I was able to push my fist into my bladder and pee a small amount using The Fist. My family doctor told me that if I totally stopped, I was to get to the ER asap to be catheterized. I assume you have hospice and can call for the RN on duty to come out and do it--this is not something your husband wants to go through; I'm sure it's very painful to burst internally.

I have needed diapers ever since. Yes, this can be an ALS problem. I have painless spasms in my bladder frequently, in different areas. Some keep me from peeing, and some trigger peeing. I will get a cath, and eliminate some of the work load when the time seems right.

Ann xoxo
 
Ernesta ~

Jason has started to have problems urinating. It is like he is grunting to poop, only, it is just to get the pee out. I told him I think he is headed towards a catheter, which he strongly objects to. I talked to his nurse this morning and she said we are headed down that road. That if he is having a hard time peeing, due to the medications, then he is at higher risk of getting a UTI, and with putting in the catheter, it takes away the point where they are bearing down to try to get the pee expelled. But, of course, he is nervous about the insertion of the catheter. Looks like another stage in the journey in which it is going to take some time for him to accept this next stage in this journey.

*hugs*

~ Becca
 
Becca- sorry to hear about Jason's peeing issues. I wouldnt be excited about insertion either, but maybe the RN or Doc could put some numbing gel on the cath when inserting to help ease the discomfort. Remind him that it doesnt take more than a few moments to get a cath in (if theres no problems), and that it will be much MUCH more painful for him if his bladder gets full and he cannot expel it!
Also, and Im sorry if Im crossing a line here, but he may be worried about your intimate relationship as well... I know you are crazy busy and I wouldnt blame ya if that wasnt going on, but in his mind, he may be thinking that the possibility will be gone after cathed. This is a big deal for alot of people, as it should be. and unfortunately, he would be right in his thinking.
Good luck
 
Yes, one does understand the concern. However, if one does not have a prostate problem, it is not
that hard to learn to cath him at your will. Eddie now has a full time cath, he preferres it that way.
Not married and the caregivers are not constantly asking or wondering if he has to go.

I had a dwarf friend who I also knew all my life. He has since past on, but his care giver did not show
up one day and he was all alone.
He called me and asked me to come to his house and give a cath. I thought, "what" So, I did my
first cath with his instructions and it was quite easy. He had never had an infection. You can get
an infection either way, but practice good hygiene and the occurance is minimal. Again, it is
possible, but also a constant thing for caregivers. The continual cath is the easiest on everybody, but the sex
part does come into question.

Jim
 
Ernesta, Didn't comment on the stool's portion. It becomes apparent that even people without ALS have
stool issue's from time to time. So, having said that, most if not all will have stool issue's also.

Eddie just got home from a bout with an illies. (blocked bowel of some sort) Two weeks in the ICU.
At any rate, we are doing fine again. We even control stools for the most part with the Sapositories.

Having him go during the day while I am here is best. At night the caregiver is here alone. It is just
easier with two people. So, you can have some control, if that helps.

keep your head up, God bless you for what you do. :)

Jim
 
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