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

Jazzy, my mom started having fecal incontinence issues years ago. We went to numerous doctors, but no one was able to help her, she was a prisoner in her own home, because she didn't want to go out because of her lack of controlling her bowels. I finally took her to a colorectal surgeon, the doctor didn't want to put her through surgery because of her age, so she prescribed a powder called Prevalite. This powder worked wonders, and now, she has her life back and no more issues. This powder, you put 1 small scoop of powder into any 8 ounces of fluid (my mom uses juice) before bedtime. My mom only needs to take it once-a-day, but you can take it up to 3 times a day. You may need to ask his doctor to let him try this, and you can look it up on the Internet . My mom is very happy now. I hope this bit of information will help you.

Depending on the stage of this dementia, you can and should contact HOSPICE. A case manager will speak with you and will send someone out - most likely an RN - to evaluate your situation. If you are accepted under Hospice/Palliative care it is a "blessing"! And, what I hear very often is that people wait tooooo long to contact them! It is amazing what they can do and help they can offer! Don't wait. The worse it can be is that they tell you--- not yet. But, they will most likely not be the case. I made the call, and it was the best thing I did for my husband and me! God's Blessings to you and all the wonderful caregivers... p.s. you do not need a doctor to do this! Anyone can make the call!!

Dear Jazzy,

I know you are going through a lot and its not easy cleaning up these messes. I know it takes a toll. And now that have you started asking how much longer can this go on for? Its a sign that other options must be looked at.

I know you love him and want to do what is best, but maybe its time to start looking at nursing homes or assisted living? Respite care? Hiring another caregiver? Its not easy I know. Try talking to a social worker and see what other community supports are out there.

Thinking of you.

I wanted to throw my two-cents behind the post that said don't assume that foods that have always been fine - remain that way. It has happened with Rainman twice - first, after 16 years of being able to eat peanut butter- suddenly it caused diarrhea. Then just this past two months - after doing all my charting and graphing - I discover it was steak that's been causing the latest round of Sunday morning blow-outs. After two years of having steak every Saturday night for dinner - it's an almost over night change. The weirdest part is that beef like in a burger is fine - it's just steak.

Anyhoo - I also thought I'd say where I get Rainmans one piece Jammie's as a few others liked the idea. I get them on line - the company is Big Feet PJs. They are a little spendy but if you wait for spring you'll find many on sale. I get fleece for the winter and their jersey for warm weather- cutting of the long sleeve at the elbow.

Get help , caregiver,

Can you see yourself prodding on like this? No, most definitely not. I suggest you consider alternative living arrangements for him. My late mom had lost her olfactory sense, so she had no idea she was pooping all over the bathroom floor, toilet seat and shower seat. Oooh! Pretty bad when I was the one who had to move in with her and I had to go...oh, no, but first I had to wipe the toilet down before I could even sit!

Jazzy2 sorry I just saw your newest post after writing the above. If I am not being too personal, what did you mean when you said you learned that you could not place your husband in a facility permanently? Was that a financial awakening or an emotional one? I am asking because I have seen far too many spouses make promises either early on in their marriage or early on in an illness that they then feel obligated to uphold when faced with advancing dementia or another chronic, disabling illness. No one knows what this disease entails until they are living it. This is not a disease that any can or should attempt to deal with alone. There is no way to keep a loved one safe in a private home when they wander, have urine or bowel accidents, become confused about their location or about the people in their presence. The list goes on. Just the fact that you have to lock the bedroom door at night tells me how far things have gotten in your home.
For many it is shame. Somehow this being a disease of the brain, rather than heart, liver, kidneys, etc. makes it shameful to deal with. Shame leads to secrets and secrets lead to isolation and seclusion. The problem is it is not only the person with dementia but the caretaker/s as well that becomes isolated and withdrawn from a "normal, healthy" life. While shame may not be an issue for you, I hope you are consciously aware of anything that may be influencing your decisions in getting any help that could benefit you or your husband.
I have said for years that no one person can deal with this disease...it truly takes a village. In the advancing stages most often that village is made up of carers in a care home alongside the family. The gift of that is all of the "work" of this disease would be the responsibility of carers while you get to go back to being a wife. You get to show love and affection, spend time and share space, whatever that looks like for you and your husband. While I understand taking on the role of caretaker, there will come a time, if it is not time yet, when you will need to step aside and let someone or many someones fill that role.
Something to consider...most European, Southeast Asian and South American countries, among others, have historically never had "care" homes. Family would tend to the elders and outside help was only brought in for true medical needs. As I write this, all of those countries now have or are considering creating care homes. For dementia patients. Even with the love and attention of huge, devoted families, over time these cultures have come to realise that this disease is too big to handle in a private home with no medically-skilled personnel. To me that speaks volumes about what this disease does to the individual as well as to the family and just how much time, attention and skill is required to properly care for someone with dementia.
Whatever your reasons, I hope that none of them are based on shame or a promise made with love and the best of intentions.
Wishing you peace and gentleness as you traverse this wicked disease! XO

You have been given great ideas based on the experience of others who have walked in very similar shoes to yours. I feel for you; your sleep-deprivation, your selfless caring for the man you love and for having to watch the man you have spent your life with disappearing before your eyes. In my thinking there is no worse illness for a family to have to live through.
I agree that your health and wellbeing are vitally important. You are no good to yourself, your husband or anyone else when you are sleep-deprived. You are already living out one of the most stressful situations there is. Add to that mental and physical exhaustion and you have the makings of your becoming ill. I imagine you are not eating much or regularly either as that usually becomes one more chore on your list of many.
If nighttime is the most challenging for you perhaps it is time to look at getting help in overnight, rather than or in addition to during the day. If you had help through the night you could sleep while someone else tends to your husband and they can have him cleaned, dressed and fed breakfast before they leave in the morning, depending of course on what the schedule is in your home, if you have one. You could look at midnight to 7 or 8am. If you must choose between day or night carers, perhaps it is time to call in the troops during the day, if you have not already done so. Are there family or friends who can take shifts throughout the day so that you are not the only one tending to your husband for all of his "waking" hours?
Does your husband nap throughout the day? Is there any way that you could take his nap time as your own, just as you would with an infant? Sleep when they sleep!
I agree with looking at diet and all medications in trying to resolve the bowel issues. Foods that were never an issue before can become problematic for no clear reason. Medications can alter the way food is broken down and absorbed in the system. Never forget that doctors are here to help you and your husband. They only know what you tell them. Be sure to tell them everything, in graphic detail if necessary. That goes for you as well. Make sure your doctor knows the level of stress you are under and how little sleep you are getting.
I think many assume that dementia is dementia and caretaking is caretaking. Nothing could be further from the truth. Keep a notebook with dates and times of everything, from foods eaten and beverages consumed (including amounts if possible) to incidents, whether it be accidents, wandering, refusal to eat...you get the idea. When we did this we were able to record Dad getting up 19 times in one 6 hour night. When added to all of the other information we were able to document, this changed our thinking as well as that of the doctors involved. Yes, it is another " thing" to be done but we found that by the time an appointment came around we could not recall all of the details we thought crucial to share.
The reversed footed pjs are a brilliant option, even if only looked at from the point of "diapers" not being able to be removed.
While it may be counterintuitive, this is the time that you need to be the most selfish in regard to your health and wellbeing. First, because you are an individual deserving of health and happiness and second because you may have a long road ahead of you being the voice and advocate for your husband. Given the way you spoke of him and your marriage you must also consider what he would want for you. My thinking is that he would want you to look after yourself and make yourself a priority. The only way to do that going forward is to ask for the help that you need, just as you have done here.
Take very gentle loving care of yourself. Wishing you peace! XO

My husband also has diarrhea for 3 or 4 days each week. We haven't found what causes it yet, though. He's started taking Imodium, but has to take a ton of it. Then he gets constipated and cranky. His MD does nothing about it.

My own problem with the diarrhea is that he will change his clothes in the bathroom and leave them on the floor, close the door, and not tell me. When I go in the odor knocks the socks off me and I gag. I've never been able to not gag over the odors of feces -- even my own -- and had a rough time changing babies' diapers!
I bought him depends for men. He'll use them AFTER the problem.
Thanks, everyone, as your comments and suggestions here have helped me and others,

who keep quiet, tremendously.

Why, oh why, are people allowing this to happen over and over again and they go without sleep and rest and any form of a normal life? Yes, we love them - or maybe what they once were - but it is different now. You cannot continue to have this happen in your home. When this happens, you must find a way to put them in a facility where they can deal with this. You cannot allow someone to destroy you - it is just not right - no matter how much you love them.

So many elderly are victims of overmedication and just living with the side effects.
Please, do a quick search on every med your loved one is taking and check the side effects and look at the drug's efficacy to see whether or not it's likely to be doing any good. Namenda, for example, is often prescribed for people with mild dementia and it's been proven to do no good at all, yet it is one of the many culprits among drugs that cause diarrhea.

When my mom lived with me this was a constant. It was highly recommended I take her to a geriatric dr. Her life and my life changed forever. He took her off of many of the drugs she was on as these were the culprit! I thank God often for having him in our lives! It's tough enough without manifestations of drugs!

He has been under the care of hospice for 9 months. His last hospitalization 9 months ago was for diarrhea. The doctor says this apparently is just the way he is going to process from now on. I do the electrolytes and the citrical to bulk up. I. Was nearing the end of my rope when hospice suggested a 5 day reprieve by placing him in a nursing home. Apparently this is a hospice " benefit." 5 days for respite care. He told the helpers he had been bad and his wife had walked out on him. I learned I could not place him in a nursing home permanently but the 5 days of sleep was awesome! I'm sure I will do it again. Thanks for all the good tips. I'll especially check out the carpet film and the yeast? Thanks for listening to my vent. And, Rainmom, you are in my thoughts and prayers.

I meant do some research. Darn spell check.

Moms alz meds had a side effect of diarrhea and it affected her every day. I mentioned it to her doc and he put her on colestipol. It just firmed her up enough to give her some control. Now I realize we probably should have just stopped the meds. She had been taking them for the better part of a decade.

Do some reassuring so you can make an informed decision an.d have a talk with his doc. Keep your chin up. You can do this, though you will at times think it is impossible. If you cannot keep yourself healthy you may want to hire in help or make other arrangements for him. It is a hard position to be in, my prayers are with you.

Be absolutely sure it is not C-Diff. Find out the reason for the problem. Loose stools daily is not normal and it sounds like a better bowel care program may help. If this is happening on a regular basis and at certain times you might try bowel training ie: instead of waiting for the incident to occur you might be better off setting a time, whether it be day or night, and take him to the bathroom on a regular schedule you can adhere to.

If the odor is strong and the stool is has mucus and not simply loose you need to have it tested. Know this - one test may show nothing and the next one may show C-Diff. Good luck.

Jazzy2: Sorry that you are having to deal with this. Incontinence is part of most memory impairments at one time or another, you either are or not, it's not occasional. Many caregivers make changes in bed checks, sleeping or living arrangements at this time. It's good that your husband is in the Depends. Sorry to say, but eventually he will keep them on after the deed. That's another topic, a different crisis to manage. Now, I'm presuming, he's uncomfortable, confused about what to do, where to go. Removing the carpet doesn't mean no clean up for you. With 1 or 2 on a floor, no carpet, it's an accident, a fall, waiting to happen to anyone, especially in the dark. Cleaning #2 is probably the worst, never is the right time. Some people, even paid help, just can't or won't do it. As a caregiver to my brother with ALZ, I went thru this. I was ready to rip up the carpeting asap, glad I didn't. Invest in heavy yoga mats or the heavy plastic carpet runners to put over the paths your husband seems to be treading. With my brother there seemed to be a pattern. Either can be taped or tacked down. For cleaning they can be hosed off with bleach in the shower or outside. If they are really trashed, roll them up and toss them, a replacement is an inexpensive fix and worth it. The occasional professional carpet cleaning is costly, trying to do the same thing we are, a matter of choice. Open windows, glove up, pick up, and spray or pour straight bleach on the spots. Use old rags, wipes with bleach, use a plastic bag for everything and toss out. Follow with Febreeze for fabrics, that stuff really works. Use their air freshener as well. Yes, right now this is all a temporary fix, not a forever. It's masking odors, covering up spots the best one can do at a given time. Caregiving is tiring, doom and gloom. It takes a special person. God Bless

Maybe too much fiber ?

NO! do not put plastic on the rug...he will slip..I guess I'm lucky. My husband still makes it to the toilet.

There are some great ideas here so far. I have a few more ideas that might help. First, my mother takes melatonin every night and she sleeps through the night. Her doctor says it is safe for her and better than sleeping pills. You might also want to make sure your husband is drinking enough water and eating enough foods with fiber to help with the diarrhea. Maybe right before bed you get your husband to sit on the toilet for while. Not pleasant but you might have to bring a chair and sit with him to keep him there. My mom wears depends as well and does have accidents (not near as bad as you are experiencing) but when she just sits there sometimes it seems to encourage her to go thus helping prevent a later accident. Lastly, I also give her a very mild anti diarrhea pill if it gets bad or if we are going out for any reason to prevent accidents. I find I can't give her too much or she gets constipated which we don't want either but one pill is sometimes just enough

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

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!

I have been plagued by intermittent liquid (but painless) diarrhea for over a year, luckily first thing in the morning so it didn't interfere with the rest of my day. finally had a colonoscopy--I have something called microcolitis--the cure supposedly is three pepto-bismol tablets 3 times a day for 8 weeks. I'm now into week 2, all is going very well.

if I was in that situation I would put new plastic down each day and roll it up and throw it away with each episode. expensive maybe but worth it. search for cheap or even free sources of plastic

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.

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!

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.

Has your husband been seen by a doctor to diagnose the constant diarrhea?
This should not be happening all the time unless he has medical condition or something like C.dif . and if it is C.dif you are putting yourself at risk as well.
If there is a medical condition I echo the idea of the one piece PJ's and put them on backwards. There are also undergarments that are one piece sort of like a t-shirt and underpants attached. I used one for a little while for my husband as he liked to "re adjust" himself at night and that left a dry brief and a wet bed, bedding, and sometimes the floor. It did work but my husband was so tall that the garment was a bit tight and I was afraid it would leave marks on the skin.

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?

My 90 yr old mother is living with me. She is incontinent but only has occasional accidents. She thankfully does not have dementia but is frail and needs help with everything. I can leave her alone for 2 or 3 hours so I can get out and run errands. You have it much worse. I can't imagine having to go thru what you are going thru daily. Lack of sleep really takes a toll on your health. Take care of yourself. God bless you