I really don't like the person dementia has made my mum

gm1632

Registered User
Jan 7, 2021
16
0
Hi,
My mum was diagnosed with Alzheimer's dementia in December. She is still very physically capable but has trouble communicating, and often gets frustrated/angry with me and other family members when we either try to help her find words, or when we don't help enough. She also has quite bad mood swings and can be very uncommunicative. Other times I swear she looks at/talks to me like she hates me. I know it's not 'her', it's the dementia, and other times she is lovely. But sometimes, though I LOVE HER TO BITS, I really, really, do not LIKE her at all. And I know many people have this with family members even if they don't have this horrible disease, but at least if you don't like a family member who doesn't have a condition like dementia, you can blame it partly on them being a flawed human being, just like everyone else. Maybe this isn't fair, but I sometimes feel like dementia is a 'carte blanche' for people to be horrible, even though obviously they are not deliberately trying to be horrible. It's just really hard sometimes. The worst is what I call 'victim mode' when she believes everyone and everything is out to get her, even though we're all (family) just trying to help. It really pushes my buttons, even though logically I know she can't help it.
Is it normal to feel like this? Has anyone else experienced the 'victim' thing? I mean, I know they ARE victims (of dementia) but it's like to her, the people around her (me and my dad mostly) BECOME the physical manifestation of it.

Thanks,
G.
 

CardiffGirlInEssex

Registered User
Oct 6, 2018
356
0
@gm1632 you have expressed very eloquently almost exactly how I feel about my mother! I think one of the hardest things about this disease is that those with it often behave worst towards those they are closest to. The things I and my father get accused of are breathtaking, and we know it is the illness not a deliberate nastiness, but boy is it hard to take. So I would say yes, this is not at all an unusual response to your situation. And it is really hard, but through this site you will get lots of support from others who have been or are going through very similar experiences.
 

gm1632

Registered User
Jan 7, 2021
16
0
@gm1632 you have expressed very eloquently almost exactly how I feel about my mother! I think one of the hardest things about this disease is that those with it often behave worst towards those they are closest to. The things I and my father get accused of are breathtaking, and we know it is the illness not a deliberate nastiness, but boy is it hard to take. So I would say yes, this is not at all an unusual response to your situation. And it is really hard, but through this site you will get lots of support from others who have been or are going through very similar experiences.
This is so reassuring to hear. My mum and dad have had some issues in the past, and she brings it all up again and accuses him of stuff, so I know what that's like too.
 

Weasell

Registered User
Oct 21, 2019
1,778
0
Hi,
My mum was diagnosed with Alzheimer's dementia in December. She is still very physically capable but has trouble communicating, and often gets frustrated/angry with me and other family members when we either try to help her find words, or when we don't help enough. She also has quite bad mood swings and can be very uncommunicative. Other times I swear she looks at/talks to me like she hates me. I know it's not 'her', it's the dementia, and other times she is lovely. But sometimes, though I LOVE HER TO BITS, I really, really, do not LIKE her at all. And I know many people have this with family members even if they don't have this horrible disease, but at least if you don't like a family member who doesn't have a condition like dementia, you can blame it partly on them being a flawed human being, just like everyone else. Maybe this isn't fair, but I sometimes feel like dementia is a 'carte blanche' for people to be horrible, even though obviously they are not deliberately trying to be horrible. It's just really hard sometimes. The worst is what I call 'victim mode' when she believes everyone and everything is out to get her, even though we're all (family) just trying to help. It really pushes my buttons, even though logically I know she can't help it.
Is it normal to feel like this? Has anyone else experienced the 'victim' thing? I mean, I know they ARE victims (of dementia) but it's like to her, the people around her (me and my dad mostly) BECOME the physical manifestation of it.

Thanks,
G.
Such an articulate post.
Yes we know..
many won’t choose to communicate on this subject.
what you have written confirms ‘you are not alone’
which can provide comfort to people who feel it is them that are failing , rather than them being victims of circumstance .
 

angelict

Registered User
Jan 16, 2020
154
0
It is hard please take a step back for yourself the PWD can say things but sometimes to fills gaps it's confabulation you will always get advice and information from this lovely forum.
 

lemonbalm

Registered User
May 21, 2018
1,799
0
Lot of us here understand @gm1632

If only dementia were always, as it is so often portrayed, just a matter of bobbling along in a sweetly confused state.
 

angelict

Registered User
Jan 16, 2020
154
0
Yes it's the club noone wants to join everyday is a rollercoaster and you have to learn to go along on that ride with your PWD.
 

Catastrophe

Registered User
Feb 15, 2019
77
0
Your words resonated strongly with me. It's so hard to accept this person who used to be my Dad. And the saddest part is that what he is now is what will stay in my memory, rather than the generous helpful healthy person he used to be. I am here caring for him because of the person he was not the person he is now. Dementia is a very cruel disease.
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Your words resonated strongly with me. It's so hard to accept this person who used to be my Dad. And the saddest part is that what he is now is what will stay in my memory, rather than the generous helpful healthy person he used to be. I am here caring for him because of the person he was not the person he is now. Dementia is a very cruel disease.
@Catastrophe I used to worry about that but since dad died almost a year ago I have explored his life through old photo's and memories and I have my old dad back in my memory. Clearing his house slowly helped a great deal as I came across different things that reminded me of how he was before the dementia.
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
Hi,
My mum was diagnosed with Alzheimer's dementia in December. She is still very physically capable but has trouble communicating, and often gets frustrated/angry with me and other family members when we either try to help her find words, or when we don't help enough. She also has quite bad mood swings and can be very uncommunicative. Other times I swear she looks at/talks to me like she hates me. I know it's not 'her', it's the dementia, and other times she is lovely. But sometimes, though I LOVE HER TO BITS, I really, really, do not LIKE her at all. And I know many people have this with family members even if they don't have this horrible disease, but at least if you don't like a family member who doesn't have a condition like dementia, you can blame it partly on them being a flawed human being, just like everyone else. Maybe this isn't fair, but I sometimes feel like dementia is a 'carte blanche' for people to be horrible, even though obviously they are not deliberately trying to be horrible. It's just really hard sometimes. The worst is what I call 'victim mode' when she believes everyone and everything is out to get her, even though we're all (family) just trying to help. It really pushes my buttons, even though logically I know she can't help it.
Is it normal to feel like this? Has anyone else experienced the 'victim' thing? I mean, I know they ARE victims (of dementia) but it's like to her, the people around her (me and my dad mostly) BECOME the physical manifestation of it.

Thanks,
G.
The first thing that raised red flags for me about my husband was his paranoia, not with other people just me. I was out to get him, I ridiculed him, I hid things from him, I lied about him, etc etc etc. He believed completely that I was victimizing him. It was an absolute nightmare because I didn't know what was going on with him and of course, there was nothing wrong with him but I was the one who needed to have their head read.

Medicationion took the edge off the paranoia but didn't stop it totally and he was going well for almost six years. Sadly, in spite of increased medication he has deteriorated a lot in the last few months and the paranoia is now raging again.

Your mum's diagnosis is quite recent and the only advice I can offer is to grow a crocodile skin. - thick and tough. I hope things improve for you soon.
 

angelict

Registered User
Jan 16, 2020
154
0
The first thing that raised red flags for me about my husband was his paranoia, not with other people just me. I was out to get him, I ridiculed him, I hid things from him, I lied about him, etc etc etc. He believed completely that I was victimizing him. It was an absolute nightmare because I didn't know what was going on with him and of course, there was nothing wrong with him but I was the one who needed to have their head read.

Medicationion took the edge off the paranoia but didn't stop it totally and he was going well for almost six years. Sadly, in spite of increased medication he has deteriorated a lot in the last few months and the paranoia is now raging again.

Your mum's diagnosis is quite recent and the only advice I can offer is to grow a crocodile skin. - thick and tough. I hope things improve for you soon.
What meds was he prescribed for this?
 

Lawson58

Registered User
Aug 1, 2014
4,333
0
Victoria, Australia
What meds was he prescribed for this?
Originally he was put on to donepezil but it upset his tummy. So then he went on to rivastigamine which comes as a daily patch and he has been on that for several years. With the downturn in his health, he has also been put on to mirtazapine which has helped with his sleep and appetite but I don't think it has helped with his mood.

He takes a lot of other medications for his heart failure and also has an implanted defibrillator so it's quite complicated.
 

angelict

Registered User
Jan 16, 2020
154
0
Mental health tried my Mum on Donepezil it was awful she had no motivation and she wasn't eating they then offered her the rivastigmine but she's not on it so they told me not taking anything well discharge her which they did my Mum has a track record of urine infections they did visit again four months ago and they suggested a low grade antibiotic no courtesy call to see how she is or anything she has a Vasc Alzheimer's diagnosis I have contacted the pals team about that specific service as you are basically left to it but the gp is very good.
 

Maddiebd

Registered User
Oct 27, 2020
32
0
Hi,
My mum was diagnosed with Alzheimer's dementia in December. She is still very physically capable but has trouble communicating, and often gets frustrated/angry with me and other family members when we either try to help her find words, or when we don't help enough. She also has quite bad mood swings and can be very uncommunicative. Other times I swear she looks at/talks to me like she hates me. I know it's not 'her', it's the dementia, and other times she is lovely. But sometimes, though I LOVE HER TO BITS, I really, really, do not LIKE her at all. And I know many people have this with family members even if they don't have this horrible disease, but at least if you don't like a family member who doesn't have a condition like dementia, you can blame it partly on them being a flawed human being, just like everyone else. Maybe this isn't fair, but I sometimes feel like dementia is a 'carte blanche' for people to be horrible, even though obviously they are not deliberately trying to be horrible. It's just really hard sometimes. The worst is what I call 'victim mode' when she believes everyone and everything is out to get her, even though we're all (family) just trying to help. It really pushes my buttons, even though logically I know she can't help it.
Is it normal to feel like this? Has anyone else experienced the 'victim' thing? I mean, I know they ARE victims (of dementia) but it's like to her, the people around her (me and my dad mostly) BECOME the physical manifestation of it.

Thanks,
G.
Hi. Yes. Your feelings are quite normal. My mum has vascular dementia and for the past year my brother and I have watched her slowly deteriorate. She has other serious medical conditions which don’t help and we know she gets very frustrated.
we try our best to help but sometimes we feel more like carers than her children ( I am in mid 60’s ?). Repetitive questions and actions wear us down. But we carry on. I know I have mentioned before that we have a mantra and to be honest it does help. I won’t write it down as it’s a swear word but ..........
Love mum to bits, unconditionally, but at times the nature of the beast within overshadows every positive emotion and I want not be ve with her. Then all is ok again.
it is what it is ??.
 

Snuffette

Registered User
Jan 11, 2021
150
0
You are not alone, this is certainly very "normal" nonetheless, it is a very upsetting situation. Some days I am fine and other days I am hit with terrible feelings of guilt as mum can push my buttons (mum is in care). As explained to me on this group, the carers are much more removed emotionally from the situation therefore easier for them to cope.
 

Hazara8

Registered User
Apr 6, 2015
697
0
Hi,
My mum was diagnosed with Alzheimer's dementia in December. She is still very physically capable but has trouble communicating, and often gets frustrated/angry with me and other family members when we either try to help her find words, or when we don't help enough. She also has quite bad mood swings and can be very uncommunicative. Other times I swear she looks at/talks to me like she hates me. I know it's not 'her', it's the dementia, and other times she is lovely. But sometimes, though I LOVE HER TO BITS, I really, really, do not LIKE her at all. And I know many people have this with family members even if they don't have this horrible disease, but at least if you don't like a family member who doesn't have a condition like dementia, you can blame it partly on them being a flawed human being, just like everyone else. Maybe this isn't fair, but I sometimes feel like dementia is a 'carte blanche' for people to be horrible, even though obviously they are not deliberately trying to be horrible. It's just really hard sometimes. The worst is what I call 'victim mode' when she believes everyone and everything is out to get her, even though we're all (family) just trying to help. It really pushes my buttons, even though logically I know she can't help it.
Is it normal to feel like this? Has anyone else experienced the 'victim' thing? I mean, I know they ARE victims (of dementia) but it's like to her, the people around her (me and my dad mostly) BECOME the physical manifestation of it.

Thanks,
G.
It is very hard to really separate the " dementia person " from the loved one we know so well. The behavior patterns can be extremely convincing and almost tantamount to intentional because the voice is the same as is the face and body from which it emanates. The fact is that this disease of the brain is profoundly complex and one can but reserve judgement on just what it feels like to be the one living with dementia. A fundamental to maintain at the forefront of our own minds is that this condition has no cure and is terminal. That alone commands the kind of compassion we long for when we, heaven forbid, fall victim to a dementia.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
The worst is what I call 'victim mode' when she believes everyone and everything is out to get her, even though we're all (family) just trying to help. It really pushes my buttons, even though logically I know she can't help it.
Is it normal to feel like this? Has anyone else experienced the 'victim' thing? I mean, I know they ARE victims (of dementia) but it's like to her, the people around her (me and my dad mostly) BECOME the physical manifestation of it.
This is an incredibly perceptive observation.
The thing about dementia is that all too often the person with dementia has no comprehension that there is anything wrong with them. In their own minds they are just the same as they have always been. They are usually aware that Something is wrong, but they have no idea that this Something is actually them. So, if its not them, it must be other people around them. Their subconscious will often produce false memories to back up this narrative and, to them, these false memories seem like the real thing, so they are convinced that they are true. Mum was convinced that her ex-cleaner and her friends and then me too, were all stealing from her. She was also convinced that everyone was lying to her and that I was abusing her. Yes, in her eyes, we had indeed become the physical manifestation of her disease.
 

gm1632

Registered User
Jan 7, 2021
16
0
Thank you everyone for your support & understanding. It’s so good to know it’s not just me. I have begun to react to Mum when she gets like this like I would to a customer being rude at work (public library). I try to understand/diffuse first, and will even apologise even if I haven’t done anything wrong. If it escalates, I just walk away. This is hard, but either she will forget what happened or I might get an apology. It’s harder for me to let go and remember to (try to be) compassionate but it’s hard and sometimes I just can’t do it. :/ I think things will be a bit better after lockdown as other family can visit more. She has a great relationship with my aunt (her sister in law) and I think it’s really good for her to be able to talk to someone outside of my dad, me and my sister.
 

gm1632

Registered User
Jan 7, 2021
16
0
This is an incredibly perceptive observation.
The thing about dementia is that all too often the person with dementia has no comprehension that there is anything wrong with them. In their own minds they are just the same as they have always been. They are usually aware that Something is wrong, but they have no idea that this Something is actually them. So, if its not them, it must be other people around them. Their subconscious will often produce false memories to back up this narrative and, to them, these false memories seem like the real thing, so they are convinced that they are true. Mum was convinced that her ex-cleaner and her friends and then me too, were all stealing from her. She was also convinced that everyone was lying to her and that I was abusing her. Yes, in her eyes, we had indeed become the physical manifestation of her disease.
Wow this really struck home. My dad (and sometimes now me) almost seem to have ‘become’ the dementia in my mum’s eyes, while my uncle (her bro) is the Sainted One. But that prob has a lot to do with the fact that my dad and I are in much closer proximity. Plus I think I go into interactions with her sometimes with my guard up and she picks up on it and thinks I hate her so acts out....Trying really hard not to do this and treat every interaction as a new one but it’s hard to learn. I can accept that if I feel attacked, I tend to go on the defensive.
 

Catastrophe

Registered User
Feb 15, 2019
77
0
@Catastrophe I used to worry about that but since dad died almost a year ago I have explored his life through old photo's and memories and I have my old dad back in my memory. Clearing his house slowly helped a great deal as I came across different things that reminded me of how he was before the dementia.
Thank you for the reply, it gave me a lot of comfort. xxx