With Dementia, how does my Mum see the world and what does she understand?

[honeybears]

Haven't posted for a while - sometimes I think I have accepted Mum being in full time residential care, and other times I will never accept it even though I know it is right for her and that is all that matters.

I just wish I knew, probably like many others, what Mum is thinking and how she sees the world to try and understand alot of the things Mum says to me.

For the first time since moving into care last August Mum said to me on Saturday 'when can I go home'. When I asked what she meant she said 'cause this isn't where I live'. It came completely out of the blue and when I asked where she wanted to go to see if I could work out in her mind if she was talking about home with Dad which would have worried me more as she has never been able to remember up till now where her and Dad lived, or whether she was referring to where she grew up as a child which wouldn't have worried me so much, she couldn't tell me.

She has never said she wants to go home since moving into care and it completely threw me and is now playing on my mind. Within a couple of seconds the conversation had moved on but all I can think of is why did she say that, why did she say that now, is she trying to tell me something?

Today, Dad visited Mum and he always puts her on the phone to talk to me as it is difficult for me to visit during the working week and she starts pleading with me to go and visit her today even though I told her I would see her tomorrow and I hated having to say I couldn't even though I know she will not remember saying it.

I always wonder and worry what the things that she says to me mean - if I believed everything she said I would worry myself even more so I always try to remain level headed but it is awful to say that I have to dis-believe a lot of what she says and put it down to her state of mind.

The other thing I have to do now when it is time for me to go home after a visit and thank you to someone who posted this suggestion a few months ago is to tell Mum I am going to the car to get her something and then just leave - if I say goodbye it just makes it worse for her so it is easier to let her believe I will be back in a minute as I know a few minutes later she will not even remember me being there.

It is awful to think that I have to lie to my Mum in a lot of the things I say to her and I have to dis-believe alot of what she says purely because of her confused state of mind as most of the time she doesn't make a lot of sense for me to understand her.

Does anyone else experience this?

 

[irishmanc]

Yes, you are quite right. I would love to know how my Dad experiences his world now. He lives in a nursing home but when he is asked where he lives, he says in his boyhood home with his parents (long dead).
I remember once reading that someone in the early stages of dementia described the feeling as if half of their head is missing.
When I leave him, I always say I am just popping out to get something and will be right back. We are only doing this to be kind and not to cause any more unnecessary distress.
I like to think that our parents would appreciate this if they could. We are doing our best and that is all that we can do. Don't be too hard on yourself.

 

[Sianey]

I'm glad I joined here as a lot of the questions asked relate to how we are feeling and some of the answers are spot on.

My mam isn't in a care home yet but respite is being discussed to try. When she was in hospital after her stroke last summer I found just saying I was going to the loo when really I was going home and when I peeped through the ward doors where she couldn't see me I saw her wandering but didn't bat an eyelid as to where I had gone. I think she seemed to be distracted by things as soon as Id gone, and yeah I always wonder how they must feel to be so confused. so I think doing what you do is working ok.