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Jazzy2 Asked March 2017

Once again, I sit here with little sleep while my husband peacefully sleeps the day away. How much longer can I go on?

 I'm constantly up at 2 am or 6 am or both, cleaning up after a husband with diarrhea. It starts with the smell that wakes me up and ends with a 3 hour ordeal of showering, cleaning linens, cleaning carpet, wiping and cleaning floors. He apparently walks around at night dripping everywhere. (I keep bedroom door locked so he is confined to our bedroom. He wears depends but pulls them off. I have hired help but his schedule is so irregular that he seems to strike when they are not here. I'm exhausted and wonder how much longer I can go on, but then I think about what a wonderful husband he has been to me and I'm so grateful to have had him in my life. I owe him more than I can ever repay.

IsntEasy Mar 2017
You've got to protect your own health. You need sleep, too.
Has absolutely everything been done to eliminate the cause of his diarrhea? I assume you've addressed diet. If it's a med side effect, get rid of the drug. My dad was experiencing diarrhea due to a dementia med. those drugs are largely useless and especially useless once dementia has gone past the mild stage. Armed with that knowledge, I told his doctor that he would no longer be taking it. The doctor agreed. Diarrhea stopped.
I remain annoyed that the doctor never would never have suggested discontinuing the drug, even though it was affecting his quality of life. If you even suspect a drug is the cause, stop it.
Many doctors won't initiate a drug review and all dementia patients need one! There's very little ethical support for having a dementia sufferer taking drugs that have negative side effects.
If this diarrhea issue can't be resolved, you Should consider assisted living. Don't kill yourself over this. I mean that literally.

Rainmom Mar 2017
My adult son is sevearly disabled and lives at home. Rainman wears adult diapers round the clock but - thank God he is 90% potty trained. Still there is the occasional accident. The ones he seems to have the most difficulty "holding" are the loose ones - makes sense.

Anyhoo - two of the past four Sunday's have been a nightmare. I wake up at 4 and 5am to Rainman pacing between his bedroom and the bathroom- diarrhea dripping down the legs of his Jammie's and being walked through as he paces. I know all about the three hour ritual of the shower, the laundry and the floor cleaning and disinfecting- unfortunately these type of blow outs have been a part of my life for over 20 years. I mean, I don't even do things I LIKE at that hour of the morning, right?!!

There isn't a whole lot that can "fix" my situation - I don't know about yours. I feed Rainman a healthy, fiber filled diet, the bed is protected with water proof mattress covers and Rainman wears a heavy duty night time diaper - the diaper is largely ineffective, however. The one thing that while doesn't stop the mess - it does cut it back a little - is that Rainman wears adult, one piece footed pjs. I do cut the feet of as Rainman had a tendency to trip on them - but I cut below the elastic. That elastic at the ankle - along with a pair or socks - help keep more from getting onto the floor. Rainman wears the Pjs backwards so he can't undress himself or put his hands into the ick.

The only other suggestion I have is to be well stocked with rubber gloves, baby wipes and Clorox wipes - also bleach for the laundry. Having the right tools for the job does make things a teeny, tiny bit easier.

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Rainmom Mar 2017
I'm happy to have been of help. I did want to add one thing.

Get rid of the carpet in the danger zones. Hard as you try the carpet will never get really clean and will hold bacteria and odors- plus it's way easier to clean poo off of a hard surface!

bluecube Mar 2017
If the diarrhea is very frequent log what he is eating. Are the attacks of diarrhea more frequent after certain foods? Try eliminating suspect foods for a week.

One lady here almost died of daily diarrhea before it was discovered that she is lactose intolerant. Avoiding dairy products resolved the issue.

Can his doctor help reduce the number of incidents?

Chris128 Mar 2017
You may want to try putting down clear plastic adhesive on the carpet. It is used a lot to protect the carpet in Home models when they are showing houses. You can get it at Home Depot or Lowes. It is called 'carpet protection self adhesive film'. It is MUCH easier to clean than carpet and you can easily replace it if it gets too dirty.

Dad_Was_Robbed Mar 2017
You can't go but 10 or 11 days before you die from no sleep. Definitely get some help with caring for him, you can't do this alone. If having in-home help isn't working, you'll probably have to put him in a facility. Your problem sounds very similar to how my elderly friend was, all the problems seemed to happen when no one was there and he was alone. The meds were stolen (or so we thought), one time he left a mushy mess all over the bathroom, and several other things were happening. He was finally placed into a nursing home when the paramedics taking him constantly to the ER decided enough was enough. He already drove a wedge between he and his son, his wife died and there was a grandson who was still a minor. Someone made the decision to force him into a nursing home and everyone was so glad despite knowing putting him there would mean his death after losing his freedom. Whoever put him there had absolutely no other choice, they did what they had to do as an absolute last resort and an absolute emergency

Jazzy2 Mar 2017
Thank you Rainmom. Some very good suggestions and I will look for the pj's. Sounds like that would help. I don't know how you have made it 20 years. I feel at the end of my rope after one. God bless you. You have inspired me.

mar126 Mar 2017
Following what Isnteasy says about medications, here is what worked for my husband to solve this very distressing problem. Give meds on a very full stomach. Cut out any foods that can cause distress such as onions, garlic, any spices, grapes, oranges, bell peppers etc. Try to have him eat the same bland diet at the same time every day. Figure out when he normally needs to use the toilet. Use a suppository while he is sitting on the toilet trigger a bowel movement. I found this idea on Amazon user reviews for Fleet liquid suppositories. I knew my husband was distressed when he had an accident and it took a while for him to trust me with the suppository regime. It took me 6 months to get my husband's bowel incontinence under control, his last accident was in 2014 (knock on wood). The amount of effort it takes to follow the feeding regiment is a lot of work, but is better than cleaning up poop all over the place. An irritating thing about doctors is that they want dementia patients to take medications that cause problems, such a statins, even though the chances they will die from something like pneumonia. During the past year, I have discontinued all of my husbands medications and I wish I had done it sooner.

jeannegibbs Mar 2017
You've gotten very good advice for dealing with the incontinence. I want to address the sleep issues.

My husband had LBD, which is characterized with sleep disturbances. His doctors came up with ways to help in sleep through the night. He was home with me for 10 years. I couldn't have made it even 1 year without that medical help for helping him sleep. You absolutely cannot care for someone else if you are constantly sleep-deprived. Therefore I urge you to do all you can to resolve this nighttime issue. Be very insistent with his doctors that this needs to be addressed.

Would anti-diarrhea pills before bed help? My husband took them (with his doctor's blessing) before going out of the house. He didn't want an accident when he was a his day program or off getting a haircut. It helped.

Your husband sleeps peacefully while you are exhausted. Try to arrange it so that you sleep then, too. This may take some creative planning so he doesn't wake up and get into something dangerous while you sleep. I used an alarm that went off when my husband got out of bed. It was sort of like when I had babies. I could be sleeping very soundly and still hear the baby cry or the alarm going off.

You need help. No one, no matter how much love they have, can care for someone with dementia 24/7/365 and retain their sanity. Can't be done. The sooner you get help, the longer you'll hang on to your sanity and your ability to care for this person you love. Sometimes when I had help I simply went to bed in the guestroom! Later when a PCA came regularly at 9:00 am I'd say, "I really had a hard time last night. I'm going to stay in bed for a while. You can get Coy ready for his day." Don't be embarrassed to simply be in bed if a friend or relative or volunteer comes to spend some time with your husband. You NEED sleep or you'll crash and burn.

Keep us informed about how this goes, and what seems to help you most. We care, and we learn from each other!

anonymous476223 Mar 2017
My dad had a bout of diarrhea for 4 months after a hospital stay, due to antibiotics for a UTI.
It was a daymare. I thought he was going to die from it!!

This helped him: BRAT diet (food), Lactic Acid Yeast wafers, Nuun sugar-free electrolytes (many flavors, to keep hydrated), Metamucil (bulked the poo up), and patience.
Probiotic (quality-health food store) was given later after it was all over...

I feel for you! All the best!

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