• Galen Warden

Toileting in the Bed

Updated: Sep 9


James is 100% bed bound and extremely sensitive to light and sound.
James Strazza

A guide to preparing for and cleaning up a bowel movement in the bed when someone with Long Covid or Myalgic Encephalomyelitis (ME) becomes too severely ill to get onto a toilet or commode. From Galen’s forthcoming book about caring for her son, James Strazza, with Severe ME.

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The last thing James attempted when his ME was becoming more and more severe, was getting onto a commode next to his bed. He was no longer able to pull himself over to the side of his bed and “fall into” the wheelchair, drive himself to the toilet with the joy stick, and get on and off of it. I had installed a bidet in his toilet so that cleaning his rear would be easier, but he was only able to use it a few times before the effort was too much.


Finally, desperate to retain a modicum of dignity, he tried to use a bedside commode.

It took a four people to lift him onto the commode, but once on it, he was not able to hold himself in a sitting position. Thus began my journey of toileting him in the bed.


When Should You Consider Toileting in the Bed?

If I could go back in time I never would have allowed him to struggle to get to the bathroom. I would not have gone to the expense of the bidet. As soon as I saw the effort and difficulty, the Post Exertional Malaise (PEM), I should have begun toileting him in the bed much sooner.


But I had no guidance, nothing like this document. I was not just apprehensive about doing it, I was completely lost about how to do it. I knew that other Severe patients, even though they spent every minute of every day in bed completely exhausted, could make it to the toilet once a day. Some in a wheelchair, some even walking those few steps. But looking at James, I knew this was not his situation. It was beyond his ability. The crashes grew worse every time.


If I’d only known that, very soon, he would not even be able to lift his arm, to even put one bite of food in his own mouth or scratch his own face, I would have realized that pushing - only for the sake of his dignity - was a huge mistake. I’m telling you now, so that you can judge your situation. You now know when — when they need the entire rest of the day or more to recover from one trip to the toilet — and you now know how, provided below. Spare yourself the agony of caring for someone in even worse shape than they are today by taking on this mundane task, as unpleasant as it is. It’s worth it. In Crash Prevention I outline clearly the value of never crashing. Here is a prime example of your opportunity to identify and prevent an unnecessary daily crash.


Attitude is Everything

I’ve found the the most loving thing you can do throughout this process is to remember how embarrassing this is for them. It’s worse for them than it is for you. I don’t speak at all during the entire set-up and clean-up. I leave James to his thoughts, his dignity, and I think silence allows a certain level of privacy as well. After set-up, I simply ask whether he needs a urinal before I leave the room. Let love guide you in all things, but especially in this most vulnerable of all situations.


Here is the method we have landed on for the most efficient and least embarrassing process.


Supplies:

  • Small, lightweight blanket (baby quilt or throw without fringe. Something without threads or stitches your fingers might get caught in. Machine washable, of course.)

  • Small pillow. (I use a small decorative couch pillow with a surface that’s easy to wipe clean, but it’s never gotten dirty.)

  • 2 pads - waterproof on one side - about 20” x 30” (I use disposable)

  • Urinal & washcloth

  • Disposable gloves (Optional. I don’t use these.)

  • 3-4 Disposable adult (large) washcloths/wipes

  • Toilet paper

  • Witch hazel

  • Desitin or other barrier cream (if needed)

  • Bucket

  • Small garbage bag

  • Fresh underwear

Before you enter the room, take a long, slow breath and calm yourself. You are an angel now, not a frustrated or distracted mom, dad, spouse or caregiver. Walk into the room bringing with you the peace and security you want them to feel in this vulnerable moment. And they will.



Set-Up Steps:

  1. Lower the bed to a flat position with your loved one on their back.

  2. Remove their blanket and place a small, lightweight blanket over their underwear area. Reach under to pull the waistband at the sides, removing the underwear.

  3. Keeping the little blanket on, place a small cushion between their knees so they can turn onto their side, away from you, bending their knees and moving their feet away, so that they’re in a “sitting position,” but lying down.

  4. Pull the blanket off their hips, exposing their toileting area, and move it onto their lower legs and feet to keep them warm.

  5. Create a “T” with the two pads and slide it under them with the vertical pad on top. Fold the top (vertical) pad up onto their hip, so it loosely covers their rear.

  6. Place a urinal on a washcloth in front of them in case they need to use it while going.

  7. Give them a call button, or their phone, so they can signal when done, and leave the room.

  8. If they have a tilting (not just reclining) bed, they should tilt it so that gravity can help them go.

Clean-Up Steps:

James is ready to be cleaned up. The top pad is soiled. He's wearing an eye mask so I could turn on the light and clean him up.
Ready for Clean-up

  1. Enter the room with the bucket, wipes, toilet paper, witch hazel, cream, and clean underwear (never reuse underwear)

  2. If they normally live in the dark, ask them to put an eye mask on so you can turn on the light.

  3. Pull the top (vertical) pad away from them without moving the bottom pad, while folding up the waste. Don’t open the pad to look at it. (The more you expose the waste to the air, the stronger the odor in the room will be, and it won’t leave as quickly.) Place the folded pad into the bucket.

  4. Depending on the kind of waste on them, clean up in stages: Extra messy: start with toilet paper. Not too messy: start with wipes. Clean the entire thigh area. If they tell you you missed a spot, DO NOT ARGUE. Just clean that area again, to their satisfaction. I know you are doing your best, but they are probably freaking out to some degree. Debating, or resenting, their corrections will only ratchet up their stress. Your goal is to accomplish this with the absolute minimum of anxiety for them.

  5. When you have ensured that not one spec of waste is hiding in their anus (because an itchy butt will be horrible for both of you later), you are done. If there is a little blood, or if you can’t seem to get them thoroughly clean, soak some toilet paper with a little witch hazel and hold it in there for a few seconds to soak the area well with the mild antiseptic. It could potentially sting them, but if it’s necessary, please do it.

  6. Apply a small amount of barrier cream (Desitin, for example) if there is irritation. Make sure it’s a very thin, light application, so that they don’t feel the cream.

  7. When done with clean up, position the little blanket back up over their underpants area and pull the bottom pad out. If they need darkness, turn the light off. They will take this as their signal to turn back onto their back. Carefully pull the clean underwear up under the blanket and, hopefully, once you get them up to the top of their legs, they will be strong enough to lift their hips momentarily and pull them the rest of the way up by themselves.

  8. Take away the little blanket and the pillow, replace their covers and, if allowed, give their foot or leg a very gentle loving squeeze before you leave the room with the bucket. Communicating in any way you can that this is OK. They are loved. Their vulnerability is safe with you.

  9. Take the bucket to your bathroom and use the small garbage bag inside-out to pick up all of the dirty wipes and toilet paper. Do NOT put wipes in the toilet. (I also don’t put the toilet paper in because sometimes it’s difficult to tell them apart.) Carefully dump the waste out of the first pad into the toilet. If it’s become compacted in the pad, it may clog, so let it soak before flushing. Place the pads into the bag, knot it tight, and discard with your trash. Even a small amount of human waste will attract flies, so it’s best to remove the knotted bag to outside your home as soon as you’re done.

  10. Use a low-scent anti bacterial cleaner to clean the bucket thoroughly, even if you didn’t get any waste on it. And you’re done.

Don’t be discouraged if this seems extremely arduous at first. After a while it will become very routine for you. You won’t have to consciously think about the supplies, the steps, or the silent kindness. They will all be natural and this will take hardly any time at all.


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