Caregiver Perspective: What Goes In Must Come Out
One of the joys of having a progressive disease is that everything changes. Just as you adjust to one change, something happens and the “fix” you had in place is no longer working. As Lynn’s caregiver, I have not found his physician to be particularly helpful in warning me about things to come. If I ask about an issue, he will give me a prescription or a referral but he’s not much on home remedies or being proactive on warning on what I might encounter. Therefore, most solutions I come up with are things I stumble across and come up with myself and are not recommendations by doctors so you might want to talk to your doctor before you decide to do anything I mention here.
Now, my take on waste management…
Initially, the only issues Lynn had with waste management was constipation and that was managed with diet pretty effectively. Fiber supplements were added to smoothies resulting in regular bowel movements (and enough gas to fuel our four vehicles). However, over time his GI system adjusted to the added fiber, the gas decreased and all was well. During that time, he was still very mobile and physically active.
As his ability to move around became more and more difficult and his activity level became less and less, he also began to take in less food and less fluid and has had some issues with constipation. We tried diet changes again but that hasn’t had much effect. One day I saw pediatric glycerin suppositories in the pharmacy. I got the idea that maybe what he needed was just some lubrication to help move things along. We tried them and they worked. Being pediatric, they are very comfortable to use and only have a very small amount of glycerin so there is not an issue of needing to get rid of a lot of glycerin in the emptying process. The only drawback to using them that I have found so far is that if I want to hire a nursing assistant to care for Lynn if I’m not home, I can’t because they are considered a medicine. Only a nurse can give them. (It doesn’t matter that you can pick them up without a prescription in the drugstore and anyone can use them. A nursing assistant by law cannot give a suppository because it’s considered a medication even if it’s ordered as a method to help her patient go to the bathroom. Ridiculous, right?)
Over time, having bowel movements has become a greater challenge and now ranks right up there as our most dreaded event of the day. We have been known to pray for a successful trip to the bathroom; no joke. I’ve even done a happy dance on occasion. We make life decisions around the toilet now. Lynn has very little muscle power to push. Therefore, I have to help. I use suppositories and enemas to lubricate and expand the colon but I have to use my finger to stimulate an opening in the rectum to encourage evacuation. I also have to manually push on his abdomen to help force the movement of the fecal matter down the intestine to the colon so it can empty. All of this is very physical for me and I get into some very awkward positions to be able to do it since he’s sitting on the toilet at the time and I’m working around him, holding onto him at the same time. I have a belt around his waist for me to hold on to so that I can control his upper body and he sits between hand rails to keep him from falling to either side. He’s very secure. Plus we installed a taller toilet so his legs and feet sit comfortably on the floor for stability. I position his legs so that support him like a tripod as he leans forward. It works but it can be a little uncomfortable for both of us.
Every morning we have our regular routine all aimed toward the “bathroom event.” He gets up, has hot tea (heat and caffeine to stimulate the bowels), exercises (to get the blood flowing to the bowels), he takes his medication (just because he has to), I take off his shorts and get him into a lift to go to the toilet and off we go…. That time frame could last from 15-30 minutes or more and it really wears him (and me) out. We actually listen to the Bible while we are in there as a good distraction so it doesn’t feel like we are wasting time. Oh, and he takes Polyethylene Glycol (Miralax or something similar) ever night to keep his stool soft enough to easily move.
Here’s our toilet routine. This is gross so don’t read it if you have a weak stomach.
- Step 1 - Priming – Glove up and insert 1 pediatric glycerin suppository and wait for sensation that it’s working.
- Step 2 - Glove up, lubricate gloved finger or wipe with baby oil – stimulate opening and insert finger. Rotate finger till rectum opens and fecal material begins to evacuate.
- Step 3 - Glove up, lubricate gloved finger or wipe with baby oil check to see if anything still remains in colon; if so, put on clean glove and insert anther suppository.
- Step 4 - Allow second suppository to work; when ready, put on glove, lubricate gloved finger or wipe with baby oil, stimulate opening and insert finger. Rotate finger till rectum opens and fecal material begins to evacuate.
- Step 5 - Glove up – lubricate gloved finger or wipe with baby oil, check to see if anything remains in colon, if so, try pediatric enema this time.
- Step 6 - Glove up, insert pediatric enema.
- Step 7 - Glove up, lubricate gloved finger or wipe with baby oil, stimulate opening and insert finger. Rotate finger till rectum opens and fecal material begins to evacuate. Usually by now it’s empty. If not, repeat finger after waiting a while. I don’t usually put anything else in after an enema; I just dress him and come back later in the day.
- Step 8 - Clean him up.
I use flushable wipes to clean up and I also cover my gloved finger with a flushable wipe which I lubricate with baby oil a lot of the time. Only use flushable wipes; not diaper wipes or you will stop up your toilet and septic system.
Bowel issues are a real problem. Can’t really go out in public if there’s a question of possible diarrhea or the need to go to the toilet in public; those baby changing tables just don’t hold adults very well and picking them up off the floor after changing them just isn’t a good option. Also, have you noticed that doctor’s offices avoid checking their bottoms or doing any procedures where they might have to put them on the table to check them out? That annoys me. I understand the difficulty but think of what they might miss. Buttock wounds are so common for people who have limited mobility or incontinence issues that checking “down there” should be a priority; not something they avoid.
Anyway, this is a delicate subject that I have been hesitate to write about but one of my followers asked me to share what we did so here it is. I hope it’s been helpful to those of you who are in the same situation and for the rest, hope you never have to “go” here.
Have you experienced any of these vision symptoms? (select all that apply)