Dad wandering in the night - is it now time for a care home?

MIL is effectively locked in now. The carers use the side door (front door keys are awol in our house) and they go through a 6’ fence and gate to get in. The gate bolts from the outside, so she can get out into the garden but not out to try to get into other people’s houses at 3am. There are more sophisticated locking systems but it was an emergency response by DH.

The comment about symptoms being patchy is spot on, and it does muddy the waters.

Take care OP.

@BigBarm
It might be a good idea to register your Dad with the police using the Herbert Protocol. It could be very helpful if he goes missing and they have to look for him.

You might want to think about a motion activated speaker like this - https://www.alzproducts.co.uk/timed-wander-reminder so it can say 'go back to bed dad' or 'don't go outside, it's night' when he goes to the door

I think it is completely reasonable to include your situation in the overall assessment. So he is remaining at home with near the top limit of care visits, plus deteriorating ability to feed himself, plus occasional steps over the line to extremely unsafe behaviour ... provided you are driven to the edge of a breakdown. That certainly doesnt sound sustainable.

I personally would say when someone starts wandering at night, that is the point at which you need to think fairly urgently about a care home. Incontinence in some unmanageable form being the other trigger.

Absolutely get POA done now OP if not already in place. And do look at options for a care home placement- his SW can help with this. Even if it’s just respite I will give him a “taster” and give you some weeks without worry! We are trying to get my mum in for respite at the moment. I’m quietly hoping she will like it so much she will decide to make it permanent.
Best wishes xx

"I constantly worry about him and feel like I am on call 24/7, his camera can ping me up to 100 times a day. The exhaustion and anxiety is sometimes overwhelming and affects the rest of my life, especially my work."

Is this how he or your mum would have wanted you to be? A good care home will keep him safe and healthy; if he is self-funding then you can find one that can meet his social needs too (be they privacy and isolation or lots of activities and social events). Good luck finding somewhere you like. And in the meantime there's lots of practical advice above.

It sounds so hard for you, and I would suggest that it would be time to start looking at homes where he could be in a care section now, and move to a dementia unit later on. He'd have a much better chance of settling in at this point, and it can take a while to find the right place.
IME, the microwave became an issue in its own right for my mum as she forgot you couldn't put metal in them and exploded a few, though the first died after heating something for 20 minutes that needed 2...

I'm another offering 💐 in a difficult situation.

Mine is different in that DM has gone from independence with a little gentle support for gardening to total dependence (bed bound) in the space of 8 weeks. A fall followed by surgery followed by a stroke.

The last 8 weeks seem to have shoved DM very hard down the dementia road. Her memory has totally deteriorated, hallucinations, combative, confused.

Night time wandering is a worry, especially as the nights are now long and getting colder (assuming you are in the UK).

The thing I am seeing is that there is no logic. A dream or a hallucination can be as clear as reality but have no basis in fact. A conversation can run quite sensibly but then a casual comment about talking to a person long since dead makes you realise the conversation has taken a turn.

DH said he had quite a number of conversations with his DM about himself but in the third person. She no longer recognised DH but knew she had a son.

All options are a bit crap. It's just a case of trying to work out the least crap. Don't forget that it has to work for you as well.

Agree about the patchiness – my mother did very well answering the maths questions the psychiatrist asked her, but when I asked her (around about the same time) who the current PM was, she said Winston Churchill!

This sort of dementia sounds very much like my Mum's, some days she's more together than I am and can grasp quite complex subjects, other days ughhhhh. No gradual progression at all.

It's been over 20 years now and she's settled in a care home.

The memory clinic thinks it may be Lewey body dementia.

The real kicker with dementia is how patchy and uneven the symptoms are. All the advice and literature seems to present it in neat progressive stages - if it really developed that way, it would be easy to know what to do, but it doesn't! My dad (who has Alzheimer's and has been living with me for 6 months) has intermittent continence issues which he hides, and has recently started sleeping most of the day and wandering the house at night (he hasn't gone outside at night yet). He has a gps tracker for daytime walks, after he went too far, exhausted himself and was brought home by the police. He spends most of his time writing endless notes for himself, including all over his arms. But he is generally very switched on in conversation and would still have no trouble convincing a medical professional that he was fine, if they had no knowledge of him. He varies wildly from day to day and doesn't fit into any of the "stages" of dementia as described. If we suggested a care home he would be incredulous and offended! He's still far too aware and capable for that...except when he isn't.

So no useful advice from me OP, just solidarity from someone in the same boat

We left it too late. My SIL tried so hard to facilitate her mum staying in her own home, even giving up her job to be in support. But it didn't work out for the best at all.

My MIL' was picked up by a passing police patrol car at 5am, two miles from her home. They took her to hospital, and after finding something in her bag with her address on, knocked on her neighbours door. The neighbour gave them my phone number.

If that patrol car hadn't driven by, I can't bear to think what might have happened to her. Now, when I read about elderly people with dementia who have gone missing, my blood still runs cold.

From the hospital she was released to respite in a care home, while we and adult social care discussed the future. Fortunately the care home she was taken to was great, with warm and caring staff, so we agreed that her remaining there was the obvious decision.

My GMIL was like this. She had a fantastic memory and would ace the tests, she also had a meltdown and ended up under the mental health team, a lot of the early dementia behaviour waa passed off as mental health. MIL had to be very very insistent that she was struggling. GMIL also started wandering at night and getting very confused in the late afternoon. When it first started the GP tested for a water infection but the behavior continues after the infection cleared.

With GMIL she seemed to cope until all of a sudden she didn't. She had a staunch routine that she followed every day and the assessor said that that was why she had managed so long at home.

You can cost up live carer eg 1000 a week plus food plus keeping the house warm etc versus cost of care home . Some counties there is no council tax to pay if moved into care home .
Claim attendance allowance.

Reading your update, your dad's dementia sounds as if it's maybe more advanced that you think. Problems with wandering about, inability to tell when it's day/night time, needing help or prompts to wash and dress, taking off clothes in inappropriate places, and incontinence are usually termed 'moderately severe'. A SW assessment would be a good idea, where I am they usually work alongside the geriatric psychiatrist. It does sound like he needs an up to date assessment. Do you have POA sorted?

@BigBarm
Yes, this exactly.
Once a person with dementia starts wandering, especially at night, it is time for a secure care home to keep them safe. They tend to be more confused in the late afternoon/evening/over night but much better earlier in the day.

It would also be worth checking if he has an infection such as a uti as this can cause sudden change in confusion or behaviour, if this is unusual for him.

The biggest issue is that he may well trip and fall on these nighttime ramblings - happened to my mother. Then you just are straight down into the dark times; a fall resulting in injury/hospitalisation is disastrous for the elderly with dementia.

You're hardly in a position to do anything about his behaviour even if you can see him on camera. Sadly the only option would be an alarmed door and full time live-in carer; you can't have him left alone locked in from the outside obviously. Otherwise it's a care home, sorry OP.

It sounds similar to my experience with my mother. She started wandering, coincidentally at exactly this time of year. That made it worse because it was so cold and dark, and often raining, and she would go out with no coat (and sometimes no keys). She ended up being brought home by kind neighbours, or in one case, paramedics. You are already monitoring him, and you can get a tracker pendant/bracelet for him but he will probably remove it (my mother would immediately remove it as soon as the carers were out of the door).

So yes, I think it’s time for a care home. The current situation isn’t sustainable.

My mother was self funding and I didn’t get a needs assessment. Involving Social Services will slow down the process, and they are not really interested if you are self funding anyway. I just went ahead and chose a care home. The process of organising it all is horrible, but it needed doing and within a few weeks my mother was settled in and happy there.

we’ve recently been considering extra care visits to make his evening meal. check whether your LA is one of the decreasing number that still do meals on wheels. That would give a hot meal at lunch time with the offer of sandwiches and cake left for tea,