Husband wants to go 'home'

Discussion in 'I have a partner with dementia' started by goldie79, May 23, 2015.

  1. goldie79

    goldie79 Registered User

    Mar 12, 2015
    I am new to this forum, and am looking for advice for a problem which I understand is quite common in dementia sufferers. My husband was diagnosed with vascular dementia in January 2014. Since last winter his mental state has deteriorated quite rapidly. He doesn't recognise me as his wife, and he is constantly looking for ways to get 'home'. We live on a busy road, and as he has wandered several times I keep the front door locked. Of course, this increases his frustration and distress, but I am at a loss to know what else to do to keep him safe.

    In a way, he is aware of his situation, and distraction techniques don't work. His language is becoming very abusive - and I can see why. In his eyes I am keeping him imprisoned and he regards me as his jailer. Usually he isn't too bad in the morning, but becomes increasingly distressed as the day progresses. He has been prescribed half a tablet of Lorazepam 1 mg up to twice daily, and today for the first time I have had to to give him the second dose. Can anyone advise me how to deal with this?
  2. katie1

    katie1 Registered User

    Aug 5, 2014
    Kendal Cumbria
    This was so like my Dad last year, it was so hard for Mum to deal with. They live on the side of a fell, on a windy lane up a steep driveway at the bottom of which is the road and a river. She was advised to keep the doors locked but like you that added to his frustration. I used to go round early evenings to provide support/distraction/help
    We also got help (with his AA higher level money) for sessions with a carer. This helped a bit to keep Dad active. But it does seem like a common 'obsession'.
    Have you got help from anyone who can take him out in the early evening? or a carer that could come a few evenings a week to help with activities? I know its very difficult to deal with.
    Is there a dementia Nurse that could advise you?
    A Day centre he could attend in the afternoons and early evenings so that he might be more ready to relax and rest when he comes home?
    Is there any kind of local dementia carers group you could join for support?
    Kee reading round this site this problem has been discussed before and you might find some good ideas.
    Talk to the Community Psychiatric Team and GP again because his frustrations and his feeling confined and locked in can/might/change his behaviour toward you.
  3. Feline

    Feline Registered User

    Oct 25, 2012
    East Devon
    Are you able to take him for a walk to help use up his energy, I use to go with my husband for a walk and take the dog,I still take him for a couple of turns around the garden (because he can't walk so well now),I do it just for a change of scenery for him and exercise. Also does he necessarily need Lorazepam in the morning? Could you maybe hold it off until lunchtime, so that he is only having one dose?
    Katie has given ideas, sorry I can't think of anything else.
    Take care
  4. goldie79

    goldie79 Registered User

    Mar 12, 2015
    Thank you for these suggestions. I have applied on my husband's behalf for Attendance Allowance - not had a reply yet, but it's quite early days. Also asked for a carer' s assessment, but that could take up to 20 weeks. I understand that, although there is a Day Centre, the initial referral has to be from a care co-ordinator or social worker neither of which we have at the moment.

    I do walk with him and we go shopping together, but the problem then arises when we get back here that he doesn't believe he is in his real 'home'. Having read many of the postings in this forum, I realise that my problems could be much worse. It's just so upsetting to see my husband so unhappy and to know that I can never resolve the problem for him.
  5. goldie79

    goldie79 Registered User

    Mar 12, 2015
    Thanks for reply, Feline. Yes, but see my reply to katie1. He used to be a really good walker, but his stamina and gait have worsened over the past several months, and he gets so upset when we return to what he thinks is a strange house that I almost dread going out with him.

    Our GP prescribed the Lorazepam for when he gets really worked up, and he is usually quite bright in the mornings since he has been on Cetapramil, so has never had Lorazepam until the later afternoon if it's necessary, and not every day.
  6. jjude

    jjude Registered User

    Jan 4, 2011
    Hi this is the same issue that we have with my dad and the only thing that really helps is to sit very closely with him and hold his hand firmly and stroke it. I also lean my head into his head and this seems to calm him immensely. He still gets up and wanders around the house again but in a calmer way and then I will ask him to sit next to me and we hold hands again. he goes quiet during this time and the quiet period also brings short relief from the perpetual I want to go home theme. even five minutes break is welcome. this is definitely worth a try good luck x
  7. LadyA

    LadyA Registered User

    Oct 19, 2009
    Hi, and welcome to the forum.

    We were just discussing this on a couple of other threads in the past week. It's a difficult one. You have the double problem of your husband's agitation and his wanting to go "home" when he is already home. How long have you lived in your present home?

    One conclusion I came to about this whole concept with those who keep asking to go home, when they are already home is that "home" is not necessarily always a place. It's a sort of nebulous concept - like when we were children, and our parents took care of everything, and we didn't have to worry about anything, and had no responsibilities. The feeling of security we had then. And don't we all at times want to go back to that? Especially when, through tough times or illness, or for whatever reason we feel our world is shifting on its axis - we'd like to go "home" to that trouble free sense of comfort and security? I know I would! And I think that's what our loved ones long for at times and can't express other than saying they want to go "home" - they know things aren't right, and they know they are "missing something" - maybe many things - but they aren't sure exactly what's going wrong - and that makes them feel very insecure. This expresses itself in different ways - shadowing, constant repetitive questioning - and constantly asking to go "home".

    However, I do think you need to, for both your sakes, talk to your husband's GP again and see if maybe a different type of medication might suit him better. The same things don't suit everyone - he needs something that will calm his agitation without knocking him out. Best of luck. xx
  8. Jinx

    Jinx Registered User

    Mar 13, 2014
    I have the same problems with my husband, when it first started I was at my wits end, then I started to pretend we were just staying at the house for a couple of nights and it had all been arranged with the owners. Sometimes if it was really bad I would take him for a drive even quite late at night, and often when we pulled up outside the house he would say 'at last we're home'.

    We moved at the beginning of the year to a single storey annexe on my daughter's house and although it's still not 'home' and he still wants to go to see his parents (long dead) he seems a bit more accepting somehow. I still have to keep the doors locked as he is liable to falls and anyway would be lost as soon as he got outside. It is hard but sometimes you just have to make things up to avoid the confrontations.

    Sent from my iPad using Talking Point
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    I didn`t lock my husband in, he became too aggressive. I used to let him go and follow him at a distance.

    He used to be a walker and even though he was slowing down in so many ways in the early days I was hard pressed to keep up with him. He always walked towards a busy main road but when he got there was afraid of the traffic and so very careful. However I used to believe I could warn drivers of his presence if necessary.

    Sometimes he would shout at me to go away, sometimes he would think I`d come to meet him and he`d come home with me willingly, sometimes he thought we met by accident and was actually pleased to see me, sometimes I had to phone my son for help.

    It was a very distressing time but I never locked him in. In his case I knew it would make him angry and I was afraid.
  10. marionq

    marionq Registered User

    Apr 24, 2013
    #10 marionq, May 25, 2015
    Last edited: May 25, 2015
    I have the same problem with my husband just now and locking him in would not work and lead to confrontation. When my distraction techniques dont work I make sure he has his mobile phone round his neck. He can't make a call but will answer me usually after a couple of attempts!

    Recently he has started taking buses into town but can't remember how to get back. I have lost count of the number of good people who have brought him back or called me to say where he was. I looked at tracker systems and talked to people who were using them bit for a variety of reasons they were not right at present.

    I also have collected him half a dozen times from the house he grew up in which is only a few minutes away from where we live now. When we moved here five years ago it never occurred to me that would be a problem.

    He is on the police register and I am supposed to be getting a visit from social services to see what else can be done. He has one day at the day centre and more would be great. I take him out somewhere every day and in the evenings either for a meal or a long walk but this phase of excess energy is draining. Hopefully it will end soon. Thinking of you.
  11. jjude

    jjude Registered User

    Jan 4, 2011
    I have read with interest some of the comments and am not sure I agree with going home being a nebulous concept. My dad knows exactly where he want
    S to go and that is his childhood home. he can tell us the name of the street and the house number along with his mothers name and often asks us when is his mother coming for him. he cannot tell you where he lives now and at the moment am pretty convinced he is around two years old and wants his mum and his childhood home. we have a family full of boys aged 1,2,3,4 7 and 9 and have seen him regress down through their ages and is currently on a par with the three and two year old. when they ask for their mum I am reminded of dad asking for his so whatever they are thinking I feel he is on the same level. heartbreaking fascinating disease I hope you find ways of coping we do by trying to find the humour in things good luck
  12. LadyA

    LadyA Registered User

    Oct 19, 2009
    Well, obviously jjude, I wasn't meaning that it was the same for everyone who expresses this wish to go home! :) As they say, when you've seen one person with dementia, you've seen one person with dementia. But I have come accross people for whom "go home" does seem to mean more a concept than a place. People with dementia who were always asking to go home, when in fact they had lived (and were still living) all their lives in the home they were born in - and in both cases, their fathers and grandfathers had also been born and raised there.
  13. katie1

    katie1 Registered User

    Aug 5, 2014
    Kendal Cumbria
    All I did was ring Age UK and ask for someone to come round with the necessary AA form and fill it in with us, and this nice young man did just that a few days later!
    I don't know Somerset at all but if you google services for people with dementia somerset...
    try age uk somerset
    (carelink---day centres, dementia groups etc)

    somerset care....dementia care 0800-9884337 for services in your own home

    Dementia Active Centre Frone--short to medium care open 6 days a week 11 a.m.-3 pm
    01373 473703
    plus they also give various care homes that offer respite for week days/evenings or whatever you might need

    Im sure there are other things and you won't be ready for any or all of it now/or its in the wrong area but some of the people might be worth contacting because they might know of similar things closer to you.

    Finding him other things to do might help
    Does he enjoy, or might he enjoy something like swimming at a local leisure club? an early evening swim maybe?
    Could a carer or friend also help take him out for a walk in the evening?
    and by the way you just ring adult social care (social services) and say you want to make a self referral and ask for a social worker to come out and do an assessment asap! thats what I did
    I found that the carers assessment wasn't much use actually.
    Once we got the AA sorted I gave up waiting for social care to organise help for my Dad and I just went to a good care company and got a carer because Mum couldn't cope any longer and social services were taking too long!
  14. Equitimer

    Equitimer Registered User

    Aug 27, 2012
    Nr Lavenham, Suffolk
    So familiar

    Oh boy, does this ring a bell!

    I've been caring for an old friend for over a decade now, but over the course of the past three years she's been asking to be taken 'home' every evening. The fact that she's lived at her current address for over 20 yrs and all the people and animals she thinks require her attention are long gone means absolutely nothing. Distraction techniques work from time to time, but she's determined!

    She's now 93 and never attempts to wander, so I must be grateful for that small mercy!

    BTB, hope you're applying for Carers Allowance too?
    www gov uk / carers-allowance
    To my cost, I now know that it's important to keep the client's income as low as possible (we had to pay a small proportion towards respite cover until my C A diverted some of her income).
  15. goldie79

    goldie79 Registered User

    Mar 12, 2015
    A Big Thank You

    Thanks to everyone who replied to my original posting. It's comforting to know that there is so much support from people out there! I have just received a letter saying that my husband has been granted attendance allowance, so may be able to pay for some one to come in and sit with him. The most difficult aspect of this situation, apart from my husband's obvious distress, is getting out to do mundane things like shopping. I cannot leave him alone, but if I take him with me he is even more upset at coming back to what is, to him, a strange house (we have lived here for over thirty years, and he is now completely disorientated in the house). Thank you all once again. As I said in an earlier posting, I know that some of you are in even more stressful situations than I am, and I am grateful for your help.
  16. stranger

    stranger Registered User

    Nov 14, 2014
    hi Goldie ,
    read your post & replies with interest, looks like we've all been here. My husband was on same meds PRN, became agitated and restless around 4pm,I believe its called sundowning. Have you tried getting him to help prepare dinner ? this worked for my OH(more peelings than potatoes ) but it worked. Perhaps you could "invent" a task to do in the garden that's "too difficult for you on your own". I believe that our poor loved ones just need to feel useful not useless. My OH was in an assessment unit (not local no beds) and was given Melatonin to help with sundowning -he was only there 5 days but it appeared to be helping, sadly he was moved nearer home and his new consultant replaced it with a sleeping tablet (said he wasn't sleeping), you could mention this to your GP ask his opinion. Take with Lorazepam as it can become addictive. best wishes xxx
  17. Humptydingo

    Humptydingo Registered User

    Jun 3, 2015
    I have a similar problem - around teatime every day now he says he will just have a cup of tea then he must go back to London ! We live in the centre of France and he doesn't actually mean London he means Kingston on Thames - which is London for people who have lived in Kent! He repeated tells me that he has to return a van which is currently parked on a yellow line outside. We live in small village - no need for yellow lines. He used to work as a mechanic for a van sales company 25 years ago - he is 80 now. He thinks 'London' is 10 minutes away !

    He has been wheelchair bound for around 7 years which followed years of struggling with balance after what was believed to be a mini stroke. Alzheimers has progressed slowly over about 3years now. He doesn't have a current driving licence since he was not fit to drive at the time it should have been renewed at 70 so he relies on me to drive him everywhere.

    My problem now is that he has forgotton that he can't walk or drive and tries to get up from his lounge chair - he's about 13 stone and I have had to help him get up after a few accidental falls over the years but this is a new thing and I know that I can't help him to get up off the floor anymore -I'm 68 myself.

    I have made arrangements to relocate back to the UK in october
  18. LadyA

    LadyA Registered User

    Oct 19, 2009
    I hope you will be able to get some help and support back in the UK.

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