advice on wandering - just started

[bubble26]

Hello, this is my first time in any forum. My Mum was getting odd in 2003 and finally in 2005 she was diagnosed with vascular dementia. She is 80 lives alone and is really happy and has kept her sense of humour. She is supported by dementia cares for 1 hr breakfast, 1//2 hr lunch, tea and bed. She also has assisted technology fitted on her door showing she has left the house. She normally only goes to a neighbour - she forgets and shuts the door and they all have the key safe. On Thursday she locked up and went over the park then got on a bus travelled 5 miles and looked round the shops - no bus pass, money only walking with a nighty in her hand. She was found by the police and bought back after us being frantic for 5 hours. She is now in hospital and we really don't know if it is time for a care home or if this was a crisis and basically she was just really fed up and went out. We have had no sleep since Thursday worrying about this. Has anybody experienced this and could you give me your thoughts?
Thanks D

 

[Brucie]

Hello D

this is a really difficult one, a classic struggle between head and heart!

If your Mum wanders like this then she is putting herself in a very vulnerable position, and also possible is a danger to other people - traffic etc.

These are just my own thoughts.

The only answer is for someone to be with her, and that means all the time at home - or, she might move to a suitable care home.

First stop I would make is with her GP and the consultant who made the diagnosis, to ask their suggestions.

 

[bubble26]

mums dementia

Thanks for your reply. I totally agree my heart and my head are at odds. Just rang the hospital and she is wandering about there - apparently very bored and trying desperately to tidy up the ward as she has always been very houseproud. We are going to speak to the consultant on monday (no doctors over the weekend) then try to increase the care package (we will pay) then look for some dementia clubs she can go to so she interacts with other people. Local police team have said they will be on alert. I am afraid though this will be the last chance! Nobody tells you this when you are young - I want to be a child again!
D

 

[suzanne]

Wandering

Hi. wandering is a problem and I fully appreciate what you are going through, that first gut wrenching shock of someone being returned inthe middle of the night is horrid. THe decision you have to make is difficult in the extreme and one that is made on your own, nothing we say can alleviate that burden for you,but know that we all support you in whatever choice you make and the choice is never a wrong one.If your mum is enjoying going round chatting with other patients and tidying the ward it may be an indicator that she would settle well in a care home environment.It isn't the easiest becoming the parent to the parent,chin up.Suzy

 

[bclark]

lost and found

hi bubble, yes went through similar situation with hubby, he was okay to take dog out so i thought, but one day he went missing 36hrs with the dog found in lewisham with the dog, god knows how he got there, but hadnt realised his confusion was getting worse, so now he has to be with someone all the time when he is out. can relate to the frantic search, glad she was found safe, keep well bclark

 

[ChrisH]

Hi Bubble

One of my mum's favourite phrases is "I like to go for a little walk. It does me good to have a bit of exercise"! Hmm, yes mum, that's really good, but please don't get into strangers cars. "Oh but I've seen them around" she said having happily told me she'd walked into the village for lunch (1 1/2 miles)and then remembered there were no buses on Sundays so she started walking back and a car pulled up and 2 ladies asked her if she'd like a lift!! I have no idea if they were people who knew her or not. On another occassion she was spotted by a neighbour who pulled up and asked where she was going. Just to the village, says mum - yep, unfortunately the wrong village in completely the wrong direction - he took her home. And I've been told the police have taken her home once.

Then she had a fall in the village (nothing serious) and ended up in hospital for 3 weeks. Now I think she only goes for a walk round the mobile home site where she lives a couple of times a day. As she's now having meals on wheels every day there's no reason for a stroll into the village.

I think for mum it is a way of getting one up on her friends and neighbours who she sometime belives think she's batty. She is physically fit and it was something that she can do and many of them probably can't, even the ones who are younger than her.

Chris

 

[bubble26]

Mum

Hi everybody, thanks so much for all your concern - it honestly makes me feel I am not alone. Been up the hospital tonight and she is busy tucking in all the patients in bed - plus told me about a dog running about in there.
Went back to a care home I really liked yesterday with my brother and arrived unannounced - it was like a little party in there all eating and chatting. So we have decided to give it a trial run. I honestly have nevery seen such a beautiful building all designed with Sterling University who apparently have specialisms in dementia. Watch this space.
Thanks again all. xxx

 

[Margarita]

We are going to speak to the consultant on monday (no doctors over the weekend) then try to increase the care package (we will pay) then look for some dementia clubs she can go to so she interacts with other people.

Only thing about when the wondering starts during the day if can also happen during the night, Mum was living me when the night time wondering started. I always thought mum was bored so that why she would go out for hours on end on her own, until she go so lost mum was also pick up by the police during the day .




I went out one night to a club leaving mum alone in the house, when I got back on my way home I found my mother in her night dress wondering the streets in the night around 4am

Only from my own experience from living we mum, you may find your mother very unsettle in her home when she gets back from hospital , so may find that your mother may need night sitters in case your mother wonder out at night time .

Only Medication for late stages of AZ called Exbiza help take away that symptom of wondering out into the street during the night or day , but if anything upset my mother she get so confuse if I was not around that she just wonder out into the street alone getting lost .

 

[bubble26]

Mum

Hi, oh you have made the statement I felt but never said about once the wandering starts during the day - then night next. Few weeks ago next door to Mum phoned me at 11pm saying Mum had knocked for a chat luckily she took her back home and settled her before ringing me. I am not too clear on what everybody keeps saying about stages - Mum has vascular dementia and to be honest nobody has told me much I keep looking at the website but its all seemed to be aimed at AZ.
D

 

[Margarita]

I keep looking at the website but its all seemed to be aimed at AZ.

I know what you mean. My mother was told she had AZ 6 years ago but my mother never followed the symptoms of AZ I thought it was just down to my mother being given Exbiza as my mother was double incontinent , not talking at all wondering the street getting lost .
Then mum was given Exbiza those entire symptoms disappear. This year I am told that mum has VD .
One sure bet even with VD that if the wondering has started during the day the night time wondering also going to start. I do hate to sound negative but I am just telling you the truth , truth does hurt sorry xx may come across at negative but that is not my intention when I post to sound negative, it just the symptoms are negative not me

This thread may be of help .

Alzheimer's and Vascular Dementia - is there a difference?

http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=844

What might cause vascular dementia?

http://www.alzheimers.org.uk/talkingpoint/discuss/showthread.php?t=2458

 

[Margarita]

This is another good read

http://www.alzheimers.org.uk/downloads/Understanding_Vascular_Dementia.pdf

How do symptoms progress?
The prognosis for someone with vascular dementia
depends on the factors causing the damage to their
brain and the location of the damage.
People with vascular dementia and the people close to
them often describe the development of symptoms as
being marked by sudden or ‘stepped’ changes. By that,
they mean symptoms develop unexpectedly or suddenly
get significantly worse. The person may then remain
stable for a while until there is another abrupt change in
their behaviour. This pattern often occurs when vascular
dementia is caused by strokes.
However, in some circumstances the progression of the
disease is more gradual, as it is with Alzheimer’s disease.
This is more characteristic of sub-cortical vascular
dementia caused by small vessel disease. These causes
are discussed in more detail on page 7.
As the disease progresses, other symptoms may develop.
These are often similar to the symptoms caused by other
forms of dementia, and may include:
B Confusion
B Seeing and hearing things that aren’t there
(hallucinations)
B Thinking and believing things that aren’t true
(delusions)
B ‘Wandering’ and getting lost in familiar places
B Epileptic seizures
B Behaviour that may seem aggressive – physically or
verbally
B Restlessness and pacing
B Incontinence – poor bladder or bowel control.
For more information on the later stages of dementia,
see the Alzheimer’s Society information sheet Later
stages of dementia.
6

 

[bubble26]

I totally agree with you and looking at her face tonight know it would break my heart for her to be out in the cold of a night especially as we live in the east end of london. I have tried to sell the new place to her saying its wonderful - I know she doesn't really understand but I feel that I owe it to her. The next bit I am dreading is giving up our childhood home - I know many tears will be shed.
D

 

[Skye]

Hi Bubble

you were asking about vascular dementia. There is an Alzheimer's Society factsheet on the subject:

http://www.alzheimers.org.uk/factsheet/402

Don't worry about the fact that everything seems to be about AD, it's just that that's the most common form of dementia, so it's a label many people use even when it's inaccurate.

In fact there are many members of the forum who are caring for someone with VAD.

 

[bubble26]

Thank you for the information - its the best I have had. Mum has small vessel disease. She is seeing things, paces, confused but we are lucky she has kept her sense of humour and although she is 80 she acts about 70 and looks it!! Thanks for your kind trouble in sending me the information.
D

 

[terry999]

know the problem well - my mum who lived in central london got lost 11 times in about 3 months. Her record was making it out of London to Essex some 40 miles away.

In this period I was there everyday from 12 to dark. Sometimes she would give me the slip or leave before I got there.

Everyday we would cross london by several buses to get to the chruch she liked. She wouldn't take going to a local one so I took her everyday.

I got a medialert braclet for her - so when she was found by police/hospital etc they would ring me. VERY useful as she couldn't tell them where she lived.

I wanted to get her a GPS tracker, some are excellent you can even set a boundary around her home so it will only alert you if she goes out of that boundary. However these trackers couldn't be worn and mum would change bags/coats daily. They is a wristwatch one available in the states.

But a cheaper solution is if you have a spare mobile - you could register this for a tracking service like parents do for kids and see how you get on.

Mum after some embarrasing incidents on the buses, stopped wanting to go far. For the last few months at home she would spend teh whole day walking around the block. I decided on care-home when this went on even after I left e.g. 9pm as she would leave front door open..

She is now at a care home and wanders all day long up and down corridors.

My view is mum knows she is not well and rather like me when worried will pace up and down cos it makes you feel better.

 

[bubble26]

Hi Terry, thanks - I have just got back from the hospital and explained about the new place she could live. I asked her blatantly do you want to live on your own and was really suprised when she said no. I repeated this this a few times during our couple of hours and everytime the answer was the same. How long did it take for your Mum to settle? Nurses advised us to take a lot of her own stuff to the new place to make her feel secure. Next step this week is social workers and making sure they understand that she needs safety not more technology.
D

 

[Margaret W]

Hi Bubble and everyone else.

First, I don't think it matters what kind of dementia your parent has, the symptoms are more or less the same. Wandering, confusions, forgetfulness, agression, depression, you name it, they are all in the package.

My mum was diagnosed with Alheimers 15 months ago, and has been in a care home since then. The problem was highlighted when she was found on the street in the middle of the night, not a clue what she was doing, and denied being there. No mention was made to us of pressure pads, or door locks, these are all new ideas to me, and might have meant mum could stay at home, but the only suggestion then was hospital for six weeks assessment at the end of which we were told she needed 24-hour supervision. The choice was at home with us or in a care home. Nothing else was mentioned.

We didn't want her at home with us (shock horror, I know some might say) so it was the care home.

How long did it take her to settle? Well, we were advised on a month. The month passed, then 3 months, 6 months and year, and she was still not "settled" or happy. She has been there for 15 months and now seems happy to be there. So the answer is that n our experience it has taken 15 months for her to settle.

The care home is having difficulty in managing her. we have requested a psychiatric assessment, but are told that this time of year is very busy as when the clocks change a lot of people also change????

If the assessment is that she needs an EMI unit (and I suspect it will), there are none in our area, we are looking at 30-50 miles away at least. And another 15 months of distress for her to settle.

So much for good government.

Can we do anything about this terrible lack of facilities? And mum is self-funding, so will have to pay the lot. An EMI unit costs about £1,000 a week, so her money will be gone in a year. Who pays after that? Given the current experience, she won't have even settled there in a year. Do we keep shunting the poor lady around the country to cheaper and cheaper homes for dogs, or do I reconcile myself to that fact that I will have to sell my own house to pay for about 4 years in a care home, and when me and hubby come to that state ourselves there will be no money for us.

I think I am moving us all to Switzerland where we can just bump ourselves off. Seems a darn sight more enjoyable that the prospects in the UK.

Margaret

 

[BeckyJan]

An EMI unit costs about £1,000 a week, so her money will be gone in a year. Who pays after that?

I think folk who are worried about funding should check the details with Soc.Services. When capital is reduced to around £19,000 (not sure what current figure is) Social Services will assist with funding, and when it is reduced to ? £13,500 then Social Services will take on the full cost*.

Margaret you should have no need to worry about who picks up the bill when your Mum's money runs out. *The only 'top up' required is if you choose a home which charges above the SS limit. I am fairly sure that the EMI homes in Glossop and Bakewell (not 50 miles away) do not charge £1,000 per week.

I hope this helps.

Best wishes Jan

 

[terry999]

How long did it take for your Mum to settle?
D

Hi Bubbles, I'm not sure mum has settled yet and its been 2 months. Signs are good now though (I hope!!). My mum didn't want to go there so different from your situation.

Bringing stuff from home is a good idea.

I really recommend making a document explaining your mum's condition - what she likes, dislikes, medical history and family history etc. Make it SHORT and CONCISE - so a busy carer can quickly scan it for info. It can be simple things - like my mum will not wear stockings even if freezing, so a carer trying to put tights on her will make her v.moody but she wouldn't be able to tell them she doesn't like stockings. When she starts calling for say David the staff know thats her brother.

Check the care homes out, I choose the current one partly becuase it has very long corridors that she can wander on. The one I discounted had v.short corridors so she would be like a caged animal.

Good luck.

 

[terry999]

PS. I saw an EMI unit and they charged £1100 p.week. That was in central London.

I found it usefull to get to know the other residents as well; makes it a more normal situation not like a hospital visit. Also other residents then keep an eye out for each other.

Gotta say do find it funny when I find mum talking to the 3 other patients with Alzheimers. The conversation doesn't make any sense, but makes me happy. Mum could talk for hours.