Begging to GO HOME.

[Rageddy Anne]

Risperadone is the right spelling, and I cautiously THINK, only THINK that it helps, at least some of the time, but I don't think it's the same for everyone.

We've had conflicting advice, very cautious from the GP, who said use it occasionally as it becomes less effective. I contacted the Community Psychiatric Nurse one afternoon in desperation, and she recommended taking my husband out for a while to break the pattern, and give him the Respiradone immediately and continue daily.


Now a pattern seems to be emerging, we go two or three days without taking it, and when the Going Home or similar preoccupations set in and distraction makes little difference, we start again for a few days.

He took one yesterday afternoon and quietened soon after, and then had a reasonably long sleep. The Going home etc questions started after lunch today, and worsened until he was frantically worried about several bizarre things. Distraction didn't work, I gave him a Respiradone about an hour ago, and now he's peaceful!

Fingers crossed......

 

[Rageddy Anne]

Perhaps there really is nothing that helps.....

Fretting to go home, which only seems to happen in the afternoon and evening, has happened every day since my last post. So every day he's taken a Resperadone, which seems to lighten his mood, but the " can you find someone to take me home? questions always come back.

So I'll ask the doctor if he can think of anything else....

 

[Ann Mac]

Fretting to go home, which only seems to happen in the afternoon and evening, has happened every day since my last post. So every day he's taken a Resperadone, which seems to lighten his mood, but the " can you find someone to take me home? questions always come back.

So I'll ask the doctor if he can think of anything else....

I do feel for you - we telegraph that the 'going home' questions have started by warning each other that 'ET has landed', and we - nowadays - always take the same approach. Distraction and love lies have never worked with this issue, so we tell Mil the truth - gently but firmly and if she persists in going on and on, we ask/tell her to go to her room to calm down or have a rest. Not always, but sometimes, this works to break the cycle. However, sooner or later, ET lands again and we start over. Its mind blowingly tedious and heart breaking to deal with, I too wish that that had been some research done to help with this.

By the way, Mil took respiredone for about 18 months, on a prescribed twice daily basis - towards the end I think it was becoming less effective - though equally, it could just have been her condition worsening. In the end it was stopped as being innapropriate when yet another consultant changed her diagnosis to LBD - but out of all the meds they have tried, I'd say for her, that was effective for the longest time xxxxx

 

[Grannie G]

Fretting to go home, which only seems to happen in the afternoon and evening, has happened every day since my last post. ..

It`s painful Anne. It brings so many memories back. With Dhiren it happened until there was a downturn.

 

[Witzend]

If only someone could find a pill for it! I didn't have too much trouble with my mother - I just used to say e.g. maybe I'd take her tomorrow when the roads weren't so busy, and she'd be happy with that, even if she asked again soon afterwards.

But there was a poor lady at her CH - probably still there - who was constantly wandering around with a packed bag, asking anyone and everyone if they could take her home. This was going on for at least 2 years - I always said, 'Ooh, sorry, I haven't got the car today,' and she never seemed really upset, just sort of vague and in a fog.

However, during the the last Christmas party OH and I were taking turns to sit with my mother upstairs, since she was way past being able to enjoy such things. And this poor lady was really distressed this time, crying that she HAD to get home, her mother would be worrying, she wouldn't know where she was. The staff were extremely good and kind with her, saying they'd phoned her mother, it was all right, it was too cold and dark to go just now, but she would not be comforted.
It was heartbreaking to witness.

 

[Dimelza]

My dad was just like this. We used to drive him up the road to go home (from his home!) and then at the end of his road he'd ask us why we were going that way, direct us round the block and back home then settle!?
He would phone me constantly asking for a lift home from 3pm daily, I'd fob him off sometimes but mostly he'd end up quite upset so I'd end up going round straight from work. By that time he'd settled down. Frustrating but very common.


Sent from my iPhone using Talking Point

 

[Rageddy Anne]

Respiradone...

When we were down to five Respiradone tablets I emailed the GP, ( had been told this was perfectly all right) and asked if we could have some more. Nearly a week later I received a phone call from the GP's receptionist telling us to come in for an appointment the week after next. I now have two tablets left.

We've had visitors and outings lately, and while that was going on there was NO TALK OF GOING HOME! Instead, his lament changed to " I don't know what's going on" and " why don't you put me in the picture? I don't know what's going on and no one will tell me". He was told every time, often seconds apart from the previous question. He didn't have any Respiradone for about six days.

Yesterday the Going Home started again, and there was no question of distraction. He went outside, round the side of the house, and banged angrily on the window to be let in. He had no idea how to find his way round the corner back to the front door he'd just passed through. Back inside he was distracted briefly by supper, but hated everything on TV, so we couldn't watch anything. Wanting to Go Home was replaced by "I don't know what the H*ll I'm supposed to be doing", which went on until bedtime. This morning's refrain is "Where the H*ll am I supposed to be?".............

So I wonder whether the Big Question will change from wanting to go home to wanting to know what he's supposed to be doing, or where he's supposed to be. These questions can be like a blizzard, often only seconds apart, so he's almost forming the words before I've finished answering.

I have a new theory. Does he feel a need to fill the air with his own questions so that he can avoid the need to struggle understanding an answer?

 

[sleepless]

When we were down to five Respiradone tablets I emailed the GP, ( had been told this was perfectly all right) and asked if we could have some more. Nearly a week later I received a phone call from the GP's receptionist telling us to come in for an appointment the week after next. I now have two tablets left.

We've had visitors and outings lately, and while that was going on there was NO TALK OF GOING HOME! Instead, his lament changed to " I don't know what's going on" and " why don't you put me in the picture? I don't know what's going on and no one will tell me". He was told every time, often seconds apart from the previous question. He didn't have any Respiradone for about six days.

Yesterday the Going Home started again, and there was no question of distraction. He went outside, round the side of the house, and banged angrily on the window to be let in. He had no idea how to find his way round the corner back to the front door he'd just passed through. Back inside he was distracted briefly by supper, but hated everything on TV, so we couldn't watch anything. Wanting to Go Home was replaced by "I don't know what the H*ll I'm supposed to be doing", which went on until bedtime. This morning's refrain is "Where the H*ll am I supposed to be?".............

So I wonder whether the Big Question will change from wanting to go home to wanting to know what he's supposed to be doing, or where he's supposed to be. These questions can be like a blizzard, often only seconds apart, so he's almost forming the words before I've finished answering.

I have a new theory. Does he feel a need to fill the air with his own questions so that he can avoid the need to struggle understanding an answer?

I think you should phone the surgery and explain that you are almost out of tablets and really need some more now. You could still see the GP at the appointment, but do let them know how much you need the medication now.

 

[Lynne rob]

Try googling cap gras syndrome . It's where the suffer looses emotional attachment to a person or their home etc. The bogus person looks exactly like their husband but they have lost the emotion and love. This has happened to my mum. She thinks dad is an imposter who looks exactly like her husband. She also says the house is exactly like hers and constantly asks to go home. She doesn't get that comfy feeling you have in your own home. It's heartbreaking xx

 

[CoffeeBean]

My husband has recently started asking to go home, and gets very upset and agitated because I can't take him home. I've seen good advice on an old thread about COMPASSIONATE CARING, and have written about it on there, but perhaps it will be more prominent on this new thread.

It happens in the evening, when he's tired, and I think it's part of SUNDOWNING. I've tried distracting him, changing the subject, serving a meal,; everything I can think of, but nothing works, he comes back to begging me to take him home NOW.

I know it happens with some sufferers, so it isn't just us, but I'd be interested to know if anyone else has found a way to deal with it,

I've asked him to describe the home he wants to find, and it seems to be his childhood home, but not all the details are accurate( I remember it too) and the people he expects to find there aren't the ones who were there then, but our children, and more recent friends.

Some time ago, he was actually taken back to his childhood home, but barely recognised it, even though he was invited into the back garden and had his photo taken beside the tree his Dad planted.

In some of his more aware moments he's said the place he wants to go to is where he knows his way about, and what's happening.

Any suggestions would be very welcome...

(Medication is another matter, but he'll be starting Citalopram soon.)

Hi Rageddy,
I hope it has become easier for you since you wrote this post.

I have looked after my dad at home for the last 8 years. We went away in the summer for a family holiday, leaving him with a live-in carer. While we were away he started becoming agitated in the evenings, wanting to go home and this continued for a month after our holiday. For Dad, home was 200 miles away, where he lived with his brother (who died at the age of 7). It was very emotionally draining and distressing for him and myself.

There were three things that helped.
One was going out in the car. When we returned home he would thankfully recognise our house accepting it as home.

Another was telling him that his brother had died - evening after evening this was hard, but it did help.

The biggest help in prevention was that I printed a time table each day so that Dad knew exactly what he would be doing each morning, afternoon and evening. My idea was to put his routine in his head before he became fixated on something that was impossible to do. The evening timetable was very detailed and always included a physical activity (such as sweep the carpets) before bed. I would also try and make sure he was in bed before he became too tired - which was 6pm at the latest!

I realise that every person will be different, and it might just have been a reaction to us going away, which may have passed anyway, but I would definitely produce the timetable again if needed.

 

[Cat27]

Welcome to TP Coffeebean

 

[Padraig]

The thought of giving my late wife medication for 'wanting to go home' never entered my head. As far as I was concerned it was part of the course. In my 84th year I can't recall clearly most places I've been and people met. However, I can vividly recall the names of all nuns and civil staff at the institution I spent, from the age of two to ten.

The point I'm trying to make is that the first memories in are the last out. It was not a place I'd wish to return to even for a visit.

The one place I have fond loving memories of as a young lad, was a small town in Co. Durham where I first met my wife. Her home was a warm welcoming place and I could well understand my wife wanting to 'return home' there. Sadly it no longer exists except in my memory.

When this 'part of the course' passes you may find you'll forget about it and be confronted with a new phase. For me we paddled along the 'Alzheimer's river of time' and the boat leaked. None the less I lived in the NOW, till the end.

Sorry if this of no help. I'm thinking it's time I moved on.

 

[underwood]

My husband wanted to go home to his wife. When asked where it was he gave our address but it was not home to him or me his wife. I think home is a place where they remember feeling safe, happy and leading a normal life, not the mixed up frightening world they are now living in.

That is exactly what we find. We have a 93 year old who stays with us, she often 'goes home'. But we have a frank relationship with her and always talk and 'live' this fantasy with her. As such in her mind she takes us 'home'.

It is really quite peculiar, in that when we are 'home' with her it anchors her to the here and now. So she talks to us as though we are going through the door with her. (The only way I can describe it, is like wearing one of those 3D visors, taking part in a game and getting lost in the game, but knowing you are still here' ) But at the same time she says I know it isn't my home anymore, but I like coming here as I feel safe. No one is ever home, she never sees anybody, but instinctively knows they are there. There are also different phases of going home, in that sometimes the door is brown but sometimes Dad has painted it green.

But we have noticed she has 3 distinct 'personality traits' for want of a better explanation. There is little girl who wants her own way, vague and 'with it in the here and now' the vague phase the door is always brown, and the little girl the door is always green.

She has told us that when things 'here' confuse her, she goes there in her mind for safety. She says its like a daydream, sometimes when she is lonely she deliberately walks down the path and opens the door normally falls asleep and in her sleep she dreams of it.

It is a really beautiful place she is in, and she is so happy and safe and comfortable there. Padraig said he didn't want to give his wife medication for this. We feel the same, only because we let her take us there.
Does that make sense?

 

[sleepless]

The thought of giving my late wife medication for 'wanting to go home' never entered my head. As far as I was concerned it was part of the course. In my 84th year I can't recall clearly most places I've been and people met. However, I can vividly recall the names of all nuns and civil staff at the institution I spent, from the age of two to ten.

The point I'm trying to make is that the first memories in are the last out. It was not a place I'd wish to return to even for a visit.

The one place I have fond loving memories of as a young lad, was a small town in Co. Durham where I first met my wife. Her home was a warm welcoming place and I could well understand my wife wanting to 'return home' there. Sadly it no longer exists except in my memory.

When this 'part of the course' passes you may find you'll forget about it and be confronted with a new phase. For me we paddled along the 'Alzheimer's river of time' and the boat leaked. None the less I lived in the NOW, till the end.

Sorry if this of no help. I'm thinking it's time I moved on.

Padraig, your story of the journey along the Alzheimers river is of help.
Whenever I read of you and your late wife I think how wonderful that you found each other, and you were able to enjoy a family life denied you in your childhood.

 

[Padraig]

It good to learn that some find my post of interest. By the way, I'm getting forgetful, I'm in my 85th year. On reflection I can understand why carers find it so frustrating when a loved one 'wants to go home', especially a parent or grandparent.

People of my generation find it difficult to fit into today's world with all the gadgets and new illnesses. We were more at home in a time without TV, phones, except for the red boxes in the street, where you put pennies in and pressed button A. Or then again, button B to get your money back. We valued new cloths especially our Sunday best. So when your loved one hangs on to what you may consider old junk, to the it is of value.

The main reason I came on this site was to share my experiences of looking after my wife all the way. It was a case of learning about Alzheimer's as it unfolded. There was no time to spend on the internet and I've never sought advice from others, nor do I give advice. The following aspects of the illness I learned: 'Wanting to go home' Seeing people that were not there to my eyes. Putting items away in 'safe places' then blaming others for stealing. Double incontinence. Loss of spacial awareness in turn lead to falls, (the most dangerous period). Sudden seizures. Loss of speech, weight and refusal to eat. Rigidity sets in and hands turn in at the wrists. Swollen ankles.
These I dealt with in my own way with some success. In a strange way they fitted into the patten of a jigsaw. For me there were no stages, just an uneven progression where each part slotted into each other.

 

[Rageddy Anne]

I agree that it would be good to have some research into this particular oddity. It seems to be common to so many. John has never been able to memorise the address for this house since we moved in five years ago but believes he still lives in the house with his brothers before we married fifty years ago.

Of course at 82 hardly anyone he ever knew or was related to is still alive. I don't do any of the glossing over of this fact anymore it is just too boring as I've heard it until I'm bored rigid. Strange thing is that once I started being brutally honest about the fact that no one was around for him except me he decided he didn't have to go back to his old house after all.

I'm all out of ideas about this dratted illness.

That's so sad for you both and I can imagine how bored you feel. My husband is always asking for his sister, and sometimes thinks I am her( pardon the grammar) but I don't feel I can keep telling him that she's thousands of miles away and has Dementia, just as he does! So I make up things that she's probably doing....which keeps him happy, especially when I tell him she sends her love. I know it's telling him LIES, and at one time I'd have been very reluctant to do that, but now the lies bring him comfort, and even some peace of mind.

 

[Rageddy Anne]

Try googling cap gras syndrome . It's where the suffer looses emotional attachment to a person or their home etc. The bogus person looks exactly like their husband but they have lost the emotion and love. This has happened to my mum. She thinks dad is an imposter who looks exactly like her husband. She also says the house is exactly like hers and constantly asks to go home. She doesn't get that comfy feeling you have in your own home. It's heartbreaking xx

Isn't that strange? So someone has given that a name, at least. Thanks Lyyne.

 

[Rageddy Anne]

Hello Coffeebean. Thankyou for your insight, and kind thoughts. Our surgery isn't very helpful and I don't feel I can demand medicine when they obviously want us to see the senior GP, who's the expert on drugs.

Two weeks without Respiradol has meant having be more resourceful at finding ways to distract and comfort my husband when he gets so worried and agitated....taking him out in the car does help as a distraction but he doesn't recognise this as home when we return.

A timetable, written larger and larger as time went on, used to help, but now he can't read any more. Apparently, things are badly written or the words are much too small, or the list doesn't make any sense....anything except that he can no longer read.

We have a garden, very overgrown now that we can't do much, but I did get him raking leaves the other day. He can only do anything if I'm beside him to " help", and I get terribly tired, especially as most nights he wakes several times and needs guidance. He also likes watching the baby fish in the pond, but it's getting a bit cold for that.

 

[Rageddy Anne]

The thought of giving my late wife medication for 'wanting to go home' never entered my head. As far as I was concerned it was part of the course. In my 84th year I can't recall clearly most places I've been and people met. However, I can vividly recall the names of all nuns and civil staff at the institution I spent, from the age of two to ten.

The point I'm trying to make is that the first memories in are the last out. It was not a place I'd wish to return to even for a visit.

The one place I have fond loving memories of as a young lad, was a small town in Co. Durham where I first met my wife. Her home was a warm welcoming place and I could well understand my wife wanting to 'return home' there. Sadly it no longer exists except in my memory.

When this 'part of the course' passes you may find you'll forget about it and be confronted with a new phase. For me we paddled along the 'Alzheimer's river of time' and the boat leaked. None the less I lived in the NOW, till the end.

Sorry if this of no help. I'm thinking it's time I moved on.

Padraig, your comments are always helpful and wise. I like your description of the Azheimers river, and the leaking boat.

It seems to me that Alzheimers has two seperate strands, one being the diminishing ability to remember or recognise things, and the other being the state of mind that results from those losses. My husband gets so terribly upset by his confusion and inability to control things. He always took charge, and it worries him terribly now that he can't. His sister, on the other hand, was always relaxed and happy to let others decide, and now that she too has Alzheimer's, she's generally quite happy in her day to day world. So my husband is helped, a little bit, by medicine that helps to lift his mood, while his sister doesn't really need it.

 

[fizzie]

yes childhood 'home' is warm, it is cosy, it is safe and there is always laughter - that is just how it is in my head and when I am old and losing my memory I can't imagine a better place to be - so if you need me, you will know where to find me and I don't expect any of you to tell me it doesn't exist or try to shatter my dreams or memory. I've told you now how it feels and I will love you all if you help me live in that memory when I am old and sad and frightened.