What do you do when they want to go home?

Discussion in 'ARCHIVE FORUM: Support discussions' started by Mjaqmac, Jul 22, 2004.

  1. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Mum became very upset today and wandered out of the house, I was upstairs but my father got her quickly. She refused to come back in with him, then I saw what was happening and she came in with me. She has never wandered before.
    She becomes convinced sometimes that this is not her house (she's lived here for 38 years). Then becomes very distressed and thinks we are keeping her there against her will.
    Dad and I don't know what to do when this happens and all I seem to manage to do is loss my temper and yell that it is her home. This is weird as I'm a very placid person whom hates confrontation.
    Can anyone advise a sensible helpful way to deal with this?
    What do other people do? She also thinks my father isn't her husband sometimes and becomes very angry and upset.
    Can anyone advise how to deal with these horrible, distressing situations?
  2. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    This is probably one of the most awful situations we face, and many of us have been there. We have more control when they are in the house, but when they want to leave, it takes them out of OUR comfort zone [it is no longer theirs, which is the problem].

    Often it happens regularly as an episode of sundowning, and medication [promazine] is what worked for Jan, though I had to be fast on my feet to anticipate it.

    We all get frustrated and shout at one time or another. We are scared for them, and also are scared that people outside will see them in their vulnerable situation. No problem. Although it does no good, and makes us worse, the sufferer forgets almost at once.

    I used to take my wife by the arm and say "let's go for a short walk". That would distract her and we would go a few yards then I'd say "I could murder a cup of tea - shall we go in and make one?" That generally worked. Sometimes it wouldn't, and we would just stand in our drive and I would talk her into going back in with me. That would take anything between 5 and 30 minutes. On a few occasions I was reduced to begging her, and that worked too. There was nowhere I would not stoop to keep her safe.

    If your Mum has done it once, then she will probably do it again, so try and identify if there is a certain time of day, circumstance, etc. That will help you to anticipate when it may happen again.

    Can you keep the door locked?

    It is worse for you the first time it happens because it IS the first time. It may become normal, and you will adjust to it. Believe me, there are many things you will adjust to!

    Keep strong. Take care.
  3. thompsonsom

    thompsonsom Registered User

    Jul 4, 2004
    My mother in law tried to "escape" once and i ended up running on the street after her for fear she would be knocked down by a car or something. Now when she says she is going home we just let her and follow her, usually she doesnt get any further than the front garden gate and will stand there saying hello to all her friends who are just strangers really. I think she realises once we dont stop her that she is too frightened to go off on her own and because no one is stopping her she does not feel as though she is being told what to do. Hope this helps if not best lock the door we used to have to do that before for her own safety.
  4. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    My wife has not wandered off yet but every evening she repeatedly asks me "when are we going home".
    It has gone on so long now that she answers her own question with "We are home".
    Bruce rightly calls this sundowning and I believe it happens when they are tired at the end of the day"sundowning"
    Some times it is possible to ignore the question altogether and like a lot of other questions it is forgotten,for a time
    Day to Day
    best wishes
  5. Kriss

    Kriss Registered User

    May 20, 2004
    Going home or going to work were the biggest of all the challenges we faced when Dad was poorly. It was difficult during the daytime/evening but the middle of the night presented the most problems not least because Mum would be at her lowest ebb and although I was less than a mile away she would never cry for help until she was absolutely desperate.

    Dad had worked shifts including nights for most of his life and I am convinced this had a bearing on his timing.

    Every attempt to "go" had to be treated individually as he was very creative with his reasonings. Our favourites were:

    suggest he "hang on a minute lets have a cup of tea then I'll come as well" - he would often fall asleep in his chair or forget.

    other distractions i.e. "can you do something for me first" - again he would forget

    to help him get his coat and then take a detour around the garden gently steering him back inside - a dog is a great distraction.

    actually go for a walk with him - longer version of the above!

    take him for a drive in the car - even longer version of the above - calling in at my house to "pick something up" or at a friends to "drop something off" - then suggesting "I could do with a cup of tea before we continue".

    Get the picture? Delay - distract - tire out! Sadly its pretty exhausting physically and mentally for the carers as well but heck, thats normal isn't it.

    Our main concern was the thought that he might get out during the night without us realising it (once again he'd had lots of practice throughout his working life not disturbing anyone when he left. This left Mum totally exhausted as she would not allow herself to sleep properly just in case. We had lined up a strategically placed set of wind chimes in the hall to act as a gentle alarm but sadly we never had chance to test their success.

    Good luck

  6. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    #6 Mjaqmac, Jul 23, 2004
    Last edited: Jul 23, 2004
    Thanks everyone

    Thanks everyone for all your advice.
    It is usually between 4.30pm and 6.30pm that these episodes occur, they are not that frequent at present but visitors seem to be a trigger.
    My aunt had visited yesterday (mum's only sibling) and for some reason it seemed to unnerve her no end! I don't know what had been said. My aunt is a lovely lady but has no concept of dementia and tends to talk to mum like a naughty child. It's a now now, finger wagging attitude.
    Maybe others find that visits from family unsettle their loved ones too, especially as they are so infrequent!
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    3pm - 6pm was the classic sundowning period for Jan, so your timings broadly fit with that.

    Anything that is out of the normal daily pattern can be disturbing to them, so visits also fit that, even ones that are from people who come with reasonable frequency.

    Sounds like you have a handle on it!
  8. Jude

    Jude Registered User

    Dear All,

    My father seems to suffer from this 'sundowning' syndrome more than my mother. Around 7.30pm he becomes very restless and oftens wants to 'go home' or wanders around looking for his bedroom and dragging my mother along with him. It's a wonder the hallway carpet hasn't worn out...

    He also refers to my mother as 'Stephen' [my brother] and wants to know why she is sleeping in HIS bedroom too. Fortunately, once they get into their undressing and washing routine, it tends to wear off, but it's a very frustrating time of day. Quite often I can settle them down again with a glass of warm milk or a short walk around the garden pre-bedtime.

    My father also insists on doing a 'lock up' routine. He goes around and shuts every door and window and unplugs all the kitchen appliances, TV, etc and then carries the remote to bed with him. It's irritating, but all I have to do is open everything up again after he's in bed and swipe the remote later on if I want to watch the television.

    My mother is actually in reverse mode - she is dreadful in the mornings. She wakes up weepy and complaining and spends ages repeating 'What do I have to do now' and 'Will somebody help me' in a very high pitched whine. I think this is probably lack of food after a long night's sleep, as she seems to be fine after breakfast. I've tried giving her breakfast earlier, but then she insists that she hasn't eaten, so I just tend to grin and bear it really.

    They are both happy enough during the day, which is a great bonus.

  9. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Mum's the same!

    Jude my mother is the same as yours in the morning.
    She wakes everyday in the throws of a panic attack, teeth chattering and extremely distressed. She cries she just wants to go home and wants her mum and dad. I absolutely dread the mornings, and as you know as a carer, there is never a day when you can lie in. You are in a state of permanent exhaustion. The same routine exsists everyday. She's not sure whom dad is in the mornings and won't settle until I come into the room, take her to the bathroom, then put her back to bed and give her her oxygen. She will then drift off to sleep for a precious little time.
    I had gotten rid of the 2 care workers washing and dressing her in the morning as they were coming at 8.30am, 11.am any time they liked really. This was upsetting the routine too much, and my father and I, as they still share their room.
    The CPN has now found another agency to come in and although they only started 2 days ago, already it's not working out. The woman at night is meant to come at 9pm which I agreed with her bosses. She came last night at 7.40pm, informed me there was a girl coming she was training at 8pm, then they stayed til 8.50pm chattering. This might be a god send to someone living alone to have a chat, but it really upset my father's and my evening and my mum was losing the will to live listening to this woman chattering on about herself. I can see this not working out either. Do others find it easier too to get rid of the outside help? At least then you have your home to yourself and not be on the clock night and day waiting for people to arrive or not, as the case has been sometimes. In the meantime the agency whom where not supposed to come anymore arrived too, there were 4 people wanting to undress my mum! In the meantime I was trying to get my hair dried as my boyfriend was on his way up. It was like a carry on movie! I was waiting on the Benny Hill music starting and us all chasing each other around the house! I had to undress my mother again after they all left because she wouldn't let them take her bra. God save us! All that for nothing!
  10. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I agree, the inevitable weariness of it all is such a problem!

    Awaking used to be awful, knowing I'd be on the go - with no obvious beneficial effect - until I went back to bed.

    Getting agency or Social Services care workers to help at home is a problem because they are not consistent in anything. And timing of everything is particularly important.

    I agree that it may seem to be best to be totally in command and get rid of unreliable outside help! But you have to give yourself a break sometime! [not that I ever did, and I suffered for that]

    Mjaqmac - did you post a message to the forum and then delete it last night? Feel free to send me a private message any time! You have not registered an e-mail address so I couldn't post to you about this.
  11. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Hi Brucie

    Yes Brucie I did post a topic and delete it last night as I thought it might be too personal a question and might offend others, which I wouldn't do for the world.
    It was about finding it hard to find spiritual comfort whilst watching your loved one suffer.
    I looked for solace from a holy man whom I respect immensely ,as I have found comfort all my life in god, and was told that it was time to say goodbye to my mother. That was last year, I was disgusted and churshed although I knew where he was coming from. But it was no help and I find watching my mother suffer an incredible hinderance to holding on to spiritual beliefs.
    I was wondering if anyone has felt the same and then maybe managed to see some sense in it all and gotten their spiritual comfort back?
    Sorry if this is all too deep. Religion always puts the cat amongst the pigeons! But we are all human beings experiencing the same thing so surely some of us must be feeling the same emotions, depending on our personalities and spiritual persuasions?
  12. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Aha, I thought so.

    Firstly, when you have nowhere else to talk about these things - use this forum. There are others out there who are/may be feeling just the same - that is the power of the thing, knowing you are not alone.

    I've found two areas where I have generally held back from posting: firstly the whole faith thing; secondly, the situation of my moving on in my life while my Jan is so tormented - how do you explain that you have found someone else BUT THAT you still love and want to care for your wife of 35/6/7 years?

    On religion - I've pretty much discarded that as I can't rationalise how a god can be 'almighty' yet be powerless. I can't forgive a god for letting this happen to Jan. I think that if you believe that everything good comes from a god, then everything bad must, also. If you ascribe all good things to a god, then it detracts from the basic good within those who have done so much to try and help. My summary is, if there is a god, then he/she probably has dementia.

    Please keep posting. There is nothing too deep for this forum.
  13. Jude

    Jude Registered User

    Dear Mjaqmac,

    I totally understand your frustration with 'carers' from Agencies.

    When I first moved my parents into the bungalow, I organised an outside care Agency to come in at 8am to help me get my mother washed and dressed and ready for breakfast. My father can do that by himself fortunately, or there would have been a riot!!

    After the first week I had to cancel the whole arrangement. The first day, a carer arrived, banging on the door at 6.45am. She literally bustled in and took control of the situation. 'No time, no time, have to be at the next one at 8 o'clock'... It was like being hit by a cross between the Gestapo and a Sherman Tank!!! She had my mother out of bed in 2 seconds flat, stripped naked and covered in soap and cold water. I was livid and when I suggested a more quiet approach, I was told in NO uncertain terms that I didn't know what I was talking about.

    That was on the Monday. Until the Friday we had a succession of these bossy, brawny women belting throught the house at 100 miles an hour. After that, I was totally beside myself and cancelled the whole deal. I was appalled at the indignity my mother suffered that first week.

    For a start, NOBODY is going to drag my mother out of bed and strip her stark naked. Now, I [or Carole] get my mother out of bed really gently because she gets dizzy. After that, we undress her very slowly bit by bit and we help her wash herself with warm water and cover her with a warm towel. Usually the top half first and then dress her with bra, vest and shirt. Then the bottom clothing. This way she can maintain her dignity and also keep warm!! It doesn't matter how long it takes, the point is that she feels relaxed and comfortable.

    After that, she goes back to the bedroom to wait for my father to finish shaving and washing and then they both come to breakfast together. We still get the whinging and crying jags, but at least I know that Mum is warm and dignified. As soon as she's had breakfast she's usually fine and happy.

    That first Agency charged me £18 per hour to treat my mother badly. On top of the indignity she suffered, we had to put up with the trite conversation. 'Now, come along Mrs Frogley, don't be such a baby...'. and 'We don't want to be such a nuisance, do we, Mrs Frogley'. 'Joan, don't be so naughty' etc etc. I was absolutely furious with them.

    Thank God that I now have Carole and Glyn. If the Altzheimers Society ever run a 'Best Carers of the Year Award' then I'd nominate them a thousand times over. They aren't trained Agency carers - they are just people who CARE.

    You must be absolutely strict and lay down the law about exactly what you need from the beginning. Even if you have to write a schedule. If not, don't pay for it.
    The carers have to do exactly as you want them to or it's going to be a terrible frustration for you. If you are paying for help then you have a right to get exactly what you need.

  14. Jude

    Jude Registered User

    Dear Brucie,

    Since God is so old, then she/he would have been the first victim of demetia anyway. What do you think? After all, he invented it.

    Sometimes when my father is talking to himself [or somebody that I can't see], I often wonder if he's having a quick chat with God. My father also has long conversations with his family who have all been dead for years. I certainly can't understand what my father is on about, but he seems pretty happy with the outcome of the conversations.

    Babies gurgle away to themselves and old people do the same. The Balinese people 'know' that children and oldies are closest to God by dint of their age and they are honored for that.

    If my father is talking to God, then who am I to say that he isn't?

    You also say in your post that you've found somebody to share your life, even though Jan is still alive and in care and that you still love her dearly. Of course you do. It doesn't preclude you from loving others and getting on with your life.

    Bruce - you are an absolutely wonderful person. The advice that you give to eveyone on this website is brilliant because it is so thoughtful and wise and you do this consistently. We have all benefitted from what you say. You also have a terribly pithy wit - which I for one enjoy very much.

    Keep your past dreams and memories and go forward. You still have a lot to do. But - you don't really need me to tell you that, do you?

    Jude xxx
  15. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Jude, foiled again!

    Tonight the carer from the agency arrived at 8pm. I had just got mum settled with a cup of tea and her painkillers and she was happily watching tv. I saw red! I told them that I had sat down with their bosses and arranged 9pm I had then compromised with 8.30pm last night when one of them said 9 was too late coming into winter. (hello! it's July!)
    I sent her away without changing mum and told her she would be here at 9pm tomorrow as planned or don't bloody come at all.
    I didn't even want this all starting again. It was the CPN whom arranged it. I want all these bloody strangers out of my house.
    People think because mum has dementia she has to do what everyone else says. i don't work that way. If I ever get dementia I would like to be able to finish a cup of tea without some stranger trying to whip my drawers off.
    God Almighty, every day is a trial.
    It's easier without the help thanks!
  16. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    Brucie it's no crime to love

    Brucie enjoy your time with your special new person, you deserve it. It seems to me that all too often the loved ones of dementia sufferers go through more agony than the one with dementia, often all we have to look forward to is the past. Go forward you have a big enough heart for 2 special ladies. Everyone in life means something different to us. It's not a crime to love, but it seems a crime not to.
    Best wishes and good luck
  17. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    As an oldy myself and a carer I resent very much the condescending and patronising manner in which some younger folk treat older people.
    Some of the worst I found were unqualified health workers who thought that they were superior to old people,the experiences of some of my friends on this site support my statement.
    After I retired from the NHS I was chairman of the local CHC and we fought long and hard to ensure that older people were afforded the dignity that they were entitled to.
    In hospitals and community no one presumed to address an older patient by their forename,the patient was asked "What do you want be called"?
    Not long ago I was addressed as "mate" I informed the person concerned that I was not his mate and to address me by my correct title MR.
    I think I will shut up now having let of steam about one of my favourite causes
    best wishes to you all
  18. Jude

    Jude Registered User

    Dear Mac,

    Sometimes it was such a hassle to get my mother dressed and undressed and washed every single morning and night. But compared to the aggravation of carers coming in, then I just felt that it was better for me to do it in the long run. [That was before I had the present carers].

    It feels like an invasion of privacy. You need to find a carer with whom you can establish a relationship and then all will be very easy and second nature. It takes a while to do this and you can go through a lot of them before you find someone who will be sympathetic and caring. Don't give up. There will surely be such a person. And when you find them, for heaven's sake, hang on to them. They are worth their weight in gold.

    You made me laugh - fancy trying to have a cup of tea with some bossy woman trying to whip off your knickers...! Sorry, I'm not being frivolous here.... I know the scene exactly.

  19. Mjaqmac

    Mjaqmac Registered User

    Mar 13, 2004
    #19 Mjaqmac, Jul 25, 2004
    Last edited: Jul 25, 2004
    Hi Jude

    Jude, I will try to be patient and find the right person for mum, if they exsist! Mum absolutely hates having her privacy invaded and I have to say I would too if I were in her situation, and let's face it, none of us knows what's ahead of us!
    Sometimes I am absolutely horrible when I'm dressing her, muttering away under my breath like an obnoxious teenager, but I love her and always want what's best for her and unfortunately, like most carers, I feel I'm the only one whom can do things the way she likes it. I suppose I will have to try to learn to let go as this illness progresses.
    A problem I have is when she was taken into an assessment unit for drug trials etc, she was left sitting doped to the eyeballs on drugs and I watched many times as she was handed full scalding cups of tea which promptly were spilt down her as she didn't even have the strength to hold the cup. She didn't feel the hot liquid either because of the drugs. She then got a black eye in a mysterious incident that happened in the middle of the night which no one was witness too. Mum didn't feel this either and the entire left hand side of her face was a map of bruises. They didn't take her to have an x-ray as they said if the eye wasn't bloodshot there was no danger.
    This was all after mum had been diagnosed and I was wandering around in shock. I did nothing or said nothing or queried nothing as I trusted these people and was scared of rocking the boat.
    How much I've learned!
    I ended up taking my mother out of that place in an ambulance and taking her off the neurolyptic drugs they had her on. I didn't understand about these drugs until I came across alzheimers society info. I think this site may have saved my mother's life!
    But because of these experiences I loathe to let anyone else be responsible for her wellbeing. And I know I'm not alone. I know someday I will have to let go, as this will be out of my hands and the boundaries of what can be done at home, but I'll just do what all carers do and take it a day at a time.
    Until then the drawers stay put til mum's ready to part with them! Care worker's schedule or not!
    Maybe that would be a good title for an alzheimer's society book.
    "The Drawers Stay Put Mrs!" a future bestseller by the members of the alzheimer carers' self preservation society. What do you think Jude?
  20. Jude

    Jude Registered User

    Dear Mjaqmac,

    Reading your post was so beneficial and helpful...

    I sometimes feel so bossy and opinionated in that I think that I am the only the person in the world who can REALLY look after my parents correctly.

    I also swear like hell under my breath when helping my mother get dressed or undressed. It's 'Oh, for God's sake, why can't you manage to put this vest on properly.' It takes so LONG...! I just want to do it all for her, but I know that if I do that, then she will lose the skill to be able to do it. I will be making a rod for my own back by interfering. I get so impatient sometimes....

    I've learnt by watching the carers, that they are much more patient than I. They are also much more objective about things and are a wonderful help when I feel stressed out.

    I haven't had to deal with the medical problems yet that you've experienced and I totally understand your anxiety about this. I feel very protective towards my parents and think I would just about kill anyone who hurt them. They are so vunerable aren't they?

    My father calls his memory loss the 'slippery slope'. He knows that he is losing the plot and gets very angry and impatient with himself because he simply can't remember things any longer. All I can do, is try and reassure him that I will always be here to help him remember. I will always be here to protect him.

    It breaks my heart to see them like this and to know that things can only get worse.

    Your book title is just GREAT... Cheered me up no end. I wonder if we all should get together and write a book about our trials and successes. That would be a wonderful monument to our parents, wives/husbands fight with AD.

    With best wishes, Jude

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