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!
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.
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!
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.