A guide to preparing for and cleaning up a bowel movement in the bed when someone cannot sit on a toilet or commode.
My youngest son, James Strazza, moved in with me when his ME became Very Severe, and was no longer able to walk or care for himself at all.
The last thing James attempted as his ME was becoming more and more severe, was getting onto a commode next to his bed. His siblings lifted him onto it, but he did not have the strength to sit there and hold himself up. 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 in and out of his electric wheelchair to use the bathroom. Looking back at his extreme effort and difficulty, the Post Exertional Malaise (PEM) that he did not have time to recover from before needing to go again the next day, I should have begun toileting him in the bed a month or two earlier.
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 other Severe ME patients who, 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. 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. It’s time to start when they need the entire rest of the day or more to recover from one trip to the toilet. 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. Toileting in the bed is a good example of your opportunity to identify and prevent an unnecessary daily crash, if that’s their experience.
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, because I think silence allows a certain level of privacy as well. After I silently set him up to go, 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 for privacy (Baby quilt or throw without fringe, threads, or stitches your fingers might get caught in. Machine washable)
Small pillow for between their knees. (with a surface that’s easy to wipe clean, but mine has never gotten dirty)
2 pads – waterproof on one side – about 20” x 30” (I use disposable)
Urinal & washcloth (See female urinal pictured, from a Severe ME friend in NZ, who shared this link: https://a.co/d/5a7Myux )
Disposable gloves (Optional. I don’t use these.)
3-4 Disposable adult (large) washcloths/wipes
Toilet paper
Witch Hazel (a mild astringent cleanser)
Desitin (or other barrier cream), if needed
Bucket (I use the commode 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
Lower the bed to a flat position with your loved one on their back.
Remove their blanket and place a small, lightweight blanket over their underwear area. Reach under the blanket and pull the waistband at the sides, removing the underwear.
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.
Pull the blanket off their hips, exposing their toileting area, and move it onto their lower legs and feet to keep them warm.
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.
Place a urinal on a washcloth in front of them in case they need to use it while going.
Give them a call button, or their phone, so they can signal when done, and leave the room.
If they have a tilting (not just reclining) bed, they should tilt it so that gravity can help them go.
Clean-Up Steps
When they ring the call button, text, or otherwise indicate they’re ready for you, quietly enter the room and, if they normally live in the dark, ask them to put an eye mask on so you can turn on the light. If possible, try not to talk throughout the clean-up process.
Carefully pull the top, vertical pad away out from under them without moving the bottom pad, and fold it up with 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 with the waste into the bucket.
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.
If your person is a woman, use a wet wipe to clean between all of the folds, starting in the front and cleaning toward the back. Be respectful, but don’t be shy. It’s very important to be certain the entire area is clean.
When you have ensured that not one spec of waste is hiding (itchy butt would be horrible 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.
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.
When done cleaning them, 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 to pull them the rest of the way up.
Take the bucket to your bathroom. Turn the small garbage bag inside-out to pick up all of the dirty wipes and toilet paper. Do NOT put wipes in the toilet. Carefully dump the waste out of the pad into the toilet. 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.
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. That will all be natural and this will take hardly any time at all.
Your ultimate goal is to make this rountine a non-issue. Removing tension and stress is a priority for you because the physical effort of having a bowel movement could make them crash, and you don’t want to make it worse.
Thank you for your love, your hard work and patience, and your sacrifice to help someone who is suffering.
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