Mum going outside! Help!

Discussion in 'I care for a person with dementia' started by Maldives13, Feb 3, 2015.

  1. Maldives13

    Maldives13 Registered User

    Feb 4, 2014
    Hi everyone. I haven't posted for a while. To be honest I'm struggling to cope. Mum lives on her own with 3 Carer visits a day. My sisters and I support her the rest of the time but not overnight. Mum doesn't want to go in to a home and we are desperately trying to find ways to support her decision. However she went outside early this morning (snowing!). No coat or gloves! Door alarm people rang me and I went round to find her outside. This is not the first time. Sometimes she "wants to go home". Today she was hungry and needed to get food in for the other people that come in! I think she meant the carers as she lives on her own.
    Mum is not self funding. Do social services help fund overnight care does anyone know. I'm just a mess of worry at the minute and don't know what to do.
  2. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    I don't know the ins and outs of the SS there but I would think you would start asking questions there.

    I appreciate that you are trying to keep your mother at home as she wishes, but I also think you and your sisters should have a discussion about all the possibilities. Nobody wants to go into care but sometimes that's the best option.

    This "going home" - my mother used to say this. I asked her where home was and the address she gave me was the house she lived in with my grandparents. She hadn't lived there since the early '50s. I fee "home" is a place where they think they'll be safe and will know and recognize everything and everyone. It's sad, but it's so common.
  3. sinkhole

    sinkhole Registered User

    Jan 28, 2015
    Does she ever go out at all on her own? If not, it might be time to deadlock the door when she is inside on her own so she can't physically get out.

    I'm only thinking aloud here and I don't know if this has repercussions in terms of her becoming distressed because she couldn't open the door, but recently I've been thinking how I would handle the situation if my aunt had a sudden decline and started wandering.

    At the moment, although she walks (shuffles) very slowly and has difficulty climbing steps and maintaining balance, she is determined to carry on going on the bus 4 or 5 times a week to go shopping and visit my mum. Last week, she lost her Santander debit card at some point before arriving at mum's and when I got there she was determined to go up to the high street and sort out a replacement with Nationwide, despite us both trying to explain that Nationwide and Santander are different.

    I was concerned she would just end up wandering aimlessly around the high street and get lost, but she would not be talked out of going up there and began to get quite agitated when we tried to distract her and convince her to stay in the house so I could sort it all out for her on the phone.

    In the end, I had to let her go otherwise I think she would have become aggressive with us and more distressed. I ended up following her to make sure she was OK and watched her go to Nationwide, Nat West and Barclays (she doesn't have an account with any of them) and then back to Nationwide, where I 'bumped into her' and convinced her to come back home with me.

    It was one of the few times I've felt really unsure what was the best course of action to take but if she starts to become a real danger to herself I think I'll have no option but to lock the front door and stop her from leaving. I'd probably then have to try some sort of subterfuge such as "oh dear, the lock's broken", or "the door's stuck, it does that when it's cold" and hope she doesn't realise what we've done.

    My aunt won't consider care or help at the moment, so this wouldn't be an easy step to take by any means but ultimately I feel it's best to do whatever is required to keep someone safe at that particular time and deal with the fall out later.
  4. min88cat

    min88cat Registered User

    Apr 6, 2010
    Hi there.

    We had a similar problem with MIL. She didn't venture outside, but continually fell, as she had forgotten that she couldn't walk. The maximum care we were allowed with SS was 4 double handed carer visits four times per day- nothing during the night. Whilst she didn't attempt to walk it was ok, but when she forgot she couldn't walk, it was a Nightmare. She too was looking for home with her Mum and Dad. In the end a home was the only option for her own safety and our peace of mind.
  5. marionq

    marionq Registered User

    Apr 24, 2013
    This is all very familiar to me as my husband is a wanderer if I am not very careful. It is a compulsion and if a person is living alone there will be no stopping them and I would think the time has come to think of a care home.

    I am able to distract and divert my husband as well as help from meds which are working at present. It all takes its toll though. My husband forgets completely but I get stressed and exhausted. Today he agreed eagerly with a support worker who had come about a walking aid that he must be careful as he could fall so not to go out alone.. Come tonight he will be agitating about getting out..... To where? ........anywhere!
  6. Maldives13

    Maldives13 Registered User

    Feb 4, 2014
    I don't understand about my mum as she never goes out on her own. One of us has taken her out for years. She struggles to walk but all of a sudden it's like she can walk ! Really scared to be honest.
    I think it would freak her out if she couldn't open the door. It's bad enough now when the alarm people tell her to shut the door. She just gets her mind set I think. I would love for her to go in a home but I know that is not her. I'm just so distressed at the moment - loving her so much and being so worried about her as well.
    I hate this illness. So very sad today.
    Thanks so much for replying as I just keep crying today
  7. pippop1

    pippop1 Registered User

    Apr 8, 2013
    I would be concerned about fire if a person was locked in on their own.

    One of the questions the SW asked my MIL when she was assessing her (and MIL expressed the wish not to go into a CH) was

    "What would you do if there was an emergency" - MIL said she would phone "someone". She wasn't able to give the SW the 999 number nor did she ask what kind of emergency the SW was talking about. In other words she was unable to keep herself safe overnight. She was also unable to operate a wearable alarm system as she didn't understand it.
  8. sistermillicent

    sistermillicent Registered User

    Jan 30, 2009
    The trouble is nobody wants to go into a home. I may well be telling my children now to put me in a home with no regrets if I get to the stage your mum is at, but I don't want to go, I will most likely hate it and I dread it.

    My mum goes into a home for respite, when I first visited her in there I thought she didn't fit in, everyone else was not like her, they all belonged there and she didn't.

    Wrong. None of them belonged there. But they were all safe and looked after.
    Mum too.

    I hope you find a solution that you are happy with, but believe me, the care home option, if you find one where the staff are kind and caring, is not a bad one.
    Around here the nursing agencies, for a trained nurse, are charging over £300 per night so a carer must be a bit more than half that I would think, it's no cheap option for SS.
  9. HelenInBC

    HelenInBC Registered User

    Mar 23, 2013
    When we started to worry about my mom wandering (she was going out to the lobby of her building during the night, thinking it was daytime) we had to start having overnight care. At first, we hired carers who stayed all the time, then my daughter moved in. We put alarms on the exit doors that chimed when the door was opened. It worked well for us, but there was no getting around the fact that she couldn't be left alone any longer.

    I would never lock a person inside with a deadbolt. This would prevent them getting out in case of an emergency. Too dangerous.
  10. Tin

    Tin Registered User

    May 18, 2014
    My mum has the wandering bug, its stressful and worrying and she lives with me. Its now mainly during the day and goes to and from the garden gate. occasionally she tries to get out late at night, but front door is double locked, this does not stop her looking for another way out even climbing through a window. The alternative to going through the front door is far more dangerous. We have taken late night drives in the car to try and ease all this, does not always work, she is determined to get to work at 2am and next day she has no memory of her night time activities.
  11. Maldives13

    Maldives13 Registered User

    Feb 4, 2014
    Hi everyone.
    Thank you all for taking time to reply. It's sad that wandering sadly seems to be part of the illness. Social services have told me they do not find overnight care. She has also said unless Mums wanderings become more regular she will not consider a care home. She feels Mum is "safe" in her own way and on her own environment! Nothing to do with funding I'm sure!!!
    Mum doesn't want to go in a care home anyway but I'm getting so tired with early morning calls. She rings me at 4 in the morning thinking its day time. I wouldn't stop her as at least I can persuade her to go back to bed over the phone. I love her so much it is breaking my heart to see her like this.
    How do we all cope? Some days I can't! Some days I want to just go off and come back when Mum is better! Alas that will never be will it?
    Thanks folks
  12. Bod

    Bod Registered User

    Aug 30, 2013
    There comes a time, when you got to do, what you got to do, come what may.
    Your time is now very close.
    Keep a diary of the wanderings, (including how far she goes)talk to neighbours, inform the Police, if they get involved, get an incident number.
    Add all the little things together, get the full picture, as it gets worse, then you have the evidence to use.

  13. curtainsgalore

    curtainsgalore Registered User

    Nov 2, 2014
    Like Bod says "there comes a time" Only last week Mums time came. After wandering 4 days in a row and perfect strangers trying to find where she lived, last Friday the police and helicopter were sent out searching for her. Finding her 3.5 hours later, no coat freezing cold, dark, lost and totally disoriented. With minutes of being home she had no recollection of her ordeal.
    Because of this SS moved in 24 hour carers to stay with Mum until Monday until a care home could be sorted. This happened on Tuesday and Mum moved in. The worst day of my life. But good care and support are being given at the CH and Mum doesn't realise it is a CH.
    I had been using the motion sensors around the house by Just Checking, these did give me peace of mind until Mum started wandering. A great indication that the disease is changing.

    Sent from my iPad using Talking Point
  14. Maldives13

    Maldives13 Registered User

    Feb 4, 2014
    Thanks bod and curtainsgalore . Guess I don't want to face it really. Going to look at care homes this week to maybe prepare ourselves but struggling with it all really.
    Not heard of the just checking? What is that? I will google and see if I can find it.
    Mum at the minute is only going round the side of the house and back to the front again! Who knows?

    Thanks again all of you
  15. Solihull

    Solihull Registered User

    Oct 2, 2014
    West Midlands
    Hi Maldives13, no one actually wants to go in to care but there does come a time when I honestly think it almost becomes"cruel" to leave a loved one to struggle on in confusion. My mum did not wander but I had the phone calls in the middle of the night asking when she was being picked up to "go home" and she was sitting in the house she had lived in for 55 years. She then forgot to eat, drink,wash etc and ended up in hospital where we decided it was "time". Six months on, in a lovely care home (not the most expensive) after years of her telling me she would NEVER go into a home, she is now telling me how nice the people are,has put on over a stone and is never lonely. I think you need to take the next step, try SS by asking for a week respite to see how she gets on and if you are not self funding they should help if you say you nor she can go on like this.
    Good luck.
  16. Maldives13

    Maldives13 Registered User

    Feb 4, 2014
    Hi Sue. Thank you - that sounds so encouraging. She isn't self funding and when we asked about respite they wouldn't fund that. Said she doesn't have anyone with her at night so they wouldn't fund it. I'm going to look at care homes this week and I may well think about respite. I am sure once she was in a home she would be ok. So hard isn't it? Even today - spent all day with mum. I don't mind that. Still had to "take her home" this afternoon before I left!
    Thanks Sue for the comforting words
  17. cerridwen

    cerridwen Registered User

    Dec 29, 2012
    This sounds like a very upsetting situation for you and your family. I guess I won't be far behind you in this situation.
    My Dad lives alone with a SS care package of three visits a day. We live in Gloucestershire, a county that has so many elderly people with dementia that the NHS have created a Community Dementia Nurse post. Because my Dad has been having some difficulties, his CDN is seeing him every six weeks or so. Sorry...rambling a bit.....what I meant to say was that Dad's CDN told me a while back that when Dad starts wandering out on his own (particularly with no coat or appropriate outdoor wear) that's the time to consider residential care and that he would then make a referral to SS for rehabilitation, if we decided it was the best thing. Dad would not have to agree to it, which would upset me if he didn't want to go, because he is classed as a vulnerable adult. Difficult decisions to be made but I was advised to put Dads safety and wellbeing at the centre of any decision. That makes it a bit easier to see the wood for the trees.
    Please discuss with SS, they have a duty of care to keep vulnerable adults safe. However, The family, unfortunately, hold all the cards. Dads GP said it may come to the point when I have to refuse to do anything for Dad in order to get SS to act (my Dad isn't self funding either). W really shouldn't be put in this position, but we are, and that's that.
  18. Maldives13

    Maldives13 Registered User

    Feb 4, 2014
    Hi Jayne
    My mum has 3 carers as well at the moment. I think the family thing is an important issue. I know my Mum would deteriorate rapidly if it wasn't for the support we give as well as the carers. It's horrible isn't it that we are forced to stop that in order for social services to see how vulnerable they are.
    I keep thinking about overnight care would be a great option for her but they don't find that at all so that's a non starter. Well fingers crossed when we look at the care homes - sure they are going to be lovely. I just have a dream that she will be happy in one when we get to that point!!!
  19. Solihull

    Solihull Registered User

    Oct 2, 2014
    West Midlands
    Maldives13, please let us all know how you get on, I remember too well the feelings of helplessness. You will find plenty of backup on here to get you through this. I only wish I had found this group before I got mum settled.
  20. Maldives13

    Maldives13 Registered User

    Feb 4, 2014
    Hi Sue. Thank you. I can't tell you how welcome your message was about letting you know. I feel so alone sometimes and know I'm struggling. I have always got great comfort from reading all the posts and asking things , knowing you all care. But I'm a little overwhelmed and a bit teary so from the bottom of my heart - thank you for caring. You are right it is the helplessness feeling. Just awful.

    Take care
    Jane x

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