I want to come home with you ....

[Royalslady]

My mother has been saying this quite a lot lately. She has vascular dementia and has been in CH since end January. She gets very agitated and quite aggressive at times and just pleads with us to take her home. This doesn't happen at every visit. For example, when my sister visited yesterday, Mum wouldn't even talk to her and just kept turning her head away.

Please could you give me your tips on how we deal with this? I usually say that I have to go away on business and that she is safe there and it is all paid for, etc. The trouble is she will ask us this question repeatedly for over an hour during a visit. Is it best to cut the visits short when they go along those lines?

Sadly the 'bad days' are outnumbering the 'relatively good days' right now. I could cope with anything she throws at me if only I knew she was at peace inside - but she is just so agitated and unhappy.

 

[Grannie G]

Hello Pat

It`s heartbreaking I know when this happens. Your mother only repeats her plea because ,like everything else, she will have forgotten she has already asked.
Do you think you could say you`ll try to arrange it with the doctor? I suppose it will depend how bad her memory is whether or not it would work. I know it`s untruthful but if it eases her mind, even for a short while, it`s justified.
Or you could say when you retire from work and will be at home to look after her.
I hope others will have better suggestions.

 

[BeckyJan]

HelloL

Well you have my sympathy as it is my daily agony! My husband has been in a NH since mid December - he daily 'wants to come home'. Can I blame him - although he sometimes thinks the NH is our home and does not remember our home in photos.

I explain, repeatedly, every day that he is there for convalescence eek and I am not strong enough to nurse him at home for 24 hrs - explaining that he has got problems overnight and that he does forget by morning.

At the time of explaining he accepts the situation, then minutes later we start again.

It hurts because I would like him home - but it is physically impossible for me to handle him both day and night.

There is a part of me that wishes he were less aware so that I (and he) did not have this torment to handle.
It seems such a terrible 'end' to a wonderful marriage.

Not sure about tips as each day is different. I always take in a photo album which detracts a little.

Best wishes Jan

 

[ella24]

Hi Pat

My gran went through a short phase of this type of behaviour - and yes we did make visits shorter for a while (but more frequent) so that she associated us both with going and also coming back. (Gran thought she was being 'left there'). We also went at different times of day - and her mood was different at different times of day (evenings were tricky)

We found that her mood depends on where she is - in her room she can get a bit maudlin and alone - the carers identified this too and encourage her to spend time in the lounges and around people.

Other things - we became almost Mary Poppin-like in positivity - gran picks up on verbal and non-verbal clues and will respond accordingly - so if we are up-beat she is the same (and we avoid visiting if we are not as positive as we can be).

We also found things to distract and keep her upbeat during visits (on different occaisions I took my cat, my nieces, new books/magazines, a planter and plants for her to fill with me when I visited - in fact anything to keep the talk away from 'going home' - after a while she kind of 're-programmed' a bit and settled and we have more good than bad visits at the moment.


lots of luck

e

 

[Royalslady]

We also found things to distract and keep her upbeat during visits (on different occaisions I took my cat, my nieces, new books/magazines, a planter and plants for her to fill with me when I visited - in fact anything to keep the talk away from 'going home' - after a while she kind of 're-programmed' a bit and settled and we have more good than bad visits at the moment.

Ella ... it sounds like you have been a wonderful granddaughter and it is good that your Gran has responded so well. I like the planter idea - Mum loves gardening. Will give that one a go (just hope I don't end up wearing it!!)

There is a part of me that wishes he were less aware so that I (and he) did not have this torment to handle

Jan - I totally understand where you are coming from here. I do not want to wish for my Mother's condition to deteriorate any quicker than it already is, but I see other residents in the home blissfully unaware of certain things and they appear quite calm. My Mum seems to be having all sorts of anguishing thoughts running through her mind.

Or you could say when you retire from work and will be at home to look after her.

Thank you Syliva - I will try that one!

 

[Helen33]

Hello Pat

It could be that even if your mum did come home with you she would still be wanting to go home. I sometimes wonder whether going home means something like "I want to feel comfortable and safe" like, ideally, a child would feel when at home with a caring family? The ones we care for seem to have periods of not being at ease because of the dis-ease and our nightmare is having to live with knowing that we can't make it better

Here I am rambling Pat when really I just want to say "I am so sorry" and give you a (((HUG)))

 

[Royalslady]

Hi Helen

Thank you for your post - I have thought this too. I know that when Mum was at home, before moving into the CH, she was also asking to go 'home' or go out or just go somewhere! She just didn't settle anywhere, and didn't like being in her own home either.

I can't be reminded enough of how the disease can cause this, so please ramble away Helen - it really does help and thank you for the HUGS - bless you.

Pat x

 

[Margarita]

It could be that even if your mum did come home with you she would still be wanting to go home. I sometimes wonder whether going home means something like "I want to feel comfortable and safe" like, ideally, a child would feel when at home with a caring family?

I wonder that also, as I always read that .

My mother also got VaD


My mother in respite, I would love to visit her but I know soon as my mother see me she thinks she been coming home with me . As my mother still has Awareness that seeing me is " Home " I am her home .

It could be anywhere, I could live anywhere in this wide world as soon as mum see me , she wants to come home with me .

I feel so emotional torn as I know mum will torment herself in not being able to come back home, when I leave mum in care home permanently , as my mother does ask the care home staff

" When is my daughter coming to pick me up "

I do wish I could give you some advise but I don't have any . Then Just tell you how I must I understand what your going through.


Just wondering Have you ask the staff does your mother ask them when is she going home Or I want to go home

when your not around ?

 

[Canadian Joanne]

There is a part of me that wishes he were less aware so that I (and he) did not have this torment to handle.It seems such a terrible 'end' to a wonderful marriage.

Mum did become less aware but she seemed to escalate in aggression. Now she truly is unaware and laughs and smiles a lot. I find it much easier in some ways visiting her now as she seems happy. Before, I had to gather up my courage & wade into being sworn at, swung at and all sorts of lovely stuff.

Although she's happy and things are easier for me, every now and again I feel heartsick, because in reality my mother is gone. She hasn't known who I am for probably around 2 years but I think my face is vaguely familiar. She smiles when she sees me and that has to be enough now.

Pat, one thing I'd like to reinforce - when my mother was asking to go home all the time, I realized she meant the home she lived in with her parents in 1950 or so. I've said this before but I think it bears repeating - they are not looking for "home" as such, they are looking for a place where they feel safe and secure. Unfortunately that place doesn't exist.

 

[Margarita]

I've said this before but I think it bears repeating - they are not looking for "home" as such, they are looking for a place where they feel safe and secure. Unfortunately that place doesn't exist.

they are looking for a place where they feel safe and secure. Unfortunately that place doesn't exist.

May be I being to idealistic, but that place does exist, in showing love affection to someone who can not give it anymore .

They was an elderly lady that ask all the time when she woke up.

I want to go home ?when am I going home ?

one of use would hold her hand rub it slowly , telling her you are home , she tell me am I dear ?

one of use would keep holding her hand , which made her, feel safe and secure.

So like you say Jo .

When you've seen one person with Alzheimer's, you've seen one person with Alzheimer's

 

[evedan]

Royalsady

I have the same thing said to me when I visit my mum who is still in her own home. But says she does not want to be on her own anymore but in the next breath quite adamant that she does not want to go into a home she wants to stay in her own home for as long as she can....so I am in limbo as what to say..I know she wants me with all the time but I visit every 3wks as I live 200miles from her. In the end I say to her I will be back again in 3wks and leave it at that. It's very hard!!!!So I sympathise with you.

EVE.

Alzhiemers is not the end of the world.
Just the start of another one..

 

[taylorcat]

My Mum also used to say this quite a lot and yes, it is very upsetting. I used to tell her we would do that tomorrow which seemed to calm her down.

As has been said above, unfortunately even if she were home she would still say she wanted to go home.

 

[librarygirl]

librarygirl

My Mum has vascular dementia. She has been in a care home for a year. When she was at home (we always lived together - I am 47 now) she said and did very strange things, she kept wanting to go home and packed her things to go. I said Mum, you are at home. She would wander off up the road with her arms full of her belongings. We had carers come in for a while, but this wasn't enough. Now she is in the home, every time I go, she wants to come home and be with me. I say Mum, I have to work, and I am not there to look after you. I love her very much and it is heartbreaking to leave her upset. I take her out in the car to the park or garden centre, and she loves that, but when I take her back and have to leave her, she gets upset. She says her Mother visits her sometimes, and she thinks I am her sister or husband quite often. Am I doing the right thing in leaving her there? I feel so terribly guilty and wicked. We have always been so close. Some months ago, she said to me "I've cried and cried", and "I loved my life". This is particularly heartbreaking. But I know I couldn't leave her alone at home anymore, she has already had several falls, and also, if I took her home now, she would probably still want to go home. She ofteh talks about home being where she lived as a child. She says "I will go home to mother". Is this usual behaviour? Should I bring her home for a visit, or would this upset her more? Thanks for any advice.

 

[Canadian Joanne]

Librarygirl,
Please, please don't feel upset and guilty. You've answered yourself by saying

We had carers come in for a while, but this wasn't enough.

Eventually, although it may not happen soon enough, she'll stop asking. My mother went through phases of wanting to visit her mother (who died in 1970) and I would say "Yes, let's do that tomorrow" and that worked.

You're doing the very best you can. Your expectations for yourself are probably unrealistic. These moments come but they will go also.

Take care.

 

[librarygirl]

libraygirl

Thanks for your kind words.

 

[Margaret W]

Hi Royalslady, how long has your mum been in the Home? People told me it would take mum 6 weeks to settle, but it took 6 months. The early weeks were okay cos she thought it was temporary. Then she got fed up of it, wanted to be cooking, cleaning and washing for herself and declared she was going to "look for a little flat for myself". I didn't handle that right at all,not sure how I should have handled it. Over time, the need subsided, and after 6 months she was fairly happy in the Home. Never fully happy, she always had a hankering to do her own housework, which had been her life. But she wasn't unhappy there either.

Not a lot you can do. Stick with it, and see how she goes.

Sorry, not a lot of help.

Love

Margaret

 

[erm]

A few ideas

Hi Pat (Royalslady),

We both joined this site back in January and four months on we both seem to still be in a similar situation. My mum has now been diagnosed with dementia and is in a NH. She isn't asking to go home but has become very clingy and wants me to stay at the home with her. She is also repeating the same questions over and over again and making herself very anxious in the process.

My visit last night was very upsetting, I stayed longer than I anticipated because I had to go through her care plan and feel that shorter visits might be the answer. It's difficult to leave but I'm going to try to keep my visits to an hour and see how that goes. A long chat with the Home Manager last night helped me a lot, hopefully you have the same support at your mum's home. The Manager suggested finding ways of distracting mum, not easy because mums sight is bad, but I'm going to try perhaps playing CDs if I'm with her in her room.

I'm also going to try seeing her in the lounge instead of on her own in her room because I think she might behave differently in a room full of others.

Maybe these are things you could try to see if it will get your mum away from the dreadful going home question.

Best Wishes

Linda (Erm)

 

[Meldrew]

I don't claim ownership or credit for the following (pinched from the Alzheimer's Society database) but it might be helpful for some folk and, of course, by no means will all or any of it, be suitable for all. Apologies if some of these ideas have already been suggested.

Wanting to go home
It is not uncommon for someone with dementia in residential care to repeatedly express 'I want to go home'. This can be particularly distressing for carers. The person with dementia may want to ‘go home’ because of feelings of anxiety, insecurity, depression or fear. Using the term 'home' may describe memories of a time or place that was comfortable and secure and where they felt relaxed and happier. 'Home' could also invoke memories of childhood or of a home or friends who no longer exist. ‘Home’ can also be an indefinable place that exists only in a dwindling memory. The desire to go home is probably the same desire anyone would have if we found ourselves in a strange and unreasonable place.
--------------------------------------------------------------------------------

Approaches you could try and points worth considering:

First, try not to argue about whether this is 'home'. If he or she doesn't recognise it as 'home' at that moment, then for that moment it isn't home.

Try to understand and acknowledge the feelings behind the wish to go home
Often when a person with dementia asks to go home it refers to the sense of home rather than home itself

Reassure the person with touching and holding. Assure the person that they will be safe

Keep a photograph album handy for a diverting conversation. Sometimes looking at pictures from their past and being given the chance to reminisce will ease feelinga of anxiety. Avoid asking questions about the picture or the past. Instead try making comments: 'That looks like Uncle Fred. Granny told me about the time he....'

Try to divert the person with food or other activities, such as a walk
Don't disagree with them or try to reason with them about wanting to go home

Try to find out where ‘home’ is for them – it might not be the last place they lived. It could be where they lived before moving recently or it could be somewhere from their distant past

Often people with dementia describe ‘home’ as a pleasant, peaceful even idyllic place where they were happy. Encourage them to talk about why were they happy there?

Is the person with dementia happy or unhappy now? If they are unhappy, is it possible to discover why? If they cannot tell you why, perhaps a member of the staff or another resident knows why

Sometimes what one member of the family really wants (to go home) would have an adverse effect on the rest - what are the real choices?
The balance of what is the right will differ from family to family and from individual to individual

Each family, or individual can only provide the care they can provide
Sometimes people feel that once they are no longer the primary carer for someone, they can return to being ‘just’ a spouse or child and having a normal relationship back

Provide lots of reassurance that, although the person may be living somewhere different from where they lived before, you still care about them
Does the person with dementia keep talking about going home when people are not visiting them in the care home?

Does he or she seem to have settled otherwise? Ask the staff in the home

Keep a log. You might find that certain times of the day are worse than others. What is the common denominator about these times? Is it near mealtimes (a snack might help). Is it during times when the environment is noisier than usual? Is it later in the day when shadows are encroaching? If you see a pattern, you can take steps to lessen or avoid some of the triggers.

Like other people, someone with dementia may take out their bad mood or bad day on the people closest to them

 

[Royalslady]

Thank you everyone for your replies and advice. I will certainly give some of those things a try!

Mum is giving me the cold shoulder at the moment when I visit, but that won't stop me! I am keeping the visits fairly short at the moment but regular. Unfortunately her aggression has returned, and she has punched two carers in the past few days. I am worried that if this continues they won't be able to let her stay

Upping the meds, keeping fingers crossed that works - if not, then not sure what comes next!

 

[Grannie G]

To all whose dear ones are in residential care

My husband is at home with me and almost every night he too wants to `go home`.
There have been many, many posts on the Forum in the same vein, about those who want to go home whilst still living in the same family home for years.
There is no guarantee your dear ones would not still want to `go home` if you brought them home, so please try to stop agonizing over the repeated requests.
I know it`s all about guilt, but it will not be a solution.
It`s just another symptom of the dementia which tortures carers and sufferers alike.