16 replies to this topic

[smj]

My 20 year old brother is a new C4/5 quad. A major dilemma that we seem to be having is with his personal care. I'm his primary caregiver because our mom works out of state and is only home every other weekend so basically its just me and an aide who comes in for a few hours a day. He pretty much refuses to allow either of us to perform his bowel program (I'm female and the aide is male) so I feel like his health is being compromised by this. What are some things I can do to alleviate his embarrasment (doesn't bother me at all to perform these duties....heck he doesn't have anything I haven't seen before) and is there any tips for making it as quick and least embarrassing as possible?? Thanks for any tips you can give me!!

[alyssa]

One thing your brother should know is that the lack of a bowel program can lead to autonomic dysreflexia which in turn can lead to much worse than SCI.
As a c4-c6 quad myself, its a huge life change. What your brother is feeling is normal. Hes probably trying to find ways to deal with it. Maybe hes uncomfortable with you, as his sister performing such private things on him such as his bowel program? Try using humor to lighten up the situation, dont make fun of him...but make him laugh. Do you think maybe having a female aide would make him more comfortable?
I read your other post where you said hes afraid to go out because of accidents. Does he realize that a bowel proggram is a good accident preventative?
i know my post kinda jumps all over the place but i hope i helped...

Edited by alyssa, 26 July 2007 - 04:07 AM.

[smj]

Thanks Alyssa, this makes a lot of sense because every (well almost) symptom is lissted and i guess i just have to do what i have to do sooooo....thank you for answering my question directly, however, humor is not doing the trick...........I don't have a lot of options because we just do not have a lot of family to assist us financially so its basically up to my mom and our insurance...my brother is not so worried about male or female as it is the whole situation.....he hates what has happened to him and just will not accept it.. However I KNOW that what he feels surely must be temporary and at some point must be willing to accept help.....i love him and i dunno what to do in this kinda stch.....

Edited by smj, 26 July 2007 - 07:35 AM.

[Cheshire]

I'm not quad, but the thing that made me accept help when I was still in the hospital and first month at home was when my mom (caregiver at the time) got frustrated and told me the consequences of NOT doing what needed to be done. For me, it was possible impaction of bowels and back to the hospital to fix it. Talk about a 180 in attitude! (Okay, I was still not happy with it, but was definately not going back to the hospital.)

Agree with Alyssa. They need to know what their actions or lack thereof will result in. Just be kind in telling.

Edited by Cheshire, 26 July 2007 - 12:00 PM.

[alyssa]

Cheshire, on Jul 26 2007, 07:59 AM, said:

I'm not quad, but the thing that made me accept help when I was still in the hospital and first month at home was when my mom (caregiver at the time) got frustrated and told me the consequences of NOT doing what needed to be done. For me, it was possible impaction of bowels and back to the hospital to fix it. Talk about a 180 in attitude! (Okay, I was still not happy with it, but was definately not going back to the hospital.)

Agree with Alyssa. They need to know what their actions or lack thereof will result in. Just be kind in telling.

I couldn't agree more. Reminding me that I could end up back in the hospital is enough to get me to do pretty well anything....

[edlee]

I'm not sure I understand. Is his problem with the program or taking assistance during the program? Obviously something is happening, and he is either taking care of it himself or he smells pretty bad by now.

If he has sufficient hand and arm function, he may be able to do it alone. If not, he will have to learn to accept assistance as needed.

This is something he is going to have to come to grips with eventually. It is never easy. I wish you both luck.
ed

[alyssa]

edlee, on Jul 26 2007, 04:44 PM, said:

I'm not sure I understand. Is his problem with the program or taking assistance during the program? Obviously something is happening, and he is either taking care of it himself or he smells pretty bad by now

or has a very distended belly...

[smj]

Thanks for the input....no Ed the problem isn't with the program itself, its with the doing of the program....but actually to me the program seems ridiculously long...the doctor prescribed digital stim then manual evac, THEN a mini enema.....is all this really necessary??? I can't say I really blame him for being sick of it because I'm fairly certain that the program would work without the enema, but I'm afraid to go against the doctor....

[alyssa]

smj, on Jul 26 2007, 09:53 PM, said:

Thanks for the input....no Ed the problem isn't with the program itself, its with the doing of the program....but actually to me the program seems ridiculously long...the doctor prescribed digital stim then manual evac, THEN a mini enema.....is all this really necessary??? I can't say I really blame him for being sick of it because I'm fairly certain that the program would work without the enema, but I'm afraid to go against the doctor....

Ask the docotor about a supp called the magic bullet. you'll still probably need stim and manual evacuation but not an enema...

[alyssa]

i think happycrip pretty much covered it all...

its been a few days since your 1st post...any luck?

[edlee]

I,m familiar with the mini enemas. They were prescribed for me, too. They are basically supositories and are used as such.

I found that my body insists on voiding something every night regardless of any routine I try, so,,,,,I stopped using anything except digital stim and manual evac, but do it every day.

The process is shorter but done more often. So far it's working pretty well as long as I don't binge on fatty foods.

No matter the process, it will take time to get it down to a set routine that works for you.

Oh, and accidents will still occur, so a sense of humor is definitly an asset.

Hang in there.
ed

[ziggy]

Have him buy these

http://www.sammonspr...p?Leaf_Id=6402#

I'm a C-6 quad and dreaded bowel programs more than anything after having my injury.I had embarrassing things happen like popping boners in front of my mom while getting dressed,but nothing was more humilating than having a person stick a finger up my ass to help me go to the bathroom.

I got the above products and with a little practice,learned to do it myself.The home health aid puts the magic bullet into the inserter and lays a chuck pad under the commode/shower bench in the shower and lets me be.I use the inserter to put in the suppository,usually within 5-10 minutes it starts to work and i go.Once i stop going on my own,i use the other thing to check if i'm done or work as the dig/stimulator instead of a finger.In most cases the whole thing in done in roughly 45 minutes or so.I call the home health aid and she grabs the chuck and throws it in the trash,all done with very little of that dread i used to have.

The nice part is since i'm already on the shower bench in the tub,i just take a shower right away and i'm all clean because the bowel routine makes me sweat from minor AD.

Even if your brother can't figure out a way or takes time to with these tools,at least he can avoid the extra awkwardness of you having to stick your fingers in him.I would think also he would feel less embarrassed if the aid did it than his sister,maybe set it up on days he/she is there.I do mine every other day and rarely have accidents in between.Think of it this way,if you were paralyzed,would you prefer a home health worker helping you do this and being around you naked,or your brother?

BTW,here is a link to the Magic Bullets

http://www.medicalsu...CFSCTWAod7WvhmQ

[hockeydahc]

thats what I said on the other post of hers.

it's noble to be willing to do it, but on teh receiving end, creepy having your sibling help you poop.

[smj]

Well he totally had a great "whatever"ship with the male aide I hired.....guess some bois would rather have boys than girls perform their required regimens than others......

xoxo -smj

[edlee]

It's about the testosterone!!!

[smj]

edlee, on Aug 16 2007, 01:49 PM, said:

It's about the testosterone!!!

lol, yeah i guess that could be it hehe

[SpeedyBK]

Hi smj, I'm the opposite about having a guy do my bm, it's more the fact because of there hand size and not really the gender. I'm not sure what exactly your brother can feel, but i know that even though I'm cosidered a tetra because of my really high break. When someone puts there finger in most times it can be almost painful but it's not like a normal pain. But lately I've been starting a new lax and can feel when I'm really needing to poop. No still have to stick with my schedule of every other day with my suppository at 5: 00a.m. However I do have more of a sense of what i need and where the actual poop is up inside and at time will refuse my suppository and have my nurse push once and hold exactly where i feel it. When i do that my body can push about 80% of my poop out without any more help. I always let them finish my bm because i can't feel it after enough pressure is gone. Also if he would like to let his body do more please let him try just the mini or the digital and then cover all of him to make him very warm, when I'm warm it will bring it down if not all the way out.

Brett

SpeedyBK Aka