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    • scaredofdebt
    • By scaredofdebt 8th May 18, 10:25 AM
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    scaredofdebt
    Alzheimer's and "Wandering"
    • #1
    • 8th May 18, 10:25 AM
    Alzheimer's and "Wandering" 8th May 18 at 10:25 AM
    Just wanting some advice, sorry if this is a long-winded post.

    My motherin law (92 years old) was diagnised with Alzheimer's 4-5 years ago and we moved in with her to look after her, she has stated on several occasions that she doesn't want to go into a home. The move was precipitated after she had a fall and broke her hip, she was left on the bathroom floor for 3 days so we knew we had to move in, having previously lived 20 miles away.

    This arrangement has worked fairly well until recently when she has started "wandering". We live in a very quiet village and she will go for a walk when the weather is good, usually during the afternoon. She walks down the village and back again, stopping to talk to anyone who she encounters. Despite her Alzheimer's and age, she is pretty fit and can walk about half a mile without any issues.

    A couple of the neighbours have raised concerns about allowing a vulnerable woman out on her own.

    1. Should we stop her leaving the house? I expect not, the roads are quiet and she still has some road sense. She enjoys walking.

    2. Should we never leave her alone? This isn't really practical for us.

    I work full time and my wife part-time, so mum is not often left alone for any period of time, but yesterday we went to the coast and so were away for about 6 hours.

    We are going to be getting in touch with social services for some advice and also getting a tracking device so we can keep an eye on where she is going.

    We have booked a holiday abroad and will be getting carers in twice a day to keep an eye on her, mainly to make sure she is eating and drinking, do you think we should cancel the holiday?

    Thanks for any help.
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Page 2
    • Primrose
    • By Primrose 8th May 18, 8:53 PM
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    Primrose
    I think you should go on holiday and not cancel your plans. Caring for somebody 24/7 is stressful and you need a break.


    Certainly get a tracker - I don't know if there are any wrist ones which can be worn all the time, and get her used to wearing it.


    It's probably doing her good to go for her little walks. Hopefully if she sticks to the same route it will help to reinforce her memory although there's no guarantee that this will happen. She could suddenly deteriorate quickly. Going into a respite home while you're away might relieve your concerns but my experience with somebody suffering from dementia/alkzeimers is that the moment you put them in an unfamiliar situation they can become very stressed and confused, not understand or forget why they're there and go downhill very quickly as a result.


    Are there any relatives who could stay in the house while you're on holiday?
    • margaretclare
    • By margaretclare 9th May 18, 3:14 AM
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    margaretclare
    I think you should go on holiday and not cancel your plans. Caring for somebody 24/7 is stressful and you need a break.


    Certainly get a tracker - I don't know if there are any wrist ones which can be worn all the time, and get her used to wearing it.


    It's probably doing her good to go for her little walks. Hopefully if she sticks to the same route it will help to reinforce her memory although there's no guarantee that this will happen. She could suddenly deteriorate quickly. Going into a respite home while you're away might relieve your concerns but my experience with somebody suffering from dementia/alkzeimers is that the moment you put them in an unfamiliar situation they can become very stressed and confused, not understand or forget why they're there and go downhill very quickly as a result.


    Are there any relatives who could stay in the house while you're on holiday?
    Originally posted by Primrose
    It's the tragedy of this disease, that this is how it works. The most recent memories are the first ones to go. When we move to somewhere strange we have to learn a lot of things all over again. Where the door is, where the bathroom is, and so on. Memories of the walks you've been taking for 40 years will remain longest, and she won't understand why she can't take those walks any longer.
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    Before I found wisdom, I became old.
    • Primrose
    • By Primrose 9th May 18, 6:39 AM
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    Primrose
    Margaret Clare is right about losing the most recent memories first. When my dad had dementia and had to go into a care home, we had him out to our place for lunch on Christmas Day. He couldn't ever remember going there before despite having visited there for 20 years. Yet when we showed him a lot of photographs of his youth some 70 years earlier, he remembered all the people in them and said "Oh yes, that's John Brown and we went to So & So school together when I was 10."

    So try and keep her in familiar surroundings as long as you can. But if her dementia gets worse, also be prepared for unexpected changes in personality and temperament, with suddenly fits of anger or rage if the slightest thing goes wrong or she's confronted with a situation which suddenly takes her out of her comfort zone.


    One thing to try is introducing regular conversations about things and circumstances which reinforce the present day. They may not last long in her memory but continually mentioning them may help her keep a grip on those tenuous circumstances which represent "the present" for he as conditions become more hazy..
    • izoomzoom
    • By izoomzoom 9th May 18, 2:45 PM
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    izoomzoom
    Sorry, I can't read all the comments now, but my Mom has Alzhiemers and lives with us FT.

    She loves to go for walks and frequently got lost, and we had lots of police involvement. We found tractive.com which is actually a pet tracker, but she wears it around her neck and it beeps on my phone when she has gone out the safe zone, and then I track her, and rescue her when needed. However, if I'm out for more than 40 minutes, I lock her in, because (my ***) she can walk far.

    I'm going to have to put her in respite care when we go on holiday, because even with carers in 4x a day, I don't want her at home on her own for that length of time. She has soiling issues, forgets food / drinks in seconds and it would be lonely. I wouldn't be able to let her go out.

    Hope you can find a solution.
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    • DigForVictory
    • By DigForVictory 9th May 18, 3:18 PM
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    DigForVictory
    We had a wandering lady on our street. Everyone knew her, everyone coped. Until she got uncertain as to which houses she was OK to go into, & my word, a lot of people came home to find an elderly lady sat watching their TV & quite entranced by it, for months before it became a bit more disconcerting.
    It was when folk came home headed for the loo & found her sat there blinking somewhat that the collective limit seemed to be reached.

    I think you are doing a wonderful job OP, and I hope technology reassures you & that the village works with you too! As when our lady had to go away, she wasn't away for long & then we had her increasingly alcoholic widower husband to keep an eye on as he wheezed up the hill after closing time.

    It was all done with loving good intentions stressed to near breaking point but us children were in no doubt that the carehome had done what the winter colds had failed to.

    Do please try a carehome as respite - it can be a blessing for you all to know she's safe & entertained & fed & clean etc, and if it has to go on a bit longer than a week, then at least she's not in a completely strange environment.
    • Jojo the Tightfisted
    • By Jojo the Tightfisted 9th May 18, 7:43 PM
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    Jojo the Tightfisted
    I think that when somebody has the need to be outside and walk, to prevent them from doing so would be akin to putting them in a cage and they would deteriorate more from the frustration, the feeling of being trapped and lack of exercise/inability to deal with excess energy or anxiety from their condition. In addition, whilst they may not be entirely clear about what is happening right now or in the near past, they may remember from childhood all the different bird songs, trees, wildflowers and scents and the sensations of being out in the fresh air and seeing greenery and a big sky - to me, the idea of being confined indoors, away from all of that, the excitement (yes, I still feel it) everytime I spot a particular type of caterpillar, a hedgehog or track a badger has taken, would feel like a punishment and I wouldn't be able to understand why something that made me happy wasn't allowed anymore.

    I think trackers are a wonderful idea - but is it possible that, in addition to this, you could both make a point of going for a walk with her each day and evening? She could potentially talk to you about the things that are important to her on the walk, some old memories could surface that you never knew about before, even some old rhymes or songs, such as 'Bishy bishy barnabee/tell me who my lover be' for ladybirds, or 'Who's be them pigs?' (a children's song about wandering livestock) could come back to her. I'd even think about recording her speaking.


    I'm pretty sure that, no matter how disoriented I might get, the things I will remember longest will be the things I have loved since I was little - which would all involve being in a rural setting, not indoors in front of the telly. You could even take photos of the things she likes, which she might enjoy seeing and talking about in the future, even if she can't remember the day itself - or who this lovely couple is that comes to see her - I'd also include pictures/film of the night sky and dawn/dusk, as residential places tend to be fully lit all the time with artificial light - so she might never see the stars again otherwise.
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    • elsien
    • By elsien 9th May 18, 7:52 PM
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    elsien
    As well as the emergency plan for if things go pear shaped while you're away, if mum is rarely on her own then I do think you need to consider the emotional impact on her of you being away for a week.
    Knowing you're away for a few hours is very different to knowing she's on her own bar several short calls a day, for a week.
    I'm not saying you shouldn't go, you probably need the break. But what if she gets over anxious about being alone/things going wrong? People with dementia can be very good at hiding their deficits in familiar places/routines but it doesn't take much to throw them.

    When are you going, and do you have time to do a trial couple of days away first to see how it goes?

    Also consider something like this, just in case. You could add the emergency contact details.
    http://www.lions105sw.org.uk/district-projects/message-in-a-bottle/
    Last edited by elsien; 09-05-2018 at 7:56 PM.
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    • margaretclare
    • By margaretclare 10th May 18, 9:49 AM
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    margaretclare
    I think that when somebody has the need to be outside and walk, to prevent them from doing so would be akin to putting them in a cage and they would deteriorate more from the frustration, the feeling of being trapped and lack of exercise/inability to deal with excess energy or anxiety from their condition. In addition, whilst they may not be entirely clear about what is happening right now or in the near past, they may remember from childhood all the different bird songs, trees, wildflowers and scents and the sensations of being out in the fresh air and seeing greenery and a big sky - to me, the idea of being confined indoors, away from all of that, the excitement (yes, I still feel it) everytime I spot a particular type of caterpillar, a hedgehog or track a badger has taken, would feel like a punishment and I wouldn't be able to understand why something that made me happy wasn't allowed anymore.

    I think trackers are a wonderful idea - but is it possible that, in addition to this, you could both make a point of going for a walk with her each day and evening? She could potentially talk to you about the things that are important to her on the walk, some old memories could surface that you never knew about before, even some old rhymes or songs, such as 'Bishy bishy barnabee/tell me who my lover be' for ladybirds, or 'Who's be them pigs?' (a children's song about wandering livestock) could come back to her. I'd even think about recording her speaking.


    I'm pretty sure that, no matter how disoriented I might get, the things I will remember longest will be the things I have loved since I was little - which would all involve being in a rural setting, not indoors in front of the telly. You could even take photos of the things she likes, which she might enjoy seeing and talking about in the future, even if she can't remember the day itself - or who this lovely couple is that comes to see her - I'd also include pictures/film of the night sky and dawn/dusk, as residential places tend to be fully lit all the time with artificial light - so she might never see the stars again otherwise.
    Originally posted by Jojo the Tightfisted
    I absolutely could not agree more with this. Yes, it would be like a punishment. Being in a new and strange environment, different people, who they all are - staff or fellow-residents - set meal-times etc - a person with advanced Alzheimer's would not be able to cope with it. I've just been reading about the diagnosis given to Barbara Windsor and her husband. The minute they came out of the office Dame Barbara had forgotten what had been said, or so we're told.
    r ic wisdom funde, r wear ic eald.
    Before I found wisdom, I became old.
    • Mojisola
    • By Mojisola 10th May 18, 10:47 AM
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    Mojisola
    Being in a new and strange environment, different people, who they all are - staff or fellow-residents - set meal-times etc - a person with advanced Alzheimer's would not be able to cope with it.

    I've just been reading about the diagnosis given to Barbara Windsor and her husband. The minute they came out of the office Dame Barbara had forgotten what had been said, or so we're told.
    Originally posted by margaretclare
    Unfortunately, by the time a person needs the 24/7 care that a home provides, they often are at an advanced stage but there isn't really any alternative.

    I had this same kind of experience with doctors with my Mum - she'd sit in the appointment concentrating on what they were saying and nodding agreement and looking quite 'with it'. By the time we were out in the car she's be saying "Who did we come to see today? What was it about? What did they say?"
    • margaretclare
    • By margaretclare 10th May 18, 11:01 AM
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    margaretclare
    Unfortunately, by the time a person needs the 24/7 care that a home provides, they often are at an advanced stage but there isn't really any alternative.

    I had this same kind of experience with doctors with my Mum - she'd sit in the appointment concentrating on what they were saying and nodding agreement and looking quite 'with it'. By the time we were out in the car she's be saying "Who did we come to see today? What was it about? What did they say?"
    Originally posted by Mojisola
    It really is a tragic and cruel disease, and little-understood. When I was a student nurse 1957-60 I never even heard it mentioned, although Alois Alzheimer described it in the early years of the 20th century. There seems to be no way of determining who will/who won't develop it. OK, in the older age-groups, but that's not the only criterion. The man who went to Switzerland to die this week was 100+ but was pin-sharp mentally.
    r ic wisdom funde, r wear ic eald.
    Before I found wisdom, I became old.
    • scaredofdebt
    • By scaredofdebt 14th May 18, 1:55 PM
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    scaredofdebt
    Thanks for the comments everyone.

    So, we've ordered the tracker, should be with us within the week.

    My wife is speaking to the neighbours, to see if they will visit mum on a rota system while we are away, so she will see one person per day for a chat.

    Most of the neighbours have known her for years so we are hoping for a good response

    Carers will be visiting 3 times a day.
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    • Judi
    • By Judi 14th May 18, 2:10 PM
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    Judi
    Think i was only 7 when my Grandad died (im now mid 50s) but i can clearly remember him showing classic signs (i now know) of dementia.

    In those days it wasnt considered a medical condition it was just accepted. My grandad was very verbal with it and quite aggressive in his manner.

    Mother died of it too. She was aggressive too not to me, to the carers and my brother.
    Last edited by Judi; 14-05-2018 at 2:12 PM.
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    • Silvertabby
    • By Silvertabby 14th May 18, 2:28 PM
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    Silvertabby
    Think i was only 7 when my Grandad died (im now mid 50s) but i can clearly remember him showing classic signs (i now know) of dementia.

    In those days it wasnt considered a medical condition it was just accepted. My grandad was very verbal with it and quite aggressive in his manner.

    Mother died of it too. She was aggressive too not to me, to the carers and my brother.
    Originally posted by Judi
    It used to be called 'gone do-lally' where I came from.
    • pollypenny
    • By pollypenny 14th May 18, 2:38 PM
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    pollypenny
    What about contacting the Alzheimer!!!8217;s Society and asking about Dementia Friends?

    I have just completed my volunteer training. Taking sufferers for walks or for a coffee are popular activities.
    Last edited by pollypenny; 14-05-2018 at 2:57 PM. Reason: Grammar!
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    • Hillwalker11
    • By Hillwalker11 14th May 18, 4:29 PM
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    Hillwalker11
    Go on your holiday. A well deserved break will help you to cope when you return. It is a very difficult situation but try not to put your life on hold. My FIL went into respite care one year when we were away. He was fine apart from one night going to the kitchen and emptying the pantry by throwing everything out of the window.
    A good few years ago one of our neighbours had Alzheimer's and he used to walk miles, often being brought home by the police. On one of his wanderings he ended up on a carnival float in a village 6 miles away, another time he ended up at a wedding reception in Milton Keynes,........we live in Essex over 80 miles away!. The wedding party were wonderful and let him stay until his relatives picked him up. Although amusing this man was a very high flying aeronautical engineer who built his own plane on retirement. A very cruel disease.
    • Elinore
    • By Elinore 15th May 18, 6:02 AM
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    Elinore
    We had a letter popped through the door the day after we moved in to our old house.

    It was a lovely sweet letter asking us not to be concerned at a local wandering lady. It told us all about her interesting life, conversation topics, gave numbers to call and names of local people to pop in and see to verify that she was happy and well looked after. It was respectful, sweet and well thought out.

    As it was she never came by - but we were prepped if she did.
    • poppy10
    • By poppy10 16th May 18, 6:23 PM
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    poppy10
    As well as the tracker, get her registered on your local police force's Herbert Protocol.
    This way if she does go missing, police will already have her details and photo etc and it will speed up the process if they need to search for her.
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