My sister, whose husband is suffering from vascular dementia, asked me the other day for my opinion on GPS tracking as she was wondering if it might be a good idea.
Although her husband is also sight impaired, he's still managing a daily walk on his own to local shops, and she wants him to have that little bit of independence for as long as he can, but is terrified every time he seems to take a little longer to return than she thinks is reasonable.
I don't have the most balanced view on this as I strongly believe it's a good idea, and I've told my family to fit one to me if I start to lose cognition, and I'd even be happy to be microchipped.
But I do know there are less radical views about it.
I've heard people say that it's a loss of dignity and personal freedom and of course it is for the average person, but in the case of dementia I'd give that the blame, not the tracker. I do know it's possible that it could be used for nefarious purposes, as in pinning down the location of someone who is away from their home in order to target it for some reason, by strangers or unscrupulous family members, but still, on balance, I'd far rather know that a tracker could locate me in the event of my going missing.
My police officer daughter tells me it's a really common thing for dementia sufferers to go missing and that it mostly doesn't hit the news unless some unfortunate person has got hopelessly lost and has died of exhaustion and exposure. And I did watch a very interesting documentary about a lady who'd gone missing, only to eventually be found deceased. It was very distressing and sad.
I think it would take a lot to change my strong view on this, but what do other members of our community think? Has anyone else any experience of using a tracker, or of a loved one wandering off and causing worry? I'd really like to give my sister a view that's perhaps based on experience or on a variety of opinions.
Hello Callendersgal, what a good point you make. My late mother-in-law had vascular dementia and Alzheimer’s and used to like to walk into the town. On one particular day she became confused as to how to get home. Luckily a very kind couple helped her and all was well.
I did know of one gentleman though who wasn’t as fortunate and vanished from his home only to be found deceased a few days later. Very sad.
I feel a tracker of some sort is a very good idea and could save distress and lives. Thank you for raising that point. Xxxx
It was really interesting to hear that you'd had a scare with your late mother-in-law when she'd become confused. It shows that you don't have to look far before you find someone who has actually experienced this, and sad to hear that you actually knew someone whose outcome from becoming confused and lost was so final.
My daughter was explaining police search procedures for a dementia victim and said that, based on long experienced, they know the lost and confused person will just go on walking and walking until they literally drop from exhaustion. A horrible thought.
So I'm really pleased to have my view confirmed that overall, trackers are a good thing and not just an invasive loss of freedom and privacy. I truly believe that it's the disorder that is the culprit here, not the equipment we need to use to keep the ones we care for safe.
That’s fine Callendersgal, my son is a police officer so would agree with what your daughter said too. It’s awful to think that lives are being lost needlessly. The tracker sounds like a way forward to me.
I think I may have Parkinson’s disease, I have a tremor in my right so difficult in my holding objects but most interesting things is wide spray of fog brain, I didn’t where to start, even thing looks familiar in the description but I’m of 55
Hello Josie-Anne, contact your doctor and set up a face to face appointment so you can discuss getting a proper diagnosis. You need to know what’s going on.
Hi Josie-Anne, I'd just like to endorse what sassy59 has said with regard to your fears about possibly having Parkinsons. It's so easy to look online and make the symptoms fit whatever seems to be going on with us. It would set your mind at rest to have a face-to-face appointment, so that you can discuss your fears and have some tests arranged, if necessary. Don't be afraid to voice your fears and say what's on your mind as otherwise, because of the pandemic and the reluctance of GPs to physically see patients, you might be persuaded that a phone appointment is the way to go. Be firm and insist that only face-to-face can allay your fears. Very best wishes and I hope your fears are unfounded, but as sassy59 said, you really do need to find out what is going on.
I’m waiting for an appointment for the neurologist so I will ask for a face to face as docs won’t see anybody at the moment as we are still in lockdown in the Isle of Man 🇮🇲, my fingers are constantly swollen that I can’t grip anything or wear my rings, I asked my fiancé a question and he replied that’s 5 times you asked my that and I gave you the answer and I can’t even remember asking him, my memory is shocking 🥲
That must be so distressing for you Josie-Ann and so many of us aren't able to have our personal medical fears addressed because of the covid situation. I know it's easy to say and oh so hard to actually be able to do, but try not to let your mind race on into imagining outcomes and diagnoses. Ultimately we aren't able to change what is, but we can worry endlessly about what might be. I know that whatever is eventually diagnosed you will feel better. Even when it's not a great outcome we know what we are dealing with when we know the cause of the problem. I hope your fiancé is understanding and knows how distressing this is for you and tries to allay your fears. Hoping that the situation in the IOM will allow you to seek a proper medical review as soon as possible. Meantime please take care and do let us know how you get on in future.
Thank you Callendersgal, yes my fiancé is very understanding and knows that I’m worrying about my memory, he helps me in every way possible, when I’ve done one day I’m in bed the next, normally until about early afternoon but it can be all day Eva use my body just hurts and this weather doesn’t help, I’ve lost weight and my skin is suddenly starting to look wrinkled and I’ve lost a lot of my muscle tone, my hair is course and I don’t know why as I drink lots of water, and advice please would be grateful ❤️
I’m waiting for a face to face appointment but we are still in lockdown here in the Isle of Man 🇮🇲 and they won’t see anybody, my fingers are so swollen I can’t grip anything, I can’t wear my rings, and my memory is so shocking is unreal yet when I get in the car I don’t have a problem, I remember everything and always double check my mirrors so I don’t know how that works 🤷♀️
I bought a tracker for my dad, but we haven't needed to use it...as yet! You know that you won't be using it for nefarious reasons, and the reasons you give are valid safety issues. Unless your sister's husband doesn't make his way home, does he really need one yet? If the people at the local shops know him, they can help him out? They could also join the Herbert Protocol and get her husband to wear/carry something neutral that can help to identify who is so that no-one gets his address but they can track it from local police station?
That's a really sensible approach. To have a tracker ready for use if and when it's needed. And I think my brother-in-law isn't quite at the stage where it's needed as yet, either. My sister's been married to him for 62 years now and I think she'll absolutely be the best person to decide if and when it's appropriate. But I'm glad we have so many lovely, sensible members who seem to have added weight to my thought that, overall it is a good idea. Thanks so much.
How would you know all these things like them not making their way home if you didn’t live with the person with dementia I’m curious now as my mum has vascular dementia and has mentioned forgetting her bearings and getting lost but I don’t think she’s got lost to that stage but I wouldn’t know that she Dosent live with me and as far as I know is quite independent im wondering if this would benefit me now or in the future
I wouldn't intend my post to cause you any unnecessary concern about your mum's safety, but if you aren't able to see her on a regular basis, it might be something to keep in mind for the future, in case it would be helpful. Sometimes dementia sufferers do wander off and it could save a lot of worry and time if they can be located quickly. A tracker is really just a way of doing that, and is just an extra help for a person keep a little bit of independence for longer. If it's fitted it can help family or police in their search for someone who is missing. But by no means is it necessary for all dementia sufferers all of the time. And it seems that although you don't live together, you are in regular touch and I guess that's the key to knowing when such a thing might be useful in helping to keep her safe. Thanks for your kind response and I wish both you and your mum well in future. Do stay in touch and let us know how you are getting on.
You wouldn't know, but maybe you need to monitor as the moment of being 'lost' doesn't creep up on people, it can happen at any time. Again I'd suggest the Herbert Protocol, so at least the police would know where to take her? Although I thoroughly believe in independence, at some point we do need to step in to ensure safety. Does your mum have friends/other family members that could go out with her? Or a befriender who would go out with her? Could also use community transport to ensure that she gets where she's going, and back again safely when she's finished shopping? If she lives in sheltered housing, they usually provide access to transport to go shopping/have a cup of tea once a week. Some sheltered accommodation will have activities for residents and members of the public. Churches have different kinds of groups going on. All these are options so that your mum can get out and about safely, without the need to have a tracker.
She has no one except me and a few friends her sister but she lives alone in a bungalow and goes on her own when she goes out but she’s told me about this lost feeling she gets and has done it with me before it’s a worry when we don’t live anywhere near each other she’s on her 4th year living with this age 54
It's a real worry when you can't physically be near your mum, and a tragedy that this has happened to her at a relatively early age. At the moment I'd say to just keep in regular contact with her by any means you can. The time might come when she'll need more in the way of care, but one day at a time and if she's managing at the moment, try not to worry too much. Please keep in touch with the group. There are some lovely people here who will have been through similar situations and I'm sure can offer advice when the time comes that you need it. Very best wishes.
you may need to try and understand what she means by 'lost' feeling? Could be that she can't recall her plan of action and all she would need is a list of where she needs to go and in which order? And maybe what she needs from each place? Amazing how a list can instil a bit of confidence. Even asking the way can help boost confidence
It’s she looses her bearing when she is out and as she lives far from town and our town is quite big she will get half way and forget where she is heading she’s already tried memory techniques but when she has that she has to wait for it all to kick in type of thing
Since the Bus Services Act was introduced, all forms of public transport should now be dementia friendly, from taxis to trains to trams. Your sister would only need to carry a card which has her needs identified that can be shown to drivers/conductors /other staff who can then discretely help. All relevant numbers could be in her fone, and people, especially in shops, would help too. Having a card for each bag would be an idea to ensure that she has one with her at all times?
What is this card? as far as I know she Dosent have anything like that she keeps her illness very private being in her 50s it’s hard for people to even know as she does look young aswell so Dosent help! it would be ideal to have something like that where can I get this card ?x
U may need to make your own? Not that difficult to do and then get them laminated so they don't get tatty? Maybe make a few just in case she loses any?
Let's hope that it would be a very rare thing for anyone to use a tracker for the wrong reasons. I think for the majority of people it would be used from love and concern. Thanks so much for your input.
I'd suggest having a look online at the sorts of device that are available. Lell1's suggestions are good, or there are other trackers that are worn like a wristwatch.
Thanks so much callendersgirl all three are good ideas, I think if someone does wander off rather than get lost they might not take stuff with them , so something on them like a watch that can just stay on is good if the person will wear it and especially if it’s waterproof so it doesn’t need to be taken off for any reason.
Thanks so much for your input Lynd. I completely agree about the win/win situation that a tracker provides and I think (or hope) that few people would abuse its use. I'm actually reassured that most people tend to agree that it's a good idea. The temptation was to say to my sister, 'yes, of course... go for it', but I'm really glad to hear some confirmation from your good self and others.
You can now get a Shoe insole with a tracker , I wish they were around when my mum was alive , but sadly she died last January 23rd of Gastro Entiritus and Pneumonia, but she was A Wonderer , luckily she was in a village where everyone knew her , but would really have been glad of them x
So sorry to hear of the loss of your mum 5855, but thanks so much for your input. I'd never heard of the shoe insole device. I'll pass this on to Riverchick, who was asking how trackers can be worn, in case she misses your response. That would be a very unobtrusive method and, in the main, shoes are generally worn without too much intervention being needed. Thanks again, and again, my condolences on your sad loss.
Thank you Callendersgal , left a big gap in our lives and I have felt so lost with having so much time on my hands , but have a part-time job at a boarding school ,3 hrs in the evening Mon- Fri , but lost in the day time , I live in a very small village where we all know each other and everyone been great , but the nights are the worse , but I am getting better slowly , you can't look after someone 24/7 for 10 yrs without having some effect , and my friends take me out twice a month , promised Mum I'd have a wonderful life , I will get there ❤️
I guess it's one day at a time with loss and grief, isn't it? And no two people's journey through it is ever the same. But please do remember we are here for you as a community. Whilst we might not have experienced grief just as you are experiencing, many of us have had similar feelings to yours, and we're all happy to support in any way we can. Doesn't have to be a big topic or even a comment. Just say 'hi' if you like, or let us know if you are feeling down.
On the other hand I'm quite sure you'll have experience and fellow-feeling after taking care of your beloved mum for so long, so do dive in and offer suggestions when you can, as with the excellent info. about shoe insole trackers! Very best wishes again, and I hope that time will bring you some solace.
My friend's husband has an GPS app on his mobile so he can be tracked and he wears a chunky bracelet that says something like ''if found please call xxx on xxxxxxxxxx''
He loves his bracelet which never comes off and his phone is kept in his jacket pocket, only coming out when my friend charges it up twice a week. Unfortunately his phone skills have all but disappeared so he never uses it himself. It literally is an over-sized tracker but not seen as such.
Hi oldwomaninpain,
That really does cover it from all angles without being unduly obtrusive. And I guess that it’s got to be a good start just to make sure there’s a note in the pocket with some basic details and a contact number. Thanks and best wishes.
Hi Sue, I think that is a brilliant idea if they can get about at least you can pin point where they could be , we had a older man who went missing and unfortunately he was found near the canal the next day and if something like that was fitted he might still have been alive today , but like you say everyone has their own views on things I am with you on this one as it can save lives . Clive X 🤗
That's sad to hear Clive and I've already given strict instructions for me to be fitted with one if the need should arise. I wrote the post some time ago, and sad to say my brother-in-law has now passed the point where he can voluntarily be allowed to go out on his own. He hasn't shown any desire to go out but I think it's still wise to be vigilant in case he becomes confused and sets out on his own at some time. 👍😊
Although this is an emotive subject.I think I’m in favour of trackers.a couple of years ago a colleague s grandad went missing in his mobility scooter- he had dementia. He was found in a field 3 days later,sadly he’d died.
It may enable to stop in their own homes for longer and give peace of mind to relatives.
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Identifying dementia
End of Dementia Journey
Denial of dementia symptoms
Vascular Dementia.
