wordy2shoes Asked July 2013
How do I handle complete incontinence and overall resistance in this stage of caregiving?
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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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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.
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.
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
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.
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.
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.
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
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
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.
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
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!
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
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!
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