Neighbour with dementia knocking

[00deed1988]

I have lived at my house for 11 years. Always had the same neighbours but everyone kept themselves to themselves. Unfortunately one side developed dementia about 3 years ago. Seemed under control.

About 6 weeks ago she started relentlessly knocking at my door. Can start at 6 in the morning and go on till 9 at night, from 5-40+ times a day.

She has 2 children, one works all day about 40 minutes away in a job he can't access his phone and the other lives in another country. She has a carer that comes in 2 hours a day.

Ranges from asking general questions to wanting to come in to the house as she is scared.

She has locked herself out several times and I have spare keys to let her in if she does.

I get it isn't her fault but it is really affecting my family now and as horrible as this sounds, it just isn't our problem. I have gone above and beyond for a stranger.

I work 12.5 hour night shifts in a job I need concentration and it interrupts my sleep and I am unable to get back to sleep half the time. My kids (14 and 11) are fed up as everytime they try to make a video (want to be youtubers) the door goes or we try to play a game or settle down to watch a movie it starts.

The cats are antisocial and basically live on the top of the wardrobe in our bedroom once it starts as they are scared.

The last few days I have been trying to ignore it, I have unplugged the doorbell and only answer if she starts hammering on the window or letterbox. I watch to make sure she gets back in the house OK but even this is really disruptive.

I spoke to the children today and they said they will look at getting more care in. She seems to be getting increasingly confused, started knocking as far as 4 doors up but not as often and today talking about going to get the bus into town asking if I can go. The other day I arrived home from work and she had given her keys to 2 teenage boys to open her door as she couldn't open it and they were in her porch. She is getting riskier and risked and I can't see this ending well.

My husband and I work around each other so there is usually one of us home but we wanted to go to the cinema on Thursday night just us two. The kids will be fine on their own for 2 hours but I now am reluctant because of her.

The neighbours on the other side are in poor physical health in their 90s and are really struggling when she knocks there too, they are now just not answering their door ever unless someone has called to say they are on their way.

Sorry this was long.

AIBU for considering contacting the police on 101 or duty social worker and escalating this or is that too much.

At the end of my tether and don't have any experience in any of this so any advice would be great.

Ahh the poor lady. It must be awful to feel so scared and alone. Defo call adult social services as they will be able to do an assessment. She’s probably not ill enough for residential care but would likely benefit from being in assisted living (which is a step up from sheltered housing). She’d have someone to keep an eye out for her and others to talk to as well to help her not feel so scared.

Dementia is a really cruel illness.

Oh sorry! Just made the leap that you worked as a care worker with older people.

Yeah you’re definitely doing the right thing it’s just really awful. Sometimes family don’t realise how bad a situation has got although sounds like in this case they have been made aware and are in denial?

Unfortunately although not a carer myself I helped my grandmother when she had dementia. It was heartbreaking. It started off with her needing carers twice a day, then 4 times and then unbeknown to us she was getting up at night and wandering around the house (as often people with dementia start getting day and night mixed up) one day she went to go to the shops and had a fall and a neighbour recognised her. One of her children went to stay with her and it was at that point we realised she had started to wander the house at night and it was worse than we thought and that’s when we started the ball rolling for residential care with social services.

It is the most awful illness 😔

It's awful when they start wandering. My FIL let himself out of the house while DH was cooking dinner and ended up walking down the side of a motorway. It took DH about 45 minutes to realise he was missing, he thought he was in the sitting room watching TV. He was missing for four hours and the police picked him up off the side of the motorway. That's when DH realised he needed residential care.

Unfortunately the family suggesting a sign telling her 'not to knock' shows they do not understand the severity of her cognitive issues and emotional distress. With dementia at this stage she cannot read, understand and act on written instructions. It may be they don't realise how how ill she is, or do not wish to accept it. She is frightened, disorientated and vulnerable and yes if the family don't step up, she needs you to contact Social Services.

@krustykittens aww that’s awful! Your DH must have been beside himself with worry! Thank god they found your FIL before he came to any harm

Contact social services every single time, once they get enough reports they will approach her family to see what they r going to do. Poor old soul, yes it must be hard on the family but they r tsking the piss leaving her to chap ur door constantly

He was absolutely frantic and ran me hysterical in the UK, where there was nothing I could do. Even worse, was when he discovered that FIL thought he was escaping the stranger who had taken over his house. It had only been a couple of weeks, but he had forgotten who DH was between visits. It really broke DH, it's one of the few times I have seen him cry. It's an awful illness. FIL was fine for a while after it was first diagnosed, very forgetful and struggling to find words, but generally coping with life and managing day to day tasks. The biggest problem was hallucinations as he had Alzheimers with Lewy Bodies. We did get a lot of help from Alzheimer's Ireland, who are brilliant. They had a volunteer who made sure he attended appointments and had food in. But sooner or later, the meds fail and it's like taking the handbrake off a car on a hill in terms of how fast they decline. I wouldn't wish it on anybody and someone this ill cannot be left in their own home with carers popping in for a couple of hours and neighbours keeping an eye out.

My mum did this, she would wander and knock on random people’s doors or go missing for hours and I would have to call 999. Once she picked up a dead pigeon and took it to people’s houses asking them to care for it, it was heartbreaking. This all escalated over a 3 month period after 8 years of being able to kind of manage her dementia (early onset, she was 61 when she was diagnosed). I remember breaking down on the phone to a care brokerage team begging for them to find her some respite care. She never came home, was sectioned for ten months and then was found a place in a beautiful care home where they take amazing care of her. Social services is the only way forward here but you have to be firm. Dementia really is the cruellest of diseases, I hope she gets the help she needs. You sound like a wonderful neighbour but I entirely understand why you’re at the end of your tether.

Oh it’s really hard. My neighbour goes through spells of this. But it was wandering and knocking on random peoples doors at 3am which was the breaking point. Her kids got her a watch which they can speak to her on, with some kind of alarm which alerts them if she leaves her garden. That definitely helps and a camera on her door so that they can see if she’s having a potter in the garden or is away for a wander. Otherwise she’s a great neighbour so both myself and the neighbour on his other side are both happy to help so she can stay in her own house.

They have a camera facing the door and one facing out the window so they must see exactly how much time she spends out of the house. They sometimes talk to her through it but she gets confused where it is coming from but they both work in the day plus have kids and social lives so obviously aren't watching it/doing anything about it.

He has definitely taken her with him back to his house as he came back and then left and I could see she was in the car so hopefully tomorrow will be quiet as I have a study day from home that I need to concentrate on.

Thank you all again for the kind words and shared experiences. It really helps.

It is the cruelest of diseases.

@00deed1988 her family and her support system aren’t looking after her. Any action you take is not only in your best interests but 100% keeping her safe. She’s not in any fit state to be wandering. Any day she might just wander into that road or go too far and get lost. At the start of a heatwave that is a huge concern. It happens a lot. It’s happened in my family. It was horrible.

Think of reporting to adult social services as one final act of compassion.

(If it continues, call her son or email social services copying him in EVERY TIME. Out of sight out of mind is not bloody good enough - he needs to face up to how vulnerable she is and how much of a problem it’s become)

OP I'm so sorry to hear about this both for you and your family, and also for your poor neighbour - Dementia is the worst.

You've had alot of good advice here. I'm a private carer and have looked after alot of dementia patients while they can still remain safely at home. I had a similiar situation a few years ago but where I was the carer going in for 2 2 hr sessions a week. To be fair in this case it was during Covid and 2 or 3 years following, the sons lived either abroad or 4 hours away, so I was the closest support my patient had.

I won't go into details but the neighbours were all in the situation you are in and despite telling the son over the years (& me telling him) he just didn't take it in how bad things had really become and just shrugged it off - think ostrich hiding head in the sand. My patient was wandering off \ getting lost, losing keys, unable to use a phone. confused, medication issues, unable to feed or take care of herself safely etc etc she couldn't function. She was a danger to herself. As things went on she was often more and more confused, worried and frightened.

The upshot really I would say is you need to do what others here have suggested and to cover all the bases. 1. Speak & write to the GP surgery and ask them to pass on your concerns to the GP. 2. Contact Social Services Adult Services team and report what's going on to them as an urgent referral as a vulnerable adult in danger. 3. Also contact the family and the Police every time. With each organisation I would use the fact that you are a medical professional and you are reporting this because in your professional opinion this is a dementia patient who is in danger at home and needs to be reassessed as she does not have enough care and does not appear to be able to cope at home.

They pay more attention to a medical or care professional than to Joe Bloggs.

I'd also keep a list of names of who you've spoken to & when.

The carer that is going in should also be reporting this to her boss if she's from an agency, and if shes private self employed (like I am) she has a duty of care to inform the family and also Social Services.

But the more people flagging this the better.

The only other thing I would say is I'm always abit suspicious of whether Social Services or the MHT actually realise how bad someone is. Dementia patients can sound quite normal until you speak to them for long enough or they may tell you all about a book they are reading - but until you query abit, its not always obvious that that's the same book they have been 'reading' for the last year and that they can't tell you what its about or are unable to even read the title to you.

This is exactly what happened with the above patient which delayed her getting the care she needed until I happened to be there when a MH nurse visited & helped illustrate all the ways she wasn't able to cope. It helped that the patient had thrown the electrics by putting slabs of cheese in the toaster just before the nurse turned up.

Its probably better now, but during and after Covid getting real help or attention from Social Services and MHT was a struggle.

OP I know it probably feels horrible doing all this, but you are thinking of your neighbour's safety, so you are doing the right thing by reporting it.

OP my dad had dementia. Luckily he had my mum to care for him but in your position I’d absolutely not have been expecting the neighbour to care for him. I’m currently working very long hours and struggling to find time to care for my elderly mum, so I can see it from the sons’ point of view too, but they still shouldn’t be relying on you. It must be very disruptive when you work shifts, though it is very sad of course.

Next of kin really don’t have to step up TBH especially if the parent was abusive. It’s not a legal requirement for them ‘to step up’ and in the case of abuse, it’s not a moral requirement either. No one else needs to take any responsibility- they can call adult social care very easily.

Don’t feel guilty OP. You’re doing a big favour by constantly escalating and advising the son of what’s happening. She sounds like she is becoming a danger to herself and it needs intervention by Social Services

I had this with elderly neighbours who wanted me to be the daughter / carer they never had. They had been good to me when I was a young mum and I felt I would like to help . I recognised when they needed home care and arranged a lot but they often accused the helpers of stealing when they were actually taking sheets etc to be washed. In the end when they were without help I phoned the son every time they contacted me and eventually they went into a home where they were much much happier.

Call adult social services.

I had a situation like this next door. I live in an apartment and the elderly lady used to ring all the apartment doorbells so at first we would all arrive in the vestibule at 6 in the morning in various states of wakeing/ sleeping to see what was the matter. She did it three or four times, and said she was lost, until her family (some members lived with her) installed keypad locks with keys as backup on their front and back doors.

If your neighbour is leaving the house she might one day wander off. She probably needs to be placed in a senior home.

I hate to suggest this, but the DS who doesn't want to know may be hoping he'll inherit the house one day and doesn't want it sold to pay care home fees.

This happened with my mum in a similar way. All I can say from experience is try not to jump to conclusions about this lady’s children. They might not be able to do anything, they aren’t necessarily motivated by keeping her at home to collect an inheritance. The sad reality is many people live a long way from parents. Many have jobs and children and cannot manage another person remotely especially one with a challenging disease even if that person is their mum. My mum was a complete nuisance to her sweet neighbours. From 8 hours away I couldn’t do much. Mums dementia which she refused to accept was happening was a huge cause of arguments when I kept saying to her she needed help and could not reply on neighbours for the things she was. She fought me and fought me. The sad reality is dementia patients can be stubborn and their off spring without POA are not in a strong place to force them to do anything. We did have to invoice social services and she has carers but it has been at times like a third job after looking after my kids at primary school age and holding down a job. Do call social services about this lady, only they really can force a change, this lady’s kids really might not be a able to but please don’t assume bad intentions in all cases. Sorry for the rant but check out cockroach cafe and read some of the stories of grown off spring struggling with the guilt of not being able to care for parents with dementia. x

To add I encouraged my mums neighbours to speak to social services as they could do something if mum was deemed at risk or a social nuisance (I think that was the term social services used). You may actually be helping the son. My mum told everyone that I was lying and that she didn’t bother her neighbours much at all. Denied outright that she banged on their door day and night and told people I was making it up. That’s dementia. Honestly this lady is not the son’s problem to solve. He’s not going to magically appear and move in, nor can he force his mum into a care home if she won’t agree to it. It’s not your problem either I know so keep knocking on adult social services door. At least she has some carers so must be in some sort of care system be it council or private. Nothing short of live in care will stop her pattern of behaviour, you can’t with dementia. Even a live in carer didn’t put a stop to my mum - she would sneak out at all hours. I have seen it. I hope she gets more help.