My Mum with Mixed Dementia wants to go home

[wyvernred]

Hi everyone.
I'm new to this forum and was recommended this website.

My mum was diagnosed recently with Mixed Dementia at the age of 80 years of age - and although the diagnosis was a shock - but not a complete surprise - I'm mainly taking on the Carer role - although my brother tries to help when he can.

My main concern with my mother is that she keeps saying that 'she wants to go home'. - But the trouble is - that she is at home - she has lived in her house for 50 years - No matter what i say to my mum - she keeps saying that she wants to go home. Im obviously at my wits end what to do ? - Maybe she does need to move home as she's been living in her house for so long - maybe she does need a change of scenery - or maybe its the dementia talking? I am considering a house transfer for my mum as i simply don't know any other way of pacifying my dear old mum.

Does anybody else have this experience with the person they care for that they want to go home constantly?

Any advice or comments - or just a chat would be a big weight off my shoulders

thanks
Jay. x

 

[Spamar]

I want to go home is usually another way of saying I want to be somewhere safe. For most, that means their childhood.
Have you ever asked her where home is? Or who lived there?
It is a phase that passes, by the way!

 

[wyvernred]

Hi Spamar
Thankyou for replying to my post. Yes, i have asked my mum where her home is - it is literally a ten minutes walk from our house - my mum has a special significance with this road as her parents lived there - and she also had a house of her own in the same.

Interesting you say that It is a phase that passes btw - I hope so - it is very distressing for my mum as i am powerless to help her and it breaks my heart to see my mum in floods of tears - mum's diagnosis is still fairly fresh - so im not sure how long this phase of my mum's will last for - i just have to cope with it day by day

 

[Izzy]

Hi @wyvernred and welcome to the forum. I'm sure you'll find it a helpful place to be - there's always someone around to listen.

This kind of behaviour is often called sundowning. You'll find a mention of it in this factsheet -

Sundowning and dementia

Sometimes a person with dementia will behave in ways that are difficult to understand in the late afternoon or early evening. This is known as 'Sundowning'.

www.alzheimers.org.uk

My mum (vascular dementia) used to sundown every day and I'm afraid it never did go away. My husband (Alzheimers) only did it on very few occasions and these tended to be when he was really exhausted.

 

[Shedrech]

Hello @wyvernred
A warm welcome to DTP

What you describe is familiar to a lot of the carers here
Rather than being a comment about her own home it's more a seeking after the comfort and reassurance and familiarity that 'home' means to us all
Some people seem to be looking for their childhood home, with mum and dad to make them feel better... Some are seeking a mythical perfect place to be.... Most want to get back to the feeling that they are well, that all is fine because whether or not they grasp the effect dementia is having on them, they sense something isn't as it was

So an actual move won't change this and may make things seem worse as your mum is at least in a place that is familiar to her some of the time

If this happens in the evening, she may be sundowning, which is an increased level of confusion as tiredness comes on at the end of the day she's spent giving her energy to make sense of her world

You've found a good place to chat about anything that's on your mind so keep posting

 

[Pete1]

Hi @wyvernred, welcome to the forum. As others have said it is fairly common, sadly. It is often due to sun-downing, with my Mum it pretty much started about 4.00pm (you could set your watch by it) where she didn't recognise her surroundings despite living there for 25 years - 'where is this place'. It occurred more frequently when she had a UTI, I am assuming Mum hasn't got any form of infection?

When I used to ask Mum her address at these times she repeated her childhood home. Unfortunately there is no logic or reasoned argument to apply. I found that Mum was concerned that 'the people' who 'owned' the property would return and she shouldn't be there. In the end I just used to say they would good friends of mine and wanted her to look after the property - which worked in the moment.

The main concern is the wandering, unfortunately we eventually took the decision for Mum to go into residential care as she was unsafe. I'm not sure if your Mum is at the wandering stage yet - there are a number of measures that you can take to help keep her in her own property e.g. door alarms, cameras, tracking devices,, inform the Police. What I found was that Mum actually flourished in residential care and was much happier - she had become quite fearful in the evenings in her own property. I wish you all the best - it's a very difficult situation for sure, one I really struggled with.

 

[Poinsetta35]

Hi everyone.
I'm new to this forum and was recommended this website.

My mum was diagnosed recently with Mixed Dementia at the age of 80 years of age - and although the diagnosis was a shock - but not a complete surprise - I'm mainly taking on the Carer role - although my brother tries to help when he can.

My main concern with my mother is that she keeps saying that 'she wants to go home'. - But the trouble is - that she is at home - she has lived in her house for 50 years - No matter what i say to my mum - she keeps saying that she wants to go home. Im obviously at my wits end what to do ? - Maybe she does need to move home as she's been living in her house for so long - maybe she does need a change of scenery - or maybe its the dementia talking? I am considering a house transfer for my mum as i simply don't know any other way of pacifying my dear old mum.

Does anybody else have this experience with the person they care for that they want to go home constantly?

Any advice or comments - or just a chat would be a big weight off my shoulders

thanks
Jay. x

I am also a new member. My husband has Alzheimer’s and without fail every evening
he wants to go home. He gets quite nasty with me because I wont get the car out
he has even put his coat on and gone to the front door. If I ask him where home is
he doesnt know. He is 90 years old and still wants to know where his mother is.
he has always loved our bungalow but now thinks it’s a hotel and we will be going home
soon. We have lived here for 50 years...it’s so frustrating

 

[Shedrech]

Hello @Poinsetta35
Welcome to posting on DTP

Many of us will understand your frustration

Maybe leave off asking your husband anything as it won't really help either of you and if he can't answer he'll become more anxious
If he thinks your home is a hotel, go with that and say how comfortable it is for tonight with everything you need even your own kitchen to make a cuppa and look your favourite biscuit, or something, isn't that lucky... Anything positive you can think of to say will help reassure your husband... and somehow being positive and comforting for dad seemed to help me be calmer so I was kind of setting an example for him rather than us both getting more stressed

 

[Pollyconn]

Hello. I’ve just joined this group purely because of this post.

I care for my 86 year old aunt who Is regularly convinced that she doesn’t live in her home of 35 years but still lives in the house that backs on to her garden, which is where she previously lived. When she’s in this frame of mind nothing will persuade her otherwise. She frequently packs up as many random objects and items of clothing from around her house as she can, stuffs them in to bin bags and carries them off, a couple of bags at a time, and then deposits them on the doorstep of the other house. One day there were so many bags of stuff on the doorstep the poor woman who lives there couldn’t get out. It would be hilarious if it wasn’t so disturbing.

We’ve had a door alarm installed so a responder is alerted if she leaves home after 8pm and earlier this week she was found wandering the streets at midnight with four really heavy bags. This was the final straw, not just because it’s not safe for her to be out and about so late, but because she should be isolated right now. Luckily I was able to get her a place in a care home for two weeks respite while I work out what to do next.

What’s getting to me though is that since I booked her into respite care she has been absolutely fine. Totally lucid with no memory of her wanderings and when I asked her about going out she said she knew she shouldn’t because of the lockdown. I also mentioned her having a few days away and as quick as a flash she figured out I meant a care home and was very upset. She sat for an hour with her head in her hands looking totally miserable. Now I feel like such a mean person and that possibly I should cancel the respite.

Just reading that I’m not on my own with this problem has been strangely comforting.

 

[Just me]

Hello Pollyconn and welcome.
It’s hard knowing if you’ve made the right decision when your aunt seems fine now but from what you say I think you have made the right decision in arranging respite.
There is every possibility that she will not stay like this, she’s perhaps on her ‘best behaviour’ but that can’t be maintained.
I’d take the 2 weeks respite, see how she is and allow yourself time to decide what to do next.

 

[Bunpoots]

Welcome to Dementia Talking Point @Pollyconn

I’m not sure if your aunt has been diagnosed with any sort of dementia but I think you’ve made the right call by booking her into respite with things as they are at the moment. It is possible that she may have had an infection as something like this can cause confusion in the elderly, as can other things like dehydration or vitamin deficiency.

If the regular belief that she lives in her old house begins in the late afternoon or early evening it could be sundowning. Hopefully your aunt will enjoy her time in the carehome and you’ll have a clearer picture of what’s going on and how best to keep her safe for the future.

 

[Pete1]

Hi @Poinsetta35, welcome to the forum. I can totally understand how frustrating it is - there is no point in applying logic and reason, it took me sometime to figure that out. As suggested by @Shedrech staying in the hotel for the night and sorting it out in the morning is probably the best course of action, even if it feels quite strange to say and do. It was the only thing that worked for me. Even if you can convince your husband in the moment that it is your bungalow it will probably be lost five minutes later. Reassurance is the key as often the anger is through his own fear. There is no one solution for all, as I said in an earlier post I managed to understand that Mum's fear was the 'owners' of her bungalow returning and asking her to leave, so I used to say they were friends of mine and wanted her to look after it.....this 'solution' was after many weeks of trial and error, but seemed to work for a while. I wish you all the best, it is such a challenging situation to go through every night, in the end I just had the mindset that it would happen every night and prepare on that basis, on the rare occasion it didn't it was a pleasant relief.

 

[Pete1]

Hi @Pollyconn, welcome to the forum. The same thing happened to my Mum, she became distressed in the evening and would wander out on her walking frame laden with possessions. When she went into residential care (which was something I had fought against) she improved dramatically, she still sun-downed but the fear element was removed as there were carers to comfort and support her. Have you had any feedback from the care home as to how she is at her usual time of confusion? My Mum would always be perfectly lucid apart from the sun-downing, and didn't remember anything from the night before. It may well be that your Aunt isn't lucid at those times but has the carers to support her, and if she goes back to her property you will be back at square one.

As @Bunpoots said if the confusion and wandering is a recent development (it doesn't sound like it though) then it may be due to infection which does certainly cause increased confusion. So it is worth ensuring that there is nothing physical causing increased confusion.

I think I would seek feedback from the carers to ascertain how she is presenting in the home at the times she would usually wander.

All the best, let us know how things develop.

 

[Pollyconn]

Thank you everyone for your replies.

My aunt has vascular dementia which was diagnosed a year ago although she had definitely been displaying signs for a couple of years prior to that. And she does suffer from sun-downing for sure. I hadn’t been able to get carers into her home until a couple of weeks ago as she has a large dog who playfully grabs at people which is interpreted as biting and, understandably, people are scared of him. Two weeks ago we sent him to kennels and she misses him sorely but at least it meant she could have a couple of visits per day from carers. Not that they’ve done much as she refuses their offers of food and drink. Their daily logs just seem to read “had a nice chat”. That in itself though is something although her response is “I don’t need help I just want my doggy back”. Unfortunately though her dog wasn’t being fed properly and badly needed grooming all of which the kennels have taken care of for us.

Sorry if I’ve hijacked this post. It’s just nice to share with people who know what you’re going through ?

 

[Weasell]

As essentially a very truthful person it had taken me a long time to learn the lesson.
Lie.
The technique that works best for me is bumping everything into the future.
yes, we are going to do that tomorrow, next month, next week.
The other technique is distraction.
Oh look is that a woodpecker. ( oh no it’s a pigeon!)
oh dear I put the kettle on and forgot to make the tea!
Oh I think I forgot to buy any bread let’s check!

 

[BeeBeeKent]

My husband has Mixed Dementia, He has been"sundowning" quite a bit & constantly wants " to go home". We've tried explaining he is home but he just get angry & says we don't understand. Last night my son even took him out twice & drove around to see if he recognised "home".
Trying to find out what he wanted I was talking to him about home when I had an idea, I asked if home was where he slept. He said yes. I then asked him to come with me to look at something & took him upstairs. We went in to our bedroom & I said, is this home? He smiled & said yes. He then got undressed & into bed, as I tucked him in he said, " now I am safe". I could have cried. He feels safe in bed, not worried by situations he doesn't understand, & obviously equates safe with home!!
Hope this may help someone else in the same situation. Just have to try & solve all the other problems now,! !

 

[Cat27]

Welcome to DTP @BeeBeeKent
Home is very likely the childhood home where he felt safe. Please keep posting as you’ll get lots of support here.

 

[canary]

Hello @BeeBeeKent
I always think that "home" is a state of mind rather than a physical place - a place where they can feel safe and escape the confusion of dementia. Im glad your husband has found "home" in his bed - that was good detective work on your part!

 

[Sarasa]

For all those with loved ones wanting to go home, an illustration from my mum.
About three or four years ago when it was obvious that things weren't quite right with mum, but we didn't have a diagnosis, she told me that she 'just wanted to go home'. She followed that up with 'I know that's stupid, because I am home, but I'm fed up and want to get away from all this.' I think that neatly explains the idea about going home. Mum still says that, but now she is in a care home she is talking about her parental home in the 1930s where she still thinks her mum and dad are living.

 

[Bunpoots]

For all those with loved ones wanting to go home, an illustration from my mum.
About three or four years ago when it was obvious that things weren't quite right with mum, but we didn't have a diagnosis, she told me that she 'just wanted to go home'. She followed that up with 'I know that's stupid, because I am home, but I'm fed up and want to get away from all this.' I think that neatly explains the idea about going home. Mum still says that, but now she is in a care home she is talking about her parental home in the 1930s where she still thinks her mum and dad are living.

I understood what my dad meant when he wanted to go home but he never expressed it as concisely as your mum.