How do I handle complete incontinence and overall resistance in this stage of caregiving?


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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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
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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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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.
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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
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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 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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