Further decline

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
My mum has been in a care home since March this year. She kind of took to it far better than expected & has been joining in with activities which really blew our minds when we heard this was the case & she seemed to be almost thriving as much as she could!

Until now, we have gone back to the dark days where everything is hated & nothing is right & she just cannot be appeased. I feel like banging my head against a brick wall & no matter how much we distract then she still comes back to the same. I fear it is a further decline & mentally speaking she now doesn’t seem to know how to tell the time. Forgets she gets given food. If she is in the lounge, she forgets she has a room upstairs, if she is upstairs, she forgets there is a room downstairs. It’s awful.
 

Jale

Registered User
Jul 9, 2018
1,143
0
So difficult for you to see another decline - this illness sucks
 

yak55

Registered User
Jun 15, 2015
616
0
D
My mum has been in a care home since March this year. She kind of took to it far better than expected & has been joining in with activities which really blew our minds when we heard this was the case & she seemed to be almost thriving as much as she could!

Until now, we have gone back to the dark days where everything is hated & nothing is right & she just cannot be appeased. I feel like banging my head against a brick wall & no matter how much we distract then she still comes back to the same. I fear it is a further decline & mentally speaking she now doesn’t seem to know how to tell the time. Forgets she gets given food. If she is in the lounge, she forgets she has a room upstairs, if she is upstairs, she forgets there is a room downstairs. It’s awful.[/QUOTEDitto Kikki re short term memory, Mum doesn't realise she has been sleeping in her care home room since the end of June! Nightmare that's what it is, xxx
 

Amy in the US

Registered User
Feb 28, 2015
4,616
0
USA
Oh, Kikki, I am so sorry to read your update on your mum.

Any change or decline is so difficult to see. No matter how much I think it won't bother me, or how "prepared" I am for things to change, it's always upsetting.

I also often find my mother's disorientation (to time and place) distressing. I just have to continue to remind myself that as long as she isn't upset, I just have to go with it. I'm a lot better about rolling with the dementia punches when I'm with her, but get upset later.

I think it's really hard, if not impossible, for our healthy brains to truly grasp the damage dementia causes and how that gets expressed. It's hard for me to articulate but likely everyone knows what I mean.

It really is an awful disease and I hate how it affects us all.

I'm sorry you're so upset.
 

DollyBird16

Registered User
Sep 5, 2017
1,185
0
Greater London
no matter how much we distract then she still comes back to the same. I fear it is a further decline & mentally speaking she now doesn’t seem to know how to tell the time. Forgets she gets given food. If she is in the lounge, she forgets she has a room upstairs, if she is upstairs, she forgets there is a room downstairs. It’s awful.[/QUOTE]

My heart goes out to you, it’s just rubbish isn’t it. My Mum is the same she doesn’t understand rooms, making a cup of tea is way beyond her now.
I wish I could but I cannot change anything, I’ve no amazing advice, just wanted you to know you’re not alone.
When read your Mums position and the sadness you are feeling, I could immediately empathise. I so want to change this. X
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
Oh, Kikki, I am so sorry to read your update on your mum.

Any change or decline is so difficult to see. No matter how much I think it won't bother me, or how "prepared" I am for things to change, it's always upsetting.

I also often find my mother's disorientation (to time and place) distressing. I just have to continue to remind myself that as long as she isn't upset, I just have to go with it. I'm a lot better about rolling with the dementia punches when I'm with her, but get upset later.

I think it's really hard, if not impossible, for our healthy brains to truly grasp the damage dementia causes and how that gets expressed. It's hard for me to articulate but likely everyone knows what I mean.

It really is an awful disease and I hate how it affects us all.

I'm sorry you're so upset.

Thank you @Amy in the US i know you totally get it & understand.

The thing is there is all that AND she is getting upset & hard to know what to say to her or do.
I was saying that the dr said she needed to stay here at the home as she is not well but of course she can’t remember that she had seizures. She can’t remember much at all short term although she can remember some longer term things.
I don’t think she was wearing her own clothes yesterday but she made up a story that she had bought them to make over & then got upset about it all.
There really was no consoling her yesterday.
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
no matter how much we distract then she still comes back to the same. I fear it is a further decline & mentally speaking she now doesn’t seem to know how to tell the time. Forgets she gets given food. If she is in the lounge, she forgets she has a room upstairs, if she is upstairs, she forgets there is a room downstairs. It’s awful.

My heart goes out to you, it’s just rubbish isn’t it. My Mum is the same she doesn’t understand rooms, making a cup of tea is way beyond her now.
I wish I could but I cannot change anything, I’ve no amazing advice, just wanted you to know you’re not alone.
When read your Mums position and the sadness you are feeling, I could immediately empathise. I so want to change this. X[/QUOTE]

Ah thank you @DollyBird16 - I am going to email the home & see if anything has happened recently to set her off like this. But I suspect it is further decline. X
 

Bunpoots

Volunteer Host
Apr 1, 2016
7,356
0
Nottinghamshire
I'm sorry you're having such a tough time with your mum. My dad is on a steep decline at the moment so I know how you feel :(

As @Amy in the US says. It is impossible for our non-dementia brains to grasp the way PWD think. I find it extremely frustrating and go from anger to sorrow in the blink of an eye.

The worst thing is not being able to do anything to help, getting angry when faced with such total irrationality, and having to hold it all inside!!

I do a lot of walking away these days..
 

Herewego

Registered User
Mar 9, 2017
92
0
.

My husband does not remember living in our home of 35 years - so know where you are coming from. He can not find his way around, doesn't know where any of the rooms are and can not follow direction, so you have to take him where he wants to go.

He just microwaved a piece of bread (who knows for how long) and had to peel it off the microwave plate, this week he added boiling water to the jar of coffee (thank goodness there wasn't much left in it!), has put milk onto crisps that had been left in a bowl overnight, put crisps into the Splenda container, talks about driving the car (had his licence revoked last year), does not remember that our children no longer live with us, can no longer dress himself, takes off his trousers in the study when he wants to go to the toilet........I could go on.

He was diagnosed in May of last year, but since then it has been a quite steep downhill slope. To look at my OH he would look 'normal' to anyone meeting him and if you did not know, you might think he was fine as he still speaks clearly but all of his conversation is 'not real' or based on anything that actually does or has or will happen. Hence, there is no real conversation as even if you tell him anything what he then comes back with either has nothing to do with what is under discussion or is twisted so no longer it is what you actually said.

My OH has just started (begining of July) going to a day centre and while he initially settled in well, at about the 3rd week he got very irate when he realised he was going again - said he hated the people running it, it was horrible and he never wanted to go again. He was fine with the staff once he went in and it appeared that he was only like that with me, so I got someone else to take him for the next couple of days and now I don't take him every day (others do) and this seems to have reduced (dare I say eliminated?) the resistance and he seems to have accepted that is where he goes.

Your mother reminds me of my MIL (also had dementia) she was always fine with new people, places for about 2 weeks and then she would 'go off' them and not speak to them and for no known reason would be totally anti. She eventually stopped speaking to anyone and in fact was quite compliant.

Can't say I have that much advice to give apart from - don't take it personally - one of my children put it well when her dad was giving me a hard time about the day centre - 'mom', she said, 'you just have to think of it like my daughter, I take her to nursery, she cries when i leave, but I know as soon as I am gone she stops and she actually really likes it there. We know it is good for dad, giving him stimulation and keeping him occupied and he does actually like it, so you just have to know it is the right thing and ignore his protests.'
 

yak55

Registered User
Jun 15, 2015
616
0
@yak55 my mum has definitely lost all sense of reasoning & it is like she is living in her own bubble. She doesn’t really know where she is living, in what city or country.
She just hasn’t got a sense of time anymore. It is really sad xx
Sending a hug Kikki x
 

yak55

Registered User
Jun 15, 2015
616
0
Oh, Kikki, I am so sorry to read your update on your mum.

Any change or decline is so difficult to see. No matter how much I think it won't bother me, or how "prepared" I am for things to change, it's always upsetting.

I also often find my mother's disorientation (to time and place) distressing. I just have to continue to remind myself that as long as she isn't upset, I just have to go with it. I'm a lot better about rolling with the dementia punches when I'm with her, but get upset later.

I think it's really hard, if not impossible, for our healthy brains to truly grasp the damage dementia causes and how that gets expressed. It's hard for me to articulate but likely everyone knows what I mean.

It really is an awful disease and I hate how it affects us all.

I'm sorry you're so upset.
Everything you've just said Amy I feel the same way - hugs x
 

yak55

Registered User
Jun 15, 2015
616
0
no matter how much we distract then she still comes back to the same. I fear it is a further decline & mentally speaking she now doesn’t seem to know how to tell the time. Forgets she gets given food. If she is in the lounge, she forgets she has a room upstairs, if she is upstairs, she forgets there is a room downstairs. It’s awful.

My heart goes out to you, it’s just rubbish isn’t it. My Mum is the same she doesn’t understand rooms, making a cup of tea is way beyond her now.
I wish I could but I cannot change anything, I’ve no amazing advice, just wanted you to know you’re not alone.
When read your Mums position and the sadness you are feeling, I could immediately empathise. I so want to change this. X[/QUOTE]
X
 

Cazzita

Registered User
May 12, 2018
617
0
Hugs to all of you posting here, what an awful things this dementia is. Decline is horrible but the weird thing is that I am waiting for signs of mum's decline and it's happening while I am watching and waiting. The confusion over the simplest of things is maddening and sad. Weirdly though, she has not had any toilet 'accidents' for a week!
Hugs @Kikki21 xxx
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
I'm sorry you're having such a tough time with your mum. My dad is on a steep decline at the moment so I know how you feel :(

As @Amy in the US says. It is impossible for our non-dementia brains to grasp the way PWD think. I find it extremely frustrating and go from anger to sorrow in the blink of an eye.

The worst thing is not being able to do anything to help, getting angry when faced with such total irrationality, and having to hold it all inside!!

I do a lot of walking away these days..

Thank you @Bunpoots & i’m sorry you are facing the same thing. I also find that when you cannot get anything from the PWD then it is best to walk away & try again. I have sent the email to the care home & waiting for a response back. I might also try & get hold of the community psychiatric nurse as she was very helpful last time. X
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
.

My husband does not remember living in our home of 35 years - so know where you are coming from. He can not find his way around, doesn't know where any of the rooms are and can not follow direction, so you have to take him where he wants to go.

He just microwaved a piece of bread (who knows for how long) and had to peel it off the microwave plate, this week he added boiling water to the jar of coffee (thank goodness there wasn't much left in it!), has put milk onto crisps that had been left in a bowl overnight, put crisps into the Splenda container, talks about driving the car (had his licence revoked last year), does not remember that our children no longer live with us, can no longer dress himself, takes off his trousers in the study when he wants to go to the toilet........I could go on.

He was diagnosed in May of last year, but since then it has been a quite steep downhill slope. To look at my OH he would look 'normal' to anyone meeting him and if you did not know, you might think he was fine as he still speaks clearly but all of his conversation is 'not real' or based on anything that actually does or has or will happen. Hence, there is no real conversation as even if you tell him anything what he then comes back with either has nothing to do with what is under discussion or is twisted so no longer it is what you actually said.

My OH has just started (begining of July) going to a day centre and while he initially settled in well, at about the 3rd week he got very irate when he realised he was going again - said he hated the people running it, it was horrible and he never wanted to go again. He was fine with the staff once he went in and it appeared that he was only like that with me, so I got someone else to take him for the next couple of days and now I don't take him every day (others do) and this seems to have reduced (dare I say eliminated?) the resistance and he seems to have accepted that is where he goes.

Your mother reminds me of my MIL (also had dementia) she was always fine with new people, places for about 2 weeks and then she would 'go off' them and not speak to them and for no known reason would be totally anti. She eventually stopped speaking to anyone and in fact was quite compliant.

Can't say I have that much advice to give apart from - don't take it personally - one of my children put it well when her dad was giving me a hard time about the day centre - 'mom', she said, 'you just have to think of it like my daughter, I take her to nursery, she cries when i leave, but I know as soon as I am gone she stops and she actually really likes it there. We know it is good for dad, giving him stimulation and keeping him occupied and he does actually like it, so you just have to know it is the right thing and ignore his protests.'

Oh yes I have observed my mum joining in with other residents & eating meals with them & actually looking like she is having a good time but I know that when she was in hospital with us then she would show a completely different side to us. It was like she had total schizophrenia & heck maybe that is also what she has!
We didn’t take the hate thing too seriously but it is interesting that it has come out now when she has been in the care home since March!
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
My heart goes out to you, it’s just rubbish isn’t it. My Mum is the same she doesn’t understand rooms, making a cup of tea is way beyond her now.
I wish I could but I cannot change anything, I’ve no amazing advice, just wanted you to know you’re not alone.
When read your Mums position and the sadness you are feeling, I could immediately empathise. I so want to change this. X
X[/QUOTE]

Thank you @yak55 & yes I know that i’m not the only one in this position & this slow torture process for the PWD & that yes you would wish that the clocks would go back but you know they won’t. Sending you big hugs also xx
 

Kikki21

Registered User
Feb 27, 2016
2,270
0
East Midlands
Hugs to all of you posting here, what an awful things this dementia is. Decline is horrible but the weird thing is that I am waiting for signs of mum's decline and it's happening while I am watching and waiting. The confusion over the simplest of things is maddening and sad. Weirdly though, she has not had any toilet 'accidents' for a week!
Hugs @Kikki21 xxx

Thank you @Cazzita - my mum had a very steep decline when she had several seizures in December. Before that time, she would have declines every 3 months or so. We have not seen such steep declines since that point but now it is very much general confusion & I fear that another larger decline is only round the corner. I have said before that I think it is because she is now in a care home that this has actually extended her life because if she had gone home then I think she would no longer be with us. Every day, I kind of dread getting a phone call saying she is ill or worse. Xxx
 

Cazzita

Registered User
May 12, 2018
617
0
Thank you @Cazzita - my mum had a very steep decline when she had several seizures in December. Before that time, she would have declines every 3 months or so. We have not seen such steep declines since that point but now it is very much general confusion & I fear that another larger decline is only round the corner. I have said before that I think it is because she is now in a care home that this has actually extended her life because if she had gone home then I think she would no longer be with us. Every day, I kind of dread getting a phone call saying she is ill or worse. Xxx

Aw @Kikki21, that is so sad. I am dreading the declines as I guess we lose a another part of the person we know and love. So sad all round. Take care of yourself in all this xxx
 

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