wife learning bowel program for husband

[newc6c7wife]

Yes he is at a rehab hospital. He has been there for 6 weeks now and he doesn't have any health issues that would prevent him from being put on a commode chair and set over the toilet. We have both questioned this several times and the nurses tell us it is because they don't have time. He needs alot of help still to transfer out of bed, so they usually just use the ceiling lift to make things faster. The therapists are working with him to improve on his sliding board transfers. 6 more weeks to go there at the very least. We have been married for 15 years now, and I think we both have a pretty good sense of humour, too. His optimism and positive attitude have made everything so far so much easier than it would have been if he had been miserable and bitter. This forum is so awesome! I came across it within the first couple sleepless nights after his accident and it has been an endless source of knowledge. Every night I learn something new

[reedyd]

I really do applaude you wives that are willing to do these things. I hope your husbands really do appreciate you. I have been on my own more or less through all this. God Bless my mom and dad who helped me early on. I am bessed with good help but then it has taken me years to learn howto find and hire good people. It is so easy to forget to thank the very people that love,and care for us.

Thanks

David

[1010011010]

I'm not sure how my reply would help but I hope it does.
Your situation is much different than mine, but I understand
that feeling. I disliked so much the care providers sitting
there waiting for Mom to "go". I wanted so much for her
to have that privacy.
When it came time to assist her in her care, I felt terrible
having to help her in that way.
It took me some time to become adjusted to that, but I
felt I needed to get over that in order to help her.
Again, our situations are different.

[Jeff B]

Originally Posted by newc6c7wife

We have no private insurance coverage, but we may qualify for 2 hours a day of outside help from a gov't agency, but they may determine that if I am capable of all of his care, then I will have to do it.

It is a good idea for you to learn how to do this for emergencies etc. but as suggested it is better for your relationship if you can have someone else help him with this on a regular basis. The threat of the gov’t agency deeming you capable of doing his care and cutting you off is unfair but to reduce the chances of this happening never admit to being capable or ok with doing this, especially in writing (even if you eventually are). A good doctor should be able to write some letter of support for this (your health, relationship health, your employment, family duties tc.).

Originally Posted by newc6c7wife

Another thing that bothers me is that they are doing everything in his bed right now. They say that they just don't have the time to get him up on the commode chair every morning, so they just leave him in bed and come back to clean him up later.

And yet they can somehow stretch out those 15 minute smoke breaks into 30 minute ones.

Originally Posted by newc6c7wife

Most mornings, he is served his breakfast before the bowel program is even over! How is this even humane! I can't wait til he can be home again, even if I have to take care of everything, at least it will be in a bathroom, over a toilet!

Terrible! One, he should be eating breakfast before starting bowel routine because it stimulates his body to go, and they should know this. Two, they don’t eat while on the toilet so why should he have to eat while going?

He probably does not want to cause problems or make enemies with the nurses but he will have to start speaking out to make them change this bad routine. If he needs to get the doctor to order this then that is what needs to be done. If he is at Lyndhurst, or in the Hamilton rehab for example they keep pushing “self directed care” all the time and when the patient starts to actually take charge (different from being demanding) then they are supposed to listen and follow direction (within reason, they are working for/with him, not as servants). A few nurses will always be lazy or bullies but most will be helpful if spoken with reasonably. In a rehab setting it is their job to get you on a routine that works so that you are ready to go home. Not just to get your routine done as easily as possible for them.

It is best if he self advocates when possible because they are required to listen to him more than to you, he will hopefully eventually be directing workers at home on his own, and he will be more in charge of his own situation, which is better both psychologically and logistically.

[Scaper1]

My sympathies. I remember this being the single most humiliating thing about rehab. Now it seems like a very long time ago.

For those recommending Lidocaine, do you use it in lieu of a lubricating jelly throughout the bp routine, or just a bit to insert the sup?

[SCI-Nurse]

Whatever rehab center he is in, the nurses should be ashamed of themselves. I hope they don't have the gall to call themselves rehabilitation nurses!! Have you spoken to the head nurse or patient advocate about these appauling conditions??

Originally Posted by Scaper1

My sympathies. I remember this being the single most humiliating thing about rehab. Now it seems like a very long time ago.

For those recommending Lidocaine, do you use it in lieu of a lubricating jelly throughout the bp routine, or just a bit to insert the sup?

We recommend putting about a TB. of the lidocaine jelly into the rectal vault about 5 minutes before doing anything, then use it to lubricate the suppository and also to lubricate any finger or device used for digital stimulation. A Uro-Jet is the easiest way to do this.

(KLD)

[rfbdorf]

KLD said it. Raise hell if necessary. Talk to the supervisor; go as high up as you can until things improve. It's your job right now to act as your husband's advocate - if you (and he) don't, no-one will. It's not about convenience for the nurses; it's about getting your husband in good shape - and both you and he learning how to keep him there.
- Richard

[UniqueRU]

"...to have and to hold from this day forward, for better or for worse, for richer, for poorer, in sickness and in health, to love and to cherish; from this day forward until death do us part."
You are strong woman. Don't be afraid, God is with you!

[reedyd]

Yes as already said he has rights and it may take some time but he needs to learn how to take up for his self. Do not take everything they tell you as policy.

Best wishes

[TheDuder]

Originally Posted by newc6c7wife

Yes he is at a rehab hospital. He has been there for 6 weeks now and he doesn't have any health issues that would prevent him from being put on a commode chair and set over the toilet. We have both questioned this several times and the nurses tell us it is because they don't have time. He needs alot of help still to transfer out of bed, so they usually just use the ceiling lift to make things faster. The therapists are working with him to improve on his sliding board transfers. 6 more weeks to go there at the very least. We have been married for 15 years now, and I think we both have a pretty good sense of humour, too. His optimism and positive attitude have made everything so far so much easier than it would have been if he had been miserable and bitter. This forum is so awesome! I came across it within the first couple sleepless nights after his accident and it has been an endless source of knowledge. Every night I learn something new

Learning how to eventually transfer on his own or with assistance will become huge in deciding how much independence he can have, including the bowel program. So i hope he really works hard and gets good training at learning to transfer which can feel impossible at first, until he eventually gets it figured out.

I'm also a C-6 quad and do my bowel program every other day with very little assistance from an aide. I transfer on to a commode shower bench that i later shower on. The aide puts a chuck pad under the commode and puts a suppository in an inserter which is made for quads with no hand function.



Then i simply sit on the bench until i start going. Eventually i use one of these to check if i'm finished or need help getting the rest out.




Once i'm confident i'm done, i wrap up the chuck and put it in one of those plastic bags you pack groceries in. My aide then comes in and throws in in the trash and since i'm already on the bench in the tub, it's perfect to take my shower next and get clean.

I've been paralyzed over 15 years so i didn't figure out this system right after getting home, but it didn't take all that long once i got transferring down very well. I got used to using the suppository inserter quite easily and it didn't take long learning when i was done via the bowel stimulator stick. Once i had that down, i needed very little help except for taking away the chuck pad underneath me.

So while helping your husband do this will likely suck initially for both of you, don't get to bummed out think it has to be a permanent deal so long as he can learn to transfer on his own or with assistance. Once he can learn to get on to a commode shower bench like this, he'll be on the road to doing his bowel program with very little to no assistance. Thankfully for him, quads at the C-6/7 level can usually learn to transfer, especially males who have the upper body strength. As i said earlier, while in rehab and trying to learn to transfer it can feel like a hopeless cause initially, but through effort, he should eventually perfect it if he doesn't let himself feel like he can't do it after initial struggles which surely will be there. When first learning how to transfer, i thought i'd never be able to get it done. I a few times wanted to give up because it seemed impossible. Then one day, bam it happened and from then on i just got better and better at it until it was easy.