Pre-Wandering?

[Sarasa]

I know the red line (sorry if that makes anyone squeak about Brexit) that leads a lot of people to decide that their person with dementia needs to move into care or have more care at home is wandering and getting lost. Does this happen suddenly or do people notice that there is an early stage where the person doesn't get lost exactly but goes out at inappropriate times?
I'm asking because three of the four times I've been to see my mother this year she's either been on the way out of her flats or I've tracked her down in Marks and Spencer (which seems her second home). All three times she knew I was coming, and roughly the time I'd be there. I live two trains and a bus away so can't give an exact time of arrival. The time I bumped into her at the entrance to her block of flats she was on her way to her Keep Fit class. The class is five minutes away at 2.00pm and it was 11.30 in the morning. Yesterday I got there slightly earlier than usual, but when I found her,she'd already had a coffee and scone in the café, and was in the process of doing a bit of random shopping. I guess she must have been out for the best part of an hour already. When I asked why, she had a variety of reasons. She thought I might not come, it was a bit dark so she thought it was later than it was etc. etc.. I asked if she looked at her clock, she has macular but has a large wall clock that she could certainly tell the time from last year. She wasn't clear as to if she had or not. I don't think her eyesight is much worse, so I have the horrible feeling she can no longer tell the time from an analogue clock.
This happened once last year in February, but happening three time to me and once to one of mum's friends in the space of a fortnight make me think there is something else going on. Mum of course refuses to believe that there is anything wrong with her.
I'm just worried that next time she might decide to hop on a bus and get really lost.

 

[canary]

My OH has started getting up at 5.00am because he knows that he has a doctors appointment - even if its at 11.30am and will only take 15 mins to get there. He can still tell the time, but I think the concept of what the time means is beginning to get a bit hazy and he certainly doesnt have much idea how long something is going to take.

In OHs case I dont think he will start wandering soon, but, there again I could be wrong.

 

[Bunpoots]

My dad used to turn up for appointments and dinner at my house at the wrong times but it was a long time after that he actually started wandering and getting lost. But he realised that he would get lost if he went anywhere alone until he reached the later stages. Then he thought there was nothing wrong with him!!

 

[Elle3]

I know the red line (sorry if that makes anyone squeak about Brexit) that leads a lot of people to decide that their person with dementia needs to move into care or have more care at home is wandering and getting lost. Does this happen suddenly or do people notice that there is an early stage where the person doesn't get lost exactly but goes out at inappropriate times?
I'm asking because three of the four times I've been to see my mother this year she's either been on the way out of her flats or I've tracked her down in Marks and Spencer (which seems her second home). All three times she knew I was coming, and roughly the time I'd be there. I live two trains and a bus away so can't give an exact time of arrival. The time I bumped into her at the entrance to her block of flats she was on her way to her Keep Fit class. The class is five minutes away at 2.00pm and it was 11.30 in the morning. Yesterday I got there slightly earlier than usual, but when I found her,she'd already had a coffee and scone in the café, and was in the process of doing a bit of random shopping. I guess she must have been out for the best part of an hour already. When I asked why, she had a variety of reasons. She thought I might not come, it was a bit dark so she thought it was later than it was etc. etc.. I asked if she looked at her clock, she has macular but has a large wall clock that she could certainly tell the time from last year. She wasn't clear as to if she had or not. I don't think her eyesight is much worse, so I have the horrible feeling she can no longer tell the time from an analogue clock.
This happened once last year in February, but happening three time to me and once to one of mum's friends in the space of a fortnight make me think there is something else going on. Mum of course refuses to believe that there is anything wrong with her.
I'm just worried that next time she might decide to hop on a bus and get really lost.

My dad did this and I managed to deal with it for about 2 years before he had to go into care and to be honest although this was a big issue it wasn’t the reason I finally agreed with the SW he had to go into care.

My dad used all the same reasons as your mum is doing, ‘I thought you weren’t coming’, ‘you were late’, ‘I thought we were meeting there’ etc etc. He managed to justify and come up with all sorts of reasons or excuses for going out and he would turn up extremely early for things and blame everyone else for keeping him waiting or not being there.

My dad was obsessed with travelling on the train, he’d had a routine for years of going out for the day on the train, using his free travel pass, this obviously became an issue when his dementia got worse. But as long as the routine was the same he managed ok, it was change that stumped him, but he was always so stubborn that he thought he was always right. He also started getting his day and night mixed up, so would start his daily routine at 7pm, rather than 7am, then he would get into all sorts of trouble as there were no return trains. We had many calls in the middle of the night and sleepless nights.

We finally managed to stop this routine by ‘losing’ his travel pass but this started a new routine for him, which was visiting his bank. This thankfully was local and walking distance, but he would go out at all times of day and night, expecting it to be open.

The answer for me was given to me by Social services, which was a system called ‘just checking’. It’s basically sensors that are situated around the home and on external doors. You can view online or via mobile their movements around their home, it doesn’t invade their privacy or stop their movements, but it enables you to see if they are doing normal things around their home. We had a sensor in the kitchen, lounge, bedroom, landing and on his front and back door. We could see when he went to bed and got up, if he went into kitchen at meal times and if he went out and when he came back in. Without this system we could not have coped and he wouldn’t have been able to stay in his home as long as he did. We still had phone calls from concerned people who found dad and from the Police, but he became more predictable so using the system and monitoring his movements enabled me to sometimes second guess what he would do.

I was also given some good advice by the SW, she suggested I put his house keys on a key ring, with his name on them and my contact details, just in case he got lost, if someone helped him they could call me and I could go and get him. Just don’t put their address on it, for safety reasons of course.

Good luck, it is a worrying issue. Elle x

 

[Moggymad]

My mum would have her coat on ready for me hours before I arrived. Sometimes she would wait outside her flats much earlier than the time arranged. Mum always got the times mixed up or even the day & would be waiting outside for me on a day I wasn't visiting. She had a friend who she would go out with most days always to the same shops every day. That's when the stockpiling of tins of soup, crisps & biscuits started. She became very restless wanting to go out round the shops even if she had already been. It was the start of a kind of anxiety that did get worse over time & was the reason mum eventually had to move into care for her own safety. It did take a number of years before it got to that stage, but it was evident beforehand that she felt restless & unsettled & was always wanting to live somewhere else. Anywhere else she would have got lost but no amount of reasoning or explaining worked. It was quite an unhappy time really but she felt better when out & about & in company of others.

 

[Sarasa]

Mum phoned at 1.30 today to say there was no one at her Keep Fit class. I pointed out it didn't start till two so there wouldn't have been. She'd even gone into Marks to see if she'd missed it all together and her friends were there having coffee. She then phoned ten minutes ago to tell me the same story. I asked her if she'd gone when I said she'd got the time wrong and there was time to go back. She claimed she did and there was still no-one there. Hmm, not sure what was happening there. Mum says the reason she is getting in a muddle is that her clock isn't working. She mentioned that in passing when we were having a coffee on Saturday and I'm kicking myself for not checking when I went back to her flat.
I think from what everyone has said in reply to my first post this is a confusion with time, rather than wandering. It's something I've noticed more and more of in the last year and I guess it will just get worse. Of course mum still can't see there is anything wrong.

 

[Sirena]

I agree, she's confused about times rather than wandering. My mother didn't know the time/day two years before the wandering began (obviously it's variable between individuals). If we visited we had to ring half an hour before, there was no point telling her in advance. And even having told her we were on the way, she'd forget within minutes so we still had to visit at a time when she would 'naturally' be in, i.e. early morning. I suspect your mother's clock is working but she cannot interpret the information it gives her.

 

[Banjomansmate]

The Banjoman has had no concept of time for quite a while, I have to phone him to remind him of any appointment with the Dr.’s surgery nurse. I have been doing this only on the day of the appointment because when I gave him advance warning he would head off for the surgery, a three minute walk away, at whatever time it came into his head. I have had phone calls at 3.00.a.m. to tell me he’d just been to the surgery but there was nobody there. Unfortunately I couldn’t say “You don’t go there in the dark” or “If it’s dark out you stay indoors” because I had taken him for appointments on dark winter evenings!
I think he would fall asleep in his chair and on waking he would remember he had to go to the surgery and not even think about the time, he just knew he had to go there so he went.

 

[Amy in the US]

I agree that losing the concept of time is common with dementia, as is anxiety or concern about appointments, an obsession or fixation with calendars and diaries, writing notes, and so on.

My mother went into a care home after a stay in hospital (the US version of sectioning) after a wandering episode where she was lost and injured and inadequately dressed for the cold winter morning. Scary stuff. Of course I'll never know if my mother just went for a walk, or to fetch the mail, or what happened. She had a lot of things going on.

I agree that what you describe sounds more like time confusion but would still urge some consideration. By the time my mother got to her crisis, there were a number of things she wasn't capable of doing any longer, all of which were surprises to me. She wasn't able to cook, shop for proper food, clean, do laundry, bathe herself, pay bills, drive safely, take her medication properly, navigate without getting lost, or identify scammers. She had at least two car accidents, likely had several falls, was malnourished, was over- and under-dosing on all her prescription medications and a horrid cocktail of over the counter drugs as well, hadn't done laundry in weeks or months, hadn't showered in months, and paid several thousand dollars to various scammers and unsavory persons. She was lucky not to have seriously injured or killed herself or someone else. I lived a hundred miles away and as you know, it's not easy to try to manage these things long distance. Like many of us, I had to wait for the crisis to get both a diagnosis and help put in place.

I don't want to frighten you, but dementia causes a loss of executive function and reasoning skills, among other things, and this can mean more supervision and assistance is needed for the person to be safe. If your mother is having time confusion, there may be other issues as well. Or perhaps there aren't, and I certainly hope not, but it's worth looking into. Most people with dementia have no insight on their brain damage and resulting impairments (anosognosia) and my mother, who is intelligent and very verbal, was convincing in her assertions that she was fine and needed no help.

I hope you can find help for both you and your mother and best wishes.

 

[Sirena]

I agree @Amy in the US , my mother also had other problems at the time-confusion stage - she was constantly losing her keys and unable to deal with her finances. Both of those things became evident so could be dealt with.

However what was not yet evident was that she could not prepare food and sometimes didn't remember to eat anyway. She couldn't use the washing machine, and started piling up all her clothes to take them to the recycling bank and buying new ones (possibly the two things were related). During this time she lost a lot of weight, which she has never regained (she's now underweight). She had a 'friend' who took her shopping and got my mother to buy her things - the friendly version of scamming I suppose, it was worse because it was someone she knew. Like Amy, I lived a distance away so only got snapshots of how she was coping, and she covered up her lapses very well so for a while I didn't realise quite how bad things were.

 

[brambles]

I found my mum was helped by a talking clock. You just touch top and it announces the time. they are not expensive and she had one in each room when she was at home. she has taken one into her care home now but rarely uses it there. At home she would press it every couple of minutes.

 

[Sarasa]

Thank you all for you input. We are in the process of selling mum's flat @Amy in the US and moving her nearer my brother to an extra-care flat. The market is sloooow at the moment so not sure when that will happen or if we'll be overtaken by events and have to look at care homes.
We've wondered about talking clocks @brambles, might look at those, though mum's second phone call of the day was to say her clock was fixed. I assume she trotted down to the local jewellers and asked them to put a battery in it. Her first was to ask when I was going over, so explained again its a busy week so can't get there till next Monday. I'm kicking myself I forgot to remind her that her on-line delivery was coming. She remembered yesterday as one phone call was to remind me not to put yoghurts on the order. Today she forgot and was out sorting out her clock when they arrived. I always have the order between 9.30-10.30 as that is the time she's always had it (she used to do it herself until her eyesight got bad) and I assumed that she is so slow at getting ready in the mornings she'd never be out of the door before 10.30 anyway. It's been sorted now, and the order is coming tomorrow. I'm out ,but I guess I'd better use my mobile and phone to remind her.
@Banjomansmate , I think the falling asleep at random times does add to confusion. Mum often thinks it is the next day, or that things she's dreamed are true. She often either doesn't remember I've been there that day, or thinks I left without saying goodbye.

 

[TheBearsMummy]

We bought one of the digital clocks that show time/day/date and time of day morning /afternoon/evening after seeing it recommended on here and it's worked well so far.
We were lucky in that her mantle-piece clock was broken just prior to Christmas a couple of years ago so we were able to introduce the new one as a Christmas present which overcame a lot of the resistance to having anything new or different. She still has her old clock but can see that it is missing a hand so has now accepted the new one. We can pass an hour on having a conversation about it being Sunday because the clock says so

 

[Sarasa]

Thanks @TheBearsMummy . I'm going to do some research on clocks. Mum has macular so I think a simple speaking clock might be best. My MiL has one of those digital clocks, and it is very clear so maybe mum would be Ok. I don't know if she'd look at it thought!
The order that was supposed to come yesterday morning was re-scheduled for the evening. I phoned up the company and had a bit of a moan, but mum seemed Ok with it coming between 8-9 so I left it. She phoned up first thing this morning to say they didn't come till 11.30, woke her up so she refused the order. No they didn't they came at 8.30 but mum was already in bed asleep. She told me her clock was saying midday when it was just past nine this morning. She didn't seem convinced when I told her the real time. It's obvious that mum really finds time confusing now. She phoned at three yesterday afternoon to check it wasn't 8 0'clock yet.

 

[Sirena]

Thanks @TheBearsMummy . I'm going to do some research on clocks. Mum has macular so I think a simple speaking clock might be best. My MiL has one of those digital clocks, and it is very clear so maybe mum would be Ok. I don't know if she'd look at it thought!
.

My mother's care agency bought her a calendar/day clock because she always asked them what day it was. Needless to say she still asked them - I am not sure if she forgot to look, or if she looked and couldn't interpret the information. Two years on, if you show her a magazine headline she will read it out, but she doesn't understand what it means.

 

[Banjomansmate]

Despite having two clocks that show day and date and even morning, afternoon etc. the Banjoman still struggled with time so I bought him a talking watch and that has helped a little. I can tell him over the phone to check what the time is and we both can hear what time it is!

 

[Sarasa]

I've bought an extremely simple talking clock and will be taking it over on Saturday. It's not just not knowing the time but interpreting it correctly that seems to be becoming a problem, so not sure how helpful it will be.

 

[Ohso]

I just bought one like this. Called a Rosebud Reminder, I am just going through the process of adding the reminders ( carer visiting 08.30am /family visiting 5.30pm / its time for a cup of tea 11.30 etc but looks good so far and reminder goes off for about 20 seconds I think...

 

[Sarasa]

Thanks for the suggestion @Mandy1959. I'll see how the talking clock goes down and take it from there.