Sleep issues + dementia + fall risk + incontinence. What to do?

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Sleep issues + dementia + fall risk + incontinence. What to do?

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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!

Incontinence Living Independently Sleep Issues

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You can lead a horse to water .... Those old saws were coined for a reason, it seems to me that there is little more you can do. Your mom will fall and hurt herself or you dad will burn out and end up ill himself and you are powerless to stop it because neither one will do the sensible things that can prevent it. I think the best you can do is present them with the fact that either of those scenarios will land them in a care facility without them having any ability to pick and choose their options, so by doing nothing they are really setting themselves up for their worst fears - AL and/or NH and loss of independence - becoming reality.

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I am of the belief that a fall and hospitalization are only a matter of time. My mom has already had a number of falls in the house, including one where she fell on my dad(!) and when he was able to finally get up, he called me instead of 911 to help get my mom up(!!). She's had long stretches of about 6 months where there are no falls, and she's currently in one of those stretches now, which kind of lulls you into a false sense of security, but the risk is always there.

I've had calm conversations about AL/NH with dad, and very tense ones, too. The belief of abuse and neglect being inevitable there is so firmly wedged in his mind, because he claims to have seen it happen with my aunt at an ALF years ago. And of course these things really do happen and make the news, so that reinforces the belief. My belief is that doing what we can to minimize that risk is better than the certainty of hardship and suffering in their current situation. I've tried to explain that we can visit and screen such facilities ahead of time to minimize the risk, and if there's an accident we may not get that luxury of choice. But nothing I say is persuasive.

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I was watching a YouTube video about activities for dementia patients. They made the point that getting them to do something around late afternoon and early evening helps them sleep better because it requires them to burn energy. I'm not talking really physical stuff -- they were having them do sorting and building type games. It also helped with Sundowning behavior. Folding large stacks of towels or laundry (and it can be the same items, not "real" laundry), pairing socks, sorting Monopoly money or nuts and bolts, or plastic utensils...whatever she is willing to do. Also jigsaw puzzles, assembling Tinker toys or Duplo blocks following a simple pattern you create, etc. Peeling, cutting, chopping vegetables. This activity also gives them a sense of purpose.

Perhaps it is time for your father to start consider downsizing into a care community where your mom will be in MC and your dad can be nearby in AL. Won't this need to happen eventually, anyway? People have all sorts of unrealistic notions of "aging in place" independently (ha!) -- except this plan usually involves a hapless adult child orbiting around completely dependent parents and then eventual burnout and a crisis. I'm also an only child and I'm choosing to not ever put myself through this, and my mom knows it.

I'm hoping your parents have all their legal ducks in a row...if you've been lurking on this site you know how important this is. I wish you all the best and hope she is willing to do one of those tasks!

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These are super interesting ideas we haven't tried, especially the jigsaw puzzles and folding laundry as a way of keeping her awake and consuming energy. My mom's daytime routine mostly consists of watching awful celebrity gossip and fake courtroom shows on TV for hours at a time - she usually doses off and can't describe what she was watching when asked, but is fiercely protective of the TV and will tell us all to be quiet so she can listen to her shows. Her brain is just not stimulated or challenged very much in her environment. Her sister (who also suffered from dementia) used to love jigsaw puzzles, so maybe that interest will rub off on my mom.

My dad has talked about downsizing off and on over the years, but has never really committed to it - whenever he proposed it, my mom would shoot it down (back when she was cognitively much better than she is now). They've lived in the same house for almost 40 years and are both very attached to it, plus there are a lot of practical obstacles to selling their house (how would it be shown or even staged if mom is in the house 24/7?). The only way I could see them moving out of their house is if they moved in with my wife and I, and there was a brief time when we considered that, but now I think it would be the biggest mistake of our lives. So most likely they'll be in their house for the foreseeable future.

I am trying desperately not to be that hapless adult child orbiting their parents, but it feels like this vortex that just pulls me in. I've rearranged my work schedule to be 4 days per week so I can spend a day with them during the week, and another day on Sunday...that's about as much as I can do without losing myself in the process. (Not coming over on Saturdays has been a very tough line I've had to draw, dealing with the "Where are you? You aren't working today, what else could you possibly have to do?" conversations.)

Thankfully we did all the POA paperwork late last year (yes, from lurking on this site I learned to repeatedly urge this to happen after several years of my dad dragging his feet b/c he thought it was too expensive)...so at least there's that.

Thanks for the tips, these are great!

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If dad is the one refusing overnight help then his lack of sleep is his own doing. He has no reason to complain.

Benadryl, not a great thing for someone with dementia. It makes the brain foggy and a person with a "foggy" brain needs no medication to make it foggier.

Try getting a PJ set or "onsie" that mom can not take off so that she will rely on the incontinence product.

Is mom in a Hospital bed? If yes, since she is at home you can put rails on the bed to make it more difficult if not impossible for her to get out of bed without assistance.

Since dad is the primary caregiver and he is the one you can discuss things with you need to get him to realize he has 2 options.
1. Accept over night help
2. Begin looking for a Memory Care facility for mom.
Most of them have "opened up" for tours so you could look at a few to narrow it down then take dad to do the tours with you.

By the way if a Health Aide can get her to use a walker he can as well. This really should be a non negotiation..it is a matter of her safety as well as his. She could get hurt as could he trying to help her up. And if she does fall please instruct him to call 911 for a "LIFT ASSIST" unless there is transport to the hospital 99.99% of the time there is no charge, it depends on where you are located and the services provided. (many unincorporated areas or small towns that contract services might charge.)

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Mom used to hide boxes of Benadryl between the couch cushions, and take two or three at a time when no one was looking. Same with little boxes of Nips candies. It took a long time to find all her hiding places, but we've been able to cut her off.

No hospital bed at home - the HHA brought that up a couple of weeks ago, dad doesn't want it. I tried to convince him, but no. Nothing else I can do. I was thinking of getting her onesie PJs as well as a weighted blanket to discourage her from getting up, as a substitute for rails, but I don't know if that's a safe idea - without proper supervision, I can't be sure she won't try to get up anyway and hurt herself or get scared. Also I read one article that said is was good for neuropathy, and then another that said it was bad! A good question for her doctor, yes, but he's notoriously hard to reach. Searching for a new doctor now.

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The 10 pm glass of milk has GOT to STOP!

Im told liquid melatonin works much better than the pill.

she needs to be kept awake most of the day

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I just got my dad to move the last glass of milk from 10 PM to 9 PM! If he can stick to that and resist mom's pressure later at night, it would be progress. Fingers crossed.

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.

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So, what does Dad think the solution is?

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.

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My dad is tough as nails, stubborn as a mule, and completely resigned to what he believes is his fate. He is willing to literally grind himself down to dust, and yes, that is all 100% on him. I have accepted this, but it's still not easy to watch. Cognitively he is completely intact, but unfortunately he's not all that wise. He has plenty of ideas of what would help, such as:

* 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!

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During one of my dad's "unstable" phases (and also because of his reluctance to use aids, although now adapted), I resorted to placing a bed in the passage right near the bathroom!
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.

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Hadn't thought about moving the bed itself...might be worth a try, as long as it doesn't confuse my mom too much. Even saving a few steps would make a big difference!

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).

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Geaton had some very good ideas. Having your parents downsize seems to make the most sense. They will be in a safe environment. One that will be able to change with their changing needs, but offer stability.. they can even pick and choose.. And doing it before she or your dad have a fall that might take her choices away. Unlessbthings change,, A fall is 100% going to happen. It is only a matter if time. You have been so patient and understanding and obviously love your parents alot. You have respected their wishes when they turn down your helpful advice and you have not given up finding a solution you can all live with. In the end, staying in the house is probably not an option unless you hire 24/7 care. Even then there is also the cost of maintaining the house although I don't know their financial state, it does get expensive. I wish you all the best with whatever you decide to do. It is such a painful time. Take care

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What a very thorough list of things you have tried. You have done an amazing job.

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?

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You do realize there is probably never going to be a happy meeting of all the minds. ): sooner or later you are going to have take a stand and tell them they have no choice. You have made a decision because you love them.. Or tell them the choice is now their's and out of your hands. The latter meaning you are going to feel awful, but will respect their choice right or wrong and the former meaning they might be very angry and accuse you of not caring, when that is very untrue. If you had the choice, what do you believe would be the best decision that will help them the most and for the longest time,? Do you think you could slowly introduce your decision to them, bring them in small steps to accepting the decision as the best for them? Without letting them know it was already in the works?

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Please consider testing her blood or urine for high blood sugar. When the blood sugar is high, the person will pee more often as a way of lowering it. Keep a log and talk to her doctor about medication changes since I doubt that your parents will change their lifestyle.

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.

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Actually it sounds like you've thought about or tried everything except having your mom catherized which is painful and has to have a Nurse change it once a month.
#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.

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Oh God do not use a urinary catheter -- the risk for urinary tract infection is absolutely astronomical and would be cruel -- you do realize stool (feces) goes up that tubing and infects the bladder. Urinary catheters are *NOT* made for caregiver comfort, but only considered keeping wounds from getting contaminated or end-of-life care which means they are actively dying anyway.

Use diapers and barrier cream. I changed my mom about 6 - 7 times a day and I never had a problem with it.

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MrPeanurButter, you say Dad has no dementia and has been stubborn like this "for years" (but not "always").

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.

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When my mother's legs got weak and she fell often when getting out of bed we got a hospital bed for her with bars that could be raised. This prevents her from getting out of bed. She lives in a memory care unit. At her facility they put her in adult incontinence panties and put a disposable pad under her in case she has incontinence while in bed and when sitting. It's so sweet that your father wants to take care of her, but he really needs help if he's getting exhausted. Will he agree to putting your mother in a different room at night and have an aide sit with her on a night shift. Of course it's not easy to have "strangers" in the house for people who are used to being very independent. You father will have to lock up valuables and his financial papers. Can you tell him that you are worried about his health, as a full-time caregiver? Another option would be for your mother to go to an assisted living facility if her condition declines and the care gets to be too much for your father.

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Has the doctor considered Seroquel for sleep?

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Seroquel is bad news. It's very dangerous, especially for people with dementia. I refrain from ever recommending it because of the high risk of death.

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I kept my mom up all day and took her to the park daily for 5 years using a specialized walker -- so in the morning and early afternoon I gave her coffee. It was hard work keeping her up all day but she slept all night. As a result I never used a single narcotic or psychotropic during her 15 years of Alzheimer's disease including 2 years on hospice which I used them like a home clinic to renew her routine medications and do routine labs (she was insulin dependent diabetic and had hypertension). I also used hospice for free supplies. But I did all the work. She died age 90 despite her insulin-dependent diabetes, chronic kidney disease, and liver problems...she had other health problems but I don't feel like typing a litany of them. She also died comfortably, peacefully, at home surrounded with love, and her skin was in great condition. she was bedridden for 3 months==she literally forgot how to stand up and could no longer focus on that.

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.

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Please be very careful of over medication! There hasn’t been a new medication for dementia in years. There is one in clinical trials now, but that is still years away. My 80 year old sister is the patient, never married always the independent one! A series of falls, hospital stays and her own self medication resulted in the social worker strongly recommended Assisted Living. In one of her lucid periods she agreed. She is in one now. In a lucid “moment” now she still agrees it is the best place, normally she is “get me out of here”. Was it worth the screaming, threats and abuse she put her siblings through? Yes! We cannot handle her. Is she happy? She was never really happy for years. Is she safe, much safer than being home alone, and the facility handles all medications. We, her siblings are in our 70’s and we could not handle her. Just don’t over medicate.

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I am so sorry what your going through. I am a caregiver for my mom who is 96. I am a RN and recently retired. I am an only child and I feel your pain. My father passed away years ago. A lot of pressure when you are an only child. My mom too has been a furniture walker in our home. I have moved into our family farm along with my husband to care for her. I knew someday this home would be mine.

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

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All of what you is sadly true; that is sometimes we have to wait until something bad happens to change a situation. You are lucky that you found a good NH for your mother because most of those places are not a holiday inn.

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I refuse to let my mom sleep past 7:30/8am. Caffeine pills usually come in 200 mg doses (a strong cup of coffee). I crush a quarter of one (25mg) in her morning cereal and give her another one (tell her its a vitamin) in the afternoon for lunch. Her caregiver also has been told to not let her nap unless she absolutely feels she needs it. They go run errands, buy 1 pack of gum at a CVS 30 mins away, clean around the house, etc, etc, just keep her moving. We also go for a walk every evening before diner.
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!

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First suggestion, if possible:
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.)

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My mom took care of dad she was 84 after a fall he went to a nursing home and mom ended up having triple bypass it almost killed her to take care of him put them both in a home at least assisted living

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My mom is 84 and in the 6th year with dementia. This horrid disease is all about stages. Been through some ugly ones. She would get up multiple times throughout the night keeping my dad awake. The things that’s helped my mom sleep better are the Dr. increased Quetiapine (Seraquil) to 400mg in the pm. Also, eliminated hallucinations. Using a good brand of pull-ups and jumpsuit pjs. We use the Capri length that zip up the back. She sleeps better now than before. I think it’s a combination of the meds, maybe knowing she cannot get the pjs off and simply moving to the next stage.

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The right nighttime meds will take time to discover for your mom. Each person is different so not everything works the same. You will have to keep trying different combinations. My mom is on 3 different night meds to sleep soundly through the night. She does wet during the night, but I get up at 0500 to change her diaper. If I try changing her in the middle of the night, she’ll wake and stay up all night. I just saw a commercial about the Purewick system for women that may work for your mom. You can google it to see if it may be a solution to her having to wake to urinate.

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Just to share my father was sundowning and a fall risk, The subject sounded much like my own situation, yet they are all different. My father went to a board and care that didn't have sleep staff and they could not deal with his needs. He went to a second care home with night staff and was doing ok. After being there a couple of months he fell with no one in his room, when found had lost a lot of blood and they couldn't stop the bleeding and called for emergency transport to the hospital. It is unknown how long he was unattended before they found him. He was in the hospital for two days and I wasn't able to see him. I got a call at 1:27 AM saying he had passed away.

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.

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I'm so sorry for what happened to your father. What happened to him is remarkably similar to what happened to my aunt, the same one dad brings up whenever he explains why he doesn't want mom going to an ALF. My aunt went to an ALF after an accident at home and subsequent hospitalization, and she was discharged directly to an ALF and never returned home. She stayed there for about three years and physically was doing ok, though she called my mom multiple times per day, every day, asking when she would come back home. It would more than mom could bear, and she eventually stopped taking the calls. It broke her heart.

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.

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Prayers sent for this most difficult of situations.

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Thank you so much!

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Hi,

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.

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Wow, I had no idea. Definitely a connection I would never have thought of - we had been asking her doctor about upping the dose! And we have since tried that, and it still has little to no effect on the nighttime urination, so I do think it's worth looking at just taking her off of it. Thank you for sharing this!

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MrPeanutbutter: Imho, even though you've said that your father is resistant to change (as are some elders, tbh), you may do yourself a favor by hiring a night nurse, who is an individual who stays awake at night with the patient from say 9 PM to 9 AM. I had to hire such an individual as my mother demanded to live alone in another state than my own UNTIL I could move there. Btw, I am NOT advocating that you move in with your parents. It is IMPERATIVE that your dad, the primary caregiver, get restorative sleep. Best wishes, MrPeanutbutter.

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This has been really challenging on a number of fronts. I've had countless discussions with dad about this, including today. Whenever I bring up the topic of nighttime help, he'll always offer up one of the following forms of resistance:

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?

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I don't know how else to say this but based on a lifetime of many experiences, we must face situations and take actions we never wanted to do but there is no choice. When people are stubborn or so mentally deficient, nothing is going to make them see the light, then often we have to put them somewhere (other than under our care) where they can be safer. Often their impacts on us are so major that we are negatively impacted and will slowly be destroyed. That is when the decision must be made to do something. I feel she needs to be placed with 24 hour supervision - it is killing you.

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MrPeanutButter; Hope that things are working themselves out! (((((hugs)))))

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Thank you so much! This week has actually been pretty good in terms of outcomes, but still some concerning things. My dad was able to sleep for 2 nights in a row, which he hadn't had in a couple of months. The first of those nights was when he decided not to give mom her meds, just to see what would happen, and she only got up once that night. The next night he did give her her meds, and she also only got up once. But after that she reverted back to the previous nighttime behavior. It does bring up another aspect of this that's been very hard to manage from afar - my dad frequently forgets to give mom her morning meds. He just forgets, and I don't know about it until I refill the pill box on my next visit. I'll need to talk to mom's HHA about this, now that she's coming every day (that only started happening last week).

Thanks so much for the warm wishes, they really help!

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I would try to get her to use the port a potty by the bed,especially if she has to go often in the night.
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~

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Try separate beds, or separate bedrooms.

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.

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Sleep issues + dementia + fall risk + incontinence. What to do?

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