Here we go again.

[Carabosse]

Mum is on about going home, and 'they' will tell her when its time. I tried explaining that she is at home and not at daycare where there are many elderly people with carers (as its in a local CH) going about, as I think she gets confused between the two. Again I tried explaining that if there are lots of elderly people and other people there then its a CH and they will tell you when its time for going home, if there is just the two of us then you are at home, mum sort of got it but you guessed it, she forgets.
I have asked her where home is thinking it must be a childhood home or somewhere else she has lived, but no its the town we are in.
There was a point earlier in the day when she said she would have to let her daughter know and I wasn't her daughter, that hit a nerve as I didn't think I would hear that from mum for quite some time. I asked her who she thought I was, she asked why, I told her what she said so I told her, she couldn't believe it and that she was stupid, I told her she wasn't stupid just confused due to having Alzheimer's. Then we went down the route of 'I don't have Alzheimer's as I can remember things from long ago', I explained that long term memory isn't usually affected its the short term memory, so things from when she was growing up are fine, anything from today, yesterday, last week etc is affected. I reminded mum of how I explained Alzheimer's to her before, i.e. your brain is like a filing cabinet with many draws, with me the cabinet is in order everything filed neatly away, with mum her filing cabinet is mixed up and she has times when she can't remember something or got confused, that she understands.
Its just this home business, I thought I had sorted it but no. I might put a couple of signs up saying 'this is your home' or 'you are at home', see if that works.
Needless to say, headache again!

 

[Kaylee]

Its a confusing world for mum. We had same with mil she asked to go home and at home thought it was not hers though agreed it had many of her things in it. Sometimes it was easier to distract her get a photo or object and chat about it. Not much help but lovely she has you - some days are better than others. best wishes

 

[Izzy]

My mum had vascular dementia and we had the 'home' business on a regular basis. When she sundowned boy did she sundown! Some days it started as early as 3pm and could go on until 9pm. It would then stop as suddenly as it started. I found that really hard to cope with. Compassionate communication used to fly out of the window regularly. What I found hardest though was when she didn't know me. She used to ask when Isobel was coming. I would say that I was Isobel but she would always say 'but no I mean my Isobel'. She used to think I was her cousin Annie ( who died at the age of about 95 so that was a nice compliment!!). My brother used to come through from Glasgow once a week to spend the day with her. Without fail when he left she used to say 'that's an affy nice laddie - wha is he?'!

I do so sympathise and empathise with you. I found the going home and the not knowing me and my brother the hardest things to cope with.

Much sympathy. xxp

 

[Big Effort]

The fat, the fire and the frying pan

Hello Carabosse,

I am writing to you to let off steam......Mum having a really odd day, and I am supposed to be resting, but hubby had to go and collect daughter, and I HAVE NO PATIENCE right now.

Shriek!! Can you hear it??????????????????????? EEEEaaaaahhhhhrrrrrggggghhhhh.
That is better.

Now to you.
Reading your post, I know what my patient and wonderful husband would say. He'd say this" You mean well, BE, but you talk to much." "Keep it simple, no explanations!"

And Carabosse, my poor stressed daughter (I don't mean you are my daughter, but like me, you are a daughter of someone with dementia, and this one on one disappearance really hurts), you are being so patient and kind and trying to reason.

At times when the penny doesn't drop, if you can, just change the topic. I always try to reason, or at least I have for four years. However Mum is always right, and if she even senses we may be attempting to correct her, or demonstrate that (God forbid) she made a mistake, then we pour oil on the fire. Big flames, less understanding and more confusion.

In latter months, ie 2013, I too have learned to curb details, explanations and so on. Today I was working with her on POA. Had to call the bank. Such mayhem. But she did have to answer some questions to identify herself......... Since then we have had one thing on auto-repeat: "I know we were getting POA but does that mean I have money left."

Now, I have to breathe deep, and get Mum ready for bed. I know she thinks I am a monster and ghastly. She has almost banged the door off its hinges. Why? Just another go on the merrygoround where I tried to answer her in a respectful, reasonable manner. But she is right. She is right, She is right. Bang bang bang. And the saddest thing is no one even suggested she was in the wrong.

Have you ever looked at the Compassionate Communication guidelines? This can be a lifesaver. You are in difficult times, my dear, and I know the waters you are navigating right now. Not alone even if it feels like it!

And now I have had time to consider my anger at Mum's unreasonable response, I think she is concerned because "someone is very ill" (who could that be, isn't she intuitive?), and in her muddle she is even more likely to get the wrong end of the stick again. And I have just put oil on the fire. Thank heavens it is bedtime for her.

A ghastly daughter is about to put a furious mother to bed. Quel horreur! Want to swap? Night night Carabosse. Fret not and don't explain or reason. Simple answers. Rest yourself, hugs BE

 

[Carabosse]

This morning you would think nothing happened yesterday, I must admit I did get a big shock when she said I wasn't her daughter as she has said it before, but when I said 'hello' she would say 'oh it is you' and smile as if to say it was a joke in the first place, this time that didn't happen.
I have read the guidelines but when someone is adamant they are 'going home' its not always easy to stick to them, or try and distract them which I try my best to do, sometimes it works obviously last night was one of those times it didn't. At the moment I suppose i'm glad this isn't on a regular basis it seems to come in cycles, I wonder if the weather has anything to do with it as it was getting overcast a bit from mid afternoon?
Thought I heard some loud noises last night so it was you BE!

 

[Grannie G]

`Going home` and sundowning happen like lights are switched, there is no warning and no reason.

I hated it. We would be sitting peacefully together and suddenly Dhiren would get up and say `I`m going now.`
`Where are you going? `
`I`m going home.`

If it was raining or dark or windy I could sometimes persuade him to go `tomorrow`. Otherwise I would let him go, grab my mobile and keys and follow at a safe distance.

It was a nightmare and my sincere sympathy goes to anyone experiencing it on a regular basis.

Loss of mobility put a stop to him physically `going home` but it didn`t put a stop to sundowning until a different stage in the dementia was reached.

It`s really tough.

 

[Carabosse]

I think i'm going to try and pin point when mum starts sun downing as it might help? The first time mum said she was going home, I said off you go then but i'm glad she didn't as she has a sore leg so I doubt she would have gotten too far.
Its just that no two occasions seem to be the same there is always a different element attached to it, so just when you think you have got things under control something new enters the picture.

 

[1954]

when you think you have got things under control something new enters the picture

I never have things under control! Most of the time I do not try to reason as MIL has no power to follow the line of reasoning. I must say it is worse in the evening or if she is left to just sit and think.........hence for keeping her busy and me talking a load of rubbish most of the day!

 

[Grannie G]

Hello Carabosse

Saying `off you go` is so much less confrontational and ,especially if your mother has some mobility problems , might be the best response.

I know how frustrating it is to think you have a solution, only to be proved wrong the next time.

There is no right answer. x

 

[Carabosse]

What I meant by 'under control' was things working smoothly in the household on a daily basis, mum understanding things and then something new comes into the picture, I will never be able to fully control things and am not daft enough to think I could.
I might just stick to that response but knowing mums determination she would go, so i'll have to play it by ear

 

[Carabosse]

I think I may have found a solution to all of the asking to go home, I wrote on a large piece of paper
'DO NOT ASK TO GO HOME, THIS IS YOUR HOME'.
Mum has asked a couple of times about going home and I have just pointed to the piece of paper, to which she replies either 'oh, of course it is' or 'sorry darling'.
So we shall see how long this works for, forever I hope!

 

[Kate66]

I really related to this thread. I spend so much time with my Mum thinking that this is her holiday home and making plans to "go home", even though she has lived here for 44 years. She also spends most mornings trying to "go to work", which mostly I can deflect, but maybe on those mornings that I cant, I just need to grab keys, mobile and follow too.

 

[stillcaring]

my mum's ok when she's at home, but when we go out, if she's having a bad day she doesn't think it is her home when we get back. Or she asks 'did I sleep here last night?' or 'where have I been?' She thinks she's been away because her things are there but she doesn't remember being there recently. My usual technique is not to go it with her: I write her a note before we go out and leave it for her to find when she goes in - eg tuesday been shopping, hair tomorrow 11.30, will collect you 11.15 - because getting out of the car and getting the house unlocked occupies her and stops her asking the endless questions: then I just wave and drive off. If I go in it usually takes me about 30 minutes to get away and I can't always do that if I have to pick up kids.

that's probably totally irrelevant to those who have posted on this thread already as my mum is probably at an earlier stage, but might help someone....

 

[Carabosse]

I think my mum might be affected by the weather, you know a bit like SAD, as I have noticed when it seems to get darker or rain is due she tends to have an off day otherwise she is fine.
The thing I wrote about going home came in useful yesterday a couple of times, now all I have to do is figure out how to convince mum there are no other people in the house except us, as yesterday I was told that 'they' could hear us. As I have mentioned a few times I think the fact mum goes to daycare and is surrounded by other elderly people she confuses being there with being at home, so not exactly sure what to do with that?

 

[Grannie G]

Our consultant told me to make sure the room was well lit at all times. The lights are on at Dhiren`s home day and night.

The downside is one resident who believes it is her own home, complains about the lights being on because the bills will be too high.

 

[Carabosse]

Our home has good light coming in, and mum has a light on in her bedroom at night. I just wonder what has started her off on all of this, as I said there are times mum doesn't mention going home or other people being in the house for days even weeks, so why now?

 

[Grannie G]

so why now?

Oh if only we knew .

My husband`s moods and behaviours used to change as if lights had been switched on or off.

The only constant was an increase in confusion if he was overtired or had had a busier previous day.

 

[Carabosse]

Mum is in bed by 8.30- 9.00pm and up at about 8am or 7am if going to daycare, she sleeps through the night getting up to use the commode say once maybe twice during the night, so she can't be tired, most of the day she is busy doing her wordsearches, so being tired is not something I had considered. Mum doesn't seem tired, she doesn't try and fall asleep during the day, so her behaviour is puzzling.