Sundowning - Does it stop?

[Bessieb]

My Mum and Dad are definitely sundowning since they moved to residential care in July. They can be quite calm and settled....and almost rational...for much of the day but most evenings they are really very confused and often very agitated. I get numerous phone calls each evening generally announcing they are 'going home' in the morning or telling me they are in the pub or on a Cruise Ship. Last night my Dad believed he worked at the CH and was worried he was going to get sacked ?!? Speaking to them for a few minutes generally calms them down but I am starting to dread the phone ringing in the evening. I've tried ignoring it but they just ring constantly until I answer.
Last night one of their old neighbours called me to 'let me know' that she has also started receiving calls in the evening from them. She was being very kind about it but was basically asking me to get them to stop. So today I think I'm going to have to take their address book / phone numbers away from them so they don't have her number. I daren't take the phone away or my numbers for fear of them really kicking off. And I don't want to upset them further.

So my question is - does Sundowning stop? Is it just because they are settling in to the CH (been their almost 8 weeks now) or can I expect it to continue as their dementia deteriorates? (Both have AZ - at about the same stage). I have asked the CH about it and they say it is very common and that actually Mum and Dad aren't that bad compared to some of their other residents. They haven't really suggested anything to help the situation ...but then again I'm not sure anything can.

 

[Tin]

My experience with mum is that sundowning has got less and less, it still happens but generally during the day and very rare at night time now. Sundowning in the past always included the phone. While mum was still living in her own home and her anxiety kicked in around midnight she would be on the phone to everyone. When she moved in with me it continued till the early hours of the morning, I did take and hide her address book and wrote down only one number for her to dial, my mobile, which was switched off at night, she could no longer remember telephone numbers. As time moved on I unplugged the house phone and mum just started leaving'air messages'. A year on and she does not use the phone, sad to say, she has forgotten how to dial numbers. There is some sundowning and it nearly always involves an obsession repeated over and over, at the moment it is our car and her wanting to be in it all the time, so I cannot lock it or she will pull at the handle, already been replaced once.

 

[stanleypj]

From reading TP it seems that usually PWD who are subject to sundowning do eventually move beyond this stage though of course there are other challenges. But it's not possible to say how long this will take.

BTW, I personally think the term would be a lot more useful if it just referred to the behaviour it was originally coined to describe. There seems to have been a fairly recent move towards using it for almost any kind of agitation at any time of the day or night.

 

[sleepless]

I do not find it a helpful term -- conjures up visions of lounging on a verandah with a nice drink as the sun dips below a warm horizon........

......what could be further from the truth?

 

[cragmaid]

conjures up visions of lounging on a verandah with a nice drink as the sun dips below a warm horizon........

....dream on....dream on!

I guess that the phrase came into use because of the fact that, as the days runs towards evening patients become tired, and the random acts which come under the heading tend to occur more often with tiredness.

Yes it has come to be linked with these activities at any o'clock now (and not just as the sun crosses a yardarm somewhere.) so it might be better if it was explained earlier in the diagnosis and symptoms process.

 

[Amy in the US]

Hi, Bessie. I can't speak generally to sundowning (other than to say that it seems to be not uncommon and can begin as early as mid-afternoon) but can comment on the phone calls.

After my mother was moved to a care home in February we also began receiving many phone calls, in the evenings only, and a lot of confusion at the beginning about where she was (often at work, needing a ride, or something similar). If you do a search, you'll find my other thread, and lots of other threads, about the repeat phone calls. Again, it seems to be quite common, not that that helps you, but at least know your parents aren't alone with this behaviour.

The phone calls were making me insane (to the point where I cried everytime the phone rang) so we made some changes. We disconnected our answerphone (answering machine) so that I wouldn't have to listen to my mother leave messages (it was the sort that played out loud as it recorded). We got voice mail installed on our phone line instead. My husband began answering calls instead of me, as he seemed better able to calm my mother and it doesn't upset him to talk to her as it does me. We only answered once a night, if that, and just let her leave messages the rest of the time. We were lucky in that she didn't call very late and so didn't wake us from sleep, but many people have that issue. And we would also sometimes just turn off the ringer. She was safe and nothing was going to happen if we didn't answer the phone, after all.

Other advice was to record a special message on the machine/answerphone/voice mail, such as, hi, mum, I can't answer the phone right now but I will call you at x time. If that's a problem as your general greeting, some people get a second phone line and only give that number to their relative with dementia.

We did take away my mother's address book and just gave her our phone number. If she's ever noticed, she hasn't said anything.

It is possible that as they settle (8 weeks isn't very long), the phone calls will stop. This did happen with my mother. We had the nightly phone calls for weeks and then one day they just stopped. I have no explanation for it. (Now we get daytime phone calls, mid-afternoon usually, relating to her current paranoid delusion. I never answer and let it go straight to voicemail. She seems satisfied by leaving a message so I'm leaving well enough alone for now.)

I know it's difficult and I'm so sorry and hope you are able to get relief somehow.

 

[betsie]

My mums is getting worse. She phones twice every night now looking for animals. She has a dog but becomes convinced she has more animals and they are lost. Tonight she phoned up crying as she had been up and down the road looking for the animals.

Find the whole thing more and more depressing, not sure what I can do to help and stop her going out on the streets looking for animals that don't exist. Especially with the dark evenings coming.

 

[Bessieb]

Thanks all. I suppose I'm just looking for some reassurance that it might stop as they settle but I know everyone is different and there is the possibility it could get worse. If it continues we will definitely have to think of a way of managing it ie removing the answerphone for a while or something similar. Ironic that just I'm thinking about what to do we didn't have a phone call last night. Maybe it's a one off but just to have one night 'off' was lovely. I also removed the neighbours phone number from their address book yesterday so hopefully she will also get a break.

I haven't heard the terminology 'Sundowning' until the CH referred to their agitation in the afternoon / evening as this. I suppose it does have some connotations that don't reflect the agitation but I was just looking for a way to describe it. It's a new thing for them and I'm finding it quite distressing. I was thinking the move to the CH would solve lots of problems - which it sort of has -- but equally it's thrown up others that I hadn't anticipated and isn't as easy as I had hoped. At least they are safe and cared for and those boxes weren't really being ticked before.

Thanks again all for your responses