Night time phone calls

[Chelmew]

90 yr old DF In good health. lives alone. Carers come in to give meds and make a sandwich- I do all other life admin- i have posted about him before
Following assessment from doctor he's in really goods health (for his age) No dementia - just age related cognitive decline.

Our main issue currently is his lack of time awareness- eg. last night he phoned at 1.30 am wondering where his lift was. - he was being picked up at 1.30 pm. We have tried dementia clocks which say night time/day time etc - he can tell me what time it is but he doesn't believe what the clock is saying - also its dark outside but he can't seem to relate that to the time of day.

My concern is that he has started going out on his own at night eg to the corner shop thinking its day time which is dangerous. (Also that he is phoning me in the middle of the night to tell me the shop is shut and i am knackered !!)
Anyone else experienced this and has any useful strategies to manage it?

Thanks

If he had to use a different microwave would he be able to learn how to use it do you think?

How often is he microwaving food?

Does he write/say his shopping requests or just accepts what he’s given?

Great news that you go to the appointments too (for him at least, it’s a lot of work for you) but I do wonder if you’re so used to what he needs doing for him that you are unconsciously ‘masking’ sometimes as well. I wonder if yes he has hearing loss but he also struggles to understand some language, which you automatically simplify for him when repeating things, for example.

I think you are spot on.

He couldn't use a different microwave. I've just got him a new mobile phone at his request - it is just the newer 4G version of his old 3G one, works exactly the same way. But he cant use it. I've got him a simplified TV remote , he couldn't use the one that came with the TV and I got him a landline phone with 4 pre-programmed buttons .
He doesn't need to 'mask' - i'm doing it for him.😳
This is a big wake up call for me.
Thank you

He’s wandering, which is a classic dementia behaviour.

https://www.nia.nih.gov/health/alzheimers-changes-behavior-and-communication/coping-alzheimers-behaviors-wandering-and

I haven't been able to find any research or stats on this, but I personally suspect that a significant and very large number of elderly people who're assessed as having cognitive impairment are actually in the early stages of dementia. If there's a proportion of the population who're assessed as being cognitively impaired and don't go on to develop dementia, is it because they died of something else first?

And yes, I agree with pretty much everyone else that this sounds like dementia, and also with the unconscious masking.

GPs often use a very basic screening test that doesn’t pick up every one with dementia.
Memory clinics use a range of tests including the MOCA test. I’ll link a comprehensive toolkit that might be interesting for you to look at and includes the MOCA

https://www.southeastclinicalnetworks.nhs.uk/wp-content/uploads/2020/12/Dementia-Diagnosis-Toolkit.pdf

i think you need to reconsider the possibility that he may have dementia. That doesn't sound like normal decline to me.

I suspect you will need to push his GP for a memory clinic referral, as they will do more specialist tests to check his memory. Clearly going out at night and thinking it is the daytime is unusual, unless he’s spent his life living in the Arctic circle. Has he bloods done to check things like thyroid, vitamin B12, thiamine as well as the usual liver, kidney and full blood counts? 💐

Bless you. Those of us who have been through it (sometimes more than once), can often spot the signs long before an OP can. And then it is a case of helping the OP to think more, question more, realise more.

And as you have found, GPs are often just not equipped to see through all the masking.

Thanks for everyone's thoughts. I think you are all right and i need to get my head out of that sand i've been burying it in 😖

I'm going to have a look at this toolkit.

I suppose my worry is even if he does get a diagnosis - does that change how i support him day to day?

I see you have realised these behaviours are dementia. It can be hard to realise as it creeps up on you, and as you say you step in to do things without even realising.

I wouldn't worry about getting a diagnosis. It would mean the GP referring him to a memory clinic (likely to be a lengthy wait for that) and then an MRI scan. And as you say, it won't change anything except you're calling it a different name.

Re your original question, the only way to manage the night time calls is to turn your phone off/silent when you’re asleep.

I wouldn't worry about getting a diagnosis. It would mean the GP referring him to a memory clinic (likely to be a lengthy wait for that) and then an MRI scan. And as you say, it won't change anything except you're calling it a different name.

It would be important for his ongoing care, however. Especially getting him admitted to a suitable care home once it is clear he's not safe on his own at home.

Thanks @catofglory The simplest solution is often the best 😆

I've just had a ring doorbell alert for him- he's headed off to the pub to meet his friends. He can tell the time when it is his regular Wednesday meet up with 'the lads', just not when he's phoning me in the middle of the night 😂

We never had a diagnosis and had no problems getting my Nanna admitted. It was clear she had dementia and once adult social services became involved they do their own assessment of needs anyway:

@runadun yes that's my experience too. The care agency/care home do their own assessment. Some people just refuse to go through the diagnostic process, including one of my relatives, but she still got the care she needed.

He has dementia
Look up tips on associated websites

Both my parents had dementia and we found it easier for them to gauge the time if the clocks showed the 24hr time. We bought them new digital house clocks and watches, and set their mobiles to 24hr time too. We also bought them this system myhomehelper , We could make video calls to them but it would also speak out loud any reminders and the time. I don't know if either of those suggestions would be of any use but I completely sympathise with you. We had the night calls too and you can't help but get frustrated.

My DSM had an emergency phone line speaker thing installed to a 24 hour service provider, who would assess and either just talk to her to check she was alright, if she activated the alert, or call emergency services.

She used to press the big red button to call them, and ask them to make her a cup of tea 😆

So just as a practical solution to the time thing, we found a groclock really helpful for my relation with dementia as she deteriorated. It feels patronising, but it's a very clear cue - if it's blue, it's night, if it's yellow it's day. It's also an easy to read clock, which helps. She didn't realise it was designed for toddlers, and quite liked the gentle light, as well as learning the cue easily.

How long has he had the day vs night confusion? Did the GP do a urine test? UTI's can send elderly people right off, but as others have said, mental decline can also. Has had a social services assessment?

Whilst not all the symptoms, some sound like sundowners https://dementiaadventure.org/news/understanding-sundowning/?gad_source=1&gad_campaignid=20424388739&gbraid=0AAAAApztyn3pHf_7yrvqy4rJ834SOJY50&gclid=CjwKCAiAzZ_NBhAEEiwAMtqKy7qnMxq2XBrJIzEgJaSRSy3CCPV-0DKF9TiWNotuwTEznK7S0V-KBBoCjMgQAvD_BwE

There might be some advice here too:
www.dementiauk.org/information-and-support/living-with-dementia/making-the-home-safe-and-comfortable-for-a-person-with-dementia/

He’s had a few UTI’s @7238SM
They made him really ill. I keep dip sticks now and test if he’s very bad but he’s not had one for months now.
He had a recent social care assessment - thats how we got the carers to support with medication.
The sundowners info looks interesting. I’ll had a read. Thanks
.

Sincerly is 100% right. I know sometimes it can look harsh but this isnt going to get better. Elderly people are often very crafty about hiding their decline. My late Mum was clearly struggling with everyday things and if I said push that button she would pull.

Many many times when she was living in independent living she struggled. Couldnt let anyone in through the door control. Turned off all the electric points and unplugged including the phone so I couldnt call her. I told her not to go out without me as we would practise the route to the local shop when she moved. It was literally at the end of the road about a 3 min walk. She ignored this and tried it herself and got terrbly lost. She was brought back by a kind stranger and it was the warden at the home who told me. She wasnt going to tell me.

Where once she had said she didnt want to be a burden she became exactly that. I know it sounds horrible to say but when the phone went and I could see it was either her calling me or the warden controlled development ny heart sank.

I had siblings abroad one of which wasnt interested and the other would give me 'helpful' suggestions whilst doing nothing themselves and only travelling back when it was convienent for them

I agree. One of the first signs with my mother was her getting mixed up with the time.

Mum had a memory test when she was in hospital. It was very very sad seeing some of her answers. At the end of the test I asked her how she thought it would go and she felt it went well!

Mum always wanted to go to the Doctor. She unfortunately felt that the longer she was in hospital the more chance she had of being given a pill to make her 30 years younger.

In the end someone put the dots together and concluded that a home was the best place for her. She was self funding so easy for them to pass it on.

With regards to mobiles and calls in the middle of the night. Both my parents were in care homes. No way would they have been allowed to pester and various people in the middle of the night. Some people still think that if they have capacity they should be allowed to do what they like. Care homes have ways of managing these people. Clearly those people have NEVER experienced parents who make daft/stupid decisions and putting themselves in danger.

He’s had a few UTI’s **
They made him really ill. I keep dip sticks now and test if he’s very bad but he’s not had one for months now.
He had a recent social care assessment - thats how we got the carers to support with medication.
The sundowners info looks interesting. I’ll had a read. Thanks

My mum is on a constant low dose of antibiotics to keep UTIs at bay. She's only had 1 in about 4 years since taking them