Sleep issues + dementia + fall risk + incontinence. What to do?
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!
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.
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.
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.
Discontinue the late night milk, or decrease it to 5 oz. and give it by 8 p.m.
Try less medicines overall, decreasing dosages under the supervision of the doctor.
Be sure she goes to the bathroom as late as possible before bed, not just allowed to doze off. Set a bathroom schedule, (or assistance to the bedside commode) at a regular late-nite schedule.
It's alot less steps she'd have to make and it would be safer and save her strength and then your Father could just empty it in the morning and hopefully get more sleep.
I hope you find some way that helps MrPeanutbutter~
Thanks so much for the warm wishes, they really help!
1. Those don't exist
2. Even if they did, no one could possibly put up with mom
3. Even if they could put up with mom, they'll end up stealing things. (He's heard stories from friends and neighbors who had such help and they claimed things turned up missing.)
I don't think these are the types of arguments one can win with reasoning and evidence (I tell him there obviously are night nurses, and he'll just say "no, nobody does that"). These are very tightly held beliefs that he has about how things work and the way people are, and there's no talking him out of these things. If mom were living alone, all of this would have happened long ago - she wouldn't have wanted it, but it would be physically impossible to not have one if she were alone. But as long as dad is there and taking care of her, he's going to have to be the one to surrender some control, and so far he's done very little of that. If I just went ahead and hired one, he just wouldn't let them into the house. As much as I'd like to force the situation, I'm just not in a position to do so.
What I'm hoping for is that little by little, his experience with the HHA will open him up. She's only been coming for 2.5 months after mom qualified for Medicaid, and was only coming for 3 hours a week because dad didn't want more hours ("if she's doing more work, what am I supposed to do all day?"). But once she actually started coming and being a real help, now he's her biggest fan and wants her there more, and so now she's coming over every day. So I think the best case scenario is that he can gradually be more open to these things, and that mom is lucky enough to not have a fall in the meantime.
I'm curious, how did you go about finding a night nurse? Did you go to an agency?
https://www.alzdiscovery.org/cognitive-vitality/blog/can-overactive-bladder-medication-harm-your-cognitive-health
Maybe discuss pros and cons with her doctor especially as you think the oxybutynin isn’t effective? It can raise the risk of dementia. My mom had been on it for years and since she was having incontinence anyway I discussed with her doctor and we took her off it. It really does the opposite of what Arricept does, so it would have been pointless for her to be on both a cholinergic and anticholinergic med.
As you suspect, they’re just one stumble away from having the ability to make choices about where they’ll live taken away from them. You are doing a great job with what you can, given how your dad is digging his heels in.
I'm sharing this because of the fall risk! He died of Atrial fibrillation that I have no doubt was caused by the fall and blood loss. Had my father had constant supervision the trauma of the fall and blood loss may not have added to his problems and he might still be here today.
After about three years there, one night she fell in the bathroom and was found on the floor some time later (no one knows how long, could have been hours). She was in the hospital for a few days and had sepsis (also unknown if she got that in the hospital or already had it), and it was decided to only do comfort measures. She lasted several days before finally passing away.
This is not even the experience that dad references when he voices his opposition to ALFs, but it does make it that much harder to argue against him. These things really do happen.
Have a urine culture done. Mom's first UTI in MC resulted in serious sun-downing, but subsequent ones resulted in night time bed wetting, aka soaking! She was not incontinent. Once the UTI was treated, the bed wetting stopped. This is easy enough to rule out (culture, not just the dip stick test.)
"...keeping mom awake is beyond dad's capability because he himself is too exhausted, so I'm trying to find other ways that doesn't necessarily involve much from him."
If they currently have an aide (2 hours now?), perhaps increasing the time and getting the aide to keep mom as "active" as possible could help. Get her to take a walk, preferably outside (fresh air!) At the very least, dad could get in a nap while she is cared for. Sleep deprivation is a bad thing! While it is better to have a larger chunk of good sleep, getting a longer nap in during the day might help him.
Most of your dad's "solutions" are not. There are medications that might make her pee more, such as diuretics (usually for BP/heart issues.) If she takes those, work with doc on either eliminating or changing it. If she takes these at night, switch to morning. I'm not aware of any medication that would reduce urination.
Hospital bed with rails: Bad Idea. She is still mobile, and will likely attempt to get up anyway, which can result in some serious injury.
Rear access PJs: Also likely won't work, as she will either try to get out of it or will end up going in it while she struggles to get out of it.
Given their ages and conditions, the best option would be to move to a facility. I understand he objects, however the situation is only going to get worse, not better or stay the same. You know this. Educating him might be a way to get the light on. Keep the dementia info as minimal and simple as possible, but focus on how the situation will get worse. Remind him that he isn't young and if HE has a medical crisis, then who will take care of his wife? Even adult children trying to provide care end up worse off, not just those who are older! Don't overdo it, just reminders sprinkled throughout the day or week. None of us is getting any younger or spryer as we age, and anything that overtaxes us will hasten the inevitable! Remind him that if HE hurts himself or has a medical crisis, it will be even more difficult to avoid facilities and at that point they may not have a choice of places. It would be better to be able to choose a place they can both live in and get the help needed. He can still help, oversee and be with her.
Check out various facilities in your area. Focus on the ones you feel might be the best fit. Once you have a few thoroughly checked out, schedule a visit/tour with your dad. Use the aide time to do this. He needs to see for himself that ALFs are NOT what he remembers from years ago. Also, if he moves in with her, he can continue to provide some care AND be with her, as the "protector." She wouldn't be alone in the place, so that would help with the concerns. Focus on how this will help HIM, alleviating a lot of "work" he has to do and allowing him to sleep without having to worry about her.
One option for the facility issue is to see if any of the places have short-term stays available, like respite. If you can talk him into going there, just to have extra help AND refresh himself, but it's not permanent might get him in the door and allow him to see for himself how nice they can be.
Not all places are created equal, so it's up to you to weed out the not so good places. We looked at 3, after my online research. One was eliminated right away. Another was nice, but more expensive and not a good location, for me at least (45m commute each way!!) The one chosen wasn't finished yet (rebuild of an older aging home, with endowments - private pay, non-profit.) The deposit was refundable, so we could wait to see it before deciding. It was a wonderful place and mom was well cared for (it was combo IL/AL/MC.)
So basically what I do is make sure she's wiped out by bedtime. Nothing beats good ol fashion activity to help you sleep.
Good luck!
I have had many sleepless nights due to my mom was having night time nausea. I sleep upstairs so I use at night a baby monitor. Her night time nausea has resolved since she has been started on pepcid.
April 22nd my mom fell and broke her hip or really upper femur. Currently she is in a nursing home for rehab. I question if she can ever return home. After sharing my story I want to share some issues for you to think about for your situation.
1. Be prepared your mom will fall and break something. No matter how hard you try and prevent it, it may happen.
2. The nursing home my mom is in is wonderful. The nurses and aides are awesome. Your father needs to overcome that fear. Theses caregivers are professional and really care about their patients.
3. You need to realize you are doing your best and your father apparently is in charge. You need to accept that, but is very painful to do.
4. Be prepared that nothing may change until some crisis happens, like a fall or illness.
You have offered your father many options. Don't beat yourself up. Say your prayers for God's guidance. Good luck my friend, your a great daughter.
Barbie
Using sedatives will increase risk of falling and be aware so will Benadryl, which will also cause constipation. Temazepam is notoriously addictive being a benzo. For older men, first generation antihistamines like Benadryl will not only cause constipation, but will also cause the prostate to enlarge and cause urinary retention...along with higher risk of confusion and falls.
If you do not keep them up most of the day, they WILL sundown and they go ULTRA crazy, and at that time they will be very dangerous usually falling and could break their hips or get a brain bleed.
I wonder if a thorough cognitive evaluation would demonstrate to you (not to Dad) that his alleged stubborness is actually lack of problem solving ability exacerbated by sleep deprivation.
I wonder if proposing a vacation for dad/respite care for mom--maybe doctor would "order" a temporary nh stay to get her sleep back on track-- might clarify these issues. Yes, it would cost a boatload of money. But it might push everyone off the mark they are stuck on right now.
Dad doesn't seem to "get" that dementia is progressive and unfixable.
And consider hospice.
#1 I know you already know that she should be using a Walker with a Seat instead of a Chair and she should be using a bedside commode instead of making the longer trip to the bathroom. Maybe she would use tge bedside commode if there was a partition, maybe she doesn't want to go to the bathroom infront of her husband.
Wearing a diaper and not getting up at night sounds like the option to choose but you can't make her do anything.
I give my Dad a 3 mg melontonin at night and it helps.
Either your Dad or Mom will have to decide to make some changes like Dad change his sleeping habits and sleep when his wife sleep or hire help.
You have presented options for both mom and dad and it has to be up to them to use them.
Until that happens, there's nothing you can do about it.
If she doesn't have one already, I would buy mom a walker with a seat.
Use diapers and barrier cream. I changed my mom about 6 - 7 times a day and I never had a problem with it.
It might be worth it to have the home health aide over for 4 hour block and encourage dad "to rest" (sleep) while she is there. You might be able to do the same and stay for 4 hour block each day so he can "rest" (sleep). Then, he will be getting enough sleep to compensate for being up at night.
Not all issues have solutions though. If no cure is possible, acceptance is next. (Relates to illness/disease but could apply to the situation too).
So to recap; untried are bigger changes eg night Aides or moving to ALF or MC but these are not acceptable to your Father (at this time). He wants Doctor to 'fix' instead. Or family.
Next, your Father may have to decide on what IS acceptable for them...
A. Staying in their home at all costs - if so, more Aides will be needed, inc night.
B. Staying close together - he AL she MC in same location
C. Crises. Keep doing same, even though problem remains & await a crises to force change. Eg he burns out or she falls. Then he WILL have to choose A or B anyway.
While option C sounds kinda bad.. I think it goes under the *stay home as long as possible* heading. Is that what your Father really wants?
So it was a case of get up, take one step, and away we go!
I'm still not sure if his behaviour improved only because he resented sleeping in the passage...
I feel for your dad - he is a good man. Perhaps if someone else could keep mom company/occupied during the day, then dad could take the "night shift" after having a decent rest.
As for the commode, have you made it the "go to" destination when not required (ie, during the day)? This can help establish a default behaviour to eradicate the learned one. Hopefully, a little conditioning might work - you could say the bathroom is 'broken' and even temporarily disable a tap or button for the inquisitive.
As far as enforcing the commode during the day, I don't think dad has it in him to do it. *Maybe* the HHA can enforce that while she's there, but much of her time is spent giving my mom a bath and feeding her lunch (we've very recently learned that my mom will eat if she is spoonfed).
Maybe he just wants to vent and you need to say something like "Gee, that must be tough, Dad. What do you think might help?"
The solution is going to have to come from him. And no, your moving in isn't one of the choices.
* The doctor needs to find another medication that will help her sleep
* The doctor needs to find another medication that will reduce how much she pees at night
* The doctor needs to find a medication that will improve her appetite, because on a full belly she will then be able to sleep
* She needs to get spaghetti and meatballs delivered to the house every night because that's all she's willing to eat (see above)
Ideas, he has plenty of. Viable solutions, not so much. Sometimes one of my proposals breaks through, but most of the time trying to reason with him is like talking to a brick wall. To be fair to dad, mom has been exactly the same way for many years.
Seems like I'm the one who needs to vent!
Im told liquid melatonin works much better than the pill.
she needs to be kept awake most of the day
Hadn't heard this about liquid melatonin - I'll look into that.
As far as being kept awake, I'm going to look into jigsaw puzzles or something else that's more interactive to keep her stimulated. Unfortunately keeping mom awake is beyond dad's capability because he himself is too exhausted, so I'm trying to find other ways that doesn't necessarily involve much from him.