When you are a freshman caregiver, there are certain things that just don’t seem to come up when (or if, maybe) they’re telling you what to expect on the road ahead. For me, one of the things professionals left out time and time again was what to expect when a person living with Alzheimer’s requires ostomy care.
My grandma has a colostomy. If you don’t know what a colostomy is, basically it is this: a pouch that collects stool in a bag on the outside of your body, normally southeast of your stomach.
In many ways, my grandma’s colostomy has been a gift. For the most part, it is easy to keep clean. It has greatly reduced her chances of skin breakdown in that area, a concern for a great many people who are bedbound. It has been a learning experience managing her “output” (a medical, discreet way of saying, “s*%t”) with her diet and medications so she doesn’t get the runs or, worse, blocked up or get the runs. In general, though, it is much easier than providing care for someone who has bowel incontinence.
The major pitfall to a colostomy is that it get reaaaaaallllly messy when things go wrong. And even though I always say that anyone can do anything if they just get used to it…. ostomy care is not for everybody. One of my grandma’s Sidekicks vomited in the sink at the sight of the colostomy output. We mutually agreed it wasn’t going to work out 🤢
I’ve been taking care of Grandma’s colostomy since 2017. It became obvious as she declined mentally that she was not able to keep track of her output, empty it in a sanitary way, change the appliance properly… and she kept having mishaps. I got a lot of calls in the middle of the nite for a biohazard clean up. Grandma was able to empty it mostly on her own for quite a while, but eventually the Sidekicks and I took over emptying it and changing it completely.
Lately, mainly at nite and when she is loopy from sleep, an infection, or pain, she’s been opening her colostomy bag up and letting it out wherever or, worse, taking it off completely.
Grandma’s train of thought:
Wow, this bag seems like it needs to be emptied.
I should empty it.
I’m not sure where to empty it.
F*%k it, I’ll just empty it right here.
A recent example:
On a Friday night not too long ago, I left Grandma alone in bed for a few minutes. When I returned, I discovered a small stream of sh*% running underneath her chuck on the bed and all over the floor!
My first thought was, how did this happen? Maybe her colostomy isn’t working. I called the on-call hospice nurse with the quickness. Even the nurse couldn’t help but jump to the worst possible conclusion: “Sometimes colostomies don’t last forever.”
Once I calmed down a little, I went back in and examined the scene. I rolled back that beautiful bean footage and saw that Grandma had opened her bag. Somehow all of the stool went underneath the chuck she was laying on, which made it appear as though it came out of her bottom. What a relief.
After some deep breaths, I cancelled the on-call nurse and put my brave face on to commence with the biohazard cleanup. I threw the soiled chuck and towel straight into the trash. There was no way I was salvaging that, okay?
Thankfully, she’ll forget this nite. But me, I will remember it forever. Events like this tend to be quite traumatic in nature.
I’ve tried colostomy bag covers. Those only seemed to increase the likelihood of her ripping off her bag because it made it feel extra foreign to her body. I’ve been considering making a type of elastic wrap that would cover her whole midsection and fasten on the side so she can’t even get to her bag to open it up or take it off.
I’ve learned more about the gastrointestinal system than I ever cared to know. Much of this is through lived experience.
So, if you’re new to caregiving and ostomy care, here are some pointers.
- Ostomies bags and apparatus (like catheters, feeding tubes) are foreign objects. A person with Alzheimer’s is likely to remove them if they are in a delirious or confused state, because they don’t know it’s purpose. Be prepared for that part of their decline.
- Keep the bag clean. If the bag is full and nobody is present to empty it, the person will find a way. The more you can keep it clean and close to the body, the less noticeable it will be. For the same reason you don’t leave stool piling in a toilet, you should keep a person’s bag clean or support them to do so.
Bonus tip: If you’re going to leave the house, make sure it is empty before you go. There’s nothing worse than having to leave something you enjoy because of an impending biohazard cleanup.
- You should get an Ostomy Nurse when it is first installed to help you understand how to care for it. If you are not offered one, demand it. If your loved one is capable of caring for their ostomy, great. YOU SHOULD STILL LEARN in the event you have to take over. Take it from me, it may happen sooner than you think.
- Try not to learn how to care for an ostomy in a stressful situation. If your loved one is in a care setting and transitioning home, see if the home health company or the hospital can send the Ostomy Nurse there, so you can learn how to care for it in your “natural environment.”
- If your olfactory senses are sensitive, I’ve heard you can put some Vicks Vapor Rub under your nose when it’s time for personal care. Honestly, the smell doesn’t bother me too much, but we do use a lot of diffusers around here. Also, I’d you plan to use Vicks Vapor Rub in the future, I wouldn’t use it now. You can develop aversions to these types of things, you know.
- Learn how to do food alchemy. What we eat has such a large influence on how our bodies work, and a person with a colostomy is no exception. Just like with anyone else, certain foods are more likely to cause diarrhea , constipation, and even blockages. The kind folks at Ostomy Care Center gave me this Ostomy Reference Chart and I have sworn by it ever since. It is important to learn about digestion and how the food you serve affects your loved one.
- Stay on top of your inventory. It might be easier to order supplies online or have someone like a nurse do it for you, but I recommend getting your ostomy care supplies from a locally-owned ostomy supply place (if there is one) so you have people knowledgeable about ostomy care on your team. I recommend having lots of washable (we have almost 10) AND disposable chucks on hand.
- Keep a designated space for supplies. I have always kept Grandma’s supplies in one, easily accessible place so everyone knows where they are. I’ve written the instructions for changing the bag on the box (just in case) and each time I get new bags, I stick them in that same box and throw the new, empty box away.
- Prepare to do a lot of cleaning and sanitizing. I don’t have much to say here except that you’re dealing with an internal organ and excrement. Wash your hands frequently and use antibacterial cleaners to make sure your environment is clean. Wear gloves when you’re caring for an ostomy and cleaning up afterwards. And don’t be afraid to throw soiled clothes, towels, and linens away. I know none of us are rolling in the rough here, but sometimes it’s not worth the effort to save it.
- Lastly and probably most important, stay calm. An ostomy is not the end of the world, and just like anything else—if you do it long enough, caring for one becomes second nature. When biohazards and blockages come up, avoid knee jerk reactions and freak outs. It only makes things more challenging.. Breathe deep (through your mouth, haha) and tell yourself it’s only temporary. You’ve got this!
Do you have experience caring for someone who has Alzheimer’s and an ostomy? What advice would you have for others who are new to ostomy care? I’d love to hear from you. Drop a comment below and let me know what’s on your mind.