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My 83-year-old father lives with me and I am his full-time caregiver. Up until about 1 week ago, he still went into the bathroom occasionally but seldom does now and every night he soaks the bed. I've used the most absorbent diapers possible plus and booster pad and it still goes everywhere. Do I get him up in the night? What do others do? What do nursing homes do?

Also, because of his stage of dementia, he does not respond well; that is, he resists me trying to move him, encourage him to stand up, etc. What works for others?!

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wordy2shoes.
Incontinence began a year ago and is 1st signs of end stage. Rigidity came soon after. - hands become clenched, body will not bend, legs will not relax, all to some degree on and off. Means a push to sit and a pull to get up from chair. Cannot get in or off bed without help.
Walking gait is a little unsteady. Hard to get him into car seat and out. Medics say it is not Parkinsons. Patient begins to need feeding - sometimes can want independence hence tries to feed himself, so mealtimes is nearly 2 hrs long.
Does seem to have rare odd moments of comprehension. Have times of refusing to swallow - is he forgetting how to...?
These symptoms have all gradually come in these last 2-3 years. but every patient is different and these are just my experiences.
it is good we can exchange these views. In earlier years there was no one to say what was to come. There is much I might have done for the spouse to have helped him retain speech, reading, writing. I did not know all these skills would go. I did not know the anger and stress was normal and I needed help myself. I am glad I can pass on my experience if it can be of help to others.
Hang in there
Gwendo
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Cranberry juice is good. I use it myself to stave off UTI's. 11 years. Bless you gwendo! It certainly is not easy and it changes your perspective. Dad has been living with me exclusively for the last 3 years. It's changed my availability too. But it's good to be able to be there and not resort to a nursing home already.

How does one know it's "end stage"? My dad is pretty healthy and seems like he could go on quite a bit longer, but in a home he'd probably fail more quickly. Just when I think he's completely out of touch, he'll say something funny or respond to something said in the immediate moment. Makes me wonder if he is more aware than I realize or just has sporadic moments or real-time cognition.

Take care Gwendo!
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wordy2shoes
god luck to you too!
As all advises - no or little liquids after- say 5pm?
Cranberry juice is said to be good for helping urine to come out more in one go. something about being more acidic and helps in the gastro system. try that instead of lemonade!
My spouse is in end stage, after 11 years, but still very healthy and nothing else wrong - just the brain! It will be a long end stage cos he is so fit.
gwendo
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Oh gosh Gwendo, I feel for you and hope that Dad doesn't get that kind of constipated! I'm trying different type of diaper and using 2 pads. Hasn't been as bad lately but may be he's not drinking as much, which certainly isn't good! But lemonade may have been making it worse; it's just that he's more likely to drink lemonade than water.

Anyway, thanks for all of the responses. I really appreciate hearing from everyone and learning from all of your experiences!

Hugs and empathy to all of you!
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To wordy2shoes and geedeeooo
all that bed protection may be excessive. My husband gives out a load of urine at night and less in day.
O.K here is my method.
Mattress has complete plastic protection, so nothing can damage it!. The normal nice bottom bed sheet covers that. On top, about where the hips and bottom will lie, is a large washable type protective pad - has waterproof on bottom side and sort of cotton padding on top. On top of that is small disposable protective underpad. These last are not expensive and maybe you can buy in bulk to save, like I do. Sometimes only a small patch is wet and I cut that off and might stick two partial pads together to make a new one! anything to save on costs!
Lastly on top of the disposable underpad, I place a folded towel over the part that is likely to catch the major overflow of any urine.
Diapers- there are many makes and weights for mild or heavy usage. 'Depends' is not the best. I have used European and Asian makes. If Depends is the only make available for you, try using a panty diaper and a wrap around diaper on top. I made a mistake in my bulk buys and got a panty diaper that had only a pad between the legs for light usage. too iffy to use daytime. So as not to waste item , I tried using at night with a wrap around diaper and found it worked wonders. A wrap around alone , mainly leaked by morning and the towel can be soaked as well as the disposable underpad. But everything else is dry! No need to change bed sheet or washable underpad. Easy laundering and bed to tidy up! With the extra panty - this model make held a massive amount and leaked out on sides on to outer wrap around. Bed protections are dry!
When my 'mistake' items are all used up, I am going to try the 'super' style of the 'mistake' item ( the maker is TENA - if you can find it) If the light usage model can hold so much urine, then it is likely the 'Super" model may work at night alone and have NO leakages!

My patient is quite co-operative with the diapers. I try to change to night time diapers at around 11pm. If patient has already gone to sleep , he is less deeply asleep. A damp towel to wipe his face usually arouses them ,do it gently on arms first to arouse a little and not to alarm them. I can get him up , he can sit on toilet and sometimes pees there too before diaper change. That will be it for the night and we all go to sleep well.
In earlier days before real incontinence, I woke him up about 2 times in the night, sometimes O.K, sometimes already wet diaper, sometimes it was a battle. We just had to learn to go with the flow. Now- what the heck, let him do it in the diapers and we all get sleep!
Good luck with your efforts. every patient is different but I hope some of these tips help. Yup, meals take 2 hours and toileting, give him a magazine and leave him sitting!
LOL Gwendo
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My mom has these issues too. We ordered "underpads" from ebay. They are fabric and absorbent and washable. We got a dozen for about $60. We put disposable pads down first (at the foot of the bed first then the one closer to the head of the bed on top) then we put the washable underpads on top of those (overlapping at waist level). Then we put the fitted sheet on the bed. Then we put two more washable fabric underpads on top of that. Mama lies directly on these. (When we put her in bed we roll her to each side and make sure everything is smooth and comfortable) Usually the generic Depends won't hold the urine, but it is very rare that the fitted sheet gets wet like this and of course the mattress has a waterproof cover but it never gets that far anymore. Hospice supplies the disposable underpads and the generic Depends. Like Shar 54 we put the washable underpads on the lift chair and the wheelchair. My mom also fights whenever we try to move her. I try to coax her and just take the time for her to understand what we're doing. If she tries to pinch or grab my hand/arm and prevent me I say, "Mama, you're hurting me." and she usually responds and stops pinching me. I think the problem is fear and not knowing what is going to happen to her next. Once she brought her face to mine and looked ready to bite me but when she contacted my cheek her face relaxed and she kissed me instead. I TRY to be patient. It's so hard when dinner takes 1-1 1/2 hours and going to the toilet takes 45 minutes or more.
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Lindipan, would a diagnosis of parkinson's disease make a difference? Thanks for the suggestion of Good Night's Bed mats, Shar 54. I have a wide bed pad (from HDIS) that works well and thank goodness for vinyl mattress covers, but the bed still gets wet. Had 2 dry nights in a row. I think where his "parts" are positioned, if you catch my drift, as to whether he soaks through or not. I noticed that the diaper was not terribly wet for how much the bed was, and I deduced that was the situation.

And ferris1, I do think a consult/assessment is due. There was a time that it was okay to just let him be, but extra measures seem to be needed now.

Thanks everyone.
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husband,80yrs, was hospitalized last yrs for 2 weeks. That was big mistake, he was depressed and could been home for treatment. Made him incontinent. At home he was woken for peeing etc 2-3 times/night - very quick n we all slept O.K. In hospital no-one bothered. Incontinent since for pee n now recently for poop too. AD at end stage, forgotten how to push and poop stays in bowels. .Tried all usual suggested solns - prunes, lots of fiber etc. n not constipated as has soft stools stuck in bottom.

What WORKS now. Diapers are hi-tech and good ones can hold up to 3 pees wiith a one way wet layer. So daily showers and creams for bottom keeps skin healthy. Try to put heaviest diaper on after 11pm n can last night with sometimes some overflow by morning. Usually only disposable underpad wet. I use a multi-folded towel on top of underpad too. so only all these need changing.
Men like to fiddle with penis n this causes wet beds. soln - use shorts with tight belt so hands cannot go into pants. Also use safety pins to narrow shorts legs too to prevent hands going in there! Put shorts on backwards so zipper is behind - at nights.

normal wear n pull on diapers for day and I take him to toilet at regular times. If timing is right he sits n pees in toilet n we all make whoopee noises! If he will not sit I hold a large plastic jug in place.

Pooping is bad news. The only way we can get it out is wear surgical gloves and 'finger'it out if he cannot push it out. An enema of glycerin/salt soln works to oil passage and sometimes poop slips out as he sits on toilet. But constipation is coming.... No poop for several days now. Husband is pretty healthy, walks, eats sleeps well. Get rid of him to Day Care daily n get out from under myself. All care-givers must get respite or we will get very sick/depressed/demented too.
I have coped for 11-12 yrs with AD now and sure wish I knew when it will end.
At this end point you need to be creative to cope with severe problems. I have bought a hospital bed n this helps with all the pull/push. Home care beats NH care for AD patients, better attention, less costly- but you have to weigh against the stress of it all.

Good luck to all in this situation
gwendo
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Wordy, my mil hasn't started that just yet but she is close. I also put a protection sheet cover on her bed to protect the mattress. I usually stop her liquids around 8ish due to the hot summer days to prevent dehydration which will help prevent UTI. Of course, the hot summer weather depends on where u r located. Don't forget to "take care of yourself." A lot of us caregivers seem to forget to take time-out n take care of ourselves when possible. If u get sick then u r no good for your dad. I would definitely bring this up to his dr's attention to see if he has any suggestion too. That way he will be aware of changes that may be going on or something else like UTI that the dr can check. This website has tons of info too, just hover over the blue area, "Elder Care," The alz.org is a great place to visit too. If u have one n your area n their r enough funds u can see if u qualify for "The Time Out Program." This is where they will reimburse u for taking time out while your dad is being care for by someone else for a few hrs. Either in the home or at a Adult Day Center. This is where u can try to get a small break n u will need it. Good luck n hang in their n let us know how u r doing with dad n yourself too.
Shar, I like the idea of the Bed mats. My hubby sweats real bad at night sometimes n soaks the bed. Plus the idea for the chair when n if that times comes for the mil. Thanks
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My husband is also urinary incontinent. He wears depends all the time including to bed. I have found that the Good Night brand of diapers for children has a product called Bed Mats. They are larger than the regular bed mats. I also use them on furniture he uses. If the most absorbent depends doesn't hold his liquid at night, try putting a men's guard pad on him in addition to the depends. That has worked for us.
We also use a crib size waterproof pad under the sheet. It protects the mattress and the mattress pad. You can find them in the infants' dept.
Hope this helps with the incontinence.
We have some of the same resistance behavior. Doesn't want to get out of bed, doesn't want to go to the bathroom at my suggestion. Really doesn't care if he sits in wet depends. Although it isn't good to let him sit wet, it is better for me to walk away from him for a while. Maybe later he will compliant.
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The freezing sounds like he has parkinsonism, my dad has dementia with Lewy bodies with Parkinsonisms which cause him to suddenly freeze and he isn't able to nor can we get him to move. Sometimes it might be standing. Sometimes is happens when he tries to sit or rise from sitting. He also is in continent from having had bladder cancer years ago and has a neo bladder (one made from part of his intestine) so catherization is not an option. He was hospitalized for. Severe dehydration because he refuses to drink fluids because he doesn't like to we the diapers. It is a vicious cycle. He has had bowel incontinence here and there as well. Additionally he also has total body atrophy so he is either in the wheelchair or in his hospital bed. We had to get home one of those because he kept getting up and falling, at least he is kept in bed with the rails, although he still tries to get out. My sister takes care of them, mom has dementia too and most days with her are ok, but then, there are days and then there are days. They do have hospice come in 2/3 days a week, but by the time they arrive, dad has been cleaned and changed. The Diapers and pads do not help and he is usually soaked to the neck, as is the bed so the laundry is bountiful. Having the hospital bed is a little help because the mattress is plastic and cleans easily. He has a bedside commode but more often than not it isn't used except the daytime. He doesn't readily announce when he needs to go, which makes it all the more difficult. Constantly seeking help from organizations and Medicare, which is like talking to the wind, we just get bounced around and get no where. Keep trying and keep laughing when you can, it is all we have left when caring for aged parents..
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Ice cream? Hadn't considered it a liquid but that might be a big contributor! Dad loves sweets and ice cream seems better than many of his sweet tooth choices. Am trying to schedule bathroom visits but so far he usually responds that he doesn't need to go, and pushing a rope isn't easy.

Yes, I hate seeing the change. Dad is smart and ran his own business for years. Now, though he can open lids I can't and occasionally figures out something that surprises me (such as taking the raised toilet seat off the toilet), he will eat anything in sight, even if it's potpourri. Makes you want to cry, but you don't have time!


I think I told my kids just to put me out to pasture (Mom had Alzheimers, now Dad has dementia as did 6 of his 8 sisters.) Not positive what stage of dementia he's in.
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Wordy...You mentioned that your Dad had actually used the toilet before bed last night and that he does well with "routine". Does he have a set routine for using the toilet during the day? My Dad has a set schedule -- he goes when he gets up, then again right before lunch, right before supper in the evening, then at about 6:30 PM (right before Wheel of Fortune!), and again right before he goes to bed. Sometimes he'll have to go in between but lets Mom know if that's the case. Without this routine I think he'd be worse off during the night. He also has very bad arthritis in his back, which stoops him over, and I think maybe dropping down to sit on the toilet hurts him more than we realize, as well as not having something to grab onto and push when he gets up.

As was mentioned in a prior post, be sure to limit his liquids after dinner in the evening. I've noticed that one thing that seems to make a person go during the night is ice cream, which I guess is actually a liquid if you think about it. Dad likes ice cream a LOT, and I think that's one of the reason's he has to get up at night. It really is sad, and an eye-opener, to see our parents go through this. No one should have to.
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Yes, anewleaf, his care is better here at my home. If he were in his own home, he'd probably be happier, but I could not move away. And, yes, he is somewhat bowel incontinent. He may go in the bathroom but those times are fewer and fewer. Something funny: 6 months or so ago, I bought a seat riser for the toilet so it wasn't so far down to sit on the toilet. The day I installed it, he was in the bathroom and inordinate amount of time. When he finally came out (he had locked door and I let him have his privacy, tho I have a key always ready), I discovered that he'd taken the riser seat off the toilet!

Dad is (or at least was) 5' 11" and I am 5'3". He was stubborn and very independent all his life. Old age and dementia have not lessened that at all! Sometimes it's good to see that "fight" for independence. Shows me the man I've always known. But sometimes it makes my work as a caregiver much more difficult.

Bless you for your response and caring so much for your stepdad! It is not easy.
Karen
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I took care of my stepfather who had type 2 diabetes with all the complications - dementia, cataracts, hearing loss, incontinence, and worst of all from a caregiving stance, he already had half of one foot amputated and while he was with me he lost one toe at a time (due to poor VA podiatry care) and ended up with half of the other foot amputated. That meant he couldn't use the toilet at all. The VA nurse who came out to the house periodically to oversee his care had me use a catheter, but dad kept pulling it out. We just had to deal with cleaning his bed every morning and giving him good bed baths. I used full-size rubber sheets like babies use in their cribs (not really rubber these days, I guess) as well as the bed pads. He got his from the VA so they were larger and thicker than what you would find at the store - check several medical supply stores to see what they have. The worst was that he was not just urinary incontinent but also bowel incontinent. You don't mention that, but if he doesn't use the toilet you must have to clean him. Watch carefully for bed sores. My stepdad did not communicate, which made it much harder. He did get so he seemed not to remember how to stand, transfer (especially in and out of the car), and he was about 6' while I was only 5'3" so we had our problems. After we took him out of the nursing home and cared for him at home, his overall health was much better and he lived another eleven years and seemed happy. Whenever he has to go into the nursing home, after surgeries or for brief respite care, they left him in wet bedding and nightclothes sometimes until late morning! Whatever problems you're having, your father is surely better taken care of than in a facility! Good luck.
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Thank you Mame4Mom, ferris1, and virtualhorizon for responding to my post. I was beginning to think no one would! Each of you had helpful things to say.

About 2-1/2 weeks ago, something changed in my father. It seems that the "force" that kept him going fizzled. He would not get out of bed and complained loudly about hips hurting badly (something he's never mentioned). He ended up in ER and dehydration was the only immediate diagnosis (but loads of tests were run!!). That was a surprise given that he still was filling the depends. Hospital kept him overnight to ensure that his blood pressure wouldn't suddenly drop. I also learned from x-rays that he has severe arthritis in his hips. He complained about his ankle and legs, which I assumed was his circulatory issues and past surgery on Achilles heel. Now he is extremely sensitive about his hip and barely moves at all. He's like your Dad, virtualhorizon, just stands still. He would do it for hours if I didn't get him moving again. And he's very resistant to my "pushing." However, I think he may once have fallen during the night from getting up and standing in place so long that he fell asleep. Can't be sure but it makes sense from the way I found him (this was about a month ago).

Anyway, since then he just hasn't perked back up much and is more confused. I will probably try getting him up in the night but I have trouble getting him to get up during the day, so I'm not sure how that will work. Last night he actually used the toilet before bed, which he hasn't done for several weeks, so maybe he'll get back into that habit. If it's part of a rote routine (like buttoning a shirt), he does okay, but doing something at my request or insistence is quite a chore if not impossible to accomplish.

Having someone come in for a rise and shine (and possibly at "tuck-in") will help me get him going, but it seems he may need a nursing home before long. And that means other big changes for me.

This situation has made me realize how much we need others, whether family, friends, or support organizations. I'm glad I found this community too.
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Hi Wordy,
My Dad (80) normally needs to get up once or twice during the night to use the bathroom. He normally calls for my Mom, or she hears him, and she gets up to help him. Occasionally he is able to take care of it himself. He went through a period of about two weeks, due to an ill-fated med change, where he was wetting the bed every night because he wasn't waking up at all. He also wet the bed through the diapers. This has passed now that his med has been corrected. My Mom would rather get up once or twice during the night, though it wears her out sometimes, than have to change sheets every day and wash all the time. You might consider setting your alarm for once during the night, perhaps at a time when you think your Dad might have to go, and get him up to use the bathroom. The biggest problem we have with my Dad is that he doesn't want to move, stands there like a rock, and doesn't want to sit on the toilet (Mom found he doesn't pee on the floor if he sits!). I think he has an aversion to the toilet as he always thinks people are working on it, its leaking, he's worried that the poop, etc, is going to contaminate the water supply and he'll get in trouble, etc! I ordered a 3-in-1 potty chair today (through Amazon, not a medical supply store, cost 1/4 the price, and Medicare wouldn't pay for it because it wasn't a "medical necessity", though they WILL pay the medical supply company $145 a MONTH for us to RENT a plain wheelchair before they decide its paid for and is ours to keep RANT RANT. And people wonder why the government is broke...) so that it can be placed in the doorway of the bathroom and hopefully will make it easier for him to use the toilet. If your Dad actually wakes up at night when he needs to go, and you don't have one of these, you might consider getting one and setting it next to the bed. Maybe it would help remind him to get up and use the toilet! I don't know what nursing homes do, probably depends on the patient. I think at some point, when the patient is in the final stages and absolutely can't do for himself, or with help, they apply a catheter. Please let us know what you end up doing and how it works! Good luck.
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As a nurse, I suggest you take courses or get some home health aides to come in and show you what to do. As far as incontinence at night, his doctor can prescribe a med to help him, but you need to limit the amount of fluids he drinks past about 5 p.m. so nightly wettings will be less. Also, he is going to resist most things, he has dementia. Don't fight with him, you will never win. In his mind, he is still all right and you are seen as an intruder into his life. Each day will present with new challenges and you will need some guidance on what to do. Talk to your Area on Aging, get an in home medical consult (those are free) from an in-home healthcare agency, get some info at alz.org (the Alzheimer's Organization), and read everything you can on taking care of someone with Alzheimer's. It is not easy, it will be very difficult at times, but know you are caring for someone who used to take care of you, and got you through to adulthood. Now help him...good luck!
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Hey Wordy-I am going thru a similar problem since my mom had a UTI and then became dehydrated and spent 5 days in the hospital. She is deconditioned and we now have PT here getting her walking again. I completely understand the problem of the soaked bed and have been wondering what to do too. I hate to get up in the middle of the night but I think that is what I am going to have to do. Otherwise, she sits soaked all night which isn't good and then there are loads of urine soaked laundry. UGH. I am sorry you are going thru this too. Mom has a good reason for her incontinence at this time and the Dr is aware and we are all hoping she gets back to getting herself up in the night to go on her bedside commode. Fingers crossed! As for your dad-what changed? Could he be sick? I would let the Dr know. Men can get UTI's too! Maybe it is just another stage but I think it is worth a call or trip to the Dr. Good luck! Mame
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