Fear of getting lost

[KenC]

I was diagnosed with Lewy Body Dementia in 2004 but nothing had prepared me for what was happening or in deed what was to come in the future. I was shocked at just how things could change in a persons life once this illness kicks in.
On one occasion I got on a bus, and then returned home on the next bus because I was unsure as to what I was looking for, but this was before I was given Rivastigmine.

I have in this time managed to get lost on three occasions, why out shopping. However some of the large shopping centres seem to have colour coded car parks, which is fine when you can remember things perfectly, but not to us.
Things got so bad that when I go to the large metro centre, I go by bus as there is only one bus station, and I tend now to go with my wife.
On another occasion I went for a walk in our local park, and the noise of the wind in the trees totally spooked my and I tried to run home. I was then told by my consultant that my hearing had become acute through the Lewy Bodies, and that had made the trees sound louder than normal.
I have tried all sorts of things to help, including carrying my mobile phone everywhere I go, but sometimes things just work against us no matter what we do.

Our local County Council has now pioneered a trial with the BUDDI system, and those who have this illness can join up and try the tracking devices free of charge, so it seems people are starting to realise that we need help to carry on with our freedom to walk where we want for as long as we wish.

Ken

 

[Izzy]

It must be really hard Ken to be so aware of your problems in this area. I'm sorry - I didn't mean that to sound insulting and I hope it doesn't. My husband has Alzheimers and he is aware but not as aware as you are. He now doesn't go out unless he is with me or my brother. My concern is always that he will go out by himself when I am at work. He hasn't done that yet but did go missing at around 5am one morning when I was staying overnight at a function and my brother was sleeping in the room next to him!! This was terrifying for all concerned and we had search and rescue and the police and fire brigade out!

I hope you find a way to help you keep doing what you have always done. xx

 

[Skye]

Dear ken

That must be worrying for you, I know how much you valued your ability to go out on your own.

I hope the tracking device works, and gives you back some freedom.

Love,

 

[Vonny]

Dear Ken, I agree with Izzy, it must be so hard to be aware of your problems and pretty much unable to do anything about them.

Getting lost is an awful feeling at the best of times, let alone when you're confused as well.

I assume you are taking up the BUDDI trial? Please let us know how you get on with it.

Take care xxx

 

[KenC]

Hi Vonny

This Buddi has become a major part of me these days, and it works wonderfully, apart from this morning when I accidently set it off, but the County Carers were very kind about it when I managed to contact them.

These are wonderful things, but its a pity that they are so expensive to buy.

Ken

 

[Linda Mc]

Buddi is such a good idea and glad to see you making use of it Ken.

Lovely to see you posting as well love to you and Janice.

 

[shelagh]

I've not heard of the buddi before - I could make use of it. I don't exactly get lost at least I don't since I had the nedication. But I have got on the wrong train at Euston and on the wrong bus several times. I have one of the little blue cards from the Society and it's helpful at stations when I ask for help. I've had to give up at Euston and now I hust go to the disabled reception centre show my card and asks to be taken to the right train. I've found I need the card because I don't look disabled, I don't sound disabled so they seemed to think I was trying to queue jump onto the train. But I really struggle with number recognition and I just ended up on the wrong platform. Today a really sweet young man from the disabled centre walked me down to the train, settled me down into a seat before anyone else was getting on, asked the train manager to make sure I got off at Stoke and told me all about his gran who had dementia as we walked. The train manager was really kind too, the train was delayed asnd he came and asked if he could ring anyone for me to tell them that. PEOPLE ARE KIND but we need to ask, we need to say I have dementia please can you help me.

 

[Izzy]

Is the buddi something you wear or carry. I know Bill would never remember to take something with him. x

 

[Katrine]

Escorted travel

I learn so much from this forum. What a sensible idea to have an escort to the train. This reminded me of an incident at the airport a few weeks ago when I saw a young man in his late teens that I had seen before on a regular flight and he smiled at me. I didn't smile back because I knew we'd never spoken and thought he might have mistaken me for someone he knew and would engage in an embarassing conversation before he realised that he did not. However, I now realise that he just recognised my face from a previous flight.

Anyway... he was hovering at the boarding gate, talking to the staff, and when they announced the boarding he was given a special escort. We must have all looked a bit puzzled because he broke into a broad grin and said "Make way - person with Aspergers coming through!" I thought this was sweet. I hadn't realised that this was a disability that would require an escort but it obviously made him feel confident about travelling, so why not? Glad to see the travel industry stepping up to the mark when it's not too many years ago when people with disabilities were banned from travel for various stupid and spurious health and safety reasons.

And yes, of course I'll smile at him next time!

 

[KenC]

The reason I am trying this is because I have got lost on one occasion, and have had a panic attack on three occasions simply because I forgot where I was, and was confused by either noise or people.

This has given me a lot of confidence, to do more on my own, but sadly due to the weather recently this has been cut back. This was because the wind was so strong that I would not go out on my own.

But this type can be carried in a persons pocket, although mine is on a cord around my neck, and I pick it up before leaving the house. While I am out, my wife can actually see where I am by logging on to the website, and it shows my exact spot.
I decided that I wanted this on a cord so that I did not drop it out of my pocket, as they are expensive to replace.

Apart from this I always carry my help card, which also goes where ever I go, and is very helpful.

Ken

 

[TinaT]

May I ask do you have to pay for this service? It's a bit too late to help my husband who also has LBD - parkinsons & dementia. We could have used this buddy system so much.

In the early days my husband used to phone me at work to tell me the car had broken down. I then got the mechanic out to him. The mechanic always said the car was fine and it was only much, much later that I realised what was happening. He had lost his way home and it was his method of getting back home as he used to follow the local mechanic back to our village!

Wish I had known as much about this disease then as I do now but we are all blessed with hindsight I guess. I'm glad you have started this thread as I'm sure the information about the 'buddy' will be helpful to others in a similar situation.

TinaT

 

[alex]

Hi Ken

I think you do extremely well to get around the Metro Centre, i know of many people who don't have dementia and get lost in the Metro Centre as its so big

I looked into the Buddy System for my mum a while back but she was not happy about the idea, however, i will look into it again as i'm sure it would be a great help.

I'm on the other side of the river to you but i'll ask mums SW to see if our council are offering a trial too.

Kind regards
Alex

 

[KenC]

I don't go to the metro centre on my own, as it is confusing at the best of times, and to be honest it gets too noisy for me.

I don't think ant other councils are doing a trial on the BUDDI, but I feel that ours could well be coming to an end due to the costs, but we will have to wait and see. The problem is that I don't pay for this trial.

I have seen a cheaper type of tracking devise, but I am unsure as to whether it is any good, but someone is looking into it.

Ken