My mother constantly wants to "go home" and keeps packing suitcases

[Daisy Girl]

Hello, I've just registered and am new to this forum where I hope to give and receive advice and support. My mother has Alzheimers and my elderly father is her carer. I live in another part of the country but visit as often as I can and keep in touch with my parents regularly by phone. My mother is still able to clean and feed herself but in every other respect she has lost capacity. She hallucinates, repeats herself, searches, displays inappropriate behaviour and often doesn't recognise family members. Having just spoken to my father, there is one issue at the moment which he needs help with so if anyone is having a similar experience I would love to hear from them. My mother keeps asking my father to "take her home." She doesn't recognise her home as her home and it doesn't matter what response my father gives she doesn't accept that she is home. Consequently, she is constantly packing in preparation to return home. These events are episodic and occur about every 10 days and last a few days before the situation returns to "normal." When "normality" returns my mother wants to know why suitcases have been packed. We have all read the book Contented Dementia and try to use the techniques for managing these and other situations but often they do not work. My father, who has his own health problems, is at his wit's end in relation to the constant "when are we going home?" My mother was always a difficult and problematic person before she was diagnosed and her aggressive personality is one of the reasons why we think she doesn't accept any response given. Can anyone help please?
Thank you....Daisy Girl x

 

[Padraig]

It's a quite common occurrence. The best analogy I can come up with is as memories fade it's like: 'A box of tissues: last one is first out.' Childhood memories are the deepest and often the sweetest. They are of a time and place where they felt safe, loved and understood.

 

[tigerlady]

There is a name for this behaviour - its very common and its called "sundowning". There is probably a thread about it in the forum.

It is one of the most difficult things to deal with and it is impossible to convince the person with dementia that they are at home. Some people find that taking them for a ride in the car and then arriving back at home works. Some find delaying tactics are used - like we'll go tomorrow" or "let just have lunch first". You will probably get suggestions from others who have managed to get through this phase, but there is no way you will convince the PWD that they are at home.

Sadly nothing worked with my husband, and he often used to set off down the road with a few clothes rolled up under his arm, saying he was walking home. When I used to ask him where home was he either said he wouldn't tell me or else it was the place where he grew up as a child. Sometimes he came back - sometimes I had to go looking for him. At night he got really aggressive about wanting to go home, and, when in that mood, he also didn't recognise me as his wife.

Sadly now he is in a care home, and usually when he sees me he says "when are we going home" but he doesn't say it to the carers when I'm not there, and they say he is settled and happy. I am the trigger for him saying that and the home he is referring to doesn't exist

 

[Daisy Girl]

Thank you

Thank you for your reply and suggestions. My father will try taking my mother for a ride in the car as he hasn't tried that yet. He has used, to varying effect, the delaying tactic of "we'll go tomorrow." It's given my father a way forward, particularly as neither of us had heard the term sundowning before but my mother does, indeed, become more anxious and paranoid in the afternoon/evening. Best wishes xxx

There is a name for this behaviour - its very common and its called "sundowning". There is probably a thread about it in the forum.

It is one of the most difficult things to deal with and it is impossible to convince the person with dementia that they are at home. Some people find that taking them for a ride in the car and then arriving back at home works. Some find delaying tactics are used - like we'll go tomorrow" or "let just have lunch first". You will probably get suggestions from others who have managed to get through this phase, but there is no way you will convince the PWD that they are at home.

Sadly nothing worked with my husband, and he often used to set off down the road with a few clothes rolled up under his arm, saying he was walking home. When I used to ask him where home was he either said he wouldn't tell me or else it was the place where he grew up as a child. Sometimes he came back - sometimes I had to go looking for him. At night he got really aggressive about wanting to go home, and, when in that mood, he also didn't recognise me as his wife.

Sadly now he is in a care home, and usually when he sees me he says "when are we going home" but he doesn't say it to the carers when I'm not there, and they say he is settled and happy. I am the trigger for him saying that and the home he is referring to doesn't exist

 

[jalmaj]

I have found that explaining to mum that this is her home, that she has lived their for forty years. Ask her where her home is, then explain her mum is dead as she would be 120, hold her hand when she cries, ask if she likes where she is, and is happy, thank goodness, she says yes, we then have a glass of wine, non alcoholic for her. Large for me, and we do it all again the next day.

 

[canary]

I expect you know that this desire to "go home" is a desire to go back to a time and place when they didnt feel confused and felt safe. Its often a childhood home, but might even be a fantasy place.

I have found that explaining to mum that this is her home, that she has lived their for forty years. Ask her where her home is, then explain her mum is dead as she would be 120, hold her hand when she cries, ask if she likes where she is, and is happy, thank goodness, she says yes, we then have a glass of wine, non alcoholic for her. Large for me, and we do it all again the next day.

Gosh jalmaj, that seems a bit harsh. Im rather surprised that it works for you. I dont think I could bare to make mum cry every day. There is also the point that although they forget what has upset them, they usually remember the emotion. If mum gets upset for some reason, she is anxious all day - even though she cant remember why.

 

[Aisling]

Hello, I've just registered and am new to this forum where I hope to give and receive advice and support. My mother has Alzheimers and my elderly father is her carer. I live in another part of the country but visit as often as I can and keep in touch with my parents regularly by phone. My mother is still able to clean and feed herself but in every other respect she has lost capacity. She hallucinates, repeats herself, searches, displays inappropriate behaviour and often doesn't recognise family members. Having just spoken to my father, there is one issue at the moment which he needs help with so if anyone is having a similar experience I would love to hear from them. My mother keeps asking my father to "take her home." She doesn't recognise her home as her home and it doesn't matter what response my father gives she doesn't accept that she is home. Consequently, she is constantly packing in preparation to return home. These events are episodic and occur about every 10 days and last a few days before the situation returns to "normal." When "normality" returns my mother wants to know why suitcases have been packed. We have all read the book Contented Dementia and try to use the techniques for managing these and other situations but often they do not work. My father, who has his own health problems, is at his wit's end in relation to the constant "when are we going home?" My mother was always a difficult and problematic person before she was diagnosed and her aggressive personality is one of the reasons why we think she doesn't accept any response given. Can anyone help please?
Thank you....Daisy Girl x

It is so difficult. My OH wants to go home daily. It seem to be a common factor with many people who suffer with Dementia. Am so sorry Daisy. Everyone is so different as well which doesn't make caring any easier. What might work for one person on one occasion won't work for the other. Am sure you know all the recommended strategies so well eg distract, make cup tea/ coffee, suggest a task that is manageable, go for short walk if possible, short drive etc. sometimes nothing works.

A suggestion , when Mum wants to know why cases are packed.... Response... Oh goodness I forgot to unpack.... Thanks for reminding me.... Will you help me unpack it?

I have degrees in Divinity and theology and I hate the term love lies. We are not telling any kind of lie in my opinion. A lie is when we try to deseve ( spelling) someone. We are staying with people in their time zone and trying to keep them safe and well.

My first port of call is the doctor. If they is any help at all available, encourage your Dad to shout for help please. Care package ? Admiral nurse? Crossroads? Carers cafe?

Someday, there has to be a total change in healthcare especially when carers health breaks down or when organisations or a few just people lobby and demand change. As carers we don't have time to do this. Health Departments use carers instead of addressing the problems. ( my opinion)

Sending you loads of support.

Aisling ( Ireland)

 

[Padraig]

When it came to my late wife 'wanting to go home' I understood only too well and always agreed to accompany her. My understanding was confirmed when she took off on foot down the main A49 on her way home. Fortunately someone spotted her and told me. I set off by car and slowed up as I approached her, rolled down the window: "Where are to making for?" It was quiet a shock to hear her recite the complete address of where she was born in Co. Durham. Of course I offered to take her there. Needless to say we drove around and chatted about the place, her family and friends there. The whole housing area had been demolished some forty years earlier!

Fortunately I was only too happy to share in those fond memories. We first met when she was a teenager and I in my early twenties in 1952-3. My childhood memories were of detention in the Irish Industrial School system from age two to sixteen. Her family home was my first experience of a warm loving and welcoming family. Thus I was a real pleasure to share in her childhood memories.

It must be near impossible for Daughters and Sons to understand a time and place in the 1940s-50-60 of their parent's childhood home. Communities were close knit. There were few cars, no phones in houses never mind mobile ones, no supermarkets, TV, and some foods were rationed. There was not much welfare in those days but neighbours, family and friends were supportive.
Sorry to drag on, but I find it difficult to get across my mind-set on understanding and choosing to care for my wife on my own.

 

[jalmaj]

I expect you know that this desire to "go home" is a desire to go back to a time and place when they didnt feel confused and felt safe. Its often a childhood home, but might even be a fantasy place.




Gosh jalmaj, that seems a bit harsh. Im rather surprised that it works for you. I dont think I could bare to make mum cry every day. There is also the point that although they forget what has upset them, they usually remember the emotion. If mum gets upset for some reason, she is anxious all day - even though she cant remember why.

I think it is harsh that i had to give up my life to care for her. She cries everyday thinking her mum does not want to see her, i thought the truth was better, she cannot come to see her. Obviously i was wrong, will try the other strategies suggested. Feel really guilty now. More guilt.

 

[jochrisbryan]

When it came to my late wife 'wanting to go home' I understood only too well and always agreed to accompany her. My understanding was confirmed when she took off on foot down the main A49 on her way home. Fortunately someone spotted her and told me. I set off by car and slowed up as I approached her, rolled down the window: "Where are to making for?" It was quiet a shock to hear her recite the complete address of where she was born in Co. Durham. Of course I offered to take her there. Needless to say we drove around and chatted about the place, her family and friends there. The whole housing area had been demolished some forty years earlier!

Fortunately I was only too happy to share in those fond memories. We first met when she was a teenager and I in my early twenties in 1952-3. My childhood memories were of detention in the Irish Industrial School system from age two to sixteen. Her family home was my first experience of a warm loving and welcoming family. Thus I was a real pleasure to share in her childhood memories.

It must be near impossible for Daughters and Sons to understand a time and place in the 1940s-50-60 of their parent's childhood home. Communities were close knit. There were few cars, no phones in houses never mind mobile ones, no supermarkets, TV, and some foods were rationed. There was not much welfare in those days but neighbours, family and friends were supportive.
Sorry to drag on, but I find it difficult to get across my mind-set on understanding and choosing to care for my wife on my own.

Padraig, this so touched my heart, that you made the journey as you would for her without the disease. I chose to care for my Granny and gave up my home, my willing supportive husband came too. I would go to these lengths with Granny, I believe in 'standing in someones shoes' to feel how they feel and it really works for me, she has no memory of some of the good times we share but the warm feelings and that somebody is there for her whatever makes her still feel good.

Daisy Girl, how completely distressing for you and your father, I cannot add to the good advice, bar maybe trying to help her 'get home' by talking about it lots, get clues to it, if its on her mind a and it is real for her, a problem shared with your Dad etc etc, playing a favourite piece of music that may bring her to a time she was with him could help.
Also lessening your Mum's confusion with the packed suitcase. If he is able to time it and unpack it before she gets to the why is it there, know that may not be possible, if it is, it may at least not add to her confusion and his having to explain again.

 

[Daisy Girl]

Thank you

Thank you all so much for your feedback and insights into your own personal experiences. I have spoken to my father and sent him copies of all the replies. He sounded a little better at the thought of trying a few strategies that he hasn't yet tried. Part of our dilemma about my mother wanting "to go home" all the time is that she claims to have had an unhappy childhood with her parents, brother and sister. She doesn't like any of them and her version of her childhood differs greatly from everyone else's who was there at the time. The only time she was happy was when she was visiting or staying with aunts and cousins. Perhaps this is what she is alluding to although again, my understanding is that this was brief, intermittent and her account differs from her siblings. My mother has never really settled anywhere and every time my father has agreed to move - and I'm talking continents - to keep her happy her happiness has been short lived and they've had to move back again or somewhere else. In short, we don't know where "home" is for her. But I will end on a positive note and say thank you for your input - we have new things to try. Best wishes....Daisy Girl xxxxxx

 

[jochrisbryan]

So reading through this, her restlessness and need to get away from one place (experience) has never been resolved. This is common for people without dementia, so a double whammy for her. She is perhaps wanting to get away from her feelings more and its vocalised by home. If she travelled with your Dad and always wanted to come back, maybe its that she does not or will not feel at home anywhere. I wonder if he can maybe record or note what leads up to it, if anything happens just before it that is a change, which in turn leads her to want 'to go home'? Maybe not any of this, but I like to explore this with my Granny and occasionally I can fix a long term issue just by trying different tactics.

 

[Padraig]

There are many reasons why and how I managed to care for my wife on my own. For a start it came quite naturally to me. My upbringing was unconventional in every sense of the word. I pray that I never be visited by Dementia, for where would I want to go at that stage of 'wanting to go home?'

When she took me on in marriage it was not unlike taking on a stray dog that had been abused. When I was free for the first time I snatched offers of help and ran, especially food. With time and patience I was won over, and when you win over a person of that ilk you have a faithful one for life.

Each of us are human animals but many seem to forget that though someone may have lost the ability to speak, there are many other manners of communication and contact. There's sound, taste, touch, smell, these can trigger memories of places and people. The most important communication that cannot be faked are the vibes we put out. In my wife's eyes I may not have been her husband, he was a much younger man, but I know she trusted me. Long after she lost her speech she could answer me: 'yes' or 'no' by a kiss on the lips. A kiss returned was 'yes' and an unresponsive one: 'no'.

For the use of sound I phoned her sisters in Co. Durham so as she could hear the Geordie accent of her childhood.
Here I go again with a long post, but there was so much I learned on how to deal with the many problems I encountered. There was rigidity, swollen ankles, pressure sores, loss of weight etc. etc.

 

[jochrisbryan]

Padraig, maybe its that, my Granny when we are discussing 'going home' is my home, I too had a troubled childhood, she was my constant. She raised me at times, during a troubled first marriage as an adult she was my friend and my safe place and for that I am her faithful friend. I see her still, that woman who cared so deeply for me and if I am patient, I get those rare moments when we connect again. I have a raft of emotions as I try to care practically and she who is private and reserved because of her tough upbringing and generation hates it, rarely she says, you should not have to do this, mainly its irritation that I am 'bothering her'
I love her deeply and I am blessed with her burdens, I cry a fair bit, I ache a lot, my husband has lost me (willingly) to this life, my children are at the end of the queue of priorities as they can manage, lots of love and kisses to them help and its not forever and I think that is what gets me through the long days and nights.

 

[Dothedealnow]

The Mental Health units solution was simple as for the first few weeks until her meds were sorted, my mother used to pack all her clothes and try to scale the fence in the garden. The MH unit has removed all bags and clothes and stored them elsewhere. Also they have her meds sorted so that she has just about stopped Sun Downing.

 

[Padraig]

jochrisbryan,,
Hang in there love will see you through. I was deeply moved by your post. To have such a very special Granny is indeed a blessing. She laid the foundations of who you became and no doubt those values will pass on to your children.

My 'troubled' past has proved to have many positives that have sustained me through life.
There is nothing I take for granted and each day is a new adventure. Yes, I've encountered more than my share of manure dumped on life's pathway. The positive point is put to good use it's provided a rich collection of life's flowers, fruit and veg.

 

[Ellaroo]

My mum who lives with me had a regular habit of most evening putting clothes over her arm, a newspaper and v full handbag, saying its been nice knowing you but i have to go home to mother.
Nothing worked as she would question how i had info that her mum was out, gardening as most people who are buried .
I used to,let her set off and as she has v bad o/a in both knees she would only get to corner of rd and say is it ok if i go tomorrow.
It did last forvseveral weeks and then didnt hapoen every evening and finally it stopped.
It just seemed forever while itvwas happening.
All i can say is hang on and maybe if your dad , like mum came to conclusion himself it could help. Mums mobility isntvas good so sadly through deterioration things stop.
Good luck, xxxxx

 

[Rageddy Anne]

I think it is harsh that i had to give up my life to care for her. She cries everyday thinking her mum does not want to see her, i thought the truth was better, she cannot come to see her. Obviously i was wrong, will try the other strategies suggested. Feel really guilty now. More guilt.

Please don't feel guilty, jamai; you're doing your very best. We all are.

The Sundowning/ need to Go Home seems to be very common, and we all find our different ways to cope. It drives us to the end of our tethers, it's so unbearable, and sometimes it's almost impossible to think they can't understand or remember something.

My husband is constantly thinking he's still at work, with some important project he must oversee, and its almost impossible to cope with. Today he thinks we've missed some target, must catch up with his team, and he must go round to all the neighbours to see if anyone knows anything about it so I'm trying to keep him from rampaging round the neighbourhood. Later, after lunch, he'll be wanting to go home, and we'll probably go out somewhere in the car....once we're on the move it gets easier because he forgets why we're out! But, wherever we are, he's always desperate to be somewhere else.....and as long as I tell him we're just doing this, or that, beforehand, he's not too bad.

Wanting to see his mum is usually best dealt with by saying something like she's busy, but we'll see her later..... Or she can't come just now but sends her love....anything that works....I even repeat things she said years ago as if she said them recently...it gives him a happy moment, because he lives in the moment.

Sending you a big hug....it's so difficult isn't it?

 

[Fiona123]

Wanting To Go Home

Hello, I've just registered and am new to this forum where I hope to give and receive advice and support. My mother has Alzheimers and my elderly father is her carer. I live in another part of the country but visit as often as I can and keep in touch with my parents regularly by phone. My mother is still able to clean and feed herself but in every other respect she has lost capacity. She hallucinates, repeats herself, searches, displays inappropriate behaviour and often doesn't recognise family members. Having just spoken to my father, there is one issue at the moment which he needs help with so if anyone is having a similar experience I would love to hear from them. My mother keeps asking my father to "take her home." She doesn't recognise her home as her home and it doesn't matter what response my father gives she doesn't accept that she is home. Consequently, she is constantly packing in preparation to return home. These events are episodic and occur about every 10 days and last a few days before the situation returns to "normal." When "normality" returns my mother wants to know why suitcases have been packed. We have all read the book Contented Dementia and try to use the techniques for managing these and other situations but often they do not work. My father, who has his own health problems, is at his wit's end in relation to the constant "when are we going home?" My mother was always a difficult and problematic person before she was diagnosed and her aggressive personality is one of the reasons why we think she doesn't accept any response given. Can anyone help please?
Thank you....Daisy Girl x

Hi Daisy I'm new to the Forum too! Our family experienced this last year and after searching the internet we realised it was "Sundowning". It's unusual behaviour and agitation, including shouting, pacing across the room and packing up sweets and belongings to go home. Very sadly it always resulted in crying and sobbing so much and we couldn't to anything to stop this! It was later diagnosed as BPSD - Behavioural and Pyschological Symptoms with Dementia, this is in addition to Alzheimer's. We were so relieved that we got a small dose of medication, which virtually stopped this and then we got a 2nd daily dose agreed. Basically it's given at 12noon and 5pm and the result has been miraculous! I would recommend that you ask your Mum’s GP for a Referral to the Older Persons Physchiatry Team and ask them to do an assessment. It was the best thing we've done! sometimes it can still happen a little but we use delaying tactics and distractions until the wanting to go home passess! There is no reasoning with people in this situation and it really agitates them more if you try and explain they are home. We go along with everything, even to the point of saying yes Dad said it was OK for you to stay here! We either agree or say nothing but keep close contact like holding their hand and comfort them. Also, make sure they're not hungry, thirsty, need the toilet or are in pain and that the room is quite brightly lit! I hope this helps Daisy.

 

[lincs lad]

mr best way to do it no point in lying and large one does you good.

I have found that explaining to mum that this is her home, that she has lived their for forty years. Ask her where her home is, then explain her mum is dead as she would be 120, hold her hand when she cries, ask if she likes where she is, and is happy, thank goodness, she says yes, we then have a glass of wine, non alcoholic for her. Large for me, and we do it all again the next day.