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!
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
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).
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!
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!
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 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!
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.
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.)
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.
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.
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!