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

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!

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

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.

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.

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.

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

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.

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.

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..

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.