Unfair on neighbours.... but what can we do?

[jojo2018]

Hi, I wonder whether anyone else has experienced this, and what they did about it...

My MIL has VD and we've been through many of the ups and downs experienced by so many families on this site, at each stage doing our best to get things under control and maintain a semblance of independence for her. Today she wept when we had an update meeting with the carers and said she'd rather kill herself than have people in her home telling her what to do, but we calmed her down and she's ok again now.

However, that aside, a new problem has presented itself - and we don't know what to do.

Her next-door neighbour, who we don't know very well but seems a nice guy, called to say he had some things to share with my OH that he needed to hear. I said I could take a message and he went into lengthy detail about many visits to his home that MIL has been making - TV remotes that she had borrowed and lost - worried visits asking what to do about money / cards that had been lost - etc etc.

I got the impression he was politely asking for us to prevent this happening again - but how can we? It seems unfair for the neighbours to have this burden - but I don't know what to do about it.

If anyone has a similar story - perhaps found a way to solve or mitigate it, I would love to hear from you.

BW, Jo

 

[Delphie]

What a worry for you.

Two things popped into my head while reading your post. The first thing is that while I understand how annoying something like that can be, the neighbour does have a choice whether he engages with her or even opens the door when she pops round. Many of us have had the experience of people we'd rather not see (nothing to do with dementia) calling round again and again, uninvited. We don't have to say a big friendly come on in. We can be 'out', or on our way 'out', or really busy right now, or whatever. Your MIL might not take the hint as readily as some but many people just don't anyway. So, my first thought is that having now spoken to you and alerted you to the problem, he could find a way of dealing with her in just the same way he would have to deal with any other person he wasn't keen on calling round.

Maybe he'd like you to have a word with her but only you know if that will do any good, or if she'll remember.

My second thought was that if she now lacks the capacity to keep herself safe (discussing money with people she doesn't know well etc) then the problem is something you will have to handle, somehow. Maybe she needs more visits, either from family or from carers. Or maybe she's reaching the stage where being left alone for prolonged periods is no longer viable. Some people need residential care because they need supervision.

There might be some technological solutions for now, though. Maybe a pressure mat by the door that would alert you to her heading out, so you could call her before she reaches the neighbour. Or some cameras that would do a similar job.

But ultimately, unless her behaviour is antisocial and unless she's clearly unsafe, there's only so much anyone can do, and the neighbour is the person who can do the most, by doing the least, if that makes sense. If she kept arriving at his door and it never opened she might well stop going over.

 

[Sarasa]

Hi @jojo2018, I'm not sure that my input is going to be very reassuring but here goes. My mother is obsessed with her neighbours and is convinced that they come into her flat take her things, remotely control her heating and goodness knows what else. This has been going on since before Christmas and the poor women have been at their wit's end with mum's behaviour. So much so that they now have a video camera on their door so they can collect evidence. At least your mother in law appears to see her neighbour as someone who will support her. Did you know about problems with cards and TV remotes before the neighbour told you?
What we have done is ask mum to phone us when she is annoyed with the neighbours, which hasn't really worked, as she's taken to phoning the police instead! We've also kept in contact with the neighbours explaining what we are doing to try and get help for mum as she has no formal diagnosis yet. We've also given them our contact details and listen to them when they phone in despair when things get too much. We've also told the neighbours that we totally understand if they feel they have to call the police about mum, though I don't think they've done that yet.
I hope you find a solution soon. Mum has no help coming in at all, but I think her reaction if she did would be very much like your MiL's.

 

[Tin]

Have you thought about arranging some adult day care. My mum did this before she moved in with me, all hours of the day, with a smile on her face, knocking on neighbours door asking for help. Totally unaware that she was doing this every 5 minutes. They would give her the help she needed and she would go home, then immediately back at their door, sometimes with the same problem.

 

[Rosettastone57]

Hi, I wonder whether anyone else has experienced this, and what they did about it...

My MIL has VD and we've been through many of the ups and downs experienced by so many families on this site, at each stage doing our best to get things under control and maintain a semblance of independence for her. Today she wept when we had an update meeting with the carers and said she'd rather kill herself than have people in her home telling her what to do, but we calmed her down and she's ok again now.

However, that aside, a new problem has presented itself - and we don't know what to do.

Her next-door neighbour, who we don't know very well but seems a nice guy, called to say he had some things to share with my OH that he needed to hear. I said I could take a message and he went into lengthy detail about many visits to his home that MIL has been making - TV remotes that she had borrowed and lost - worried visits asking what to do about money / cards that had been lost - etc etc.

I got the impression he was politely asking for us to prevent this happening again - but how can we? It seems unfair for the neighbours to have this burden - but I don't know what to do about it.

If anyone has a similar story - perhaps found a way to solve or mitigate it, I would love to hear from you.

BW, Jo

We had this with an ex neighbour who was forever at the door. To be frank we just didn't answer the door. Her family told us of her illness which we had guessed anyway from our own experience with MIL. I think the neighbours should be told. We did this with MIL when she was at home as she was harassing the neighbours.

 

[jojo2018]

Have you thought about arranging some adult day care. My mum did this before she moved in with me, all hours of the day, with a smile on her face, knocking on neighbours door asking for help. Totally unaware that she was doing this every 5 minutes. They would give her the help she needed and she would go home, then immediately back at their door, sometimes with the same problem.

Hi Tin, thanks for your mail, and sorry to hear it happened to you too. It can't be easy having moved your mum in, that's so good of you. What type of adult day care were you thinking of? We have carers coming in, but I'm keen to know all the options! Jo

 

[jojo2018]

Hi @jojo2018, I'm not sure that my input is going to be very reassuring but here goes. My mother is obsessed with her neighbours and is convinced that they come into her flat take her things, remotely control her heating and goodness knows what else. This has been going on since before Christmas and the poor women have been at their wit's end with mum's behaviour. So much so that they now have a video camera on their door so they can collect evidence. At least your mother in law appears to see her neighbour as someone who will support her. Did you know about problems with cards and TV remotes before the neighbour told you?
What we have done is ask mum to phone us when she is annoyed with the neighbours, which hasn't really worked, as she's taken to phoning the police instead! We've also kept in contact with the neighbours explaining what we are doing to try and get help for mum as she has no formal diagnosis yet. We've also given them our contact details and listen to them when they phone in despair when things get too much. We've also told the neighbours that we totally understand if they feel they have to call the police about mum, though I don't think they've done that yet.
I hope you find a solution soon. Mum has no help coming in at all, but I think her reaction if she did would be very much like your MiL's.

Oh goodness, this sounds so tough for you, and everyone involved! I'm so sorry to hear that it's happening. At this point my MIL thinks the carers accidently take things, and she complains to the neighbours who she thinks are great, not the other way around. But worryingly today she also accused me of taking pictures from her frames (I think she had been moving things around and could not remember - it's the same with cards, remotes and money - they all tend to be safely in the house but she misplaces them at least once a day, then finds them again). The neighbour seems very nice, luckily, but of course it's very different if he was getting accused of something... I wonder at what stage she should not be alone, but her fear of independence being lost is huge, and in many ways she is doing well. This is a cruel disease isn't it. I wish you and your mother all the best x

 

[jojo2018]

What a worry for you.

Two things popped into my head while reading your post. The first thing is that while I understand how annoying something like that can be, the neighbour does have a choice whether he engages with her or even opens the door when she pops round. Many of us have had the experience of people we'd rather not see (nothing to do with dementia) calling round again and again, uninvited. We don't have to say a big friendly come on in. We can be 'out', or on our way 'out', or really busy right now, or whatever. Your MIL might not take the hint as readily as some but many people just don't anyway. So, my first thought is that having now spoken to you and alerted you to the problem, he could find a way of dealing with her in just the same way he would have to deal with any other person he wasn't keen on calling round.

Maybe he'd like you to have a word with her but only you know if that will do any good, or if she'll remember.

My second thought was that if she now lacks the capacity to keep herself safe (discussing money with people she doesn't know well etc) then the problem is something you will have to handle, somehow. Maybe she needs more visits, either from family or from carers. Or maybe she's reaching the stage where being left alone for prolonged periods is no longer viable. Some people need residential care because they need supervision.

There might be some technological solutions for now, though. Maybe a pressure mat by the door that would alert you to her heading out, so you could call her before she reaches the neighbour. Or some cameras that would do a similar job.

But ultimately, unless her behaviour is antisocial and unless she's clearly unsafe, there's only so much anyone can do, and the neighbour is the person who can do the most, by doing the least, if that makes sense. If she kept arriving at his door and it never opened she might well stop going over.

Thanks so much for your response. It really resonated, what you said about the neighbour's level of choice - from speaking with him today I can see that he likes to be helpful and having lived nextdoor for many years almost sees it as his responsibility (to a point). However, he also clearly wants us to do more if we can, and for us to know. We've assured him that we have upped her level of care and have asked him to try to get her to call my OH whenever she comes round - so we can take the responsibility more than him. But... I suspect this will continue, and we're lucky that he is such a nice man. We thanked him profusely, as we should, which I think also helps as he knows he's appreciated.

I will look into the camera idea - it might help to reassure us that's she's ok on a daily basis too. Thanks for that.

The other point - about when she might need residential care - it's the toughest question of all. She's a tough lady who fiercely values her independence and lifestyle - she walks daily with friends in the local park, enjoys living alone and hates anyone encroaching on her space or time in any way. We have managed to get morning and evening carer visits accepted - with bitter complaints and often heartbreaking emotional outbursts. It would be so comforting to see her cared for round the clock, but I know she would be devastated and outraged and fight us tooth and nail, and at this moment she can still live alone for the most part - with 3 visits a day (including nurse), and visits from us 4 times a year (we work overseas), with OH staying with her months at a time when we do return.

I think we are close - but not there yet. And we both dread the time coming. However, we could also be making a mistake by not doing it sooner. It's so hard to know.

It's helpful to hear we're not alone, and get advice... thanks again, Jo x

 

[canary]

If you think you may be getting close to a care home I think it would be a good idea to start looking at the care homes in her area and perhaps get her name on the waiting list of a couple (yes, the good ones have waiting lists) . You do not have to accept the room when her name comes to the top and her name can remain on the waiting list. The worst scenario is an emergency placement by SS after a crisis into any home available with a space.

BTW, mum fought tooth and nail against going into a care home, but when it happened (after a TIA) she settled and actually thrived there.

 

[Rosettastone57]

If you think you may be getting close to a care home I think it would be a good idea to start looking at the care homes in her area and perhaps get her name on the waiting list of a couple (yes, the good ones have waiting lists) . You do not have to accept the room when her name comes to the top and her name can remain on the waiting list. The worst scenario is an emergency placement by SS after a crisis into any home available with a space.

BTW, mum fought tooth and nail against going into a care home, but when it happened (after a TIA) she settled and actually thrived there.

I wish my husband and I had put my MIL down for a care home earlier but we had to move quickly when a crisis loomed. She went into hospital suddenly and had a steep cognitive decline so in the space of 2 weeks we suddenly faced placing her quickly. She is self funding so it gave us choice. But it was very stressful

 

[jojo2018]

If you think you may be getting close to a care home I think it would be a good idea to start looking at the care homes in her area and perhaps get her name on the waiting list of a couple (yes, the good ones have waiting lists) . You do not have to accept the room when her name comes to the top and her name can remain on the waiting list. The worst scenario is an emergency placement by SS after a crisis into any home available with a space.

BTW, mum fought tooth and nail against going into a care home, but when it happened (after a TIA) she settled and actually thrived there.

Thanks Canary, I have suggested this to OH, but he's always so overwhelmed by the ongoing issues I don't like to push. I think perhaps I need to do this myself and then when the times comes we'll be ready. We had a complete nightmare recently when carers (expensive, professional carers) were negligent in giving her cancer medication - an investigation has been launched but that meant he had to move in and take over the role again, and we're only just getting settled with a new company (with all the same arguments coming back again). I'm so pleased your mum thrived in a care home - that gives me hope!

 

[Sirena]

I agree that it would be a good idea to research care homes, as I think you're close to that time. I had a similar issue with my mother, she'd lived in her flat 50 years and several of the neighbours were friends, but even they got to the end of their tethers. I lived 2 and a half hours away so was not able to give hands-on help. I upped her (self funded) carer-time twice, in the end she had 6 hours of care every day, but that still left plenty of the day for her to get anxious and put herself at risk - she started wandering and was 'lost' as soon as she left the building. There comes a point where 24 hour supervision is necessary, and she moved to a care home earlier this year.

It's true that the neighbours didn't have to engage with her, but I think partly they were genuinely concerned, and partly they thought "the daughter should be doing more". And the 'doing more' seems to involve moving the PWD to a care home. Easy for them to say, hard for you to do - people who have not been through this have no idea how hard it really is.

 

[jojo2018]

Yes that's so true - I'm sorry you went through this also. People who haven't been there don't know - and they imagine it's easier to solve than it is!
I started some research now and it doesn't look easy so an early start is definitely for the best. Thanks again xx aaE"Sirena, post: 1568318, member: 72443"]I agree that it would be a good idea to research care homes, as I think you're close to that time. I had a similar issue with my mother, she'd lived in her flat 50 years and several of the neighbours were friends, but even they got to the end of their tethers. I lived 2 and a half hours away so was not able to give hands-on help. I upped her (self funded) carer-time twice, in the end she had 6 hours of care every day, but that still left plenty of the day for her to get anxious and put herself at risk - she started wandering and was 'lost' as soon as she left the building. There comes a point where 24 hour supervision is necessary, and she moved to a care home earlier this year.

It's true that the neighbours didn't have to engage with her, but I think partly they were genuinely concerned, and partly they thought "the daughter should be doing more". And the 'doing more' seems to involve moving the PWD to a care home. Easy for them to say, hard for you to do - people who have not been through this have no idea how hard it really is.[/QUOTE]

 

[Kipster]

My Mum is very dependent on her next door neighbours of 60 years. One adjoining neighbour visits daily, keeps spares key and phones me if there is a crisis.
Mum, now aged 88, has carers 3 times day. Unfortunately her confusion has increased markedly and this week she was found wandering at night, trying car doors. When I arrived at her house at midnight (an hours drive away) she was being entertained by 2 neighbours and 2 police officers - it felt like a party.
Next day people called to see how she was. She couldn't remember anything about her adventure but said people had been making up stories and that she wouldn't have been trying cars doors as she can't even drive. Laughing about this keeps me sane but the reality is with winter looming I am now looking at residential care with some seriousness.
My reflection on all this is that strong communities can be vital in maintaining independence but only so much. My Mum is starting to wander because she wants to go home to the village where her Mum 'lives' and she thinks she spent last week with long dead relatives there. But I know that when I try to persuade her that it's time to move into residential care I know that she will present logical well argued reasons about how she can look after herself. It's these swings from reason to bizzare hallucinations that are so difficult. I am putting to bedtime career visit in this week in the hope that we can settle Mun for a bit longer. The neighbours are sceptical !

 

[Sirena]

@Kipster I think the neighbours are right to be sceptical! In the end my mother had additional carer time, plus a linkline monitor on the front door to alert a call centre when she went out, and a tracker she was supposed to wear. Needless to say she always removed the tracker... I knew all the 'extras' were just slightly postponing the inevitable, and in February I moved her to a care home. I didn't do any persuading, I arranged it and moved her there. She is safe there, and says she loves it - but if I'd asked her beforehand she may have said she didn't want to go. Unlike your mother she wouldn't have given any well reasoned arguments, as her speech is very muddled, and I am not sure she would have understood the question.