Helping my Demented DF to stay at home; door alarm to keep him indoors at night?

[PollyGray]

Posting in Chat hoping for help.
Has anyone here used a service which installs a door alarm system for elderly/vulnerable adults which sends an alert if the door is opened at certain times of the day i.e. during the evening or night?

In a nutshell, DF is 89, dementia, living not that locally to me but close enough for me to get to him if I need to. I have Deputyship for his finances and I pay for a Care Agency to support him 2 visits a day at lunchtime and at 4pm each time for an hour. He refuses all other help and won't go to any day centres.
Just had another Social Care assessment as he has deteriorated but still has some functional abilities which are reasonably intact i,e. can wash up the dishes and push the hoover around but that's about it.

But he has started to leave the house in the evening and wander round the close where he lives shouting for help, in a confused and distressed state. Nieghbours have been taking him home and contacting me or my DD if they can't get me.
The social worker is aware of this and suggested that I increase the visits to another one in the evening and consider intalling one of these door alarm systems which are typically connected to a Lifeline (which he has already but they don't offer the door alarm thing).
So as not to drip feed she insists I try everything possible to keep him at home for as long as possible and that's what he wants, he's terrified of being put into care and does everything he can to avoid accepting help.

I just wondered if anyone has used this kind of service and can say how well it worked for their situation, the kind of costs involved etc? I've done a google search and found one organisation whose website looks all singing and dancing but I'd rather find out a bit more about how well they work first.

TIA if anyone responds.

I’m sorry to hear things have declined.

My grandma was much like this. She would get up as soon as she woke up and walk into her village and get annoyed that the shops were shut (at 4am). She was lucky that someone helpful always spoke to her and helped her or walked with her back home.

She didn’t leave the gas on but set fire to a few tea towels by leaving them right by the hob. Also a footstool that was moved too close to the gas fire.

She did go into a home in the end and her dementia was pretty serious by that point.

The priority for today is to make his house as safe as possible. Remove the iron or anything else you may worry about. Is he likely to try and cook? Can his care agency increase his care calls from 2 to 4 a day? Are you able to stay with him for a while? Has his GP rules out things like UTI? You say he has been deemed to have capacity. By who and for what? He may well have capacity to decide what to eat for example but not for other issues such as where is safest to live. To be honest I would be tempted to take him to a&e if you can't cope (I know I couldn't). He should get admitted and they can deal with all the capacity and discharge issues from there.

So sorry you're reaching this stage Have been there with 3 much loved family members and with all of them, once the transfer was made to the right care home, the relief they experienced was huge. The thought of it was scary, and one held on as long as he possibly could, but once he made the decision he was much happier. All of them needed staff on duty through the night, available for a cup of tea, a chat, lights on, help to orient themselves and company there, and in a consistent 24 hour routine with people there all the time they felt safer and the confusion reduced.

The right place is important. One family member began with a couple of weeks respite, a break when he was in a bad patch to have 24 hour support, and the staff made it clear that he could consider either going home or staying on. Once he'd been there a week he chose to stay. Another, who had a lot of complex needs, had a truly lovely manager of her CH, who made sure she had the right room and routine, and she started to eat properly again and want to go and participate in card games and group activities with other residents.

I would contact your council via their website and make a request for an urgent safeguard / complaint. I would also insist that your father has a mental capacity assessment, and that you able to participate as someone who knows him well. I would also insist that your father has a reassessment of his care needs, and that you also need a carers assessment.
If he no longer has capacity then it maybe that you will no longer be able to get power of attorney for health for him. However he could be subject to a dols if it is considered that he is a danger to himself.
If it is decided that he doesn't have capacity and needs to move into residential care, then it is right that you should expect some support from social care to find the right home for him.
If he owns his own property / has savings over around £23,500, (off the top of my head) then he will be paying full cost for the residential home, but it doesn't mean you don't have the right to expect help from the social worker to find the right placement. If he doesn't own property / savings then the council will need to do a financial assessment to see if he needs to pay a contribution towards his fees
There is a wealth of assistive technology out there, should he be able to remain at home, and the social worker should be able to advise you of this. Many councils are offering this technology as limited cost, because longer term it may mean a saving to the council in terms of providing care.

I would start the process by contacting the safeguarding team and also making a complaint.

Hello, I'm sorry you are enduring this it sounds so difficult. I didn't see your thread when you first posted but if I had, I would have said the social worker can "insist" on what she likes in terms of what she would like you to do. You are under no obligation at all to comply. You are absolutely allowed to say that you can't do any more and that the local authority need to step in and safeguard your dad as they are legally obliged to. I'm sorry you've been put under such pressure and your dad left in such a dangerous position, that was really wrong. Please don't feel pressure now to agree to do more. Now is the time to be really clear you can't do this and no one should expect you to.

We had this for our aunt. It rang through to the meds system who spoke to her through the I intercom
It worked for a short time but eventually a care home was the safest option even though she didn't want to go. She lived 4 years in the hone safe and quite happily

@artichokeleaves - so true that once they are settled its a huge relief to them. OP - I imagine your DF has a lot of subconscious stress trying to live 'normally' but it's too difficult for him to cope. I guess the stress has made him aggressive as well as it being a symptom of dementia.

We're facing a different situation but it's going to end the same way, with our lovely person needing 24 hour care. We know the rational her would hate it, but she's no longer that person and we have to keep her safe. It's truly shit op, I'm sorry. We just keep telling ourselves that it's because we love her that we're making these decisions for her. It's so sad.
Offering understanding and solidarity, I can't offer much else.

(Ad an aside, dfil has a live in carer, has had for nearly 2 years. Costs around £900 a week and has worked brilliantly. We can now see the day coming when his savings are all used up and we have to reconsider but we're burying our heads in the sand about that for now)

It really sounds like at this stage he is no longer able to live independently. What the alarm goes off every night? are you going to be able to live that way? and also the alarm is not going to stop him wandering off before you actually physically can get to him. I think you need to think longer term and start looking for a care home.

TBH there very often comes a point where a person with dementia is no longer safe to be left alone at all - it’s like leaving a toddler on the loose.

Care homes often get a very bad press, but speaking from personal experience, there are some very good ones out there. Both my DM and my FiL had dementia, and eventually care homes were the only practical option.
My Fil wandered, was endlessly getting lost, plus he was constantly losing his keys and banging on neighbours’ doors for help at all hours of the day and night. It just wasn’t fair on them. He moved in with us for several months, but there came a point where the stress and exhaustion of trying to cope with him was just too much.

My DM didn’t wander, but for various reasons (there had already been a kitchen fire) we were terrified of her setting the house on fire and being unable to get out - because she was constantly locking doors, hiding keys and then being unable to find them. (In her head of course she hadn’t hidden them at all - ‘someone else’ was up to no good.
For a long time we’d had to have our own sets of keys cut for our own visits.

Please don’t write off care homes. Many people, do very well in them. Hardly anyone will ever say, if asked, that they want to move to one, but as pps have said, when dementia is involved, a person’s needs will often come to take precedence over their wants, especially when as (so often) they genuinely have no idea that they’re incapable of managing at home any more, even with regular care visits.

Dementia is a bitch. I don't want yo get dragged into what's best for him. It's hard enough to decide for your own family, I wouldn't presume to advise for someone else's. But here's some information about some gadgets that are out there.

The company plugs a small box into your telephone line and you can get different sensors for around the house for different things. So my mum has heat and snoke sensors. She sleeps very heavily because of the dementia and the bleeping wouldn't wake her up. You can also get water sensors for sinks overflowing. They can attach a sensor to each door and set the time the sensors work. So say 10pm to 7am. They'll then contact you as soon as the sensor rings in the office. If you don't pick up, they contact the police.

Initially my mum had a pendant for her to press if she fell. It cost us about £100 a year for the pendant, the sensor box and the service. But she never used it so we sent it back. Subsequently, we made a claim for carers allowance and they referred mum's case to SS who never spoke to us but who asked a company to contact us and they then fitted sensors and an outside keysafe. Although mum has money and isn't entitled to any funded care, apparently SS are paying for this. I cannot understand at all how the system works. It all seems very random. Social care is a complete mess.

You can also get pressure mats that are attached to a machine that you can dictate a message on. So you could say, dad, go back to bed. Don't go out and I'll come and see you later. When your father treads on the mat, the message is played.

You can also get a tracker that is like an insole that fits in their shoe so you can easily find them.

You can also get cameras to put in their room, maybe their bedroom, so you can keep an eye on them and if they look like they're getting dressed, you can press a button and speak to them.

I'm not saying which is right for you, but just letting you know some of what's out there. My mum had trouble turning the telly over so she used to get bored which made us worried that she'd start to wander. We have installed a remote so that we can turn her telly over from our houses. So I have a camera facing her telly so I can check what she's watching and if she's bored, I'll change channels for her.

It's a minefield and I hope you get the help you need.

You are right to request and push for emergency respite. You could explain this as a short stay while you make some repairs to the house etc. Whilst he is having the respite care he will have more professionals assessing his needs and it will be clear he cannot manage at home anymore.
You may need to push hard for this and explain that you are unable to help as you are unwell and cannot get to your DF’s home if needed.
From my experience in the nursing care world it’s only when family say they are at breaking point and refuse to continue to be the crutch that SS will step in as it becomes their responsibility.
This sounds underhand but it really isn’t as living with this level of stress and responsibility on your part is not sustainable and the pressures on SS are such that they are only managing crisis.
Hope you get the support you need for your DF

We've been looking round homes for respite care for my mum. There's a massive difference between homes and we only looked at those that have been recommended. I'm not sure I'd want SS making a decision on where my parent went.

I’m sorry it’s so stressful for you. As with others we supported a relative through dementia. We had large notices around the flat giving instructions, removed dangerous items - swooped a kettle for a travel sized kettle etc. the GP did also give medication for anxiety which could be worth discussing at the appointment as that calmed things a little and stopped some wandering.
Ultimately fairly quickly she moved to a home with a dementia unit.

Unless you pay privately for a care home SS will have some involvement in choosing due to costs. Yes families can say what they prefer or more local to them but ultimately some people won’t have full choice. If a bed is 1200pw at one you like but 950pw at another you may be asked to top up if you want the higher cost home. We often get contacted by SS and the placement is almost made and then they go to a cheaper bed nearby.

I would start at least thinking about a nursing home because this does sound like a tipping point.

We went through a process of choosing a home and they turned dm down because she didn't have enough money (possibly they thought they couldn't meet her needs but thats not what they said). I find the system completely opaque but starting to scope out options might be sensible. Ageee with emergency respite care.

Thank you for these responses.

With regard to respite care - does anyone know if I can apply for a DOLS for respite for him? I ask because when I last spoke to him about 'having a short holiday for a week', I approached a local care home that also offers respite stays and they told me that if he arrived on the Monday morning and by lunchtime was demanding to go home they wouldn't be able to stop him and I'd have to collect him. Of course that would mean losing £1100 which is paid upfront and non refundable for that establishment.

He will definitely be paying his care costs, I am still trying to get my head around how they calculate it, i.e. is it only what savings he has or is it all his assets including his home that are taken into account for the £23,000 threshold. I get very stressed every time I try and read the guidance and I feel like I'm failing him.
Someone upthread suggested I ask for a Carers assessment and I am going to do that.
If I am told to organise respite myself, I would feel very anxious about trying to get him somewhere in the car on my own, as I have terrible memories of when I had to accompany my DF when he took DM to the care home - she was in the back of the car kicking and screaming and trying to get out, it was awful.

I so appreciate PP's who have taken the time to respond and I am reading all your replies and making notes to follow up. Thank you.

These could be helpful short term so you can always find him if he goes out www.techsilver.co.uk/product/dementia-tracker-insoles-gps-smartsole/

Usually the care home applies for a DOLS well ours do but they are nursing homes with a nursing Dementia suite inside as well as standard nursing care.
It’s very hard if someone is living with dementia and very mobile they do have to be on a secure unit and hence the DOLS is requested as they cannot leave. We would do an assessment first with you and visit/call to get a clear picture of how his needs can be met.
The odd time a resident has refused to stay and been violent they may have to be moved but often the staff can distract and talk people round until they settle.
The threshold will include house and savings but if there is not enough in the savings pot SS can do a deferred payment and claim back from you when house sale goes through. There is also a thing called a 12 week property disregard where SS should fund whilst DF initially goes into care if you don’t have enough in the savings pot. So please do ask about that even if you fund a few weeks from the savings and then tell them that takes him below the threshold.
Try and get hold of a duty social worker.

Ask GP to refer to the older people's mental health service.
I'd start looking into respite care for a couple of weeks to give you a break and allow you time to think about the options.

If his carer (who has cared for others in a similar situation) is suggesting he's not safe and needs to be in a care home, then do look at local homes for respite. We visited at least 5 before finding somewhere for respite for our late DF and our widowed DM later moved into the same home. Knowing that she had chosen the home for DF so it was familiar to her it felt an easier choice and they've been marvellous with her care for 3 years now and we know the staff who feel like our extended family.
We also have an uncle with dementia in a different care home following a broken hip. It took him a little longer to settle as he doesnt like change and would not accept that he was not safe in his own home and needed to move. Medically he's much improved since moving in: his medication was updated and they make sure he takes it, eats regularly (so he's putting on a little weight and no longer looks gaunt and unkempt) and he gets much more positive social interaction than carers popping in for 15 mins 3 times a day and us at weekends (or at night if he presses the alarm). It's very much lifted the emotional worry from us and we're able to have a normal family relationship with both of them rather than a "carer" relationship IYSWIM.

You really need somewhere with a secure dementia unit not an open care home as they are correct in that they could not keep him safe and even if they had a DOLS they would not be able to watch the door 24/7.

@supercritter thank you I've just emailed them about their elderly monitoring system as that looks like it could be appropriate. The shoe tracker might not be as I think he wanders in what ever footwear he happens to have on which is probably his slippers but he also sometimes goes down to the local Sainsburys which is by a very busy road so there's a different risk issue with that. But thank you, I'm hoping I'll get a call from these people today.

I also remembered I've already downloaded a ton of stuff from Age UK about accessing needs assessments and costs. And I remembered I've asked for an O.T. assessment that has not taken place - this would help identify any other adaptations under £1000 that it seems are free of charge.

Yes, he needs to be in a specialist home.
People very often don't want to go but when it's a safety issue sometimes that decision has to be made for them.

If the sw is still saying he should stay at home and you carry on going round the you need to say no. I will change the contact to the duty SW contact and you can organise responding.

You'll find they'll suddenly change their mind and support him going into a unit

[quote PollyGray]**@lollipoprainbow* and @Flossieskeeper*

Yes, of course I'm aware how unsafe DF is, that's why I requested a reassessment of him after the last one only 3 weeks ago found he "has capacity" and had disallowed the Social Worker from sharing any information with me. I wanted them to reassess because the level of responsibility I feel, on top of working full time in the NHS, is so stressful and I can't keep both things going.

and @Flossieskeeper thank you for recognising my worries.

If my DF needs full time residential care that's what he's going to get but I have to go about this in the right way, you are correct, there are processes to follow. My DM was forcibly placed into a care home and died 10 days later, I think she just gave up.

But to those who've pointed out the blindingly obvious questions about 'what then' when DF continues to leave the house and I get contacted, I just hadn't thought that one through - now I feel a bit fobbed off the by Social Worker because it just won't work if the expectation is that I just attend and search for my Dad.

I'm going to get him to the GP next week and ask for a review, maybe see if they have any suggestions.[/quote]
What you have to do is to be quite harsh. SS have recommended the alarm as they don’t believe he needs to go into care. So have it fitted. When it goes off and you are contacted, the first thing to do is phone the police and tell them your DF has gone missing but you’re not able to get there at that time. Do this every time, and inform SS every time. That way, they will have every incident on record in order to make further decisions.
When my MIL kept falling we would be over there in the middle of the night to get her back into bed. We didn’t initially tell SS and so when they came to do an assessment they had no record and wouldn’t really listen to us. But once the incidents were officially recorded they realised she was in danger and so managed to arrange being placed in an assessment unit initially. It sounds really harsh, but it’s what your DF needs to happen in order to access the care he needs to keep him safe.