1. seanma

    seanma Registered User

    Jun 19, 2007
    2
    We as a family are desperate for help. Both our parents have Alzheimers and are now living together in a care home in Northern Ireland. Both are 83 years old. Our father is more relaxed and quieter but our mother, who was always a very active person, now says non stop "take me home" "take me home". Like my father, her vocabulary and ability to form a complete sentence is extremely limited. When we leave her at night in bed and listen to her outside the room, alone, she continues to say"take me home" . She has no longer any idea about where or what home is. These words are non stop,"take me home, take me home, take me home". It has just got worse over the period of her illness. She now appears to be in constant distress. She recognises all her children we arrive to see her in the care home, her arms are out to receive us, her eyes dance in her head with happiness for just a moment, then she starts"take me home".

    We love her dearly, as I write this, I am fighting back the tears for her.

    Is this common? How can we relax her without drugging her? Has anyone ever had this experience or anything similar. We are afraid thatshe is appears at times so stressed that it may provoke a stroke or something similar.
     
  2. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Dear Seanma

    I'm so sorry you're having this problem. I can understand how distressing it is for you.

    Unfortunately this wanting to go home seems to be a very common feature of AD, and applies to sufferers whether or not they are in a NH. The 'home' they want is often not the home they have been living in, rather it is some time in the past, possibly in childhood, when they felt happy and secure. Taking them 'home' does not solve the problem.

    I''ve no experience of drug treatments, but there are other members who have, and will be able to advise you.

    On the positive side, your mum seems to recognise you, and be happy to see you. Hang on to this, and just try to give her as much reassurance as you can.

    I'm glad you've found TP, I'm sure others will be along soon who have more experience of your problems.

    Love,
     
  3. mary clare

    mary clare Registered User

    Jun 19, 2007
    3
    Hi Everyone

    I am mary and i am Sean's sister. I echo sean's words and i am becoming more and more distressed when i visit mum and dad. Dad is an angel just so lovely to visit and has a spark of his old sense of humour, whereas mum is always in a state of agitation. I have never hated 3 words more than "take me home". They just do not stop coming and in all honesty she is worn out. I sit and try to soothe her and talk calmly about things to try and distract her but these words are all she says. I am at the point of pleading with her to stop saying these words and she will deny she is saying them and off she goes again. She is on a calming tablet 3 times a day. I think the specialist just does not know what to do for her anymore, her doctor it seems has also given up or so it appears.

    We have joined in the hope that someone out there has had a similar experience and may be able to give us advice. It seems she has stuck at this stage for months and months whereas others in the care home seemed to have moved from one stage to the next with ease.
    We know we will never get mum back as we knew her but so want her to find some sort of peace in the time she has left.

    Any help of advice will be appreciated.


    Mary
     
  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Hi Sean and Mary

    Of course this is not an unusual situation, unfortunately.

    Your mum is in a state of distress - how does that manifest itself? Is she crying - or what?

    The reason I ask is that people in such situations often repeat similar words as a sort of mantra. Yes they will try to reach out to others while saying the words, and they will try to persuade people to take them home, or to a bus stop or something.

    When people at my Jan's home want to return home, I usually simply tell them the weather is too bad, or the last bus has gone, or something. But I am not their family, of course!

    However, distraction might be something to try.

    I'd also be rattling the cage of the doctor/consultant and making sure they keep on the case. Medication may sort it and while none of us likes to think of loved ones being given stuff to keep them quiet - if it is to make them less agitated and there is no other way, I believe it is justified.

    What do the care home staff say? After you have left, does Mum still keep saying the words? What do they think can best be done?

    It is a nightmare, I know. Just take things a step at a time......
     
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Hi Sean and Mary Clare - welcome to TP

    I echo what Hazel has said: "take me home" is as much a plea to feel safe as an actual request. It may now even be simply a repetative phrase with no real meaning behind it. Unfortunately, because it is what is is, I'm sure that every time she says it the emotional reactions that you have are difficult to control - it must sound like an accusation every time she says it, even if you knew intellectually that a) this isn't a request you can act on and b) it may not even BE a request. I'm afraid that some people wuth dementia do get in a loop with a particular phrase: in many ways, at least for your peace of mind, it would be better if that phrase were gibberish. It may be that it IS gibberish, at least as far as she understands it. I mean if she were saying, for example, "take me a rabbit" you wouldn't, I don't think, be nearly as upset about it. So is there any way you can think of it in the same way? I really don't think you'll have any success in persuading her not to say it, because I suspect that she doesn't really know she IS saying it. All you can control (maybe) is your reactions to it, to try to think of it as "white noise"

    It does sound as this is another manifestation of the acute restlessness that can affect dementia sufferers: some of them pace uncontrollably as well.

    It may be that the "calming" (tranquilizer?) tablets are not effective for her. I think you're going to have to ask (and be pushy about it) if they could give her a trial of some other form of medication. Do you know what these calming tablets are? If they are something like valium, people do build up a tolerance to them. Following a grand mal seizure my mother became incredibly tearful (not at all her normal state of mind). Anti-anxiety meds (citalopram) really helped her, but everyone is different. However, if they haven't tried the new anti-anxiety meds (as opposed to the valium type meds) thats what I would be pushing for first.

    Best wishes

    Jennifer
     
  6. seanma

    seanma Registered User

    Jun 19, 2007
    2
    First of all Hazel, Bruce and Jennifer,thank you. We very much appreciate your replies, any advice is always well received.

    Mum does not cry now. At the very beginning, 18 months ago, when we had to put both of them into the nursing home, she cried to us, pleading with us to "take me home". But now she shows her agitation by a fear in her voice and her facial expressions and at times physically shaking with nerves. If we take her to her room she gets afraid also, we have to encourage her to come with us. Despite trying to calm her by holding her, hugging her, we try to make her feel at peace and secure but still the words continue. If we say to her, "ok, lets go home", she tells us "No", she does not want to go anywhere.

    Many of the staff at the home are local to our area, they know both our parents before the onset of the illness, they are very caring. They tell us that she says the words from when she wakes up to when we falls asleep, vertually non stop.

    We will speak to the doctor, Jennifer about the tablets you mentoin and see if we can get results.

    thanks again

    Sean
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,866
    Kent
    Dear Sean and Mary.

    My husband is still with me, but packs a suitcase nearly every night to `go home`

    This has been going on for a while.

    He began with a carrier bag, then a holdall and now it`s a suitcase. He started getting together bits and pieces, now he almost empties his wardrobe.

    I just have to let him get on with it. My only salvation is by the time he`s got the case out of the garage, taken clothes from the wardrobes and drawers, he so tired he says he will go tomorrow.

    Because your dear mother is in a NH, you are unable to see it through. I`m not presuming she has the same ideas as my husband, but I do think they both want to return to a better place than where they are now.

    All I can suggest to you is to try to placate her, even if you are not being truthful. This is very difficult for some people to do, but if you told her you would try to take her home tomorrow, or you were decorating her room for her, or even that she IS home, anything you can think of, something might make her feel better.

    I`m sorry if I`ve suggested something that offnds you, but the situation is so desperate,but I believe almost anything is justifiable if it helps them to feel better.

    Take care xx
     
  8. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    39,438
    Sean, don't forget: many doctors have an in-built resistance to prescribing something that you've found out about on the internet, and I can't say I blame them, since there may be many reasons why something might not be suitable. So low-key but determined should be your mantra. I have one doctor who considers it appropriate for patients to bring meds to his attention: his feeling is that it's an important part of taking control of your own health, but I have/had others who regard it as a masive affront to their capabilities. So rather than going in with a request for a specific drug, you might be advised to take a more concilliatory approach, as in "have you any thoughts about a different type of medication, such as an anti-anxiety drug to calm my mother?" I'm not suggesting that you WOULD go in guns blazing, but just wanted to give you a heads up. If he/she refuses point blank to consider it, then you might need to be more determined.

    Best wishes

    Jennifer
    P.S. You might want to look at this factsheet http://www.alzheimers.org.uk/Caring...a/Unusual_behaviour/advice_drugsbehaviour.htm

    Also, I should mention that while the anti-anxiety drugs listed here are all the valium type drugs I believe, many of the drugs listed under "anti-depressants" are also used to control anxiety, even if that is strictly speaking an "off-label" use (at least in Europe - citalopram is marketed in the US as an anti-anxiety med)
     
  9. CassElle

    CassElle Registered User

    Jun 7, 2005
    45
    Blackpool
    Before my Mum was given a diagnosis of AD she went through a very disturbing and traumatic stage. In addition to hallucinations and paranoia, she was constantly repeating 'I don't want to be like this - what can I do'. It was non-stop, following me around the house reiterating the phrase constantly.

    We arranged for an urgent appointment with a Psychiatrist that she had been seeing for many years (for Depression and Obsessional Behaviour). Whilst tests were arranged, he prescribed RESPIRIDONE (0.5mg x twice daily). This worked absolute wonders, without sedating her.

    Mum was subsequently diagnosed with AD and came to live with me on a permanent basis. Like many others, I have since been made aware the above medication could have side effects, i.e. Stroke and was given the option of ceasing the medication. However, after careful consideration, I felt that the benefits of the drug outweighed the possible risk.

    Mum has been taking the drug for almost four years and we have never experienced a recurrence of the initial problems mentioned in the beginning of this post.

    Obviously it is personal choice, but I considered that Mum taking the medication and being at peace was more important for her; and it also allowed me to continue caring for her at home. Had she not had the medication she would have been totally unmanagable. :)
     
  10. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    #10 Margarita, Jun 20, 2007
    Last edited: Jun 20, 2007
    Don't know if this is of any help , but when you say

    They was a very frail lady at mum emergency respite care home , mum was they 3 mouths .

    This lady was always holding someone hand , while sitting down. she would fall asleep wake up and ask am I going home? am I going home? we would rub her hand , as one day she sat next to me while I visited my mother , so I said you are home , you are home, while rubbing her hand that seem to reassure her & she just take took another nap , wake up all distress and ask angina am I going home .

    she only seem reassure for a while , but while awake she wanted to go home , unless one of us would talk to her about something ales, she made friends with an elderly man who was always holding her hand & walking around with her , that seem to make her feel safe & would not ask to go home , unless she was napping and woke up
     
  11. mary clare

    mary clare Registered User

    Jun 19, 2007
    3
    Hi everyone, firstly i wish to thank each and everyone of you for your replies.
    I spent 2 hours with mum and dad today and it was a bit better, mum was sleeping so i spent time with dad who demands little from us he is just so easy and lovely to visit.Then mum woke up and gave me the biggest smile that made my heart swell. she really was calm and did not say those awful 3 words " take me home" she was not agitated but then after a little while they started to flow again although i was able to distract her by chatting away and she wanted to chat also, in between the 3 words were said but she was really calm. It was a much happier visit. It really is 1 day at a time with this disease.

    I have spoken with the sister in the home who has agreed with me to monitor mum over the next few days and if the high level of agitation is evident we have decided to ask mum's gp for a small dosage of valium only to be given when she is in a high state of anxiety. But we know mum's doctor is reluctant to prescirbe valium as she says it is addictive! I ask you??? Mum is 83 and will never get better so an addiction at this stage in her life is pretty far down the scale in our list of worries.
    So i forsee a battle but will demand something she cannot carry on like she has been.
    I just want mum to be relaxed she is absolutely worn out.

    Thak you all so much again

    Mary
     
  12. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london


    Please to read that it was a more happier

    Sure is xx
     
  13. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Sean and Mary

    I'm glad yesterday's visit was so much better. The thing is with this disease, you have to hang on to the good times, and try to put the bad ones behind you. Not easy, I know.

    Valium is addictive, and the problem is, the dosage has to be increased as the body becomes accustomed. But most GPs will prescribe it for a limited period for crisis management, to be used as required.

    Alternatively, amitriptylene, an old-fashioned anti-depressant which is no longer used in this way, is also a relaxant (I take it for muscle spasms in my neck). It's not as addictive as tranquilisers, I never have problems doing without it. It may be worth asking about it if your mum becomes agitated again.

    Love,
     

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