Dealing with sundown distress and agitation

[titum]

DM (79) is somewhere in middle stages of dementia (though only just diagnosed - but that's another story). She lives at home with dad, no carer yet though I'm pressing hard to get a bit of help coming in.

Things were sort of OK until the last month or two, but now they're starting to struggle more and more. DM is sort of OK during the day, though she feels ill a lot of the time and is very forgetful and confused. But she's now entered a pretty extreme sundowning phase - shouting absolute vitriol at dad for an hour or two before bed - how she hates him and wishes he'd die and wants to leave him, and shouting over and over again that she's dying or wants to die. I went to stay this weekend and it was so distressing - I tried everything I could think of to calm her down (music, photos, calming touch etc), but I just couldn't. I got her into bed and she fell asleep, only to wake again a few hours later, shaking and terrified, still shouting that she's dying, and then sobbing.

It's totally heartbreaking to see her so distressed. Has anyone found anything that helps with this?

Oh goodness, that sounds really difficult for you all.

Sundowning can be so powerful. We survived it rather than coped. The only thing that really helped us was a spell in a nursing home, which was initially very traumatic for mum, but dad and I had come to the end of our resources. She was in for 12 weeks, during which time we organized for a live in career to support them at home. We were able to bring her home, and I think that she was so grateful to be back that she settled much better afterwards. It wasn't easy though. Or cheap.

Try to remember that her anger and vitriol is an expression of her fear. She's confused and afraid and knows that she is losing control. So she is hitting out at the person who is nearest to her. It's the illness talking, not her.

Darkness/lack of light seems to trigger sundowning. You could try something like fairy lights - still ones, not flashing - to switch on for her to try and distract her and make evenings special. Switching on calming/favour music could help too. Also ask the GP about anti anxiety meds. She sounds really distressed.

Thanks, and I'm so sorry you've been through this too. It's just so desperately sad. I know it's not mum's fault, so I'm only sad because she's so sad - but it's much harder for dad, because it's so relentless. He's pretty patient with her, but I know he gets frustrated and snaps at her sometimes, which is totally understandable. I'm only able to go over every three or four weeks, so it's easier for me to stay calm.

It's interesting that going away and coming back helped for your mum. I'm trying to persuade dad to get a carer in, because although he thinks he's doing everything needed (and he is doing an awful lot), he really needs a break sometimes, and mum's just starting to need a bit of personal care, which he's less comfortable with. He's getting older and less on it as well, and I really want another pair of eyes on them both more regularly. It's hard though - I can cajole and nag and help to organise, but ultimately I can't dictate.

I've encouraged dad to play more music in the evenings, as it did help for a while. Lights are a nice idea too. Dad's good with lots if things, but he doesn't always think about the 'softer' side.

That sounds incredibly difficult for both of you. It may be worth speaking to her GP or dementia team, especially as the distress and agitation have become much worse recently. Sometimes changes in medication, pain, infection or other health issues can make these symptoms worse. I hope you can get some extra support in place soon — you shouldn’t have to manage this alone.

has she been checked for a uti recently?
they make the elderly nuts.

This is not useful or helpful language.

My dada has Alzheimers and sundowning is awful. We now have carers coming in three times a week to take my dad out and give my mum a break. They also come 1 day a week to take him and collect him from a day centre. We tried sending him without the carer ssupport and it was a disaster, nearly punched the driver, but with the carer taking him and settling him it seems to be working. The whole thing is horrible and I have to be honest if i could give him a tablet so he could go to sleep and not wake up i would. He would not have wanted to live like this and i know there is much worse to come. On the positive he is more loving than he ever was, but this is because he is scared. he wants to hold hands all the time. It is so sad. It really is the long goodbye.

Could you use a daylight bulb and get into a routine of watching something calming on TV or listening to some music that she enjoys at that time of day, while keeping the light bright.

Does she have any medication to aid her sleep, so she can sleep through without waking and feeling scared? It would help her, but also you, as dealing with this alongside regular broken sleep is really challenging.

Just one word of advice. Christmas always made mum much worse - specifically putting up decorations and receiving cards from people. The decorations make your familiar/safe environment look different, and if you are aware of the cards, it can highlight the fact that you have no idea who all of these people are - and you should know. Then someone puts all of the cards up too, so you are reminded of all of these strangers all around you, all day.

The Alzheimer's Society recommended keeping things as normal as possible.

By the way, their helpline is brilliant if you or your dad ever need to talk to someone who has been through this - and they have loads of useful advice too (eg dementia friendly dentists. That was handy when mum refused to open her mouth for the, then got scared of the chair tipping back and screamed the place down!)

Contact her medical caregiver with the description you have provided here and with the request to assess the suitability of medication to assist your mum.

Thanks so much for all the advice. We've finally got a carer starting tomorrow, only two hours a week at the moment, but I'm hoping this will be the first step towards more support in future. I'm praying the visit goes well and mum likes the carer.

Part of the problem is that I have no contact with her GP. I've written to them a few times to express concerns, and I think that's perhaps triggered interventions, but they're not able to contact me back. I've tried to persuade dad to let me come to an appointment, but he doesn't see the need, because he thinks he's got it covered - which used to be true, but he's now increasingly forgetful and less able to grasp what's being said, so I have a limited picture of what's going on. For example, I know mum was previously on anti anxiety meds (but now isn't), and the doctor keeps putting her on and off Zopiclone for sleep problems, and it looks like mum was prescribed Donepezil but not on a repeat prescription, so she's now off it again.

It's just so hard trying to help from a distance. If I was there regularly I could try to implement calming routines in the evening, and I might eventually wear dad down about accompanying mum to the GP, but I live a couple of hours away and have a very inflexible full time job, so it's really difficult. I'm currently trying to suggest that I dial in to a GP appointment remotely, but dad doesn't seem terribly keen.

@nearlyemptynes i hear you. Mum has basically no quality of life now. If I heard tomorrow that she'd passed peacefully in her sleep, I would think it a blessing. Like your dad, she's also become much more affectionate - we were never a huggy family at all, but now she seems to crave that physical affection. Hearing her shout and swear is horrible, but the very worst was just seeing her sob. I've probably only seen her cry a couple of times in my life, and never like that, and I found it very hard.

My next step I think is to phone the care agency after the visit, so I know they've got my contact details, and I can give them a bit of context on the situation. I might try the Alzheimers helpline, too

Talking Point. An excellent forum of people who are going through it are have been through it.
Best of luck, OP

https://forum.alzheimers.org.uk/

This sounds very difficult for you. You could get a care taker for her as with time this would worsen and her condition would become more complex, it would be difficult for all to pay attention to her all the time.

apologies didnt mean to cause offence.

has she been checked for a uti as these can severely affect the elderly, causing confusion and agitation as the infection interrupts the cognitive function.

CBD gummies may help.
i know that many people are not keen on the idea. But anecdotally they seem to work,

my husband has young onset, and I now have a wide circle of friends dealing with this.

Yes, check for UTI was clear.

Sundowning is the absolute pits and we went through it too. It's unpredictable, some days he would be OK, others just so unsettled and agitated, shouty and awkward. Is she on any sedatives or similar? Dad was on some sort of tablet which was supposed to calm him down and take the worst of the sundowning away. Worth speaking to her GP.