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

Have seen this with two elderly relatives and a near neighbour, but in each case, dementia had been diagnosed.

Re strategies: my neighbours daughter endured many sleepless nights taking phone calls. She tried the am/pm clock; large notes on the door - ‘If it’s still dark you are too early Dad’ I think was one of them Sadly nothing changed and he was admitted to a home.

MIL used to call at night from her mobile, usually by accident as she was playing with it. Again, that only stopped when she went into a home, and they put her mobile in a drawer overnight.

Sorry, I have no answers really.

Frankly I think the doctor is wrong. This is classic dementia behaviour. The tests offered by GPs are incredibly basic. Sorry but he may need more help than he has now. Medication may help. Ask to see a different doctor.

I’m sorry but this doesn’t sound like age related cognitive decline. My father is older than yours and even though he forgets general things, he absolutely knows the difference between night and day and wouldn’t be going to the corner shop at 2am. I think you need to face the reality it’s more likely the onset of dementia. Things are likely to start getting worse so at least you can think about what measures you’ll need in place further down the line.

It may be age related, but it is still cognitive decline, particularly with the day night reversal. When was he assessed? Is it time for him to see the GP again?

He saw the GP yesterday.
Even if it is diagnosed as dementia, is there any way of managing this 🤷‍♀️

I think this is fairly ‘unmanageable’ really except by having 24 hour care in some form, or by accepting that this is really risky and his wishes may have been to stay at home and accept the risks. The risks of wandering at night are a bit extreme though, as you say. What would be his views/finances on 24 hour live in care - he would need waking care which is very expensive? What would his thoughts on a care home be?

What did the GP say to you? Do they have any practical suggestions - I know that sleeping meds are an absolute minefield in the elderly and may make risks worse, but it would be good to at least discuss it.

Thete are some services in my county (day centres etc) which require a diagnosis of dementia to access so in my county it’s worth trying to get that diagnosis. Tbh if it’s not dementia (frankly, it almost certainly is) what is the GP’s explanation??

Thanks.

I tried the notes too- they didn't work either. :(

I guess you could string together something like door alarms that ring you plus smart speakers so you can talk to your Dad. But tbh that’s not likely to work either and it will absolutely ruin your health.

Id call Age UK today and talk through options, and then probably Adult Social Care duty desk for an urgent care needs review. I think he is looking at significantly increased care.

Age related cognitive decline

Were you in the appointment? Many people are good at masking dementia, in its early days, unless there are people in there with them who know some of the answers they are giving are not true. Did the doctor do a memory test on your DF? Was he asked to draw a clock? Etc.

Sounds like you need another GP appt, which you need to attend. At the very least, your DF needs to be referred to the Memory Clinic.

Also, do you have LPAs for your father? If not, get that going before he is diagnosed.

As for how to manage it in the future, it's probable that your father will need to go into a home to keep him safe.

Right. As you say, best to keep going with getting practical help and leave the diagnosis with the doctors. Tbh probably people will start talking ‘as though’ he has dementia anyway.

He wants to stay at home. He is able to pay for care at home and is self funding.

His memory is fine- short medium and long term.

Its the time thing that is the only real sign of dementia. It is this which has led to needing carers to manage medication as he was taking it at odd times according to his unreliable sleep schedule rather than the time of day it was due. Thinking back though he has always had a very loose routine - often napping in the afternoon- getting up and going to bed when it suits him- he's lived alone for 40+ years so I never knew the extent. I suppose the noticeable thing for me now is that he now phones me whenever he is unsure: to ask the time, tell me the shop is shut or to tell me the carers are late (they are not late- its the middle of the night Dad!!!)

My friend had a very similar problem with her mum and improved things by getting some 'memo minders'. They're motion activated and you can record a message like "Hi Dad, don't go out if it's dark. Go back to bed and I'll call you in the morning". You can put them by the doors and phone and set timers on them.

Hope it helps as this must be such a worry for you.

Morning. My sympathies as interrupted sleep and constant worry are very hard on you. Here are a few ideas that might help a little but won’t solve everything. I would say if your dad has capacity he will need to agree to these actions.
If this is a sudden change in behaviour then it might be worth getting him checked for a uti. They often present differently in older people and can change behaviour. Also consider if he is a little dehydrated in the evenings/night.

You can get a tracker to pop in his jacket etc so you can monitor how many times this is actually happening and where he has been. It will also hopefully give you a peace of mind that he got home safely if he goes out.

As suggested previously you can get a sensor on the front door that activates when he leaves. It can be activated with your voice so hopefully familiar to him.
You can get advice from your local social services to see if they can advise you on what other equipment/services might help.
Also consider registering him for ‘The Herbert Protocol’ just in case and now is the time to think about Power of Attorney if not already sorted.
Hope this helps a little.

His memory is fine- short medium and long term.

It clearly isn't though, is it? He can't remember that darkness outside = nighttime. He can't remember how to tell the correct time. He can't remember not to call you.

Longterm memory is often not affected by dementia.

Ask him to draw a clock with the numbers on, OP. That's often very telling.

Also, check how/what he's eating. Look in his fridge for very out-of-date food. Check his bins to see if he's throwing away good food. I used to make my gran sandwiches, then find them in the bin the next day. Of course she told me that she had eaten them...

What I mean is, his nutrition may well be lacking. And if you ask him if he's eating well he'll say "Yes!". You need to find out what's really going on.

And there's no point sending him to a GP appt on his own. You need to be there.

MIL was like this with her dementia. She kept going to the High St in the middle of the night and then ringing us to say the bank wasn't open.
I went with her to her GP mental assessment and it was very revealing as to what she couldn't do. She had been hiding it well. The test should be quite a long one with things to check current, recent and long term memory.
If your df is already badly losing track of time, I suspect there will be other signs too.
As we didnt live near to MIL the only option was to get social services involved as we thought she was at risk. They tried the camera/ voice door lock thing but it didn't work. She had enough faculties to work out how to get around it and leave the house at weird times. A friend had to keep going into town to collect her. I was quite cross at the reluctance of social services to find her secure accomodation.
It became obvious that she needed to go into a care home for her own safety. We moved her to one near us and we didnt regret it.
My advice would be to have your df retested and really push your social services to come up with a care plan

Agree with @CurlyKoalie , you need to start down the road of getting Adult Social Services involved. They handle care, not the GP.

This sounds really helpful.
any idea where she got them from. I’ve not seen these.
He has a care plan. Mostly around managing medication.
I have a ring doorbell so I can see when he goes out. So far it’s just the corner shop he’s gone to so he’s only out 2-3 minutes.
i do all his shopping but the poster is right who said he will tell me he’s eaten to placate me and I know he hasn’t 😞

Fair point!!
Hes ‘masking’ well by being able to remember what his grandkids are up to. Asking about specific events they are involved in. What his friends are doing and meeting up.
But the loss of time perspective is huge really isn’t it.
I go to all his appointments with him. He can’t hear what they are saying without me there to help.

Not sure where she bought them @Chelmew. Loads online but here's a link so you can see what I mean. independentlivingsupplies.co.uk/product/memo-minder/

It was better than a written note because it actually spoke to her in my friend's voice so felt real and was familiar.

Thank you so much. I hadn’t seen these. 😊

He can’t hear what they are saying without me there to help.

How are the memo minders going to help him if he can't hear them?

And as for the PP who suggested he wear a tracker in his pocket - he won't. It will get forgotten too.

OP, is he safe with using the oven? A kettle? A microwave? You should test him on using these things that can cause harm if not used properly.

They cover it up very well in the early stages and I do think that we, as relatives, are happy to explain it away as ‘nothing’. It took me a long time to put the pieces together and realise we were looking at dementia; the early signs are so subtle and they try so hard to hide it and appear ok. Mine only ever had ‘cognitive impairment’ diagnosed. She was on the early stages and skipped mid stage dementia completely after a period of hospitalisation and delirium. Straight to the later stages and died a few months later, after being admitted to a care home, without ever getting a dementia diagnosis but it was clear what we were looking at.

Good point 😕 I'm probably clutching at straws aren't I.
I have told him the oven is broken so hes not using that

He can use the microwave and kettle. I heat him a hot meal when i go. The carers would cook him a meal but he usually declines. He mostly eats sandwiches (made by the carers), fruit and soaked oats- oh and Ice cream, lots of ice cream!
Its doing me good to answer all of your questions . The more i write it down the more obvious the signs are.....