Sundowning Mom Terrified of Caretaking Dad
May 17, 2024 5:04 AM   Subscribe

My 83-year-old mother, whose full-time caregiver is my father, has started experiencing hallucinations, paranoia, and delusions as a component of her dementia. We all understand this is common, and she is under medical care and following “sundowning” protocols. The issue is that when an episode comes on, her central focus is terror of her caregiver: my 84-year-old father and her husband of 60 years. I am looking for any suggestions to help them manage this stage of the disease and these episodes specifically.

Several years ago my mother started experiencing cognitive decline, which has been slowly progressing. A few months ago, she also started experiencing daily episodes of hallucinations and delusions. Once she called the police on my father; another time she walked out to the gatehouse of their community and reported my father breaking into their home. At that point my father moved them into a “respite apartment” in a nearby assisted living community, thinking that it would be a place to try some medication to help my mother and also relieve him a bit of all the chores of daily life, which he has been doing single-handedly for years (cooking, cleaning, grocery shopping, driving, keeping on top of medical appts, etc.).

They have been in a one-bedroom apartment in this assisted living facility now for two months and my mother is getting better in some ways (gaining weight, which she needed, and having fewer episodes) but not in others (ferocity and duration of delusional episodes). I raced down here (I live 1500 miles away) last week when I was talking to them on the phone and things really broke down--my mother entered an episode and my father started packing up to leave. In short, my mother is her same sweet, loving, generous self for a good part of the day. But in an episode, she becomes visibly terrified of my father. She believes he is going to kill her or hurt her; she says he is looking for reasons to institutionalize her; he’s recording her to report her. He’s terrifying, a bully, flying off the handle all the time, threatening her. She hyperventilates and shakes. She is terrified when he is in her presence; when he leaves to defuse the situation, she is terrified that he will return at any moment to hurt her. She believes she is being poisoned, lied to, stolen from. She believes he is an imposter. Much of this is, I think, common among those suffering from dementia. But much of it echoes the dynamic of their 60-year marriage, in which my father emotionally dominated my mother and certainly did at times bully her, belittle her, and fly into rages.

I believe my father has, over the course of their marriage, worked hard to become a better husband and father. From what I have seen in my time with them this year (8 weeks), he has managed my mother’s illness admirably, with patience and flexibility. But he remains a source of terror to her and I don’t know that any amount of medication is going to relieve her of a 60-year psychological dynamic that has been repressed for decades. They are in a terrible cycle of a good day followed by a night of panic, trembling, and banishment. My father waits in the lobby of this facility until he thinks she’s asleep or out of her episode and then sneaks back into the respite apartment to try and sleep for a few hours on the couch. He uses the public restroom instead of the bathroom in their apartment to avoid contact with my mother. I’ve been here for nearly a week and spent last night sleepless on the couch at the respite apartment while my mother wandered around like a ghost, peering out the peephole in the door and jolting every time the air conditioner kicks on. My father had gone back to their home when her episode started at 9 pm on the dot with no provocation. We were all just watching TV and then she looked at us and said, "What's going on here?" And descended from there.

Sorry this is so long. Wrapping up now, these are the options I’m thinking of. What might be others?

— My parents continue to spend their days together but after dinner, my father returns to their home while my mother stays in the respite apartment with an aide or paid caregiver until she falls asleep. If my father is the trigger, maybe the episodes would decrease if he were simply not there?

—My parents return to their home and perhaps hire a caregiver to help with the “sundowning.”

—I stay here indefinitely and share caregiving duties with my father. I can work remotely and I would miss my life with my husband but it’s clear they need help more than I need to hang out with my husband and dog.

—My mother returns with me to my home and I become her primary caregiver with support from paid staff. My father stays in their home on the other side of the country for as long as she continues to have these episodes.

—Is there a kind of "in between" facility? My mother is too high-functioning for memory care but cannot safely live alone. She still enjoys jigsaw puzzles, socializing, walking, etc., and needs a certain amount of stimulation. I talked to a few “placement agencies” but was immediately overwhelmed with emails and texts from sales managers at various facilities. I haven’t responded because I don’t even know what I’m looking for. My mother doesn’t meet the criteria for memory care: she can feed herself, dress herself, express herself, shower, etc. Physically she is in good shape. But she can’t live alone and she apparently can’t live with my father either. These episodes are horrifying to experience, esp for my mom who now lives in terror through the night.

If it helps, this is in Florida (of course it is). Thank you for any advice!
posted by anonymous to Health & Fitness (17 answers total) 2 users marked this as a favorite
I think it would probably be best to separate your mother and father for now. It will be hard on him, but if she is uncontrollably terrified by him sometimes, it is much more important to remove that from her life. Especially as the disease progresses, she may become terrified more often and for longer periods of time. Can you live with your mother in her home until she needs full time dementia care, while your father lives somewhere else and perhaps visits occasionally? That would probably be the most comfortable for her.

The solution where she goes and lives with you would be logistically more complicated, especially as she continues to decline. If she is socializing now, it will be harder for her to do that in a different city.

This is a very hard situation and I think my guiding principle would be to give your mother the best chance for a peaceful sunset period.

It might be awkward but it won't continue for too much time.
posted by seanmpuckett at 5:31 AM on May 17

My grandfather's dementia paranoia culminated in him taking a knife and threatening his wife while taking about people in buses coming to get them. My grandmother wasn't wearing her hearing aids at night so earlier signs of paranoia were missed.

Ultimately he was placed in a geri psych unit for two weeks, got some psychiatric stabilization for the severe paranoia and was sent to a facility. He likely didn't need to go to the facility right then, he never had an another episode of agression like that BUT we couldn't risk it given his physical condition so much better than my grandmother's. And my grandmother is an unreliable reporter of his symptoms.

He was placed in a nursing home and my mom became thein home caregiver for her mom.
posted by AlexiaSky at 6:25 AM on May 17

I'm sorry you and your father are going through this - it sounds so tough.

Would an assisted living facility provide enough support for your mom (not a memory care place)? When I volunteered at one of these, there were a few residents who had dementia/early alz., and they were able to live there until they needed more support.

I'm sorry you got spammed by the placement services. There are some reputable elder care advisors who will personally guide you to find the right place, and there are some who literally just pass your contact info along to every home in the area.

For general unbiased info, start with the local Area Agency on Aging. These are government regulatory offices.
posted by hydra77 at 7:09 AM on May 17 [2 favorites]

The answer to this question is likely to change over time, given the nature of the progress of dementia. For now, since this seems to be happening at the end of the day as she is getting tired and it's starting to get dark, I think it makes sense for your father to try leaving after dinner and staying at their house so that he can spend time with her in her better times. She's in an assisted living facility, so she has other people who can supervise her if she wanders or needs other support. I would try that first, given that it works with your family's current setup quite well.

Of the options, I would not move her back home. It will get worse there, with or without an additional caregiver, and it will get increasingly bad as time goes on. It's better to have her eased into an assisted living situation that continues to give her some independence that's reflective of her current abilities until she does require memory care of some sort. It is also so important for people with dementia to have social interactions with other people and to keep relatively busy with activities so they can maintain what mental faculties they have left while they have them - for example, they found that the isolation during the pandemic had a significant impact on the speed of decline of many people with dementia. Moving her back home means more alone time, which is not good for her now.

While it may be tempting to see if she's better with you, ultimately it's likely that this type of paranoia will be transferred to you instead of your father. It's a common symptom for people with dementia. What you might consider, and what I did when my father was in this stage of dementia, is moving closer to your parents for a bit (maybe with your husband and dog, if feasible) to help share the effort of supporting your mother, as well as get to spend time with her while she is still doing fairly well and you can enjoy time together.

I would also start researching memory care facilities now, since the decline to needing that type of care can come on pretty rapidly, and make sure you know what your options are and how long the waiting lists are. There may be a point where you realize you need to get her into such a facility, like, yesterday, so getting your ducks in a row (including working out things like wills and power of attorney, etc, if not already done) are super, super important now.

Good luck. This is a such hard thing to go through.
posted by urbanlenny at 7:11 AM on May 17 [8 favorites]

This is so, so hard. You sound understandably overwhelmed. I want to counter something you said, because I don't want you to close off all options--even though the number of options may seem overwhelming.

Every memory care place is different, with different criteria about who "needs" it. For example, one facility I toured in Virginia had almost exclusively people with such severe dementia that most were nonverbal. Another one had people who regularly argued for going home and outwardly may have seemed to this stranger not to need to be locked in, but they wander or are otherwise unable to care for themselves without staff being able to walk into their living space to help them. Sometimes this is purposeful and what a facility wants to differentiate for in the local market, and sometimes it's just a cyclical thing.

Could your mom move into locked memory care in the same community where your dad would live in assisted living? This would allow them to be together as much as he's able to proactively do. He could spend hours each day with her, and exit to his own room/apartment before nightfall's terrors.
posted by ImproviseOrDie at 7:20 AM on May 17 [13 favorites]

+1 to researching memory care now and to having your father leave after dinner for now.

Also, has your mother been to a doctor for a check up since this started? My dad didn’t have dementia, but when he was going through terminal kidney disease, he had an infection that caused some intense psychosis/paranoia/hallucinations. Your mother’s cognitive decline, past experiences, and sundowning are enough to be the cause of this behavior, but it may be worth mentioning to her doctor (or a geriatrician if she doesn’t have one yet) to rule out any other causes.
posted by itesser at 7:25 AM on May 17 [6 favorites]

+many on memory care option
My grandmother for whom I was the main caretaker went from assisted living to memory care in the same organization finally when she was trying to escape the assisted living. I was very worried, but it ended up being a very positive change; we should have done it sooner. There was much more activity and social interaction and the staff was so skilled with dealing with dementia. She very much could wash herself, feed herself, move around, and socialize to some extent. The people in memory care seemed much, much healthier and independent physically than the assisted living and skilled nursing. The schedule is very helpful too with waking up in the morning, three meals, and going to bed at night with medication management.

+many on this being temporary
Just like a toddler's development phases mean that the current problems will just become new problems in the next phase, this is temporary but the dementia will just get worse, not better. Of the options you list, the first where your dad leaves at night seems to make the most sense because the others (them both moving home, you moving there, your mom moving to you) seem to assume that things aren't going to progress as they are and require entirely new solutions. By this, I mean that with the increasing dementia, both living at home or mom living at your house or you living there will only be temporary solutions that need new solutions unlike memory care which will be an ongoing solution for a long time.

"I can work remotely and I would miss my life with my husband but it’s clear they need help more than I need to hang out with my husband and dog."
Please examine this for your health. Your relationship with your husband and dog are very important I assume to your mental health and hopefully will be going on for some time. This is very stressful and sacrificing yourself to fix this undeniably difficult but ultimately unfixable situation will not help anyone. I spent a few years taking care of my grandparents, taking calls at all hours, driving to take care of things at a moment's notice, spending hours on their paperwork and bills and insurance and communicating with so, so many caregivers and family members while maintaining their family home to the detriment of my health and my children. I had family who told me to prioritize my own health and family, but I couldn't listen at the time. I wish I had at least been better able to handle and manage my stress and the impact on my body.
posted by RoadScholar at 8:01 AM on May 17 [9 favorites]

Also, has your mother been to a doctor for a check up since this started? My dad didn’t have dementia, but when he was going through terminal kidney disease, he had an infection that caused some intense psychosis/paranoia/hallucinations. Your mother’s cognitive decline, past experiences, and sundowning are enough to be the cause of this behavior, but it may be worth mentioning to her doctor (or a geriatrician if she doesn’t have one yet) to rule out any other causes.

Just +1 on this because this is my today. My mom had kidney infection from a UTI and it caused exactly this. Sometimes I think it's too easy for medical providers to fall into the sundowner diagnosis. Saw it with my dad before his passing to. For my mom, yes 100% sundowning was happening but the underlying cause was acute from her UTI and less so her progressing dementia.

I'm sure you're aware of this, but worth sharing in case you aren't or for others.

As someone dealing with this exact calculus I've got nothing but a lump in my throat and an internet stranger hug for you.
posted by chasles at 8:04 AM on May 17 [15 favorites]

Also nthing doctor, preferably geriatric specialist. I assumed my relative's problems would only inevitably get worse, but as it turns out, one of the medications they gave her after we explained the extent of the paranoia, delusions, and hallucinations did WONDERS and really turned things around. Currently everything is much better than it was a year ago. This didn't happen until we wrote the doctor a letter about the specifics of the dementia. I don't know which of these medications did the trick, or if it was the combo: donezipril, memantine, buspirone. (Sorry if you've got this all covered.)

The research on memory care etc. that everyone mentions ... I've seen friends go through all of the stages of this situation. It seems like the research is really making a list of places that seem acceptable and affordable (as in, can they literally be paid for within the family budget? some of them are just wildly expensive). When it becomes needed, the deciding factor is going to become the waiting time. So there's no point in driving yourself up the wall finding The One Perfect Situation--nor do you want to take a friend's glowing recommendation of a place and stop looking--because the odds are pretty good it's not going to be available until 6 months after you need it.

P. S. all the virtual hugs; please be kind to yourself during all this. It's so exhausting to handle. Remember to have some sympathy for yourself, too, and give yourself comfort and breaks from thinking about it.
posted by wintersweet at 8:23 AM on May 17 [3 favorites]

So much good advice here.

Get her a medical appointment for UTI or other infection soon.

But yes to looking at memory care places that cater to either less severe cases or a range of cases. My mom is thriving at her facility in Vero Beach FL (send me MeMail if a facility in VB would be useful. we toured a bunch!). Mostly because she gets so much more interaction and activity than she did when my parents were at home. We moved dad in to the assisted living next door and he visits her a couple times a day, but she's happier with the programming than sitting around with dad, so that's where we are at.

Mom is in need right now, but also remember that your dad needs help now too, and getting this off his plate is a huge gift.

It's expensive, and I'm really aware of how much privilege we have to be able to afford it. Love to all y'all. This stuff is hard.
posted by advicepig at 8:56 AM on May 17 [3 favorites]

Former ICU nurse adding that infections in patients with baseline dementia often, usually, and almost always make dementia worse. Before you do anything please have her checked by a good internist, and this is a good time to explore getting a geriatrician. There may be a wait for an initial geriatrician appointment, so I'd suggest you look for a geriatrician now, but in the meantime see her regular physician.

UTIs are the first suspicion, especially in women, but any infection (sinus infection, bronchitis, etc.) can prompt worsening symptoms. In my ICU "ICU psychosis" in hospitalized patients was not uncommon, even in patients with very minimal dementia symptoms at baseline, and sundowning was often the first symptom, prompted by the stress of illness/surgery/constant noise and light/pain/unpredictable input of strangers doing things to them/unrelenting and unpredictable beeping of monitors/resulting in never having restful sleep. Recognized dementia patients almost always showed worsening symptoms (even without infection), with sundowning, agitation and paranoia among the more usual symptoms. In that situation we focused on calming the patient, sometimes with medication, and preventing harm to self or others.

For this reason I think it is much better for your father to leave the apartment than to relocate your mother, but please rule out an infection ASAP! If the sundowning and paranoia don't improve after an infection is treated she really needs the input of a skilled geriatrician to help plan for the future. You might find that traveling there to help organize the situation and settle plans for the immediate future would help your parents and help relieve the stress on your father, who sounds like he is trying to manage this alone. You might suggest to your father that he contact the area organization on Aging (every county should have one) which might help with geriatrician referrals. And talk to your mother during the day when she is lucid. Does she even recognize what is happening to her at night? She might, and she might also be terrified and overwhelmed.
posted by citygirl at 9:28 AM on May 17 [8 favorites]

"ICU psychosis"

Thanks for reminding me of this citygirl. I should've added this as well. I leaned with my dad about "hospital acquired delerium" and boy howdy do/did both my parents suffer from that. My mom will go 0-100 in terms of hallucinations (none at home, second night in the hospital and the KKK and a giant rabbit are plotting their revenge.... That's a literal quote).

No shortage of info on HAD but here's one:
posted by chasles at 11:51 AM on May 17 [2 favorites]

I can work remotely and I would miss my life with my husband but it’s clear they need help more than I need to hang out with my husband and dog.

Friend, this is not true. Do not light yourself on fire to keep others warm, even if the others are your parents who you love dearly.

When I was a kid I watched my parents spend years absolutely driving themselves into the ground to take care of my ailing grandparents, and those years have had lasting effects on their mental health and our family in general. Please don't feel like you need to do that to yourself in order to be a good person or a dutiful child to your parents. This stuff is SO HARD, but please just remember that you, and your life, and your mental health, matter too. Sending internet hugs to you as you grapple with all this.
posted by peperomia at 12:53 PM on May 17 [17 favorites]

I am so sorry you are experiencing this. I know how difficult it can be.

Having your dad go home in the evenings was a great move.

That said...Please do not contemplate any plan that includes you caring for her, either in her home or yours. This will not end well for anyone, especially you, and things will spiral out of control shockingly fast.

When my own mom was caught wandering (which was, for her, the stage that came after sundowning) by the police and taken to a hospital, the hospital then dumped her on us and ordered us to take her home with us. That lasted exactly half a day before mom was screaming and violently flailing at us. At that point, we knew she needed to be in a memory care facility for the sake of everyone involved.

All of this is to say that now is the time to get serious about getting mom into a memory care facility, before she does harm to others or herself. Sadly, she will only get worse.
posted by Thorzdad at 1:15 PM on May 17 [2 favorites]

A shot in the dark maybe, but you said the episode started at 9pm on the dot -- does it always? Could the trigger be something like a morning medication wearing off, or her getting hungry or thirsty, or some other thing related to the time?
posted by librarina at 2:20 PM on May 17 [1 favorite]

If her husband was sometimes scary to her when her brain was functioning as normal, it's actually VERY reasonable for her to be scared of him now . Your thought that this is a repressed but well-worn psychological dynamic resurfacing sounds accurate to me based on what you've said. I mean who knows what their dynamic was like at night for all those years of marriage, wouldn't be the first time a man became scary when the lights went off.

So in that case, yes, if her fear resurfaces at 9pm, by all means, hire a night nurse to handle bedtime, and get him out of the house by 7pm so she can wind down and sleep. And he can sleep somewhere else.

And yes, check for UTI or other infection (white blood cell count) - they make dementia shockingly worse and are so easy to cure.
posted by nouvelle-personne at 11:42 PM on May 17 [1 favorite]

Mod note: Comment and response removed. Please avoid speculation and focus on helping the OP based on the information given, thank you.
posted by Brandon Blatcher (staff) at 7:07 AM on May 18 [1 favorite]

« Older How to look impressive at my job   |   How do I proceed with this temp job and not... Newer »

You are not logged in, either login or create an account to post comments