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

[BigBarm]

I’m currently on a long haul overnight flight back to the UK and I decided to use the wifi so I could catch up on a few work emails before I go to sleep… but I’m now unlikely to get any sleep!

Background: My dad has dementia and still lives in his own home - we have carers visit every morning and evening and a few other visits across the week. And he has some social arrangements with friends and family that I organise/oversee. He’s still able to do some things for himself without help, eg microwave a meal, walk to the shop for milk.

His Blink camera has pinged me to show that he was wandering around outside his house @ 3:45am. His carers make sure he locks up after their evening visit (8pm) and he’s never wandered before or left his home after they’ve been, so this is a worrying change in behaviour. He’s gone inside now, so I think that he is safe. But as I’m on a flight, there is bugger all I can do anyway.

I’ve been looking at care homes recently, thinking that it’s something for in the future - either when it becomes unsafe for him to live there or when I crack and can’t cope any more, whichever comes first! I live 200 miles away and I’m exhausted trying to manage his care/house and travelling to see him frequently. (I have a sibling who lives closer, but they are not doing much compared to me). I was hoping that it would be a little while yet before he needed a care home… but now this has happened I’m thinking it might need to happen soon?

I’d like to know what others think. Does this wandering now make him unsafe and need to be in a home? At what point did you realise that your parent can’t live in their own home?

Thanks for listening!

It depends why he was wandering. He might have heard a noise and gone out to investigate. I think you need to speak to him and see what his recollection, or not, is of the situation.
How does he feel about going in a home at some point? Does he have a social worker?
My DH was told that his parents would need a home once they needed more than 4 visits a day, or overnight care. One of his parents started wandering and hassling neighbours/random people walking down the road, that’s when the SW pushed for a home.

I’m really sorry to hear about your dad and how his dementia is affecting him, I completely understand how you are feeling, as I have been through all of this too.
It’s the feeling of guilt that you have too. If you’re starting to consider his safety now, as you are beginning to get worried… then I feel that the time is right for you to consider residential home.
My mum has dementia and this happened to her. She lived alone and was coping quite well, however, over a period of time she lost all sense of time and routine.
Her self- care and hygiene was also deteriorating.
She started having hallucinations, that there were people in her house that wouldn’t leave; sometimes she would go and change the bedding so that they would be able to stay. Sometimes the hallucinations were of people that she knew, but increasingly of strangers - over time she became scared and confused and would ring me at any point during the night to say that there was someone in her house or she would wander outside and knock on her neighbour’s door upset and scared, he would then check the house for her and call me. She started to become frightened on her own.
Despite having meals delivered during the day, and microwave meals to hand, it was around this time that she then also started to put pans on to cook something and then dangerously forget about it,
She started to become frightened on her own and it was clear that her safety was at risk.
When it got to this point, I rang adult social services to ask for advice and support.
We spoke to mum about our concerns and worries and it was suggested that she had some time in a care home for respite, which she agreed to.
Once at the care home, the hallucinations stopped and she was given a daily routine that she could relate to. At the home, she made a few friends had daily interactions, regular healthy meals, personal care and hygiene needs met, medical needs met and she felt safe.
It greatly eased my mind that she was safe and cared for 24 hours a day.
Following an initial 6 week respite stay, and following lots of support from her social worker, it was decided to make her stay there permanent and she has been there for 2 1/2 years.
Over that time, she has progressed through the stages of dementia and is now in the last stage. Although it has been an upsetting journey, it was completely the right thing to do and completely in her best interests.

So he is quite able he can use a microwave and go to the shop for milk. You only know he went out once at night not for long then he went back inside. I don't think that is enough evidence to deprive him of his liberty in a care home. You could ask for a care needs assessment from social care if you are worried everyone is entitled to an assessment even self funders. I work in social care.

That was the trigger for us to move my mum to a Care Home. She started wandering in the night, forgetting where she was, it was frankly awful. My sister lived locally and was getting calls from the police night after night. She went into a (lovely) Home with locked doors after that. Safer for everyone. Sorry you are going through this op, it’s tough.

Start looking at possible care homes. The good ones have a waiting list, and it is much better to plan in advance for a move than to need to move in a hurry. So get things lined up that you know which home you like for 6-12 months from now.

Is your dad at risk of falling? Would he wear a call bell with a location tracker, like an AirTag, so he doesn't wander and get lost?

What is his opinion on care homes? It could be good to start on telling him how marvellous they are.

Thank you so much for your replies. It helps to hear from others who have been through this. Friends and family are sympathetic but unless you’ve been in this situation, it’s hard to understand exactly what it’s like.

I will of course speak to him. Whether he will remember or tell me the truth is another matter! He often tells me things that I know not to be true because I have the tracker and camera. Sometimes he will tell me eg that he’s been for a walk/weeded the garden - sometimes he genuinely thinks he has done so, other times I think he just says it out of habit or to make conversation.

whilst he is capable of eg using the microwave, I suspect sometimes this is not happening as well as it used to and we’ve recently been considering extra care visits to make his evening meal. The morning carers already prepare a sandwich/salad lunch for him because he has forgotten/is unable to do this now. His personal care would not be good without the care visits, which is sad because he was always so clean and well groomed. There have been a couple of other issues - I’ve seen him looking confused on camera and once taking his clothes off outside (his house is tucked away so luckily this was not seen by anyone else). And we’ve had continence issues 3 times where he’s tried to hide it or cleaned up badly.

He doesn’t have a social worker and would be self funding, but I think this is a good idea to get a needs assessment. We’ve talked about the possibility of going into a home before - he’s shown understanding about why that might happen, but I am not sure he will ever think he’s at the stage where he needs it.

Talk of depriving him of his liberty makes me feel even guiltier than I already do! This was my first holiday in two years. He’s been ill for four years since my mum died. 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.

Thanks for listening, it does really help!

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,

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.

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 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.

Ive landed now - a night flight can be a lonely place when you’re on your own and have stuff to worry about! Thanks for listening and offering your suggestions and things to think about.

@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.

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?

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.

Yes, you could be right. The problem is that some of these issues have been one offs or very infrequent, rather than a pattern of behaviour. When the undressing thing happened I was very concerned about his deterioration, but that happened 3 months ago and hasn’t happened since. The continence issue was 3 times, but this has been fine for the last couple of months. He has some bad days, but he has lots of good days too.

almost 4 years ago he had a bit of a meltdown and was put under the care of a mental health unit. I thought from the start that it was dementia but he was only diagnosed last year (and that was with me being persistent). He used to have a brilliant memory so it wasn’t obvious to outsiders initially - he would ace most of their memory tests.

Thankfully we do have POA sorted and he is receiving attendance allowance.

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.

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.

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

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.

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!

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.

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 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.

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 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.