"I want to go home now" ...

Lynne

Registered User
Jun 3, 2005
3,433
Suffolk,England
The above request, when said by a Dementia sufferer to his/her relatives, causes untold anguish and guilt, especially if the patient has just been moved to a Care Home. Yet time & again, I have read here that it turns out to be the patient's childhood home that is being referred to, not the most recent domestic home. Indeed, they say "I want to go home" when they ARE in fact in the family home where they may have lived with their spouse & children for 20 or 30 years! BUT, a lot of families put themselves through Hell, thinking that they are responsible for the distress, when they are not.

The way in which Dementia affects memory means that childhood memories are still sometimes crystal clear, whereas recent weeks & months disappear off the radar quickly. (I'm sure nearly everyone here knows that and are rolling their eyes in exasperation - bear with me, please) Whilst the patient is probably not rationalising this, their meaning is likely to be "I want to be back in a place/time where I felt safe and everything made sense to me". It has very little to do with the physical location they happen to be in now, although I suppose a change of surroundings may trigger the reaction.

Now I have to "declare my colours", in that I haven't experienced personally what I'm writing about here, but offer the logic that it's easier for me to be objective at the moment and, hopefully, having read other people's experiences will help me in the future. My point in posting this thread is that hopefully it may prevent some of the pain and guilt which families getting to this stage go through.

Any comments or confirmation from carers who have been through it?
Or - if I'm talking out of my hat - should I delete this.
I know how annoying theoretical waffle can be and wouldn't wish to be guilty of it myself.
 
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Lila13

Registered User
Feb 24, 2006
1,342
When my mother was in hospital she wanted to go home to the place where we lived before we moved to the house where she lives now.

Well, I'd like to too, that is the home for which I am homesick (after over 50 years) but I know that it would be no use trying to go back, places change.

She also loves the picture which she herself painted of her earliest childhood home, and talked about it to all the people who came along to visit during her first few weeks out of hospital. And she asked us if we could see it "as a 4-year-old child would see it?"

I am afraid she may be homesick for her present house when she does move, but it's a question always of weighing up the pros and cons.
 

DickG

Registered User
Feb 26, 2006
558
84
Stow-on-the-Wold
My wife has continually said over the past two years the she would like to go back to her old home. She will ask "are we sleeping here tonight" or "have we brought enough clothes with us" and a whole variations of the theme. At one stage she became so agitated that I phoned her consultant who arranged to see us within four hours. Mary was prescribed pericyazine which has eliminated the agitation, albeit with minor side effects, although the same questions reccur which can easily be satisfied by explaining that we have live in this house for 31 years.

I have a theory that Mary is not longing to return to a place but rather to a time when she was happy, she confuses a time with a place.

Incidently the side effects of pericyazine that we have experienced is a slight weight gain and slight tremours of the hands especially when holding a full cup or glass.
 

jks

Registered User
Jul 2, 2005
67
West Yorkshire
Hi There

My parents moved house to be near to me in December. Within 3 or 4 days of moving, Dad couldn't remember the old house at all, despite the fact they lived there for decades.

He could, however, remember his childhood home from 70-odd years ago.

He's never, not once, said he wants to 'go home', which I fully expected him to.

Best Regards,
jks
 

Norman

Registered User
Oct 9, 2003
4,348
Birmingham Hades
In my Pegs case it our home that she wants to go to.
This is when we are already sitting in it
This seems to a common "sundowning "as it is known.
She fails to recognise any of the surroundings or anything in the house,but she will give me the address that she wants to go to,it is of course the one that we are at!!
weird.
Norman
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
I think you all say similar really, that its a time in the persons mind that they want desperately to return to, not the actual place. It was the same for my Mum. It's a feeling of being lost and wanting to find the way "home", that's how I would describe it. Sadly, the road has now been closed to our love ones even though they try many detours, they can never manage to find that place of sanctuary. Oh how I hate this ruddy disease! Love to you all, She. XX
 

Lila13

Registered User
Feb 24, 2006
1,342
The time and the people ... where are they all now?

I often want to "go home" when I am sitting in it, I think what is this place? surely I don't live here?

Lila
 

Michael E

Registered User
Apr 14, 2005
619
Ronda Spain
This is the 'condition' Monique is going through at the moment. She wants to go home - to where her Mother and Father are. In fact she wakes at 02.00 or 03.00 and packs her handbag with anything around, dresses then wakes me to tell her which way out of the house..... This sometimes goes on all night... I have of course now locked the front door by key.

Even in the more lucid mornings she still wants to know where her Mother and Father are - why they are not here... She calls out for her mother who may be in another part of the house... And asks when she can go home -

Sometimes I think she confuses me with her mother - other times she perceives me as a 'man in the house' who should leave before her father arrives and is very angry!

I have tried the route of 'this is our house - we own it - your home and we live here together' to be met by a pitying look and 'Are you mad? You need psychiatric help' and suggestions that I leave............ By noon or evening things are normally back to 'normal' except for slightly 'arch' questions like 'where are we exactly' then irritation when I explain... but I suspect some comfort...

OK I have gone on too long - sorry - I confess I do sometimes wonder if there are other issues beside AD going on - maybe aggravated by the AD - but what the hell! Diagnosis is pretty useless unless there is a cure or palliative...

Confess I do not feel hurt or insulted at all by the lack of recognition. I know that it this a 'stage' which will doubtless become something else after a while. It would appear that there are various 'stages' that the sufferer goes throught - they change, apparently as the AD developes.

We are both stuck in this situation and I, at least, know why I am here... Monique has not got the foggiest and is totally lost.. cannot be a bundle of fun and live is so boring, frustrating and frightening for her......

Michael
 

Brucie

Registered User
Jan 31, 2004
12,413
near London
Michael

I remember the stage well, and, even though things have progressed downwards for us, I wouldn't be back there again to see Jan in torment, and me at the end of my tether.

confess I do sometimes wonder if there are other issues beside AD going on - maybe aggravated by the AD
Sounds like AD as I experienced it through Jan.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,643
66
Toronto, Canada
I agree with Dick, I think the AD patients are looking for a place in time when they felt safe and secure, rather than a place in geography.

When my mother would say she wanted to go home, I finally learned to ask her "Where? What address?" That's when I found out she was thinking of the last house she lived in with her parents before she married - that was 55 years ago.

Let's click the heels of our ruby slippers & say "There's no place like home".
 

May

Registered User
Oct 15, 2005
627
Yorkshire
With Mum,'I want to go home' can be anywhere from London.... Mum left there when she was three....to the home she had with her parents before she and Dad married 56years ago. This happens everyday, along with wanting her parents, her Dad was killed out in Eygpt in WW2 when she was 14,her Mum died 39 years ago. Like Monique she 'packs' her handbag, tries to leave,doesn't know us, and all you can do is batten down the hatches and sit it out It's heartbreaking for my Dad, they've been in their current house for 25years...
as She said,
Oh how I hate this ruddy disease!
 

addie

Registered User
Mar 5, 2006
1
north carolina
these past two weeks have been very difficult, my grand is 86 years old and she has dementia but she was never told her daughter at the time took her to a Dcotor who didn't really test her to see where the dementia was coming from. to make a long story short my aunt really want her in a nursing home but my mom and i don't we was hoping for in home care and now because of my aunt saying things thats not true a social worker is involved and she wants what my aunt want (nursing home) grand wasn't never given a option, what about the right to choose? i want someone to tell me do we have the right to other options even if a social worker is involved? because my mom and i want grand to stay with us or stay at home and have home care. my aunt tried to put her in a bad place, we went to vist the home and we was able to walk around in the home with out anyone knowing we were there, aslo we enter a patient room, thats not good and it was so many men living there young and old. grand would have to share a restroom which the door on the other side for the other patient did'nt even lock.

my aunt doesn't care if the place is safe she just want grand gone and i know it's true because she didn't even try other options or look at another place she didn't even ask grand what she wanted. i love grand i want the best for her help!
 

Sheila

Registered User
Oct 23, 2003
2,259
West Sussex
Dear Addie, how very upsetting this must be for you. Is there no way you can sit down and talk it all through as a family? Perhaps you could look at some different homes if the home care is not acceptable to the others? Love She. XX
 

Lila13

Registered User
Feb 24, 2006
1,342
There should be somewhere families can go to talk things through when there's disagreement like that, not just some arranging things behind others' backs. When families get together without an impartial court of appeal there are always some who use force of numbers, money or sheer physical size to get their own way.

When it's child custody cases at least there are lawyers to go to.
 

rummy

Registered User
Jul 15, 2005
700
Oklahoma,USA
addie said:
i want someone to tell me do we have the right to other options even if a social worker is involved?
Hi Addie,
You really need some legal advice. Does your aunt have your grandmothers power or attorney or guardianship? If she has the legal right to make decisions for your grandmother there might not be anything you can do. So get some legal advice and it will help you to know what your rights are. You can also talk directly to the social worker that is involved. Give her your experiences with your grandmother and tell her what you and your Mom are willing to do.
The Alzheimers Association in your area can be very helpful too. They sent a wonderful case worker out to help my folks and give advice in their health and financial matters.
Your Grandmother is very lucky to have such a wonderful caring grandaughter. Take care and good luck..

Debbie
 

Stimpfig

Registered User
Oct 15, 2005
135
Germany/India
A timely post for me

Lynne said:
The above request, when said by a Dementia sufferer to his/her relatives, causes untold anguish and guilt, especially if the patient has just been moved to a Care Home. Yet time & again, I have read here that it turns out to be the patient's childhood home that is being referred to, not the most recent domestic home. Indeed, they say "I want to go home" when they ARE in fact in the family home where they may have lived with their spouse & children for 20 or 30 years! BUT, a lot of families put themselves through Hell, thinking that they are responsible for the distress, when they are not.

"I want to be back in a place/time where I felt safe and everything made sense to me". It has very little to do with the physical location they happen to be in now, although I suppose a change of surroundings may trigger the reaction.

Dear Lynne

What a timely post on this subject for me :) I keep getting logged out of TP and have to constantly request for a new password . Nada has kindly suggested that I take a look at my browser settings. Meanwhile, I am just trying to catch up and while doing so, found this thread. Sheila's and Norman's reply have set my mind to rest for I was planning to actually renovate my mother's childhood house in a now fast growing village in India to accommodate her wish to go home, after our return to India in July. The house, though dilapidated, still exists but the village has grown to a town with a famous university and hotels and restaurants. After reading Norman's reply particularly, I feel it would be the same with mum !

Can't tell you how relieved I am that I needn't really pursue this idea and 'buy trouble' for myself.

Thanks all :)
 

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