Hydration, nutrition and bowel/urinary incontinence

[JohnHMich]

I find myself trying to balance getting the nutrition and water requirements satisfied, while dealing with my wife's bowel incontinence by myself. The Hoyer doesn't help because I can't get the brief off. I have a shower chair that mostly works to get her briefs off, but it is a struggle. Worse when they have been used. I finally went to using an inspection mirror to help with wiping because I'd start to lift her off the shower chair and find that we had missed a spot. When she was in the hospital they just used chucks at night and moved her to a bedside commode if she was able to request toileting. Not a solution for being outside the house. Possibly a solution for when she is in her powerchair at home? Right now, if I have to change her alone, I transfer her from the wheelchair to the shower chair, clean her up, transfer her from the shower chair to the bed to get her dressed and then back to the wheelchair. It's doable once a day, but hard when it gets to be 4x a day.

What's the right tradeoff?

 

[lgelb]

It is less dignified but I would consider staying in the sling for toileting and cleanup after, to take less time overall. Nutrition and hydration do not trade off as well.

 

[affected]

I'm not sure how you have all that equipment when you are not at home, hoists and shower chairs etc
Would an adult diaper be worth trying when not at home?

Definitely not good to consider trade offs by reducing nutrition or hydration.

 

[Nuts]

If you switch from briefs to having her go commando with a chuck on the chair seat, tolieting will be much easier. She can either switch to wearing skirts or you can adapt a pair of pants. The simplest way is to open the back seam of sweatpants from the crotch to back waistband. If you search on adaptive pants you'll see some more elegant options. Absolutely have her remain in the sling (split leg), that way you can clean her up after you lift her up off the toilet. With this set up you can either transfer her to the toilet (still in the sling) or lift her from the chair or bed and place a bucket under her. It'll be an adjustment for her, but I can't imagine doing it any other way. Absolutely don't limit nutrition or water or you will have a host of other problems that you don't want to deal with.

I adapted sweat pants for my husband and no one ever knew that he was sitting on his bare butt (well, except the OT who reached under him to check the inflation on the seat cushion--boy did she get a surprise). If your wife is too modest for that, a light lap blanket will provide more privacy.

 

[JohnHMich]

After some struggle, three bits of good news. First, we got her started with a Purewick catheter. That is working out very well. That means her hydration level can be in the recommended range. And it means fewer trips to the toilet. Basically once in the morning for a BM. Then on the wick until bedtime. I got a purewick with a battery, so we were able to do dinner and a concert before turning into a pumpkin last night.

 

[affected]

That is such great news! I didn't even know about these, so it is great to know you could go out and enjoy an evening this way.

 

[KarstBoy]

After some struggle, three bits of good news. First, we got her started with a Purewick catheter. That is working out very well.

Got a Purewick for my PALS as well. She used one during a hospital stay a couple of weeks ago and I was very impressed. She's used it 3 or 4 days now and no more getting up 2 to 3 times a night to pee! Not only does it help me get some rest, it also has greatly reduced the hazards of getting her out of bed with the aid of a gait belt.

Her right leg is paralyzed as is her right arm. Her left arm is now getting weak. Trying to get her from the bed to a wheelchair and back with only a gait belt is getting scary. The Purewick has helped me cut out a few daily hazardous transfers.

 

[KarstBoy]

Now have a little over a month's worth of experience using the Purewick on my PALS and thought I'd post a note.

Something important that I've found is the need to protect the bed/sheets from urine leaks. I'm getting better at placement of the wand but it seems there is always a little bit of leaking onto the mattress. To protect the mattress, I always place an underpad (aka Chux Pad) beneath my PALS when using the Purewick. The pad is waterproof so there has never been an issue with urine getting onto the mattress. There have been a couple of occasions when I got the wand placed perfectly without any leaking but that is usually not the case.

 

[KarstBoy]

One other thing. If you are a Vet, the VA covers the cost of the Purewick.

 

[affected]

thanks for the update - definitely placement is always going to be tricky and if she can move her hips or legs even the best placement can be slightly dislodged. Keeping a chux pad under makes perfect sense.
How are you doing with keeping her well hydrated now and her nutrition up?

 

[KarstBoy]

How are you doing with keeping her well hydrated now and her nutrition up?

Haven't really worried about hydration because her meals for the last few months have been mostly dairy (cottage cheese, cream cheese, etc.) & fruit based shakes with lots of ice. Between the water in Kefir, ensure, milk & ice, she seems to be just fine on the hydration front. She also drinks thickened water between meals.

I do worry about the lack of protein variety in her diet but it has been very hard to get her to try anything different. I've have occasionally tried pureeing beans and that sort of thing (even quiche!) but she always goes back to wanting her shakes. It will soon be a moot point anyway because she is reaching the point of not being able to swallow at all without aspirating. At some point in the near future, she'll be on Jevity. She got her feeding tube installed a few weeks ago so it's ready to go to work.

 

[affected]

It sounds like you have really been able to think ahead a lot and try to be ready for as much as possible in advance.
Is she open to slow transitioning to peg feeds by having some by peg and what she enjoys most by mouth?
Hope you are doing ok in yourself, it's not at all easy as a CALS.

 

[lgelb]

To improve on the nutrition that Jevity and other corn syrup-based formulae lack (they are hard on the pancreas also), it is worth exploring Liquid Hope, Real Food Blends and Kate Farm, and/or blending some "real food," which is pretty easily done in a high-power blender like some of the Ninjas.