First post in this forum, and before anything else, I want to say what an amazing resource this is. So many thoughtful responses to very difficult questions. My heart goes out to so many people with such difficult care situations. It's enormously helpful to see a community like this here, and I've been able to use a couple of tips here to improve my mom's care situation. But there are still many serious problems, with the hours between 12-9 AM each night being the biggest concern.
My 85 y.o. mom lives alone with my 80 y.o. father, who cares for her 24/7. She will usually get up between 3-5 times per night to go to the bathroom, which is very dangerous because she has diabetic neuropathy and her legs are very weak. She gets around with a dining room chair that she has used for the past several years as a walker (she refuses to use the walker in the house unless her HHA makes her use it, so the dining room chair is basically an extension of her body now). Sometimes she goes to the bathroom and usually does pee quite a bit each time. She'll sometimes stay in there, either because she fell asleep in there or was too weak to get up. All of this means that my dad stays up all night to help her go in and out of the bathroom, or clean up after her if she has an accident on the floor or on the bed.
My dad is utterly exhausted from doing this day after day. I don't know how to help them. Here is a list of things we have tried, without success:
* Temazepam to try helping her sleep: she took them every night, sometimes secretly doubled up on it, her body eventually adjusted and it lost its effect. Took a while to wean her off of that. Same with Benadryl. Melatonin also ineffective.
* Pull-ups or briefs for urinary incontinence: sometimes she takes them off, and it's done nothing to change her nighttime behavior of getting up.
* CPAP machine for deeper sleep (she's had sleep apnea her whole life): she is scared of it and has refused to use it.
* Bedside commode is 3 feet away from the bed. She has never used it.
* Overnight care at home: my dad deeply distrusts strangers in the house, and refuses to consider it.
* ALF or MC facility: my dad is convinced my mom would be abused and neglected there, and refuses to consider it.
* Eating earlier & last drink of water earlier in the evening: she has had chronic appetite issues for about 15 years, so getting her eat anything earlier is really hard. My dad has the habit of giving her a glass of milk after dinner, which is between 9 and 10 PM.
* She takes Oxybutinin 5mg twice per day, but it seems to have no effect at all.
This feels like a puzzle that just can't be solved, and the situation gradually gets worse. My mom's sleep schedule is completely backwards, my dad hardly sleeps at all and is burned out, and I get pulled in because I'm the only child and along with the HHA who comes by for 2 hours per day, she and I are literally the only physical and emotional support they have. I do as much as I can, but I don't live with them, so the nighttime situation is totally out of my reach. A lot of this is the accumulation of many years of behavioral issues (i.e. stubbornness), and now the physical issues are layered on top of it. I'm worried my mom will fall, and we'll have a real crisis on our hands. If she could just sleep through the night, and break the habit of constantly going to the bathroom at night, my dad could sleep, and while the situation would still be precarious, it would be far better than it is now.
I've thought about getting zip-up pajamas for her that she can't remove, but I feel like that won't necessarily break the habit of getting up during the night, and she might struggle to try to take the pajamas off.
Is there something else that we could try? Or double down on an approach we've already tried before? It's tough because my dad doesn't have the discipline or patience to really enforce behavior changes in a compassionate way...they just end up arguing.
Thanks, everyone!
a) she forgets it's there
b) she finds it uncomfortable
c) she finds the idea of it distasteful
d) she doesn't like to use it with your father in the room?
Finding out exactly what her objection(s) is/are is helpful, because there is usually a solution to each one.
E.g.
a) Suppose it simply doesn't cross her mind to use the commode, which would be completely understandable: she wakes up in the night, she wanders off to the bathroom as she has been doing most of her adult life. He could put a pressure pad alarm by the bed so that he wakes when she gets up, and encourage your mother to use the commode instead of going to the bathroom during the night.
b) Sit on it yourself. How comfortable would you find it with a bare bottom? There are many styles and sizes on the market, if the one she has is not great consider getting a better one. Also consider whether it is easy enough to get up from, and find out if you can whether she's ever got stuck on it. Experiences like that can put a person right off!
c) Think through how the commode is to be covered, then emptied and cleaned in the morning. Your mother would not be the first to be absolutely revolted by the thought of having a bucket of wee (or worse!) next to her bed all night. A well-fitting lid, a judicious base layer of dilute disinfectant in the bucket (not so much or so strong that the bedroom smells of it) and a demonstration of the seal when the lid is on might help with this. As for emptying and cleaning, this must be done without comment (unless the contents of the bucket are seriously alarming), and not in her line of sight while she's having breakfast.
d) More difficult. Even long married couples can be inhibited about using the bathroom in front of one another; and placing the commode so that she can't be seen from the bed would at least partly defeat the object of having it... So I hope this isn't the reason!
It may not seem like it, but I'm really trying to be fair to both of them and not blame them too much. But this is the accumulation of many, many years of certain tendencies. I mentioned in another thread here today that dad moved the commode out of the room, so he's kind of given up on the idea altogether. He needs to be 100% bought in for there to be any chance it'll work. It's hard not to be frustrated.
The most promising route, I think, is probably with the HHA, whom mom resists but ultimately manages to convince mom to take a bath and have lunch each day. But during the day mom can go many hours without deciding to go, and she's never used the bathroom while the HHA is home.
With all of that said, I do think planning ahead for the smell aspect is very important - dad says that her urine has been particularly smelly lately, and I can only imagine what an accumulation of that would smell like in the bedroom if it's not covered properly overnight.
Anyway, I did want to respond to these suggestions in particular, because they're really good ones - we just have additional obstacles in the way.
I know how your dad worries about neglect in NH, even the very best of them. If you can afford private duty nursing for the night (I cannot), that would be great. Hiring through an agency would vet the person for you. Please think about how to make caregiving easier for your dad.
On sundowning: We stumbled on something important the other day. I was looking for other channels she (and my dad) can watch that are a little more mentally stimulating, and we found some music channels that play music from the 70s and 80s. My mom's memory for that music is flawless. She remembers all the songs and sings along to them. So her mind is more stimulated, and paradoxically because there is less to pay attention to on the TV, it encourages more conversation. And the effects of the dementia are diminished in that state. Today I'm going to try introducing the jigsaw puzzles, it's just logistically more challenging because you need a surface on which to do it that is also near her, which is hard. But she seemed interested in the jigsaw puzzles, so that's a good sign (she's not interested in many things anymore). But I think the prime objective at the moment is to increase her mental stimulation during the day so she's more tired at night and less prone to sundowning.
On incontinence: We're holding back the Oxybutinin for now. It does seem to increase how much urine she's producing somewhat, but it's not really leading to her getting up more at night, which is the core of what we're trying to address. It was so bad even on the medication, it's hard to see what the benefit of staying on it is. It's too early to say whether it's having an effect on her cognition, but I do agree overall in trying to minimize medications. I would say the situation is stable - dad is getting a bit more sleep at night, but now he's got issues with sciatica, and that's been bothering him more than anything else lately.
The PJs are still a promising solution, but I think it's a change for which I need to be there for a night or two to make sure there aren't unintended dangerous effects overnight.
The milk late at night is still happening, even though dad knows better. Also on my visit today, I noticed he's also not given her her meds a couple more times - in the morning he may forget, and at night he might be running his own "experiment" on withholding meds to see if it improves her sleep. This leads to a major point: dad is a big part of the problem - I can't control what he does when left to his own devices.
I guess to describe things at a higher level, if mom and dad are living together alone at home, there is a ceiling to their quality of life. If they were living separately, that ceiling would be much higher. If either of them were open to overnight care, that ceiling would be much higher. But these are things that won't budge, so I'm focused on introducing small, incremental changes that don't require much from dad to try to approach that ceiling where it is now.
Thanks again for all your support! I'll try to respond to a couple of the answers below.